Days 43-41, May 6-8, 2012. The United States Olympic Training Center at Colorado Springs, Colorado. We were invited, but somehow we feel a bit like the White House party crashers. After we toured the University of Colorado, Colorado Springs with Jimmy in a driving rainstorm, we checked in at the OTC. We were issued top secret identification passes that open every door in the place. Then we moved into our small apartment for the week. There are many cool things here, not the least of which is the cruise ship-like availability of food.
We have twenty paracyclists, four coaches, two mechanics, a cruise ship director and Jean and my Dad. The plan was for Jean to go home with Jimmy today, but Jean knows a party when she smells one. So she and my Dad are both here for the duration of the camp. It’s probably a good thing Jean is staying because my Dad and I are having some difficulty communicating, given my pathetic voice quality and my father’s artillery-induced hearing loss. For example:
Me: [While Dad was feeding me ice cream] “I think there’s enough to share.”
Dad: “Do you know we had to ask the front desk to give us that chair?”
This could become tiresome (and quite possibly dangerous) for both of us before the end of the week, but for having Jean available to interpret.
Today we had our first training rides. During the morning session, where we focused on cornering, I hit the brakes a wee bit hard, my body lurched forward and over the handle bars. A few scrapes and some bruised ribs are all I have to show for it. Well, that and a nickname “Crash.”
I haven’t figured out how to stop the trike and me at the same rate of deceleration. Tomorrow we have some descending on the schedule. I plan to take an anchor with me, or possibly a parachute.
Correction/retraction: in my blog entry about last Saturday’s road race, I arguably implied that Jean may have overdosed me with an anti-anxiety medication prior to my race. The truth is, Jean is typing this entry and demanded a retraction. So, here’s how it went:
Me: “Have I already had Lorazepam?”
Jean: “Yes… No... Maybe.”
Me: “Give me one please.”
Jean: “You might be getting a double dose.”
As you can see, I requested the [second] dose with knowledge of the material facts. Ergo, the overdose was entirely my responsibility.
We now have enough information to finalize our paracycling plans. We will be going to Rome in a couple of weeks, then we will be home for almost three weeks before we go to Augusta for the National Championships. Athletes in every class have a national standard time based upon their disability and the equipment they use. A number of athletes will be selected for London based upon the degree to which they exceed their applicable standard in Augusta. In Montreal my time was 1% faster than my standard. The folks at the USOC expect the athletes who are selected for London to beat their standard times by 5-7%. Roughly speaking, I might find myself in this group if I ride about 1.8 mph faster than I did in Montreal (where I was all wacked out on Lorazepam.)
Day 44, May 5, 2012. Albuquerque High School Sports Update. Abby took third in both the 100 hurdles and the 300 hurdles at the District 5-5A meet today. One personal best and one almost. In the two events, the Bulldog hurdlers went 3-4 and 2-3-4. AHS won the meet by 3 million points. What a fabulous freshman season for Abby!
Days 46-45, May 3-4, 2012. Jean hasn't been reading the blog this week, so we can keep this one between us chickens, okay? I take an anti-anxiety medication called lorazepam before I ride to help control the tremors in my legs. I'm not going to say how this happened (in part because I don't know), but last Saturday before the road race in Montréal I wound up receiving a double dose of lorazepam. This is probably why I was sound asleep in the truck 15 min. before the start.
Albuquerque High School sports update. The Bulldogs baseball season ended last week. For the season, Jimmy's batting average was .348, and his pitching ERA was 1.98. Not bad for a kid who considers himself an artist. Abby will run the finals of the 100 m hurdles and the 300 m hurdles at her district meet tomorrow.
Days 48-47, May 1-2, 2012. A Fair Fight.
Here is a sample of headlines from the Google :
"‘Smokin’ Joe Frazier loses his battle against liver cancer."
"Bill Luffman lost his battle against cancer."
"Royal Marine sadly lost his battle against bone cancer on 4th April."
"Former Chicago Fire PDL Player Patrick Grange Loses Battle with ALS."
No one should ever say such a thing about me, because it wouldn't be true. It would be like saying "the people in the twin towers lost their battle against Al Qaeda". The battle to survive ALS can't be won. No one, anywhere has ever come out on top. It's an unfair fight – a sucker punch in a dark alley – worthy of nothing more than a casually-hoisted middle finger.
Sure, we will continue to pray for a miracle cure, but… back to the advice of Buddha: "suffering comes from resisting what is."
Where we do stand nose-to-nose with ALS is in a fight to keep living while we have ALS. ALS wants us to sit down, shut up, stop moving and stop communicating. That won't do for our family. That's why we get up, go out and live, love and give every day. That's also why I will be racing that ridiculous tricycle on both sides of the Atlantic this summer.
One more thing. On that day – hopefully a long time from now – when ALS comes for my last breath, I'll just go ahead and give that one to Jean. Psych!
Days 51-49, April 28-30, 2012. Montréal was nothing if not intense. It was cold, wet, windy, chaotic, emotionally shocking and soothing, exciting, funny, sad, confusing, and – overall – a great time. We learned I have become an essentially useless travel companion. Jean had to do everything – herd the luggage, handle airport check-in, security and customs, drive the car, build, tune and fret over the trike, and – this was the real slap in the face – get her own coffee. We had a great visit with our dear friend Andy Kain, who drove half way across Canada to spend the weekend with us and give Jean a bit of a break from her coaching and wrenching duties. We made some new friends and thoroughly enjoyed the vibe of para cycling, which is very much like mountain biking, except all the legs are shaved and the UCI-approved bikes included a stew of amateur welding and fiberglass, duct tape, gorilla glue and – I swear I'm not making this up – a broom stick.
We arrived at the hotel late Wednesday evening, which gave us about 12 hours to eat twice, build the bike, sleep and get our brains wrapped around what we were likely to face at Thursday morning's classification evaluation. Jean put the finishing touches on the trike at about 2 AM, then took it for a test ride down the hall, to the elevator and back.
Classification was intimidating but took only 20 min., and the evaluators were kind and gentle and we left with the result we believed was fair.
Thursday afternoon, Jean went for a run while I took five laps around the race track to get used to its twists and turns.
As I mentioned yesterday, the time trial on Friday went great. Qualifying for the US National Team was the best-case result for the weekend. My performance, however, didn't make for flattering pictures because the cold weather combined with the weak muscles in my mouth and face to make it very difficult to spit phlegm to a location beyond my actual face.
Saturday's road race was essentially a repeat of the time trial. I had hoped to gain some experience in a tight pack of trikes, but that went out the window at the start. Less than 10 seconds into the race, there was a crash in front of me. I swung wide around the mess, and by the time I looked up, the three lead riders were gone. I chased them down over the next mile and almost made contact with them, but I lost them in a chicane, so I had to chase again, and the same thing happened at the next set of turns. After that, I was alone with my thoughts and my video camera. Click here for the You Tube of the important part of the race. Listen carefully at the very beginning as a race official ruthlessly enforces the no on-board filming rule… Next time.
The time trial was three laps; the road race was four. In the road race I came through the third lap 3 seconds faster than I had the day before in the time trial. With about 2 km remaining in the fourth lap, I choked on some phlegm and went into an upper airway spasm that forced me to stop pedaling for about a minute. Otherwise, the road race was uneventful. I was the only T-1 in the road race. As you will see in the YouTube, I seemed to have the gas to hang around with the T2 racers early in the race, but I clearly don't have the cornering skills to allow me to gracefully suck wheel. That will be the focus of my effort at the Olympic Training Center next week.
The highlight of the return trip was when Jean got in a fist fight with our GPS while trying to navigate a maze of construction at the Montréal airport. Before ultimately finding her way to the Hertz return location, she found herself (twice) on a highway headed for the Yukon. Meanwhile, I was sitting at the American Airlines ticket counter sipping on a Bloody Mary.
Days 53 and 52, April 26-27, 2012. This will be primarily informational. We will have more detail and funny moments (including that time when our friend Andy Kain, a one-time Bermuda National road race champion, gave me his strategic recommendation for handling a particular competitor in tomorrow’s road race… “Cut him off”.)
In February 2011, I opened this blog with the words “Yipee/Oh Sh*#”, in reference to the conflicting emotional reaction racers have when they find out they have been accepted to ride the Leadville 100. Thursday we had another “Yipee/Oh Sh*#” moment when the UCI classification panel invited us back into the exam room to tell us “T1 – that’s what we call you.” (The competitive demands of the T1 class are quite low, but that makes sense because the T1 are the most disabled people in all of paracycling. That we find me in a class in which I can credibly compete is, as Jean was quick to point out, yet another freaking silver lining.)
My time in today’s Time Trial was 29:28:66, and I was out of the car for about 29:58:66 because we had 37 degrees, heavy wind and even some snow. My warm-up consisted entirely of turning my pedals backwards while Jean held a coat around me as we waited for the rider in front of me to start. While the conditions were not ideal, the result was a happy one. My time was faster than the qualifying standard for membership on the US National Paracycling Team, and good enough to earn a bronze medal in a complicated scoring system, covering several different classes of athletes.
Steak for dinner; road race for breakfast.
Days59 -54, April 20-25, 2012. Over the past 48 hours, Montréal has had rain, ice and snow. What could that mean? Obviously… it's business time.
We leave for The Great White North in a few hours. The trike is packed and in the truck, which was no small feat. We have six wheels, which allows American Airlines a 50% rate of destruction and I would still get to race.
We have the ZIPP wheels rolling. They are faster, lighter, and look oh-so-cool. Click here.
Tomorrow morning at 9:20 AM, I will spend 20 min. With three people who will assign me to a classification for competition. In essence, they decide whether I will be "fast" or "slow". Either will be fine with me.
Friday evening, if the track has been plowed, I will race a 13.2 kilometer time trial. Regardless of my result within my competition, this can determine whether I qualify for the US National Team. There is a qualification standard expressed as a time per kilometer. If I go faster, I'm on the team; if I goes slower, I'm not on the team, but I can try again. This does not determine whether I will go to London for the 2012 Paralympic Games. The London team will be a subset of the members of the US National Team as it stands after the US National Championships in Augusta at the end of June.
Saturday morning there will be a short road race on the same Formula 1 race track as we will use for the time trial.
Game on! Now, where's my walker…?
Days 61 and 60, April 18 and 19, 2012. Here's a depressing exercise. Make a list of all the physical "impairments" you might have 40 years from now as compared with your current condition. Then imagine a neurologist, younger than some of your shoes telling you everything on the list would happen in about two years. In preparation for my first para cycling competition, I had to put together a list for UCI of my impairments, how they affect me on the bike, and what adaptations I have made to work around the problems. The list looks like so:
Effect on cycling and adaptations
As my upper body position moves away from vertical, I have increasing difficulty holding my head up.
Cannot maintain an aggressive forward position for time trial or road racing. Adaptations. (1 ) I have added an adjustable stem to raise the bars, (2) I use a flat mountain bike bar in lieu of traditional road bars, and I do not use time trial bars, (3) I use a bungee cord support device as pictured below.
To avoid aspiration or coughing episodes, I must chew slowly and swallow multiple times.
For rides over 90 min., I stop to eat or drink; for rides under 90 min., I eat and drink before I ride.
At higher levels of effort, my throat seems to collapse when inhaling.
This is a relatively new development that does not affect me when riding a recumbent, which leads me to believe the solution lies in upper body positioning. I am hoping to control this problem with modifications to some of the adaptations described in "neck weakness" above.
For example, I cannot fully extend or flex my fingers or thumbs, and my grip strength and dexterity are greatly reduced. I cannot hold a pen or type on a keyboard, and I cannot feed myself or get dressed without assistance.
Shifting, braking, and maintaining an adequate grip on the bars. Adaptations. (1) I use electronic shifters mounted horizontally to enable me to shift with knuckles rather than fingertips, (2) the pulling force required to fully engage the two rear disc brakes was too much for me, so I have repositioned the rear brake lever to allow me to push on the lever rather than having to pull on the lever, (3) "winged" grips.
Arm, chest and shoulder weakness/atrophy
For example, I cannot lift my hands over my head, brush my teeth or hair or lift anything over 1 pound with my biceps. I cannot perform a push-up.
Balance, steering and acceleration. Adaptations. (1) I use a wider, flat mountain bike bar in lieu of traditional road bars, and I do not use time trial bars, (2) I do not/cannot stand out of the saddle to accelerate, climb or sprint.
For example, I cannot lift my leg over my trike top tube or saddle.
I cannot mount or dismount my trike without assistance, and my climbing power is reduced.
Gluteal and hamstring weakness
For example, I have difficulty getting into or out of a chair.
My left quad has observable and measurable atrophy and approximately 30% less strength has compared to my right.
Uneven pedal stroke and reduced power.
Spasticity of legs
For example, my gait is clumsy/ataxic and slow. I have fallen three times in the past 10 days (unrelated to cycling). I have begun using a walker.
Uneven pedal stroke and reduced power.
My legs shake/vibrate/bounce uncontrollably from the ankles when my calves are lightly engaged.
Cadence is disrupted and jerky. Vibration can affect control of the machine. Reduced power. Adaptations. (1) reduce cadence to approximately 60 RPM, (2) when pedaling, change from flat foot position to pointed toe (fully engages calf muscles to control reflexes), (3) when coasting, slide aft on saddle and fully flex ankles (fully extends calf muscles to control reflexes).
For example, difficulty walking, standing or transferring from a seated, standing or prone position.
All aspects of cycling. Adaptations. (1) tricycle instead of bicycle, (2) I use a wider, flat mountain bike bar in lieu of traditional road bars, and I do not use time trial bars, (3) I use mountain bike pedals and shoes because I cannot reliably walk on elevated cleats.
Intelligible with repetition. Because I cannot type, I control my computer with a voice-recognition program. With my deteriorating voice quality, the program has become less accurate and I have begun training on a piece of equipment that controls the computer by tracking the movement of my eyes.
No effect on cycling .
Decreased vital capacity
A number of different devices have been used at the hospital to measure my vital capacity. The most recent ratings have been 80 % to 85%. I do not, however, experience shortness of breath outside of exercise.
If I had created such a chart 2 1/2 years ago, it would have looked like this.
Some days I feel like Kevin Bacon in "She's Having a Baby"when, spooked by the pace of changes in his young married life, he envisioned himself strapped to a rocket sled full of explosives scorching its way toward a concrete wall. When that happens, I try to remind myself how lucky we are. Patrick Grange went from first symptom to gone in a bit over a year and a half. My first symptom was nearly 4 years ago. I spent three hours yesterday sipping Diet Coke and watching Jimmy play baseball. Today, my rocket sled has a shiny set of Zipp wheels on it, and I'm going to be focused on final preparation for my first-ever international bike race. And, as if that weren't enough, I am surrounded by family and friends, the Social Security Administration sends me a check every month, and I can wear boxer shorts all day, every day.
Jean is in Illinois this week visiting her mom and the Marys, so mom has been my coach, chief mechanic and chauffeur, shuttling me to training locations, making last-minute bike adjustments and keeping my weight up with cinnamon rolls and ice cream. Today, we are headed to the balloon fiesta park to test out the Zipps. Oh yeah.
Days 63 and 62, April 16-17, 2012. This is the part of "Rocky" where Balboa mixes breakfast drinks with raw eggs and runs through the foggy morning on the railroad tracks while punching furiously at mosquitoes. We have not yet gotten to the part where he sprints triumphantly up the steps of the Philadelphia Art Museum. What I mean by that is the trike is beginning to feel more like a bike and less like a rodeo bull. I have made a handful of turns with my speed in double-digits. When the trike leans with the camber of the road, I don't always suck every molecule of oxygen from the surrounding air and go into a head-to-toe fit of shaking. I am a long way from comfortable, but making progress every day.
After each ride I find myself doing lots of math, trying to decide how fast I am in comparison to the standards for qualification for the US Paralympic Team. And every day I come to the same conclusion – "it depends". The big variable is what sport class is assigned to me, T1 or T2. The classification criteria are as clear as mud. The only objective criteria is the score on a strength test, but that is deceiving because what UCI has done is taken a subjective test of muscle strength commonly used by physical therapists and created their own objective scoring system that is a secret. So not much help there.
An interesting aspect of the classification system is a "performance observation" last look. So an athlete may be provisionally classified by the examiners but be re-classified after blowing the doors off the competition. This "proof in the pudding" criteria appears to be fairly rigorously applied at the international level. It is unusual to see international results where the winner of T1 was faster than last place in T2.
I have watched lots of video on the You Tube and concluded I am much more like the T1’s than the T2’s. The times I am riding in training suggest I can be competitive in T1. In T2, not so much. For now, I will hope my assessment of the classification system as applied to me is that it is fair. If I wind up determining it is, in fact, bogus and sad, the thing to do is set different goals and ride as fast as I can. That, or ride very slowly wearing a rainbow-striped UCI world champion’s jersey spray-painted on the back with "Kiss my ALS!" I'm just kidding. No I'm not. Yes I am.…
Yesterday at the balloon fiesta park.
New "suspender-style" design for head holder prevents waist belt from digging into the diaphragm.
The trike at its finest – creeping through a 90° turn.
Days 65 and 64, April 14-15, 2012. Abby was confirmed in the Catholic Church this weekend.
As part of the celebration of the Easter season, this might be an appropriate time for a couple of additional reflections on suffering to supplement the April 4 entry.
By providing a contrast to times of joy, suffering reminds us how much joy there is to be found in joy. This reflection was so cruelly distilled from eloquent comments from Beth German I probably shouldn't associate it with her. So I won't.–
I failed to mention the Jewish perspective. As Andy Schultz reminded me, the Jewish people " have been faced with the almost insurmountable task of affirming their covenant with God while recognizing that the same God of Sinai -- the God who delivered his people and gave them an everlasting future if only they would believe -- is also the God of Auschwitz." I guess this gives them standing to comment on the topic.
In When Bad Things Happen to Good People, Rabbi Harold Kushner wrote:
I believe in God. But I do not believe the same things about Him that I did years ago, when I was growing up or when I was a theological student. I recognize His limitations. He is limited in what He can do by laws of nature and by the evolution of human nature and human moral freedom...
The painful things that happen to us are not punishments for our misbehavior, nor are they in any way part of some grand design on God's part. Because the tragedy is not God's will, we need not feel hurt or betrayed by God when tragedy strikes. We can turn to Him for help in overcoming it, precisely because we can tell ourselves that God is as outraged by it as we are…
Let me suggest that the bad things that happen to us in our lives do not have a meaning when they happen to us. They do not happen for any good reason which would cause us to accept them willingly. But we can give them a meaning. We can redeem these tragedies from senselessness by imposing meaning on them.
The question we should be asking is not, "Why did this happen to me? What did I do to deserve this?" That is really an unanswerable, pointless question. A better question would be "Now that this has happened to me, what am I going to do about it?"
Good point, Rabbi.
Day 66 April 13 , 2012. Albuquerque High School sports update. Our girls’ shuttle hurdle relay took third place at the Albuquerque Relays. Not bragging, but Abby ran the fastest leg for AHS. See the race – click here (the Bulldogs are in white and green; Katie Jackson leads off, followed by Lizzie, Abby and Angelique).
I'm going to go ahead and just call this a silver lining. Law school friends Tom Power and Mark Carver are visiting this weekend. A James Bond movie will one day be scripted about Tom's White House staff experience in the intriguing world of band width. Mark's practice is as Bond-like as a real estate transactions practice can be in Nashville (without actually involving municipal bond financing, of course).
Friday evening we were gathered around the dining room table sipping wine (which I will come back to), and sharing stories while listening to quiet classical guitar. That part lasted about 5 min. Then, inspired by the presence of out-of-town guests, a steady stream of vodka and/or port and/or rum-drenched neighbors began slithering through our living room. This part lasted for many hours and included one particularly enthusiastic friend who had no doubt substituted vodka for dinner at a museum fundraiser. In a tighter-than-skin dress, this person (whose name isn't necessarily "Amy", but definitely rhymes with "Amy") was in character as Svetlana, a Russian figure skater. The atmosphere was ideal for Jimmy on the eve of his ACT test.
Day 67, April 12, 2012. No more asterisks. John Blueher and I went to the bike path on the Rio Grande today. The few turns and short climbs were slow, my legs shook a lot, and hanging on to the bike is a challenge, but my overall time for a 20 km time trial was fast enough to meet the qualification standard for some level of the US Paralympic team regardless of whether I am classified as a T-1 or a T-2. I am only going to say this once because it sounds kind of whiny, but I am going to say it – safety was not the primary consideration when UCI decided to put the most disabled people in para cycling on the most dangerous bicycle-like machine ever invented. I'm just sayin’…
Day 68, April 11 , 2012. We went to the ALS clinic at the University of New Mexico Hospital for my quarterly checkup today. My lungs and diaphragm are holding steady. My balance is not. This is a picture of me after the appointment.
Does anyone have contacts at "Pimp My Ride"?
Day 69, April 10, 2012. Albuquerque High School sports update. Jimmy pitched his first complete game in a 7-3 win over West Mesa High School!
Patrick Grange played soccer for the University of New Mexico. Since then, he has been "Coach Pat" to kids throughout the area. His first ALS symptoms appeared in the summer of 2010, about the same time as I was diagnosed. Pat was diagnosed in November 2011, and passed away today. He was 29. ALS sucks.
Day 70, April 9, 2012. He's up. He's down. He's up. He's down. He's up. He's down. He's up. One of those days. I rode a short sprint workout on my way to track practice. The good news was my head holder-upper device definitely helped with the breathing issue. The bad news – I can't stop the trike. As I descended from the bridge down to Albuquerque High School, I realized I did not have the grip strength to bring my speed under control before the stop light. Fortunately, I a green arrow just before I blew through the intersection. But I was too hot in the corner, and I hit the curb on the far side and went down on the sidewalk.
No damage to the trike, and only scrapes on my right side. I didn't think I hit my head, but my helmet would beg to differ.
The post-not-mortem of the crash revealed two fixable problems. If you Google "what happens if I use carbon brake pads on aluminum wheels?", the World Wide Web will tell you "you don't stop." The surface of a bike wheel must be compatible with the material in the brake pads. My bike came with carbon wheel brake pads, and my Zipp wheels are carbon; however, while the wheels are being built, I am using an aluminum wheel. So, that explains why squeezing the front brake lever produced a hissing sound but no significant reduction in speed. The two rear wheels are controlled by disc brakes activated by a single cable connected to a single lever. It takes about twice as much strength to operate two brakes as it does to operate one, and I have about one quarter the strength I need to operate one. This, as it turned out, this was another recipe for producing a hissing sound and not much else.
The fix for the front wheel is obvious enough. For the rear, I have changed braking from a pulling operation to a pushing operation by flipping the rear brake lever to the other side of the handle bar so I push the lever toward the bar with the palm of my hand instead of pulling the lever toward the bar with my wimpy fingers.
Before (pulling) After (pushing)
With my nerves somewhat frayed by the crash, I fell two more times (walking) in the next hour – into a porta potty I was leaving, and against a fence at the top of the stands at the baseball field. Each time, however, I got up. And I fully intend to continue doing that.
Day 71, April 8 , 2012. After a delicious Easter brunch on our back porch, I went out for my second ride on the trike. I'm still quite anxious about control of the machine, so there was "a whole lotta shakin’ goin’ on." I also discovered a new problem – my throat closes up when I inhale at a fairly high level of effort. Read that one I again. Very handy as I prepare for a time trial – the "race of truth"… I'm hoping the issue is a neck thing that will be helped by wearing my head holder-upper thing. Stay tuned.
Day 72, April 7, 2012. Albuquerque High School sports update. The struggling Bulldog baseball team put together a complete game today, taking down Highland High School 5-4 in extra innings. Jimmy drove in two runs to send the game into the eighth and decisive inning.
You Tube it by clicking here. You will feel like you were right there. Next to Jean. Trust me.
On the University of New Mexico track, Abby slashed 1.1 seconds off her previous personal best in the 300 m hurdles, then put in a solid effort in her first high hurdle race. Click here for the You Tube. Abby is the first runner you will see with a white singlet and green shorts.
Day 73, April 6, 2012. John Blueher came over this morning with some tools and his bike for a 9 AM ride. Off like a herd of turtles at noon. The maiden voyage was challenging, but not for the reason I had expected. The unnatural lean of the trike with every elevation change on the road was not as creepy as I had expected. Cornering was likewise. Nonetheless, my general anxiety triggered a higher-than-normal activity of my reflexes. My legs shook the entire bike to the point it was difficult to maintain a grip on the bars. The whole experience was a white knuckle affair for the first hour. By the time we arrived at the Balloon Fiesta Park, however, I was beginning to calm. We rode three laps of the Park. Not as fast as on the Vortex, but very close. A very successful effort. Climb aboard the You Tube for one lap. Click here.
In all the pre-ride excitement, we didn't think to put on my head holder-upper thing. Oopsie. By the time we finished at the Park, my head was beginning to sag. That shouldn't have been a surprise. I've had this problem on long rides on up right bikes for almost a year. By this time, we had been out for over two hours. The 9 mile trip home was exhausting, and I was worthless the rest of the day. Tomorrow we have track, baseball and soccer, which is to say I have a wonderful excuse for a rest day. The trike is amazing. I have a long way to go in the three weeks before my first race, but I can get there. Hopefully I can do it without any more three-hour days on the trike.…
Day 74, April 5, 2012. Trike delivery day. The day began and ended with good news. My work out was on an indoor bike at the health club. Nothing fancy – the kind of exercise bike found in hotel fitness rooms. It has a power meter which reads in watts. Roadie power nerds are now rolling their eyes. True, this device is not as accurate as the $2500 SRM units roadies put on their bikes, but (a) they are consistent, and (b) I still have my $2500 (well, not really, as I have a trike conversion axle). So, using the same health club bike as I did a year ago, I repeated my previous work out with six intervals of 5 min. with a five-minute rest between each.
April 23, 2011
April 5, 2012
Zach delivered the trike at Sport Systems this evening.
Tomorrow we ride.
Day 75, April 4, 2012. On the topic of suffering. I have written previously of the Buddhist teaching that suffering comes from resisting what is. I heard that originally from our friend Anne Thomas . It's not that I don't trust her, but it's Holy Week, so I thought I should do some more reading on the topic.
As it turns out, the mainstream Buddhist verbiage is "suffering comes from resisting reality", but yoga instructors are still free to say "suffering comes from resisting what is." As I scratched a bit more deeply, I discovered this concept is shared by many religions. An important tenet of Christianity is to echo Buddha but use way more words. Thus, an Episcopalian minister, priest, shaman or whatever they are called recently gave a sermon in Albuquerque as follows:
Whether we suffer in crisis, in empathy with another, or in the everyday struggle of being human, when we stop fighting or avoiding it and let it in, it has a way of transforming us. It simplifies and clarifies us. It softens our heart and makes us more human. And it settles us down in the miraculous present with God.
What I was formulating in my mind as I found this concept in branch-after-branch of Judeo-Christian religions, hedonism, non-specific universality, and the music of Bob Marley was a One Love/we are the world message. Then I got to Islam. According to one scholar:
In Islam, there are two views of suffering, both of which resemble views held by its sister faiths, Judaism and Christianity. Suffering is either the painful result of sin, or it is a test.
In the latter view, suffering tests belief; a true Muslim will remain faithful through the trials of life. But suffering also reveals the hidden self to God. Suffering is built into the fabric of existence so that God may see who is truly righteous. In other words, God not only allows the various agonies and struggles of life, but has a purpose for them. Suffering opens up the soul and reveals it to God. God uses suffering to look within humans and test their characters, and correct the unbelievers.
I think if I believed in such a god, I would politely tell him he could "kiss my ALS" and start interviewing for a new one.
As this didn't fit with my One Love thesis, I continued reading and learned that there are several schools of Muslim thought on the issue (Mu'tazilite, Ash'arite, Maturidite or Traditionalist), none of them necessarily refuting the notion that troubled me. My favorite passage was written by a brilliant commentator who used this whirlwind of words to completely dodge the issue he had been discussing for the previous two pages.
Muslim theologians summed up this dual reality in the notion of living life between the two poles of hope and fear -- hope that the irresistible choices of an all-powerful God would be ultimately tempered by mercy, compassion and love, and fear that they might not. Of course, the very notion of fear is a major problem for religious discourse today, as "organized religion" has so notoriously used it to exploit and subjugate believers. But just because one is paranoid does not mean that one is not being followed. In the end, we are all afraid, if not of God, death, and eternal damnation then of the earthly Hell of loveless objectification, disrespect and nobodyness, a fear that can subject us to régimes of fantasy and exploitation no less debilitating, and no less blasphemous, than religious tyranny and treachery.
Then it got worse as I encountered Christian expressions focusing on suffering as a punishment for sin. Admittedly, most of what I found emanated from places where the pickup trucks and the state house still fly the Confederate flag.
I am willing to accept the judgment that I have been a jerk, but I think it should take a lot more sinning to be branded such a rat bastard that I deserved ALS. So I gave up on my One Love theory, and I have fallen back on Buddha and my favorite Catholic priest.
If suffering comes from resisting reality, it seems to me the resistance can take the form of three familiar Zen-suckers: denial, anger and depression. I feel like I have a decent handle on denial. I have ALS. For me, denial takes the form of something trivial making me think I am getting better. This persists despite my knowledge that no one has ever recovered from ALS. For me, anger only rarely rises above frustration. I know I won't get to the end of life and regret I didn't spend more time pissed off. Depression remains perplexing. In my most rational moments, when I know I will have to defy the odds to ever taste the seniors menu at IHOP, I have flashes of simple clarity. Priorities are easily sorted. Goals are readily identified. And it's very, very easy to justify waving off the green vegetables.
Day 76, April 3, 2012. Metric conversion. After this weekend's racing, our team leader, Damian Calvert, sent out a communiqué to our team sponsors reporting on a truly dominant team performance by Sport Systems Mountaintop Cycling. Unfortunately, he included the following description of my time trial:
Our teammate Doug Schneebeck (Race Director for OSO High MTB race, great guy who got ALS, strong family man, etc…) had the best run of everyone on Sunday in the Time Trial. He scorched the 15km course averaging 29.9mph!! Now you go out and try to ride that fast for 20minutes…
The record had to be set straight.
Oh dear. There has been a misunderstanding. As I prepare for my first para cycling competition, I have gone completely euro-metric. All data in para cycling is expressed in metrics. Most importantly, the qualifying standards for the US team are minutes per kilometer in a time trial. Consequently, I am no longer six-foot one, 165. Instead, I am 207.3, 72. In my dreams, I speak only French (with a heavy drunken slur). I am preparing our 2011 taxes in British pounds sterling. Before we leave for The Continent, I must have a pair of man-pris and silky-smooth legs. I consider the greatest debate in philosophy whether the glass is 0.5 full or 0.5 empty. Of particular moment for this e-mail, my Garmin now displays data in metric units.
Rewind to Sunday. I wanted a benchmark time I could compare against the US team standards. The Vortex is a recumbent trike, which is soooo not allowed in para cycling events, but I have a decent idea how my times on The Vortex should translate to an upright trike. So I asked Silvio to set my turn for a 15 km course for two reasons. First, 15 km is probably the most common time trial distance in para cycling. Way more importantly, however, I know that frontage road well enough to know that I could avoid most of the climbing on the course by turning back 2.5 km before the rest of you. The Vortex climbs like a rhinoceros with a tranquilizer dart in its ass, so a more tame course would be important for my self-esteem.
After crossing the finish line, I spun out a relaxing 65 meter cool-down, then stopped at Damian's truck, where he, Justin, Marty, Jonathan and Jens were gathered, sipping recovery drinks and chomping on tumbleweeds. While I slobbered and wheezed, Jean offered me a Diet Coke and a Hostess Apple pie, and Damian reviewed the Garmin, reporting (out loud) my time as "29", and my average speed as "30". In my hypoxic state, it did not occur to me to make sure everyone knew I had ridden a short course and that my speedo was speaking in KPH. Converted back into American units, that's 18.6 mi./h. Glad to have that off my chest.
The new UCI-compliant trike is in, and the boys at Sport Systems are building up the wheels today. No more asterisks.
While I could average 30 mi./h in a time trial on the Vortex, the starting line would have to be the edge of a cliff, not the frontage road beside Interstate 40.
Day 77, April 2, 2012. Trykit Conversions delivers! Maureen Bannon, Paul Mohr and Jimmy Schneebeck assemble! Now we only need the wheels built!
Day 78, April 1, 2012. The Adoption Exchange Classic. A 15 km time trial. In my most optimistic moments, I had imagined doing this on the new UCI-compliant trike. Realistically, however, I knew that was unlikely. So it was me and the Vortex. For the visual effect, I decided to wear the sperm hat.
Cute, but I should have tested that idea with The Vortex before warm-up. With the hammer down, I discovered, my head would roll back a bit, causing the helmet to get caught on the head rest. With the aerodynamically-tapered end of the helmet pointing down, and the front of the helmet tilted skyward, the overall effect was similar to that of a parachute. Visually, aside from the absence of a toothy grin, my upper body dynamic was all about Stevie Wonder.
The course had about as much climbing per mile as I will have at nationals in Augusta, and I'm hoping my UCI trike will be faster than the Vortex. The wind was blowing. The sun was in my eyes. My sperm hat was a wind sock. And I got pulled over for speeding just before the finish…
Even with all those excuses, my time would have been a credible para cycling race time if it had occurred on a UCI trike. Similarly, of course, if a frog had wings, he might bump his ass when he hopped through a door. I recognize the complexity of this analogy. What I meant was Sunday's time trial was run on a recumbent, not a UCI trike, so the time didn't mean jack. But it sure was fun.
Day 79, March 31, 2012. Another new event for Abby – the 100 m hurdles. Four -stepping all the way. Very smooth.
Day 80, March 30, 2012. Good news from England. My conversion axle has been shipped and should arrive Monday or Tuesday!
Good news from the US Paralympic Team!
Congratulations! On behalf of the U.S. Association of Blind Athletes, Disabled Sports USA, U.S. Handcycling and U.S. Paralympics, I would like to invite you to the May 7-14, 2012 Cycling Development Camp [at the US Olympic Training Center in Colorado Springs].
We are pleased to offer you a week of race training, presented by staff with many years of racing and coaching experience. You will be attending one of the most prestigious training facilities in the United States. You have much to be proud of and much to look forward to as you prepare for camp.
Oh yeah! I sure hope I can ride that trike…
Day 81, March 29, 2012. Down again. This time I was at Abby’s track meet. I knew it was a bad idea to write, as I did two days ago, that all my falls had been backward. This time I was standing on an asphalt apron beside the track, leaning against a cinderblock wall talking with Jean, who was on the other side of the wall. One foot slipped on some gravel, and down I went.
If you have ever wondered what sound a human skull makes when it hits pavement, I can check that one off your list. It sounds like a wood bat hitting a softball. A long fly ball, not a grounder.
Over very last year, I have smacked my helmeted melon on all manner of mountain biking hazards and what ever was under the ivy beside that road in France that led to this. For some time, though, I have worried about the day when I would bash my head on something less forgiving than carpet. Now I can cross that one off my list, too. My head hit a nasty mix of gravel and asphalt just above my left temple. For good measure, it bounced and hit a second time.
Jean said bad words real loud right there on public school property, as she vaulted gracefully over the wall in her high heels. She had come to the meet from her office and was wearing a low-cut-hint -of-sleaze-but-business-appropriate top. As she bent over me, holding my head in her hands surveying the damage, something made me smile. I hadn't died. I hadn't lost consciousness. And I wasn't having blurred visions of demonic gnomes flipping cars and looting and torching businesses in Manhattan. Everything was going to be all right.
Now I can go back to worrying about vampires, mummies and why the president making nuclear promises to the Russians he won't tell us about until after he is reelected (click here).
Day 82, March 28, 2012. Didn't I say ski season was over? Paul Mohr called to invite me on a skinning expedition up Sandia Peak. What this means is you put on downhill skiing gear that is modified to allow your heel to be locked down or free to move. Then you attach a piece of material down the full-length of your skis that looks a bit like the stiff side of Velcro with all of the pieces facing backward. These "skins" provide enough traction to allow you to walk straight up a snowy mountain. Of course, it makes no sense to do this if your mountain (a) has lifts that (b) work.
In certain parts of the world, there are mountains to be skinned and skied year-around. New Mexico is not one of those parts of the world. In New Mexico there is a very fine line between ski season and mud season. Today, we found ourselves on the wrong side of that line. On the plus side, we never got cold and we had some good laughs. As it turned out, when I said ski season was over two weeks ago, it was over.
Days 84 and 83 , March 26-27, 2012. The Fear of Falling. Before last night, my most recent fall had been Super Bowl Sunday (in line at U.S. Customs in Phoenix – a very private moment).
My hamstrings have developed spasticity. What that means is, when I voluntarily extend them, they react by involuntarily contracting. So my body is fighting itself when I walk. This makes it literally possible to take one step forward and two steps back. I am a character from Dr. Doolittle
When I am focused and thinking clearly, my brain can deliver effective instructions to proceed forward that overcome Satan whispering "retreat" to my hamstrings. At 1:49 AM last night, I was neither focused nor thinking clearly when I got out of bed to dispose of some diet Coke. I stepped forward, Satan countered, my hamstrings rebelled and I fell backward as if I had been punched in the face. As far as falls go, this one wasn't bad. My back hit the (rounded) corner of an old-fashioned school desk, and I bounced off that and onto a pile of pillows on the floor. The impact with the desk knocked the wind out of me, but that always makes me feel more alive.
Interesting fact: the half dozen domestic falls I have taken have all been backward. If the hamstrings are the culprit, maybe when my quads become spastic it will be impossible to knock me over. Always look on the bright side of life…
Day 85, March 25, 2012. So my new favorite hurdler has one race under her belt. It was a nearly perfect first effort. The high school 300 m hurdles consists of eight hurdles, each 35 m apart. Abby got out well from the gun. She felt what it's like to lead a race – the chaos of the competition disappears, and it's just you and your lane. She held the first position until between the third and fourth barriers. Then she got a taste of the training demands of the race, as she faded to second in her heat and sixth overall. Most importantly, she had a big smile on her face while she wheezed at the finish line.
Days 90-86, March 20 -24, 2012. Track. It was the first thing I was any good at in high school other than class work. I wanted desperately to be good at football (for long discussion, click here), but my only marketable football skill was kicking. By the time I entered high school in 1974, the large men in the NFL with names like "Groza" who kicked footballs the way God intended – straight on, the way you kick a copier or printer – had become dinosaurs. They were being replaced by a little swarthy European men with names like "Stenerude" who sneaked up on the ball from the side, in fear, apparently, that the ball might kick them back. As this was not cool, I told no one at Chantilly High School I could kick.
Through my junior year, it appeared I was kind of fast. Prior to my senior year, Chantilly moved to a new district and it became clear that "fast" had been only in relation to white kids. See photo.
From the left, me, Andy Shirley, and – yes, I still remember this because I am a boy – Charles Denny.
Nonetheless, I kept at it. While I was not recruited by any college, and while I was unwilling to compromise my college choice for the sole purpose of running in college, I figured if I showed a strong work ethic a coach might keep me around long enough to realize I could boost the team GPA. I think that's pretty much the way it went for four years. My marks of distinction as an NCAA athlete were two:
- I earned a varsity letter as a junior when a very fast man from George Mason University went facedown on the track over the 10th hurdle (and stayed there), allowing me to pick up the one point awarded for sixth place in the conference meet.
- I was JMU’s team captain as a senior, but – let's be frank now – I was the only senior on the team.
Nonetheless, I kept at it. I continued hurdling until I was in my mid-40s, which I don't recommend for a lengthy list of reasons. Along the way, I started coaching as a volunteer a couple of days a week. Five years with local high schools, then 10 years at the University of New Mexico. This is my second year back at Albuquerque High School.
Throughout my years in track, Edwin Moses has always been my favorite hurdler. From 1976 to 1988 he was undefeated in national and international-level competition. Over 120 consecutive wins against the best in the world. He set and re-set the world record several times and won Olympic gold twice (would have been three if Jimmy Carter hadn't gotten confused about the relationship between the Olympics and politics in 1980). In the midst of the streak, Moses was asked whether, after years of domination, he even got nervous before his races. Moses responded "every summer I feel like I am being led to the executioner 13 times."
Today, my new favorite hurdler is wearing her green Albuquerque High uniform, preparing for her very first race. And I feel like I am being led to the executioner.
1975. Note the Run-DMC shoes. 1979. Hint: I am not alone because I am winning.
1982 with my friend John Bowser (at practice). 1981. More white guys.
2003. New Mexico's hurdlers. 2005. My last race.
Day 91, March 19, 2012. I retired from skiing yesterday. I think. There was quite an emotional scene in our mud room as Jean, Jimmy and Abby were helping me get my stuff off.
Every day of the year, at least one skier dies when he or she slams into a tree, a lift tower or the guy on the left in this photo (click here). You don't hear any of them whining about not being able to ski again. I must be able to do better.
My first trike race will be in Montréal. I was curious how many corners there would be and how technical they would be, so I looked up the course. Three laps around this (click here). No joke.
Days 93-92, March 17-18, 2012. The most objective measure of skiing volume or endurance is the vertical foot. Obviously, the volume/endurance equation has an important subjective component as well (for example, as the slope’s degree of pitch increases, a vertical foot is initially very easy to ski, then progressively more difficult until it reaches 90°, at which point skiing becomes very easy again…), but we work with what we have. And what we have is the watch that measures vertical feet and counts the number of lift rides.
For years, Jimmy and I have kept track of our vertical feet skied. Our biggest season was 754,000 feet (unimpressive if you live in a conversion van in the parking lot of the Super Walmart between Aspen and Carbondale, but very respectable if you have a day job or go to school), and our biggest single day was 39,270 feet. That's a big number no matter who you are.
If 30,000 feet is an epic day on skis (and it is), then 40,000 feet is a mythic day. 40,000 feet represents a triumph over the elements, equipment problems, lift lines and the desire for warm food. It means you managed to get on the first chair in the morning and the last chair in the afternoon. It means your lunch was stashed in your pocket and eaten on a lift. It means you had to endure lift operators shaking their heads sadly at you by about 2 PM. If you maintained a semblance of proper hydration, it means you probably engaged in at least one act of indecent exposure. And, frankly, it probably means you don't have many friends.
Knowing today would probably be my last day skiing standing up, Jimmy and I chest-bumped on Saturday night and agreed to give it a go.
Early Sunday, we woke up, Jean cooked for us, helped me get ready and dumped us at the end of the road at 7:40 AM. We skied nonstop almost all day. Jean and Abby joined us now and then, but separated from us when they stopped to do silly things such as rest.
At 3:22 PM, we were on the lift on the back side of the mountain. We needed one more run on the back side, which shuts down at 3:30 PM, and then we would need one more on the front, catching the last chair before 4 PM so we could get back up the mountain to our truck. We reached the summit on the back at 3:29 PM and slipped the gate to the back side as ski patrol was pulling an orange rope across the opening to close it down. We scorched the run, then hopped back on the chair to the top so we could slide down the front side.
The wind had been howling all afternoon, and that sometimes means the front side lift will shut down for the sake of safety (and to preserve its warranty). Now however, it had cranked up a notch. We couldn't hear each other talk, pieces of pine trees were falling on the slopes, and dirt from the Valley below was getting blown into our goggles. Prudence dictated that we make sure the front side lift was going to continue operating long enough for us to get back on so we didn't find ourselves trapped at the base with our car halfway up the mountain.
It was like that scene in "Caddyshack", where the priest was shooting the round of his life, and refused to stop after a violent thunderstorm moved in and lightning bolts were crashing all around him. I couldn't have cared less about getting back to the car. We ripped down the front side, where we found the summit lift was not moving. We had surpassed our previous one-day best, but we were still 300 feet short of 40,000. While everyone else worked on a plan for how we would get home, I was focused on where I could find another 300 feet. At 3:55 PM I noticed the old lift that services a mostly beginner area was still turning….
Day 94, March 16, 2012. "Your axle went to the painters today." Geoff Booker is building my trike conversion axle in his workshop at his home in England. Geoff is the only source in the world for a UCI-compliant trike conversion kit. The primary engineering challenges Geoff solved is the requirement for the two rear wheels to be able to travel at different speeds (for cornering) coasting or under power. This component is called a "differential", as it is in your car (it is the big, round chunk of steel staring back at you when you peak under your rear bumper, looking toward the front). Geoff's design, however, weighs about 100 pounds less than the one under your Hummer.
Geoff builds each axle by hand according to the dimensions of the bike to which it will be attached. He also builds an entire frame.
Geoff also races what he builds.
And he is nothing if not humble: "Do you really want a picture of an old bloke that builds trikes?" While the painters make the visible part pretty, Geoff is finishing up the guts of the piece. Meanwhile, back in New Mexico, in addition to my daily assault on the King's English, I am learning to ride Mike Hart's grocery cart. And I'm doing better at that every day. Not that I am counting the days… but there is this local time trial early next month…
I rode the Vortex yesterday with Chris Dineen. He was on his new carbon race bike, which must have felt like meeting up with a friend in your new Ferrari to go for a spin, only to discover your buddy brought his Yugo. I thought Chris was a very good sport under the circumstances. This was the third consecutive day exploring how fast I can make the Vortex go for how long. Here's what it looks like:
Total for 20 km
Team USA standard for class T-1
Team USA standard for class T-2
At first glance, this looks pretty encouraging. However, there is a long list of "yeah, buts"; to wit:
- I have never been through the classification process. They might tell me I am a T-1. They might tell me I am a T-2. Or they might tell me I am not disabled. And wouldn't that be cool?
- While these were out-and-back courses, negating any significant wind advantage, they were also pancake-flat, which will not be the case in Augusta, Montréal, etc.
- Uh, I wasn't riding a proper machine. My rolling lounge chair recumbent provides a massive wind advantage over an upright. It also requires almost no exertion above the waist. There is something about a recumbent that invites people to point and laugh, especially if they are in pickup trucks. This keeps me jacked up on adrenaline, knowing I might have to get in a fist fight at any moment (if I could make a fist). I won't have that advantage on my Geoff Booker trike.
Days 97-95, March 13 -15, 2012. Game on. The planning for our para cycling adventure falls into four categories: (1) training, (2) racing, (3) equipment and (4) logistics (in truth, there is a fifth category, "Kissing up to Jean", which I need to attend to since Jean has so far said only "okay" in response to every proposal I have made about racing this year).
Training. The riding I had been doing in the months leading up to our decision to dive into para cycling can only be described as "base" training for two reasons: first, aimless rides that are planned only after you are on your bike are what most amateur racers call "base" training; and, second, base training comes before race training, and I don't have time between now and the races to do any significant base training, so it's important to declare base training "complete".
Over the last 10 days I have done several workouts intended to assess my 20 min. fitness. The news is all good. I repeated a power workout I had done in May 2011, 10 months ago and nearly one year after I was diagnosed. With two 20 minute efforts, I recorded power output at 94.1% of what I did in May 2011. On the road, I have done a number of 10 km and 5 km repeats. If the times translate favorably from the recumbent Vortex to the upright trike, I should be very competitive. If, that is, I can learn to competently handle the trike.
Racing. Here is the schedule:
- April 27: Defi Sportif, a UCI-sponsored event in Montréal.
- May 27: UCI World Cup Rome (tentative).
- June 17: UCI World Cup Segovia Spain (unlikely).
- June 20: USA Cycling Para Cycling National Championship in Augusta Georgia.
- July 6: UCI World Cup Baie-Comeau Canada.
- August 29: 2012 London Paralympic Games (unlikely).
Note that the first event is less than six weeks away and I don't even own a UCI-compliant trike. While pedaling is pedaling, as I learned in San Diego while I was bouncing down a grassy slope toward Mission Bay, the handling of one of these machines is unlike anything I have ever ridden. Oh, wouldn't it be handy to have a trike – any trike – to practice basic handling and cornering skills? That leads us to the topic of…
Equipment. When I was in college I had a girlfriend who believed if you picked up The Bible, closed your eyes and opened it up, God would guide your fingers to the passage you most needed to read at that moment. Mike Hart’s garage is like that. If you open the door, close your eyes and walk in, the first thing you trip over is the thing you need most at that moment. In a figurative way, I walked into Mike's garage this weekend. I did not trip over an Infinity GX 30 as I had hoped; instead, I tripped over this…
And, yes, that's a sperm hat. Game on!
Days 99-98, March 11-12, 2012. Boys (+1) ski weekend. We had Paul Mohr, Brian Nichols, Mike Hart, Michael Hart, Gus Pedrotti, Jimmy and Julie Koob (a.k.a. Gorgeous Pie, a.k.a. Sweet Pretty Baby, a.k.a. Cupcake, etc.).
I didn't do jack except wander around the cabin, chew and ski. It reminded me a bit of "Weekend at Bernie's". While I preserved a bit of modesty by managing to squirm into my base layer and my blue jeans, people otherwise took turns with my buckles, zippers, buttons, shirts, jackets, helmet, skis, fork, cup and bottles. They alternated chucking me into and hoisting me out of the hot tub.
The skiing on Saturday was good. 6 inches of light, fluffy powder that was easy to push about with my skis. Sunday, not so much. We had another 8 inches overnight, but the mud on the roads didn't freeze. The warmth overnight, coupled with climbing daytime temperatures produced a lumpy surface that was, at various times during the day, the consistency of: mashed potatoes, paste, wet cement, oatmeal, clam chowder, molten lava or ice cream.
I was a bobble head. The bumpy surface triggered my hyperactive reflexes, which locked my ankles, knees and hips and caused rigid contraction in my quads, hamstrings and calves. I skipped across the snow like a rock on a pond. One set of joints, however, was not frozen at "attention" – my cervical vertebrae. My heavily-helmeted head was too heavy for the muscles in my pencil neck.
I had a plaintiffs’ lawyer (Mike) with me, but, remarkably, he did not have a cervical collar with him. That would have come in handy for Bernie the Bobble Head.
Day 100, March 10, 2012. I guess I am becoming more difficult to understand. I have had two clues. First, when I speak, people are more frequently responding with a question: "Huh?"
Second, my voice recognition software is telling me the time that has come for "accuracy tuning", based, apparently, on exchanges like this:
Doug: "delete previous word".
What Dragon NaturallySpeaking heard: "flagellate flutist warmed".
I bet he was.
Days 102-101, March 8-9, 2012. If I can lift it, it's light. The wheels on my trike will be light. They are also engineered to create negative drag – that means the wheels will give my trike less overall wind resistance than if it had no wheels at all. Think about that for a minute.… Good. Now do that again. And, if you are a bike nerd like me, do that one more time.
When it comes to high-performance racing wheels, the name of the game is Zipp. Like all good wheels, they are light and strong, but where Zipp kicks its competitors right in the valve stems is aerodynamics.
Brad Iskiyan is New Mexico's representative for SRAM and Zipp. My friend Damian Calvert is a Zipp-sponsored rider. Damian therefore knows Brad. Brad is a good dude. Damian knows that. Damian talked to Brad. Brad talked to Zipp. Zipp shipped me a full set at no charge – a Zipp Firecrest 404 tubular for the front, and a pair of Zipp Firecrest 808 tubulars for the back. My racing team, Sport Systems Mountaintop Cycling, is taking care of the parts, and our primary sponsor, Sport Systems, is building them up for the trike.
This means at least two things: (1) Brad, Damian, Zipp, SRAM, Sport Systems and Sport Systems Mountaintop Cycling all rock; and (2) no excuses. If I didn't have ALS, I wouldn't have the set of Zipps; ergo, having ALS is giving me an aerodynamic advantage. No excuses.
Thanks David and Zach (Sport Systems), Brad (Zipp and SRAM) and Damian (Sport Systems Mountaintop Cycling)!
Days 104-103, March 6-7, 2012. Christmas in March. The first gift was a bike ride. If you don't ride, it may not sound like much, but dropping 5 mi./h from your usual cruising speed completely transforms the nature of a ride. Think of driving your car on a flat road at 60 mi./h, then slowing to 45. The wind-generated noise quiets; the whine of the tires drops two octaves; the fuel economy gauge shoots to the top; the steering wheel relaxes in your hands; and the engine props its feet up on the dash board and sparks up a cigarette. Analogous things happen when you drop 20 to 25% of your speed on a bike. The forces working against you when you ride a bike increase exponentially with increasing speed, so a reduction in speed of 25% can easily translate to a reduction in power of over 50%.
So, when Damian Calvert, the fastest bike racer I have ever met without demanding an autograph, hitches his wagon to the limitations of me on The Vortex, he might be doing more for his cardiovascular fitness sucking down a thick milkshake.
Riding side-by-side, we scorched the northbound leg, thanks to a generous tailwind. Heading back to Albuquerque, Damian gave me one-minute breaks by protecting me from the wind after each minute of hard effort into the wind (side-by-side). It was a great workout for me, and Damian had a chance to catch up on several issues of the Wall Street Journal.
After I took a significant nap, Anna Indahl and Twila Bastian delivered their third masterpiece quilt, this one made from some of my favorite T-shirts from high school, college and law school. Naturally, I was obliged to take another nap. You know, to make sure the quilt works.
Days 108-105, March 2-5, 2012. "Dude, should we call ski patrol?"
Not much happened this weekend. We had the Calverts up at the cabin with us, but we almost didn't, which is a convenient segue to a list of the highlights of the weekend.
- The phone rang at about 7 PM Friday. The snow was building, and the Calverts’ Chevy Traverse, which they lovingly refer to as the "Turd", failed to scale the steepest part of the road from the village to the cabin, so Damian parked the Turd in a roadside ditch. When we met them in our less Turd-like Ford, we hooked one end of our tow chain to our Ford, and the other end to the Turd’s radiator (I will come back to this). Aside from a brief moment when the Turd overheated, the trip to the cabin from the ditch was uneventful.
- At the end of the day Saturday, my pacing projection error caused us to miss the last chair back up the mountain. This wouldn't have been a problem except for the fact we parked our car at the end of our road, which dead ends at the ski area, about half way up the mountain. Even so, on this particular day, this shouldn't have been a problem because the Turd was parked at the base. We loaded our ski equipment in and on the Turd , packed both families in and headed up toward the cabin. Within about 5 seconds, the Turd overheated. We added anti-freeze, which poured right through the radiator and on to the surface of the parking lot. This is how we learned we had hooked the chain to the Turd’s radiator on Friday night. Ever resourceful, Jean hiked up one leg of her ski pants, revealing an impressive calf, stuck out her thumb and hooked… I mean "hitched" a snowmobile ride up the mountain with a ski patrol dude. Jean fetched the Ford, drove back down the mountain, and everything and everyone was loaded into the Ford. The Turd would be towed back to Albuquerque on Sunday.
- Back at the cabin, one Calvert closed a door on a finger belonging to another Calvert, who was not amused.
- After the finger incident, the Calvert boys and I retreated to the hot tub where I was treated to a full half hour watching one Calvert after another (including the one who parked the Turd in the ditch) leap from the water, disappear into the fresh powder below, then launch himself back into the water in a distinctly panther-like maneuver. While this was happening, the water was cooling quickly due to a combination of snow-encrusted humans entering the tub and a popped circuit breaker controlling the heater. The trip from the tub back to the cabin was a chilly squeal-fest.
- My crashes were saved for Sunday, and only one of them was any good. It was a testosterone-fueled head-first, backwards skid through a steep set of bumps, right under the chairlift. I get the sense I don't look particularly alive when I fall. My arms and head seem to flap about more like a crash test dummy that has been tossed from the chairlift than a stuntman. End result: a voice from the chair lift above – "dude, should we call ski patrol?"
Sounds like a blast, huh? Actually, it was a way fun weekend with a wonderful family and great friends. Some kids are a bit freaked out by my various disabilities. Not Mason or Myles. When it was time to get ready to ski, they jumped right in. Mason was hands on (buckling, pulling, snapping, zipping and clipping) and Myles was quality control ([whispering] "hey, Mase, I think he needs his coat next").
With friends like these, who needs ski patrol?
Day 109, March 1, 2012. When I wrote the February 18 entry, "For the Caregivers", I knew there was a risk in attempting to name all of them. Today it dawned on me I forgot to include Norbert Neumann in that list. In addition to being a very cool cat who raced bikes back when the stretchy pants were wool, Norbert comes to visit occasionally and has enabled me to have one thing that's easier than it was before ALS (unless you count never having to wear a tie). Click here.
Days 111- 110, February 28-29, 2012. I retired again today, and this time I mean it. When I retired in September, I was put on a "leave of absence", which is something we do for people who may return to work. While no one, including me, really expected that, I drew some comfort from being "on leave", as if I were spending six months in Uganda researching for a novel about life in the Hamptons. One primary purpose for my leave had been to sort out some fairly complicated issues relating to structuring our family health care plan. Over the last 48 hours, several pieces fell into place, and the cord was cut at about 4:30 PM today. Beginning tomorrow, my health care will be provided by a plan called "Medicare", which, if I understand correctly, means I have to become a Democrat because Democrats like taxes and Medicare is funded by taxes (including the ones I have been paying monthly since the 1970s, and the monthly $550 "Medicare premium" I will pay going forward). But it may mean I have to become a Republican because a mob of old people threatens to bulldoze the US Capitol building every year if Congress reduces the benefits of Medicare. This angry mob calls itself "AARP" and they all vote Republican for reasons I do not understand. I have much to learn, and I don't even own a pair of coveralls.
I did a power workout at P2M’s cycling studio today. It works like so: you show up with your bike, which is mounted to one of their trainers, which is connected to a very smart computer. As you watch a video of a European bike race, the resistance applied to your bicycle varies with the terrain and the behavior of the cyclists in the movie. The computer keeps tabs on all sorts of data about how hard you are working, and those numbers are displayed on the screen for everyone to see. That's all fine unless the guy next to you happens to be Mike Archibeck, who is putting out 50 % more power than you. The other problem with having Mike next to you (if you are me, which I realize you are not) is Mike likes things clean. Mike is in surgery about 25 hours a day, but his mountain bike is never dirty, even after he rides two hours in mud. He can't possibly do the cleaning himself, so there are two possibilities: Mike's kids do the cleaning (which he denies), or Mike is Jesus.
The cleanliness issue is I am not even remotely clean on the bike. I gob, spit, expectorate, hack and hawk loogies throughout the workout. I aim for a towel, but that doesn't always work out. Then there are the big fans stirring the air and all that flies about in it into one big germ cauldron.… If only I could put my bike into a big bubble.
Days 113-112, February 26-27, 2012. "He skis better than he walks."
Over the weekend, we had a full house at the cabin, including our niece, Katie Jones. Katie practices ultra sound and snowboarding (not necessarily in that order) in Vail Colorado. Katie's mom is Jean's sister Peggy The Banana Bread Queen, and she was also with us for the weekend.
Saturday mornings during ski season have a predictable rhythm. Jimmy and I wake up, put on our ski boots, and commence tapping our toes. Jean and Abby do not wake up. Once this becomes clear, Jimmy and I go skiing. One of us returns to the cabin to collect Jean and Abby so they can ski before the crack of noon.
This particular morning, however, Jimmy was in Albuquerque playing baseball. I am not allowed to ski alone, so I was doomed to tap my toes through the morning (without even having ski boots on this since I can't do that by myself either), until I remembered we had Katie. She was anxious to ride Angel Fire because she had never been there before, and because the locals in Vail are still mowing the grass. Problem solved.
"Katie is nervous about going out with you." This buzz-kill report left me imagining a day watching people drink coffee and play sudoku. I took Katie aside and whispered to her "I ski better than I walk." That was enough for Katie. Jean and Jessa joined us after lunch and we all skied until closing time. A full day of skiing with poles left my arms trashed, so I left them at home on Sunday morning.
Sunday reminded me of days when I was a kid learning to ski and I had a sudden breakthrough. We skied almost everything Angel Fire has to offer and my form didn't really fall apart until we got to steep bumps. While I hacked away at these sections, I did not employ my nose (like last week). Click here for a sample of the sweetness.
The last run of the day ends where we park our car at the dead end of the road along which our cabin is located. "Headin’ Home" is a wide and relatively flat run that sweeps down the shoulder and left arm of the mountain from the summit. Our road dead end is roughly at the mountain's left elbow. And it's a relaxing way to end a day of skiing. Gently leaning your body left or right gives your ski edges enough bite to start a smooth curve following the skis’ turning radius. Speed control is never necessary, and you can easily slide to a stop within hawking distance of the truck.
That's how the weekend came to a close – a broad, gliding turn to a stop 15 feet from our Ford. We descended 40,000 vertical feet in two days. I never tipped over, slapped a face plant or put on a yard sale. I didn't fall, bite it or cartwheel. Then the spell was broken. Jean released my bindings and I stepped off my skis and onto the snow, where I wobbled, staggered and stumbled toward the truck. A woman who had been sitting on her tailgate waiting for her skiers hopped up, looking obviously puzzled, and helped me down a long step to the level of the road. Jean, knowing nothing of my conversation with Katie a day earlier, said "he skis better than he walks".
So, it's settled, then – I ski better than I walk. In a way, that's something to which I have always aspired. [Does this remind anyone of a joke about a man who asks a genie to make a certain body part of his touch the floor, and – poof! – his legs fall off? It reminds me of that… "Genie, make me ski better than I walk." – Poof!…] Since no one has offered me the option of walking better, I'm going to go ahead and call this a silver lining.
Day 114, February 25, 2012. The World Cup Catch-22. I must be missing something.
This is an interim report on my research to support my development of a strategy to maximize my very small likelihood of being selected to compete at The Paralympic Games in London. The following rules are applicable:
- London 2012 Classification Guide;
- International Paralympic Committee Classification Code;
- UCI Rules parts I, II and XVI;
- UCI Classification Guide;
- USOC 2012 Paralympic Games Selection Procedures-Athletes;
- USA Classification Policies and Procedures – General; USA Classification Policies and Procedures – Cycling;
- USA Cycling Classification Guide – Tricycles.
If I weren't a lawyer, I would need one. Racing in an international event prior to competing in the US team's selection event would be a significant advantage. It would also be fun. I am still working through this with very nice people in Spain, Italy, Switzerland and Colorado Springs, but one interpretation of the rules pertaining to participation in a World Cup event is as follows:
- World Cup races are limited to members of National Teams.
- Qualification for and National Team may be achieved at:
- a World Cup event, or
- a national championship.
One more fact: the US National Championship is after all of the World Cup events that precede team selection for London.
These rules were written by people who appear to be concerned only with fairness, so I think this will work out fine, but it's a bit funny for now. Where I think this will wind up is the World Cup competition spots will be reserved for National Team members unless the nation enters fewer than three athletes in a given category. If that happens, the National Team may include in its registration and unaffiliated individual from that country. This would work out just fine for me because the US team has fewer than three athletes in each tricycle category.
On the equipment side, things are looking up. While my rear axle is being produced, my friend Alex Walker has come through with this e-mail: " We have a trike you can borrow until yours is ready. It’s a single speed, with flat proofs [tires]…. You’ll undoubtedly want to switch out the pedals." (Click here).
Day 115, February 24, 2012. A star-crossed ride. We first "met" John St. Michel during the race in Acoma last September. Since then, we have exchanged e-mail and waves on the bike path. A couple of weeks ago, John stopped to help me when I was struggling to lift my very heavy iPhone out of my side pack. We agreed to meet for a ride soon. "Soon" was today.
This got off to a rough start. I was late for about 15 different and inadequate reasons. This left John circling the parking lot at Applebee's for about 15 min. Within about 1 min. after we got going, John had a flat. We re-routed our ride to an account for my late arrival and the time John needed to change his tube. Our loop route became an out-and-back. Less than 10 min. into the return leg, John got another flat. Most cyclists carry a spare tube. Very few carry two of them. John is not one of the few. What this meant is John would have to find and patch the hole, borrow a tube from me, or raise a white flag (call home for a ride). Our wheels are slightly different sizes, so borrowing a tube from me was out. John took out his patch kit, so I assumed calling home was out.
We reduce. We recycle. We re-use. We do not patch tubes. Happily, John is not burdened by the same environmental insensitivity. He patched his tube.
Every bike ride is a blessing. Every bike ride is a gift. Some bike rides should be returnable for store credit.
Days 117-116, February 22-23, 2012. Oso High’s 2012 Adaptive Equipment Innovation of the Year.
For nearly 2 years, I have been struggling with hydration technology. The standard solution for a cyclist is the basic bike water bottle. By 2010, the progression of my ALS had made it difficult to squeeze the hard plastic of a bottle. In fact, I simply couldn't do it with my left hand. Not long after that, I needed two hands to pull a bottle from its cage. I was still racing both mountain and road bikes at that time, so that was the end of the line for bottles for me (I had plenty of other problems trying to knock me off bikes by then, and "look Ma, no hands" didn't need to be added to the list).
So I turned to Camelbak, then Osprey, then Deuter. Each of these products consisted of a small backpack with a removable hydration reservoir and a connected hose with bite valve. Each of the different designs had the same three drawbacks: (1) I had to suck between two (Camelbak) and 10 (Osprey) times before water would reach my mouth. Even before my tongue and throat muscles developed significant weakness, this was a pain because sometimes you just don't have that many breaths to waste during a hard training or race effort. After the weakness kicked in, I often literally sucked air and then gave up. (2) the fluid reservoirs are difficult to clean, and before long, you are getting part swamp water with every sip. (3) hydration packs are hip among mountain bikers because mountain bikers say "dude" and "bro" frequently; however, roadies snicker at hydration packs because they do poorly in wind tunnel testing. Thus, even winning the "green sign sprint" (click here), I was subject to ridicule from my own teammates because I was "rocking the Camelbak".
Enter GEIGERRIG. Their line of hydration packs won't win over the roadies (except the ones who want to get an actual drink while they race…), but the other problems I have found with hydration packs are gone with GEIGERRIG. Big cycling companies like Trek, Specialized and Cannondale all aspire to be able to promise their customers they will "Never Suck Again". Where the big names fail, GEIGERRIG delivers – in fact, GEIGERRIG owns the words "Never Suck Again™", as evidenced by the tiny "TM". This is thanks to an air chamber next to the fluid reservoir that can be pressurized to your liking by squishing a blood pressure gauge-like bulb.
Squeeze the bulb many times, and you can spray water on your friends in the group ride who are too white-knuckled to be able to reach down for their aerodynamic water bottles. Squeeze the bulb a few times, and a gentle bite on the valve gives you a gentle and steady stream of water without sucking.
GEIGERRIG disposes of the swamp water problem by making a reservoir that can be turned inside out and run through the dishwasher.
If you have ALS or know someone who does, GEIGERRIG is the perfect thing. Staying hydrated is a snap even if you Never Suck Again™. Walking, biking, sitting at a computer, watching the telly, or rocking the electric wheelchair, GEIGERRIG has a perfect configuration. If you are thinking about a gift for someone with ALS, the model called the "Shuttle" is the one I recommend because it has the widest range of uses and means of attachment.
Before I had ALS, I was a life time 30% free-throw shooter. That sucked. As a person with ALS, I am surrounded by things that suck. Now, with a GEIGERRIG pack I can Never Suck Again™. That doesn't suck – that's awesome. And that's why the GEIGERRIG pack is Oso High’s 2012 Adaptive Equipment Innovation of the Year.
Days 119-118, February 20-21, 2012. Skiing really isn't this complicated. Over the weekend, I took a couple of headers, including one full-on face plant where I smashed my goggles into my glasses and my glasses into my face and broke the glasses. At least there I had a partial excuse in somewhat difficult snow conditions and a binding set too loose. A couple of hours later I turned the most mundane activity in skiing into a multiple car pile-up. Jean and I were getting on the chairlift. Jean was carrying my poles, and I wasn't moving very fast. The chair caught me on my left knee, shoved me into Jean and knocked both of us to the deck. Jean cracked her tailbone; I bashed my ribs on all four poles; and the lift operators wanted ski patrol to come evaluate me for a head injury because of my voice. Livin’ the dream, baby… Livin’ the dream.
Days 122 and 121, February 18-19, 2012. For the caregivers.
Off to Angel Fire for a ski weekend (most of us, anyway – Jimmy stayed home for a baseball scrimmage on Saturday, then flew to Phoenix for a soccer tournament). Our friends, Meg and John Meister came up with their kids and unbelievably good food. As a surprise late addition, my aunt Mary Beth, my cousin Todd, his wife Mandy and their baby Jade joined us for the afternoon on Saturday. Todd has lived almost his whole life within spitting distance of Colorado's front range. He is an awesome skier. We have lived within seven hours of each other for almost all of the past 26 years, and Saturday was the first time we have skied together. And who did Todd get to ski with? Frankenstein, Yeti, whatever. Actually, I skied pretty well by my new standards. Then we went in for snacks.
Rewind 24 hours. As usual, Jean was doing the work of two people getting us ready for the cabin. One of her projects was to make a big jug of fruit smoothie for me for the weekend. After she had all the ingredients in one massive blender, she hit the "start" button. Nothing. She stuck in a wooden spoon and began stirring things up. Eventually, the blender came to life, and we had smoothie. As Jean cleaned up the mess, she noticed about half of the business end of the spoon was missing. "I wonder what happened to that spoon?" Then the phone rang, a text came in, someone knocked on the door… And we left for the cabin.
Fast forward 24 hours. Abby took off my helmet and jacket, and Jean poured me a tall smoothie. With the first sip, I thought the texture was oddly fibrous. As I worked my way through the drink, fibrous became crunchy, which gave way to chunky, and, finally, a clogged straw. "Oh, that's where the rest of that spoon went."
Day after day, Jean and others take care of me. And, unlike raising a child, the job becomes incrementally bigger every day. I sway and stumble when I walk. My hands and arms are becoming less useful constantly. I can't pick up anything smaller than a ping-pong ball. My thumbs are no longer opposable, which means I am – technically speaking – a cow.
Lots of people help, but Jean is the one who sleeps on pins and needles, always on the lookout for me to be in a fight to the death with my sheets, or to trip over a dog on the way to the bathroom. Abby is the one who worries about the size of every bite of food that goes in my mouth. Jimmy is the one who gets stopped in his tracks on his way out the door for school with a "request" for just one little adjustment to a bike. Every day. No vacations.
Thank you Jean. Thank you Abby. Thank you Jimmy. Thank you Jessa. Thank you Mom. Thank you Dad. Thank you Charlotte. Thank you Maureen. Thank you Blair. Thank you Peggy. Thank you Modrall Sperling. Thank you Tim Holm, Mike Hart, Damian Calvert, Mason Calvert, Brian Nichols, Paul Mohr, Tom Outler, Scott Gordon, Chuck Vigil, Andy Schultz, Kip Purcell, Bruce Hall, Nelson Franse, Jim Chynoweth, Hilma Chynoweth , Kim Blueher, John Blueher, Clayton Blueher, Anna Indahl, Twila Bastian, Luis Stelzner, Juan Flores, Andy Kain, Carl Laboue, John Bowser, John Dunbar, Elise Wheeler, Dean Kuckleman, Max Madrid, Julie Koob, Nancy Fortin, Joe Fortin, Hailey Fortin, Randy McDonald, Joe Friedrich, Lorrie Park, Steve Park, Todd Sargeant, Mandy Auer, Mary Beth Flynn, Anna O'Connell, Jim Browning, Walter Stern, Marcia Schick , Chuck Schick , Megan Muirhead, Chris Muirhead, Alex Walker, Richard Sertich, Marte Lightstone, Beth German, Bill Lynch, Bill Keleher, Brent Lesley, Mark Unverzagt, Sarah Youssof, Rob Pease, Mike Fratrick, Marge , Janine Archibeck, Mike Archibeck, Kerrie Copelin, Mark Carver, Tom Power, Jennifer Anderson, Pauline Lucero, Chris Dineen, Harry Sommers, Divah Sommers , Todd Resch, anyone I've forgotten and everyone who has asked "dude, are you okay?" Thank you everyone who has read this blog.
And, especially, thank you to all the people who keep bringing us dinner on Tuesdays and Thursdays. Every meal someone cooks for us makes it less likely I will eat a ground-up meat thermometer.
Day 123, February 17, 2012. We are making progress toward having a plan for this para cycling adventure. We will probably attend a World Cup race about three weeks prior to US Nationals. It would be nice if my very first race wasn't the one and only qualifying race for the Paralympic Games.
On the bike front, my new bike was assembled by my sister in law Maureen, who now proudly considers herself a "Wrench", a title she well-earned today. Now we can start working on the ergonomics of the bike while we await production of the rear axle.
Oh, and that little detail – learning to ride a tricycle. With dumb luck on my side, I called the one guy in New Mexico who would have to know if anyone around here has a racing tricycle. Dave Porter is a custom bike builder. Check him out at www.porterbikes.com . As it turned out, not long ago, Patrick Moore had come to see Dave about his late 1970s-vintage Ken Rogers trike.
On Tuesday afternoon, I left home on the Vortex to meet Patrick at his home on Albuquerque's west side. I was badly underfed when I headed out, and I also forgot to bring fluid. As I rolled north on Albuquerque's elevated north/south bike path, the sky was beautiful and ominous. Rain was obviously falling not far from my destination, and the building wind was causing me to weave gently along the deserted asphalt ribbon. When you ride a bike, if you feel hunger, it’s already too late. By the time I reached Patrick's home, I had vertigo and my legs were shaking with a rapper’s delight. I had a bottle of the Kroger version of Ensure in my side pack, but I was several minutes late, and didn't want to keep Patrick waiting.
Patrick's British trike is a museum piece, but it has a bum bearing awaiting a replacement from a builder in England. We talked about bikes and trikes. Patrick tried out the Vortex, and I rode another of Patrick's trikes, a grocery-getter, with small wheels and funny geometry.
The Ken Rogers The grocery trike
Even with my uncomfortable hunger, vertigo and my vertical instability, I was more comfortable on the trike than I had been on Steve's in San Diego. Patrick demonstrated a turning technique something like so (to be clear, I won't be doing this):
We talked about para cycling and the silly sperm hat I will wear.
Patrick expects to have his bearing by early March and promised to give me a call so I can get to work on my trike handling while my axle is being built. Oh yeah…
When I left Patrick's home, I parked in a sunny spot at the end of his street and sucked down my generic Ensure, then wrestled with my iPhone to send a text home telling Jean I would be late. While I spun for home, I thought about all the things that make Albuquerque great, including this (click here).
Days 126-124, February 14-16, 2012. It's 4 AM, you're not responsible for the grocery shopping, no one will care if you spend your whole day in your boxers, and you can't sleep. What do you think about while you stare at the ceiling? I tried to stay focused on unraveling the mystery of why the Washington Redskins have sucked so thoroughly for the last two decades, but I was continually distracted by: whether anything genuinely bad ever happens; whether Santa Claus and God are the same dude; and identifying worthwhile prayer. Here's where I came out by the time I swung my legs off the side of the bed.
Whether anything bad ever happens.
- God is good
- God is all-powerful
- Bad stuff happens
Can all three of those premises be true? If you believe God is good and all-powerful, then how can you believe anything that happens is genuinely bad? Similarly, if you believe God is good and bad stuff happens, then how can you believe God is all-powerful? In philosophy, this is known as the "Logical Problem of Evil", which is often attributed to a Greek dude, Epicurus, who lived about 2000 years ago. On the day he died from a fatal bout with kidney stones, Epicurus wrote to a friend as follows:
I have written this letter to you on a happy day to me, which is also the last day of my life. For I have been attacked by a painful inability to urinate, and also dysentery, so violent that nothing can be added to the violence of my sufferings. But the cheerfulness of my mind, which comes from the recollection of all my philosophical contemplation, counterbalances all these afflictions.
So, what we learn from Epicurus is that it doesn't matter whether we ever resolve the Logical Problem of Evil. Just thinking about it is apparently good for your state of mind.
Whether God and Santa Claus are the same dude. This question arises from many biblical suggestions that prayer is answered based upon the distinction between the naughty and the nice. We know this is not true for at least the following reasons:
- Childhood Cancer
- Fidel Castro
- Charlie Sheen and
Also, if God answered the prayers of the good, then, when Tim Tebow dropped back to pass, it would be more likely that he would hit one of his teammates than a cheerleader. At a different game. In Nebraska.
Worthwhile Prayer. At some therapeutic level, all prayer is probably worthwhile. But, if you measure "worthwhile" by the likelihood of a positive answer, it seems to me that getting very specific is a waste of time. Sure, when the football players hold hands on the sidelines and pray the kicker will split the uprights, they can point to the ceiling of the dome and thank God for the three points when the ball goes through. But, for every one of them, there was an opposing player praying just as hard for the little man to shank the pigskin right into a hot dog vendor. If God answered specific prayer, children would never get sick or hurt, and, if they did, they would always get better. If God answered specific prayer, my college friend Steve Turner, who survived brain cancer as a teenager, became a Baptist minister, and who has never smoked a cigarette, wouldn't be having a cancerous lung removed this week. My bet is, if you pray for stuff that has a less than 50% likelihood of happening, you are most likely to be disappointed. And, if you do this repeatedly, you might start to get dowright pissed off.
Instead, we pray in thanksgiving (even for an agnostic, that one is almost a no-brainer – you know, just in case), and we pray in such a manner that interpreting whether God has come through necessarily involves a measure of subjectivity. So, every day before we get up, we pray for "peace of mind and strength of body and spirit." My faith has never been stronger.
By the way, anything I write that sounds even marginally educated probably came from Wikipedia. I have time to think about this stuff and to research it lightly; whereas, you have a job.
Days 130-127, February 10-13, 2012. Baseball analogy day. Another Error in Medication; Another Homer in Innovation.
From a fairness standpoint, I feel like I should be exempt from stuff like this – I had a root canal last Thursday. It began with a toothache my dentist treated with antibiotic for two weeks before the root canal. By the time I went in for the root canal, I no longer had pain. I was a brave boy, and the procedure lasted only about an hour. My dentist gave me a prescription for a narcotic pain killer (Vicodin ), but told me he didn't think I would need it. And he was right about that… All the way through Friday. By Saturday morning, my tooth was throbbing, and by Saturday afternoon, so was my head. We stopped on the way to Angel Fire to fill the prescription. At my dentist‘s recommendation, we also refilled the antibiotic. We got back in the car, I popped in one antibiotic and one Vicodin. That, as you might expect, is the last thing I remember about Saturday.
Sunday morning, I was feeling marginally better, but mostly there was fresh snow, so Jean and I went skiing. I didn't need Vicodin, but I would need ibuprofen and an antibiotic. Jean put the pills into a Ziploc. She also put in a Vicodin "just in case".
A key to good skiing is maintaining soft ankles, knees and hips. Another important trick is not being from Lubbock. The ankles, knees and hips thing has become a challenge for me, as my confused nervous system’s reaction to any impact is to contract every muscle in my area code. All morning, I skied like the mayor of Lubbock.
We stopped for a bite to eat at the top of the mountain. We ran into a friend who joined us at our table. While Jean chatted with him, she dumped pills out of the plastic bag, into her hand, and into my mouth. As I swallowed the pills I saw her wad up the bag to put it away with the antibiotic still inside. I asked her to get the bag out to get me the antibiotic. As Jean unrolled the bag, she said "I already gave you the anti-… Oh, sh&*! Did I give you the Vicodin?!"
In my law practice, I occasionally defended pharmacists who had dispensed the wrong medication. It was uncanny to me how frequently these errors resulted in the patient receiving the exact opposite of what they needed. For example, a patient being treated for a rash would receive a medication that causes a rash. Such was the case on Sunday, when we found ourselves at 10,500 feet above sea level, on skis, when I took a pill that can cause dizziness, drowsiness, confusion, fear, euphoria, blurred vision, seizures, and – as if that weren't enough – dark urine and clay-colored stools.
Yes, I had a couple of "Lucy in the Sky with Diamonds" moments. I tried to kiss a really hot octopus who lives in an abandoned Subaru near the base of the chairlift on the back side of the mountain. Nevertheless, made it back to the car before sunset, and I had a solid excuse for napping all the way back to Albuquerque.
When we arrived back home, we found two gifts from our friend Mike Hart. A telescoping fork and finger- mounted sporks. We laughed until we tried them.
Days 39-131…, February 7-9, 2012. News flash! The Oso High Lobo Classic is off. The Man is holding us down, by which I mean the Lobo Cycling Club’s very well-conceived road use application was denied. The club has promised to produce its September 2012 mountain bike race as a benefit for the ALS Association. While cancellation of the road race is a heinous development, the mountain bike race plan is awesome.
News flash Part Deux! Game on! We are going to USA Cycling's Para Cycling National Championships. June 20-24, 2012, in Augusta, Georgia.
And we're going to do it on one of these…
Say what? Yeah, another bike. My first reaction to this idea was "no way – not another bike." My second reaction was "has that ever stopped you before?" Was it over when the Germans bombed Pearl Harbor? No – and ALS can't have my bike racing career just yet.
This is how we got here. About the time I bought the recumbent Vortex, a friend suggested I contact the Paralympic people at the US Olympic Committee. After a few e-mails and phone calls, I learned that trike racing in the Paralympics is the machine pictured above, not my rolling lounge chair. Many questions followed. Could I even ride such a thing? Where could I find one to try out? How would I know whether I am fast enough to compete? How would I explain this to Jean – I had sold my road bike less than a week earlier. After a bit more research, I found out about the conversion kit to transform a road bike into a racing trike is manufactured by only one guy in the whole world, and his waiting list for production is months long. What if I went through this whole process, only to find out my medical condition would lead the Paralympic people to qualify me in a category other than "tricycle"?
I sat down with Jean and the kids to run it by them. The ultimate goal, I explained, would be to make it to the 2012 Paralympic Games in London in September. Everyone gave me at the "go" sign. Step one – find a bike to test ride.
After a bit more digging, I learned there are fewer than 10 such bikes in the United States. A coach at the US Olympic Committee recommended I contact Steve Peace, a member of the US Paralympic team, rumored to be the only American who owns more than one. Steve, as it turned out, couldn't be a nicer guy. With one phone call, we agreed to meet near his home in San Diego to go for a bike ride.
Steve, about to kick somebody's ass real good.
Jean and I flew to San Diego on Tuesday, had dinner with Steve and his girlfriend Sara that night, and tried out the bike on Wednesday. Steve's number two bike is on a long-term loan to Don Peters, an ultra cycling legend who completed his most recent Race Across America in 2008. When he was 71. Don met us at a parking lot near Sea World. The morning got off to a rough start that I hope is explained by a change we made in my medications on Monday night. My legs shook uncontrollably. On the bike, the vibration was so great I could barely control the steering. The bike, meanwhile, has dramatically different handling characteristics than a two-wheeler. This made me nervous. Anxiety increases tremors/shaking… The result was not pretty.
Several times in the first half hour of this experiment, Steve suggested we turn around. His suggestion became more of a plea after I nearly had another "dude are you okay" moment. We were negotiating a left hand bend in the road. The road surface slopes to the right, and a trike adopts the slope of the road (here, tilting the trike to the right, which is the exact opposite of what you want to be doing in a left turn). I was convinced the bike would flip, so I bailed – turning off the road to the right, through some mud and down a hill toward Mission Bay.
There is only one brake on the trike. It is located on the curly part of the bars, way up front. The bike was bouncing over rough terrain, my whole body (including my hands) was shaking uncontrollably, and I began to wonder how cold and how deep I would find the water. At a particularly holy moment, the front wheel found deep sand and my hand found the brake. I came to a stop dry and upright.
It's difficult to look or act cool in such a circumstance. In my mind’s eye I had seen myself hopping on the trike and heading off on a brisk tempo ride with Steve, chatting about how we would collaborate to defeat the East Germans in London. Instead of explaining how I should construct the lead-out for his 200 m sprint to victory, Steve said "let's go back to the cars". I groveled and was given one last chance. We completed the lap around a park, and then returned to the parking area where I did some short accelerations on a flat and straight road.
The good news: I can make one of these things go fast enough to be legit. The bad news: I don't have one of these things, and I am going to need lots of practice.
How works the Paralympics? In para cycling, athletes are categorized for competition based upon their physical abilities. Some ride traditional, unmodified bikes. Some ride hand cycles or tandems. And some ride tricycles. A weird part of the process is it is not possible to find out what your classification is until hours before your competition. So, if you purchase a trike, train hard, fly to an event in a faraway land, only to find out they consider you a biker, you have nothing to say except "dadgummit", and you better know how to say that in English because that is the official language of the Swiss-based UCI (Union Cycliste International).
Once you have a classification you may compete in national and some international competitions. The key to becoming a player on the international stage is being selected to be part of a national Paralympic team. UCI sponsors an annual series of high-profile events that, together with smaller competitions, are scored over the course of the year, with the high point athlete earning the title of "World Cup Champion". Most years UCI also hosts a single-event world championship. 2012 being an Olympic year brings the international focus to the Paralympic Games, which follow the Olympic Games in London this summer. Each National Federation is given a set number of participants per sport for the Paralympic Games.
The US Paralympic Team currently consists of about 50 cyclists, most of whom have legit medal chances if they are selected to be part of the US delegation for London. Unfortunately, the US team for London will be limited to less than one dozen. The US Olympic Committee/US Paralympic Team will make the selection.
I am not a member of the US Paralympic Team. In fact, I have only met one person who is a member of the team. And only one person who works at the USOC even knows who I am. I have never competed at an international, national or local Paralympic event. Based on my physical abilities, I probably first became eligible for Paralympic competition during the month of December 2011. So how do I fit in to this, if at all?
The bare minimum for a US athlete to be eligible for the 2012 Paralympic Games is to participate in the USA Cycling National Para Cycling Championships and a World Cup event. At one or both of those events, the athlete would have to ride a time trial at an average speed greater than the standard for that athlete’s classification. For me, assuming I am classified as a trike competitor, this means 18 mi./h or 20 mi./h for a 9 to 12 mile course, depending upon whether I am classified as a T-1 or as a T-2, another classification distinction based upon physical ability.
Obviously enough, I would have to absolutely shred those standards to have any chance of being selected over current US Paralympic team members. I could theoretically win the US Championship, win a World Cup event and still not go to London. Indeed, chances are good that will happen to at least one current member of the US national team.
So, London is a massive longshot. As best I can determine… Hey, there's never been a cyclist with ALS in the Paralympic Games. There's never been a cyclist with ALS on the podium at the US National Championships or at a World Cup event. There's never been a cyclist with ALS on the US national team. All that has a [tap tap tap] 0% chance of changing in 2012 if I don't take a whack at it. Game on! … Wait – I don't have a trike!
The equipment issue. When I decided I was done with road racing on two wheels, I bought the Vortex and sold my road racing bike. Now, what I need for Paralympic competition is… a road bike, plus a trike conversion kit.
Meet my new road bike.
Why did I pick this 2011 Jamis Xenith Team bike? It has electronic/very light touch shifters. Fully-equipped, it will weigh a respectable 15 pounds. It has no wheels. The likelihood of finding a used bike with wheels that would be ideal for Paralympic competition is very low. There was nothing to gain by purchasing a bike with wheels I wouldn't use, so finding one being offered without wheels was my preference. This bike has a long steer tube which will allow me to mount the bars higher to take some of the load off my fettuccine-like arms. The price was insane unless the original owner was a bike shop employee who paid a deeply-discounted price for the bike last year. This also makes it highly likely the bike received very good maintenance.
Now, about that rear axle. Remember when I said there is one dude on this whole rock who makes a racing-quality axle? Here is how he markets his company:
EVERYTHING FOR THE TRICYCLIST
(EXCEPT LEGS AND LUNGS)
MADE IN OXFORDSHIRE ENGLAND
Trykit Conversions is a very small company.
Every tricycle, frame and conversion axle is hand built and made to order by Geoff Booker
The current waiting list for frames and axles is 6 months.
This is a man who does not need more work. He has his hands completely a full; he has no employees; and, when you see his work you will understand it is an engineering work of art created one at a time. Mine should be ready by April.
So, welcome to "131 Days to Augusta".
Day 40, February 6, 2012. Groundhog Day was last week… Or was it? "Dude, are you okay?" Occasionally, I record data reflecting objective information about my physical abilities. Tonight, I was doing full squats on my toes without resistance to test my quad strength and balance. Each repetition brought me down into a position very much like a baseball catcher.
On the 22nd effort, my balance failed and I tilted forward – first, to both knees; and second, to my hands and knees. That should be the end of a not-very-interesting story. Unfortunately, however, my hands/arms collapsed with no effect, and my right eye hit the carpeted floor. I heard a sort of sickening crunch from my cervical spine (I must have been overdue for a visit to my chiropractor, because my neck feels better now than it did before I hit the floor). And now I look like this. Click here.
Dennis Leary says "life sucks, kid, get a ^$%@ing helmet." I may have to do that or start crawling around the house like a snake.
Days 43-41 February 3-5, 2012. "Dude, are you okay?" Another head injury, complete with blood, EMTs, a doctor with a pink sweater, and a US customs officer. I will have to come back to this because things must stay in the correct order.
We wrapped up our vacation in Cabo San Lucas with a day full of activity. We worked out in the morning, then drove into town, where the boys rented a sailboat for Jimmy's first experience as a skipper. That went very well until we reached a point as far from the beach as we would get, and God turned off the wind machine. With no auxiliary power, we enjoyed a casual drift back toward shore. This made it very easy to focus on posing for pictures as we returned to "port".
When we returned to the apartment, we sat on the deck and enjoyed a display that would be difficult to find anywhere other than Sea World. For about 15 min., we had whales, sea lions and dolphins playing, while devil rays shot from the water, flapping their wings in a furious and futile effort to achieve aerodynamic lift.
This morning we said goodbye to dad and Charlotte and headed home. Everything was going according to plan until we were in line at US customs in Phoenix.
Let me back up for a minute to discuss brisk reflexes. As I have written before, brisk reflexes are a symptom of ALS. When your doctor hits your knee with the rubber hammer, there is a split second delay, followed by a quick little jerk forward by your foot. When my doctor hits mine, I kick field goals. The hyperactivity in my reflexes is not generated by the patellar tendon, but by the quadriceps, which contract quickly and enthusiastically at the slightest provocation. A minor trip – the kind you experience every day without falling – will cause the same reaction. So, when you trip, your weight falls forward a bit, but your knees bend and react quickly to keep you up right. When I trip, my quads get all excited and my legs go arrow-straight. This leaves me staggering all Frankenstein-like. I might recover, and most of the time I do.
Not this time. We were weaving our way through the maze at customs when I kicked one of our rolling backpacks as I was making a left hand turn around one of the stanchions that holds up the rope guiding people through the line. My quads screamed "yee-ha", my legs locked straight, I staggered 180° counterclockwise, and fell backwards to the floor. My head hit first, on the base of one of the metal posts, which made a sound like hitting a spaghetti pot with a spatula. My arms, of course, were as useful in breaking my fall as single carnations would have been.
A young doctor with a pink sweater who had been on our flight rushed to my side with her lawyer. I signed the release he drafted, and the doctor assessed the damage to my melon. My head was bleeding quite a bit, but she explained heads do that when they are dropped 6 feet to the floor. My brains were apparently not leaking out, and I knew my name, location, and a limerick about a woman wearing a grass skirt. The doctor was satisfied, patted me (gently) on the head and went about her business. US Airways – not so much. The woman who had escorted us from our plane to the customs area – smartly dressed as a leopard – called the airport EMTs.
ALS has made our kids’ lives distinctly different. Their father had just smashed his head on the floor walking through a line that is safe for a typical 90-year-old. To me, that seemed like enough enrichment for one day. Plus, I was fine, and we had lots of fried mozzarella sticks waiting for us to enjoy during the Super Bowl. So, I told her I did not want any medical assistance, but she persisted. I declined to step out of line. Sensing I knew the FAA regulations that require me to comply with crew member instructions don't apply standing in line at customs, she summoned a customs officer in a vain attempt to give her request the weight of The Man. The customs officer offered to escort us to the "secondary" screening area. I know what happens there – in addition to the involuntary colonoscopies, the secondary area is where people go to miss their flights and, consequently, also where they go to miss the Super Bowl. I declined. Then he pushed the right button, offering to clear us through customs on the way. This sounded good, but, I told him, I would still refuse medical attention.
I was feeling smug. Even with a significant blow to the head, I was waving my copy of the Constitution like a light saber, and I had the feds and an airline at bay, unable to stop me from entering the United States. Then the US Air leopardess had an idea. Holding her walkie-talkie by the antenna, she announced "US Air will not allow you to board your connecting flight unless you are evaluated by the EMTs." Check. Mate.
As promised, Officer Henri cleared us through customs while we waited for the EMTs. The emergency crew arrived within in a few minutes. Four of them with lots of equipment. One was wearing knee-length rubber boots. They had been briefed on their way to customs. They wanted to know why I was walking "like that", and why I was talking "like that". Jean said "he has ALS".… Trout looks all around.
One nodded knowingly when Jean offered helpfully "… Lou Gehrig's disease". We knew then we were in good hands. I responded to questions with the verbal precision of someone lying face down in a pool of vomit next to the grease trap in a parking lot behind a back street bar in Cabo San Lucas. Nervous glances were exchanged between members of the E-Team, but they didn't ask anything further about ALS, and retreated instead to familiar territory, where they determined my blood pressure was 139/89. Pleased with this discovery, they nodded in agreement, gave Jean something to sign, then when back to their office to gather around Google to look up "ALS". Either that or they went back to the pregame coverage.
Days 45-44, February 1-2, 2012. The highlight of our visit to Cabo San Lucas has been our whale-watching trip. We went out on a 400 horse power, 14 passenger inflatable life raft. Any whale in the Pacific Ocean was within reach. The ride was far from luxurious – indeed, it was wild, wet and fast, but over half the people who set out on this journey with us returned to port.
Several of the whales we visited were being fairly heavily harassed by tourists (like us), but, like the honey badger (danger: R-rated), the humpback don't care. This 60,000 pound bad boy performed this little stunt about 100 feet from our boat.
I have been responsible for the only Debbie Downer moments of the vacation, thanks to three choking incidents involving french fries, hamburger and pork. We are increasing the role of butter and other esophageal lubricants in my diet.
If you are reading this primarily for the cycling, I have two things for you today. On Wednesday, I rode a Life Fitness recumbent for 50 min. at level 15, spinning at 75-80 RPM. I made a big perspiration mess on the floor and people made fun of me while they mopped up after me. To see how that sort of information fits in with the culture of biking, click here (danger: PG-13-rated).
Days 48-46, January 29-31, 2012. My dad and stepmom are collectors of timeshares. When you travel within the Schneebeck Timeshare Zone, running from the salty tip of the Baja Peninsula to the lofty peaks of British Columbia, you are never more than a gas tank away from one of their properties. Yesterday, we walked past three of them in less than 5 min. There will never be a timeshare version of Monopoly because Dad and Charlotte have already won. If they had spentevery night to which they are entitled in every one of their condos, they would be over 135 years old. In addition to being world dominant in this field, they are also impossibly generous with their stash. This is how we find ourselves overlooking the Pacific outside Cabo San Lucas this week.
The mountains make me want to do things (e.g. mountain biking, skiing and playing with my chainsaws); the ocean, by contrast, makes me want to sit down and stare at it (unless I happen to have a boat). Three days into this week, sitting and staring is most of what I have done – all of what I have done if you ignore the napping part.
Before we left home, I had a rather unsettling discovery. I have definitely developed an unsteadiness in my every day stride. Knowing we had the better part of a day of travel ahead of us, I dusted off a cane I had from a knee surgery, figuring it would come in handy walking through airports. You may be thinking what I'm thinking – "really? Ski poles and handlebars, but not a cane?" The ski poles are attached to my gloves with a clever harness system, and gravity helps keep me on the handlebars. Though it was light and well-designed, I found I do not have the combination of wrist and grip strength to operate a cane. I'm going to wait to worry about this until we get home. I fail to see the problem this week because I blend right in wobbling about in Cabo.
Day 49, January 28, 2012. Dude are you okay? Yes, it happened again, but this time there was no blood. On Thursday, I went about 30 miles with Damian Calvert. I need to pause to define "with". See, Damian is a genuine cycling badass. I think Damian has won the New Mexico Off-Road Series Pro category 10 times. As a roadie, Damian is a Cat 2 racer, which means he is only one level below this guy. Click here.
At My Fastest, probably in 2009, I could never do more than ride "near" him. So, when you picture what I mean by saying I went "with" him, the picture in your mind should be more like a bicycle pulling a trailer than like Lance Armstrong and Alberto Contador buzzing into Paris shoulder-to-shoulder. Damian offered the Vortex and I his rear wheel. We accepted and rolled along happily in his draft, enjoying the extra 3 mi./h we seemed to be gathering without putting in any additional effort.
After that experience, I was glad to have our team’s weekly group ride fit into my Saturday schedule. It's been a while since I did the team ride. I was late, and/or in the wrong place, and/or targeting the wrong time for the roll-out, because, when I arrived at the usual coffee place, there was no one there wearing stretchy pants (except the guy styling hair next door). I waited a few minutes in case I was, by chance, early (no dice). I met a very nice Dr. Hal, who was about to call the police until I explained why I sounded so thoroughly wasted at 9:45 AM.
Sad and lonely (not really), I headed for the entrance to the nearby riverside bike path. About 12 miles into a long loop on the path, I stopped to check in with Jean and to have a snack. It took about 5 min. to get my iPhone out of my saddle bag because I couldn't get a good grip on it. Holding the phone like a trophy, I leaned back to celebrate my accomplishment. I bought a new iPhone last week because I have grown weary of losing arm wrestling matches with my old POS phone. My technique needs some refinement. You probably know how iPhones have a touch screen that can be operated only by a living body part. Gloves will not do. I can't, however, take off my gloves because I won't be able to get them back on if I do so. My nose protrudes conveniently and prominently from my face, and seemed like the perfect tool for the job.
I spent about 10 min. with the phone cupped in my hands like a bowl of soup, poking my nose into my hands unproductively. "Dude, are you okay?" His name is Geoff. We have never met, and he made phone calls for me, opened food for me, and changed his route to keep me company for about 10 miles. We split up when I was still about 13 miles from home. After he got to his home and figured I should be back at our house, he called to check on me.
Next time I am feeling negative about humanity (like when I order a burger with no onions and I'm pretty sure the person behind the counter was not paying attention so I try to make sure she has it right and she gives me a "bite-me-I-do-this-for-a-living" look and my burger comes with onions), I will remember Geoff or Jeff Saxon, Saxton or Sexton and Damian for giving up their own rides to help a brother out or to keep a brother company.
Day 50, January 27, 2012. Live. Love. Give. The following two pieces remind us how lucky we are to have what we have at this moment.
This was written by an ALS patient and published on a website yesterday:
… This is one hell of a way to leave my family, my friends and my life, being totally dependent on my wife for everything. [She] is an angel, one of a kind. I'm truly blessed but I hate her last memories of me will be of a man who could do nothing except think and ALS is now f****ng with my thoughts,… I keep loosing my train of thought and typing with my toe takes longer but I'm glad I had that option. Brother, I stopped living after being diagnosed, my arms & hands were stolen completely 3 months later. I mean I quit doing everything even going outside as I look back that was when I should have been living it up,but no I was on my computer each moment of every day. February will be 3 years since being diagnosed, I couldn't believe it so I went to another specialist in that field again being diagnosed ALS. I waisted all my time inside except for Dr. visits every 4 months. I Pray that no one else spends their last few years of life the way I did, what a waste. I quit living life over 3 years before my death…, please, if you know or suspect anyone doing as I did intervene!, tell them about me and all the regrets I carry because now I have know choice. I hope you understand what I'm saying. God Bless you my friend, and again Thank you, Thanks for everything."
This one, entitled "Night", written by Tony Judt, eloquently paints a picture we don't really want to see. Click here if you're up to it.
So, what are you going to do with your day tomorrow? I'm starting mine off with Sport Systems Mountaintop Cycling’s Saturday morning group ride. On the Vortex. Oh yeah.
Days 52 and 51, January 25 and 26, 2012. Skiing with Frankenstein.
Our friends Paul Mohr and Brian Nichols joined me for a ski weekend In Angel Fire. On Sunday after skiing, Brian went home and Jean came up with Damian Calvert. The four of us skied together Monday before we headed home.
On Saturday, Brian dubbed me "Frankenstein" for the overall effect of my form. Click here for a peek. No doubt, he met this in a complimentary way… I have become sensitive to characterization of my skiing. Three ski seasons ago, Jean and I were standing at the top of a steep bump run watching Jimmy weaving his way down. With a mama's pride, Jean said "I love to watch that boy ski." As I continued to watch the billows of snow following each of Jimmy's turns, I said "he's better than me, isn't he?" Jean shuffled her feet. "I wouldn't say ' better’; he's more aggressive, and you are more fluid". These words hung in the air only momentarily before I reacted – "I'll show you aggressive". Gone . Straight down the fall line, bashing into bumps like, well, a 15-year-old. I was very fortunate to walk away from that stunt without an in-patient co-pay. So, Brian’s "Frankenstein", and hit me like "actually, honey , that dress does make your butt look big."
Back in the day: fluid vs. aggressive.
Apparently, my close attention to technique paid off. On Sunday, with Paul's help, I figured out how to secure my poles to my mittens. This definitely helped on the steep stuff. Monday afternoon, Damian offered I was skiing like a "yeti". This satisfied me because I walk like Frankenstein and I am sure I ski better than I walk.
The Friday-Sunday crew, and the Sunday-Monday crew:
Click for video illustrations: here for Frankenstein. Here for yeti.
Days 58-53, January 19-24, 2012. Back to compassionate use. "I'm sorry this [blog entry] is so long, I didn't have time to make it shorter" (George Bernard Shaw). If you are hoping for compassionate use, the Holy Grail is the submission of an IND application to the FDA (an "IND" is an investigational new drug). An IND can be submitted to FDA by a physician on the behalf of one patient to many. As I said in the January 16 blog, FDA generally approves them when the manufacturer has agreed to provide the drug. So what do you do if the manufacturer of a clearly promising experimental drug says "no"?
a) Curl up on the floor and weep.
b) Issue a press release directed toward the Company declaring: "Thy bones are marrowless, thy blood is cold." (Shakespeare, Macbeth). Follow that with a press conference where you say the same thing in a crisp British accent decorated with a tartish ALS slur.
c) Call Mike Wallace at 60 Minutes.
d) Start a petition.
e) Start a riot.
f) Occupy Walgreens.
g) Hire a lobbyist.
h) Do like Fred Baron (assuming you know Lance Armstrong and Bill Clinton). Click here. In his case, the strategy worked but the drug didn't. 19
i) Call your friends at the ALS Association or at the ALS Division of MDA. Surely they will light up the company like the fourth of July. Right?
j) Find a real patient advocacy organization that's not afraid to get Western on an entity that has shares of stock.
k) Send a request to FDA seeking documents relating to all IND's issued outside the context of a clinical trial.
Aside from hiring a lobbyist or, possibly, starting a riot, there is some merit to each of the foregoing, and there are many other reasonable always to approach this problem. A few more words about items (d), (i), (j) and (k).
Call your friends at the ALS Association or at the ALS Division of MDA. Surely they will light up the company like the fourth of July. Right?
Don't count those chickens just yet. Three weeks of back and forth between me and the ALS Association has this gone like so (as I have mentioned before, I am not into advocating for a particular drug, so I have edited the e-mails to make it less apparent which drug was the topic):
January 5: me to ALSA:
By way of introduction, I am an ALS patient living in New Mexico [blah blah blah]. .. I can understand why a drug developer would be hesitant to make drugs available prior to the full FDA approval for marketing. The most compelling argument against compassionate use would be that making the drug available outside the clinical trial context could interfere with recruiting or maintaining subjects for the trial by providing a method of access to the drug that would eliminate the potential for receiving placebo.
The situation is different, however, with [the drug] because [the company] has pursued a trial protocol that makes participation in the trials unavailable to [certain] people… Allowing compassionate use for this population could not adversely affect the ongoing trials.
[The company's] official statement on compassionate use relies heavily on the potential for an adverse effect on the trials. This is a disingenuous rationale as applied to people who have been objectively excluded from the trial process by virtue of the … limitation designed by [the company] itself. The safety and efficacy questions raised by [the company] can be adequately addressed by informed consent, and [the company] can charge patients who elect to participate in compassionate use.
The purpose for this e-mail is to inquire whether my family and I can count on ALSA to call upon [the company] to make [the drug] available to people who are excluded from eligibility for the trials...
January 12: me to ALSA:
Hellllooooo…? (I'm paraphrasing here).
January 12: ALSA to me:
Dear Mr Scneeneck,
I apologize for the delay in getting back to you. [The company] will make the drug available for compassionate use as soon as they have data available from the phase III trial. The ALS Association is committed to helping them move the study as efficiently and as quickly as possible. I will foward your concerns to the company.
January 18: me to ALSA:
Thank you for your response. I am confused; however, because my understanding of the study protocol is that data will not be unblinded until the completion of phase 3. That would mean "compassionate use" would occurred no earlier than 2013. … To accept that notion with grace, we need to understand the compelling reason behind [the company's ] position. To date, I have not seen that. Your offer to "forward[my] concerns to the Company" is appreciated; however, the Company knows my concerns. I am only one voice. What I am asking is whether the ALS Association will advocate for immediate access to [the drug] through any of the compassionate use avenues.
Finally, are you aware of any methods by which ALS patients might be able to gain access to [the drug] aside from going through [the company]?
January 19: ALSA to me:
Dr. Bruijn asked that I share with you the following statement that reflects the position of The ALS Association regarding [the drug].
In our quest to create a world without ALS, The ALS Association believes absolutely that people with ALS should have access to effective treatments as quickly as possible. We are working with [the Company] … and other companies developing potential treatments for ALS to facilitate clinical trials and accelerate the availability of treatments, including compassionate use programs.
[the Company] has indicated that the company will provide compassionate use access to [the drug] as soon as data becomes available showing that the compound is effective and safe in the larger Phase III study. At this time, researchers cannot be certain that the smaller Phase II study results will be replicated.
The ALS Association is committed to helping to make promising treatments available as quickly as possible. We will continue to advocate to [the Company] and others about the needs and concerns of people with ALS and their families. It is, however, critical that patients continue to participate in clinical trials. This is our best hope to find effective treatments for this devastating disease.
I hope this is helpful.
January 19: me to ALSA:
This is helpful to the extent I am getting a picture of the relationship between the ALS Association and industry, and how that limits the extent to which the Association can serve as an effective patient advocacy organization.
In my e-mail below, I asked two specific questions I wonder whether you can answer:
- · I am confused; however, because my understanding of the study protocol is that data will not be unblinded until the completion of phase 3. That would mean "compassionate use" would occurred no earlier than 2013. Is my understanding correct?
- · Finally, are you aware of any methods by which ALS patients might be able to gain access to [the drug] aside from going through [the Company]?
January 19: ALSA to me:
We are continuing to work with [the company] to make [the drug] available to pALS as soon as possible. I’m sorry that I can’t provide any more specific information.
January 19: me to ALSA:
I have been staring at your e-mail for quite a while. Perhaps we are not communicating clearly by virtue of the nature of e-mail. Is there a time tomorrow (Friday) when I might be able to speak with you and/or Dr. Buijn by telephone?
On January 23, I spoke at length with ALSA’s director of communications. After about 15 min., Shakespeare I again came to mind: "[You] speak an infinite deal of nothing" (The Merchant of Venice). Bordering on frustration, but laboring against it becoming obvious, I asked "does ALSA believe the manufacturer should make [the drug] available now?" The response: "we support compassionate use".
While pounding my head on my desk, I came to an agreement with Communications Boy that he would speak with ALSA’s Chief Scientist to find out the specifics of ALSA’s communications with the manufacturer on this issue, and to learn what follow-up, if any, is planned by ALSA.
I will keep you posted. To be clear, even if the next (and hopefully final) word from ALSA is more of the same, I will continue to support ALSA. I am, nonetheless, grumpy with the organization. If their policy decision is they will not get up in the grill of a drug company on the issue of compassionate use, why won't they just friggin say so?! I feel like ALSA is going to a fair amount of effort to try to convince us they are going to bat on our behalf with the manufacturer, when the truth is something more like so:
ALSA: So, umm … I was wondering if you folks might, you know, let people who were excluded from your clinical trial, you know, maybe get a chance to take it during the trial?
Manufacturer: HELL NO! We don't do that. Do you have any idea what the pain in the neck that would be? Blah, blah, blah…
ALSA: Oh, yeah, if course. I didn't think so, but I was just, you know, asking (wink).
If you are counting on ALSA to be getting dirty on this issue, you might want to consider other options such as…
Find a real patient advocacy organization that's not afraid to get Western on an entity that has shares of stock.
One I would recommend is ALS Worldwide. Check out their website. This is a family operation that has accomplished amazing things in patient advocacy. Www.ALSworldwide.com . The Byers have been active for nearly 10 years since their son, Ben, was diagnosed with ALS. During the time he had left, Ben (who was a filmmaker) produced and directed the film "Indestructible". The film is an epic story of the family searching for answers and meaning, literally around the globe. Check out the movie: http://indestructiblefilm.com/the_film.php . Make a donation to ALS Worldwide: http://www.alsworldwide.org/donate.html . Please tell the Byers I sent you.
Another thing you can do to help doesn't even require you to create something new…
Start a petition.
Someone has already done the work for you, so all you need to do is sign. Click here.
Send a request to FDA seeking documents relating to all IND's issued outside the context of a clinical trial.
Let’s say you have identified a drug to which you hope to gain access before hell freezes over (i.e., the end of Phase III). You look at the expanded access entries on www.clinicaltrials.gov and you don't find anything. Does that mean there is no IND outside the clinical trials? No. These are public records, but FDA is not the Egg McMuffin of returning phone calls, so, you may be ahead of the game to simply mail a formal Freedom of Information Act request. Here you go:
Food and Drug AdministrationDivision of Freedom of Information Office of Shared ServicesOffice of Public Information and Library Services12420 Parklawn DriveELEM-1029 Rockville, MD 20857 fax number (301) 827-9267Re: Freedom of Information Act (“FOIA”) Request Pursuant to the Freedom of Information Act(“FOIA”), 5 U.S.C. § 552, as amended, and in accordance with the implementing regulations and FOIA policies of the United States Food and Drug Administration, I hereby request a copy of the following documents:All documents necessary to identify every reported or requested use of the investigational drug known as "____" outside of FDA-approved clinical trials. Specifically, the documents to be produced should identify any IND's issued and under the authority of the so-called "expanded access" process defined by . 21 USC § 360bbb; 21 CFR §§ 312.305, 310, 315, 320.Pursuant to 5 U.S.C. § 552(a)(6)(A), I expect to receive confirmation of your receipt of this request upon receipt and your response to this request within 20 working days.I am willing to pay reasonable expenses for searching and photocopying. Thank you very much, and please call me at ______________if you have any questions.
If none of that works, just get out your old chemistry set and make the drug yourself. Here you go:
I am joking, of course. DON'T DO THAT. As far as I know, we have no insurance covering this operation. Please don't do that. Especially if you are my children.
Day 59, January 18, 2012. I just spent a half hour trying to plug a flash drive into a USB port on my computer. I am sweating and exhausted. Breathe in. Breathe out. Move on. And remember what you did earlier today. Check it out on The You Tube. Click here. And, no, my knees are not mounted sideways as they appear in this video. That optical effect is a product of the fisheye lens. More on compassionate use tomorrow.
Days 61-60, January 16-17, 2012. Cutting edge treatments or "Compassionate use".
We all want the latest and greatest treatments and therapies available. In terms of drugs that have gone through the traditional FDA approval process, the latest and greatest treatment believed to alter the course of ALS is Rilutek. We know this to be true because Rilutek is the only such drug. The path to approval is long and winding. From conception to approval by the FDA can easily exceed 10 years. Due to the severe nature of ALS, the road to approval may have fewer bumps because ALS drugs are typically entitled to be designated as "orphan drugs", a status that provides financial and other incentives to the manufacturer. Additionally, ALS drugs are typically given "fast-track" consideration by FDA. In FDA terms, "fast-track" is like the difference between a snail and a giant tortoise. Even under fast-track procedures, 10 years is not out of the question.
“Expanded access,” sometimes called “compassionate use” is generally the use of an investigational drug outside of a clinical trial to treat a patient with a serious or immediately life-threatening disease or condition who has no alternative or satisfactory treatment options. To permit treatment of a patient with an investigational drug under an expanded access program, FDA generally must be satisfied that: (1) the patient’s disease or condition has no satisfactory approved therapy; (2) the potential benefit for the patient justifies the potential risks; and (3) the expanded availability of the untested drug will not interfere with that product’s development. 21 USC § 360bbb; 21 CFR §§ 312.305, 310, 315, 320.
As explained by FDA:
Expanded access, sometimes called "compassionate use," is the use of an investigational drug outside of a clinical trial to treat a patient with a serious or immediately life-threatening disease or condition who has no comparable or satisfactory alternative treatment options.
FDA regulations allow access to investigational drugs for treatment purposes on a case-by-case basis for an individual patient, or for intermediate-size groups of patients with similar treatment needs who otherwise do not qualify to participate in a clinical trial. They also permit expanded access for large groups of patients who do not have other treatment options available, once more is known about the safety and potential effectiveness of a drug from ongoing or completed clinical trials.
Just as in clinical trials, these investigational drugs have not yet been approved by the FDA as safe and effective. They may be effective in the treatment of a condition, or they may not. They also may have unexpected serious side effects. It is important for you to consider the possible risks if you are interested in seeking access to an investigational drug.
FDA rarely rejects a compassionate use application submitted by a physician if the manufacturer is willing to provide the drug. The problem is manufacturers often refuse to cooperate with a request from a physician or a patient for compassionate use. The most often cited reason is that compassionate use could interfere with clinical trials by encouraging patients to line up for compassionate use rather than participating in a clinical trial when they most likely will have a 50% chance of receiving placebo. This justification for refusing to provide access to their drug for compassionate use does not hold water, however, as applied to patients who are not eligible for the manufacturer's trial by virtue of the criteria for participation established by the manufacturer. Nonetheless, the manufacturers get the final say on this issue. FDA cannot compel compassionate use. Neither, by the way, can the courts.
Here is a typical company statement on compassionate use (I am not into impliedly recommending any particular drug, so I have edited as noted to make it less apparent which particular drug is at issue):
[we] are deeply focused on the urgent concerns of patients with a fatal and rapidly progressive disease and committed to advancing [the drug] toward possible approval as quickly as we can. At this point, however, we are not making [the drug] available outside of the clinical trial. This was a deeply considered decision for [us]. The efficacy of [the drug] was only suggested, not determined, by the Phase 2 study. In addition, the long-term safety in a large population of ALS patients has not been fully established and the potential risks of the drug have not been adequately assessed. For those reasons, we don’t feel we have enough information about the compound’s safety and efficacy to ethically provide it to patients outside of a well-controlled clinical trial. This concern is underscored by recent clinical trials in ALS in which experimental therapies, such as the minocycline, topiramate and lithium, actually worsened outcomes for patients, despite earlier hopeful signals. We recognize our reasons may seem inadequate to a patient or a loved one, but they are essential to fulfilling our obligations and mission of advancing a meaningful treatment for the benefit of all ALS patients as rapidly as possible.
If this is the response you and your doctor get from the Company, has your quest reached a dead end? Maybe, but not necessarily. More on that tomorrow.
Meanwhile, check out this low tech version of Fruit Ninja. Click here.
Day 62, January 15, 2012. Content Advisory: today's topic is bladder control, and it won't be pretty, so if you are of normal sensitivity, please turn back to the discussion of existential guilt. We will see you tomorrow, when I anticipate writing about butterflies.
According to Wikipedia: "Unlike multiple sclerosis, bladder and bowel control are usually preserved in ALS". If reading that made you feel like you do when they play scary music in a movie but nothing scary happens, wait a moment – it's not safe to get back in the water just yet.
The urgency to urinate is a serious neurological mechanism which, if not responded to, can cause a real crisis. People who are paralyzed below the waist often can't feel this happening in the bladder; instead, they develop a more generalized sense of discomfort. This unsettled feeling is the result of the body screaming for assistance by way of jacking up the blood pressure. If not dealt with promptly, a life-threatening condition known as autonomic hypertensive dysreflexia can surface.
I have ALS. That means my nervous system doesn't have its seatback and tray table in the full upright and locked positions, if you know what I mean. The mental and physical energy that must be recruited in order to accomplish certain muscle-based tasks is staggering. For example, I can break into a sweat trying to make my hand lay flat.
Another way to think of it is multitasking with voluntary muscles is far more of a challenge.
Before I had ALS, I might stroll into a men's room at the Dallas airport with a laptop bag over my shoulder, pulling a suitcase while tapping an e-mail on my phone, and casually let it flow without missing a phone call. Now, if I let the call of my bladder becomes more emergent than "hey, Doug, I'm thinking you should start looking for a place to take a leak", then I have a problem. If I'm sitting in the gate area using a bit of muscle control to "hold it in", it's all good. But once I stand up, I have to involve many more muscles, including my legs. The demands of my legs and my bladder overwhelm my nervous system, and I'm not very good at either holding it in or walking. My legs shake with each step, my balance is off, and I have a very real potty emergency.
Now let's put this in the context of my Thursday bike ride. This is the last content advisory. If you keep reading from this point, please don't complain to me. I am not happy this happened; I'm not proud this happened; and I bet my kids wish I would have decided to just keep this within our family. But part of the point of this blog is to help people understand what happens to people who have ALS. This is what happened.
I may have pushed it a bit too far before taking my usual pit stop. I pulled my bike into a rest area at the north end of Albuquerque's bike path. I was only about 15 feet from the nearest porta potty. While I was sitting on the Vortex, I was fine.
The point of no return came when I stood up. Getting off the Vortex is like standing up off a toilet that sits about 6 inches off the ground. It requires the full attention of your quads with a simultaneous push with both hands up off the front wheels. This distracted my nervous system from monitoring my bladder, so by then, I had only a few seconds to work with. I staggered to the porta potty, threw open the door, and turned my focus to pulling my clothing away from my body so I could hang loose. This put me in a situation where I had three major activities going on simultaneously: my legs were doing a potty dance; my hands were grasping desperately for the zip-ties that I had attached to my shorts and tights to allow me to get ahold of them; and I was fighting a losing battle with my bladder. I had not worn shorts with tights before with my hands in their current condition. I learned I do not have the strength to pull both at one time. So, in a last ditch effort to avoid the inevitable, I hooked the zip-tie loops over a grab bar and pulled away. The zip-ties both broke. The predictable happened next. Then I said lots of bad words.
The basic concept at work here applies in many different contexts with ALS. When I struggle to put on a shirt, my legs shake. The same thing happens if I try to brush my hair or apply deodorant. The lessons here are clear enough. Wikipedia doesn't always tell the whole truth. You can count on your bladder, but beware of multitasking.
One final observation. If you have an activity you enjoy enough to still have fun when your socks are wet and warm like mine were, you have found your passion.
Days 66-63, January 11-14, 2012. You know how great it feels when you have a problem and you go into the garage and find exactly what you need to fix it? You know, like when there is a leaking breast implant and you find a tube of silicone you had completely forgotten about. Well, that happened to us this week. As my arms and shoulders have grown weaker, my shoulders do not have the muscle support necessary to keep my humeruses (I think that is the plural of "humerus", the upper arm bone, but it may be "humeri" or "my arms"). This is not a big deal when I am sitting down, or even when I am on the bike, because I have external support in the form of arm rests, handlebars etc. However, if I am walking around for a while, the weight of my arms causes a partial dislocation of my shoulder joint, also known as a "subluxation". Left untreated, I might one day look like this:
Left to right: Doug and Jean
So we went to the garage and found our friend Paul Mohr and our sister/sister-in-law Lorrie Park. Paul and Lorrie are both physical therapists, and Paul is an inventor. In his practice he found stroke patients with upper extremity involvement needed support for their arms as they went about the business of rehabilitation. With nothing on the market that would do the job properly, Paul created such a device. The US government agreed it was sufficiently novel to deserve a patent. Over time, demand for the GivMohr sling has grown to the point Paul is running his small business full-time, plus some. Check it out at www.GivMohrsling.com . Lorrie is a practicing physical therapist who lives in Tucson and is spending a week with us, including the weekend in Angel Fire, where we decided to give the GivMohr a test drive for use on ALS Boy.
The plan was to go on a snowshoe hike near the top of the Angel Fire ski area. The GivMohr is nearly infinitely adjustable, and Lorrie spent time setting it up for me before we got going. Even merely standing outside the car without pain in my shoulders was remarkable. The last two times Jean and I have gone out on snow shoes, we have zipped my jacket halfway and I have stuffed one arm at a time into the gap, Napoleon-style. The GivMohr provided a remarkable improvement, as I hiked for about 45 min. without pain. The only downside to using the sling was a marginal loss of balance due to the restriction in normal arm swing. Keep in mind, however, we were walking in aging snow that had been wind-blown and had gone through several freeze/thaw cycles. So, when you stepped on it, it might hold your weight on top, or in might do so only momentarily before giving way and collapsing about a foot. Because of this, it was necessary to stay on your toes, so to speak.
Just about the time I was feeling the burn in my shoulders, I figured out how to provide my arms with a rest.
Each time I fell – three in number – we refined the technique for picking me up. The goal is to get me to my knees, where I can get a leg or two under me to help get up right. If I find myself on the floor in our living room, I can do this on my own. I roll to my stomach, then work my knees toward my elbows until I can lift my upper body off the floor with the muscles in my low back. Then, from a kneeling position, I can advance one foot and stand up. Snow, however, does not have the stability of carpet over a concrete floor. The winning method was for me to lie in the snow face-down, and to have someone grab my backpack and hoist me up to my knees. Nothing to it.
It was a beautiful afternoon, but we got started a bit late, and the sun was down by the time we returned to the truck. My already hyperactive reflexes develop a hair trigger when I get cold, and this made the walk down the hill to the truck progressively more difficult. A quick drive home and a dip in the hot tub sounded perfect.
I have always been the designated snow driver. I think it is fair to say the sun is setting on my driving days. Admirably, Jean has been eager to gain experience driving in winter conditions. So far she is 0-3.
The driving conditions where we parked were not good. The two wheel ruts we followed on the way to the hike were surrounded by deep, hard packed, crusty snow of a sort that can easily eat a four wheel drive vehicle. The plan was to back out the way we drove in. This worked out great until the truck was tilted about 30° to the left, hopelessly stuck in a roadside ditch.
We found a cell phone signal not far from the truck, but, as luck would have it, Angel Fire Towing was taking the evening off. My brother-in-law, Steve, took responsibility for my safety by staying in the truck with me, listening to the Denver Broncos game, while Jean and Lorrie walked off into the darkness to find help. Less than a mile away, they strolled – metaphorically speaking – into our garage, where they met Rick. And, wouldn't you know it – Rick owns a backhoe. We got back to the cabin, and Rick and Virginia got a gift certificate for dinner at the Roasted Clove.
Days 68 -67, January 9-10, 2012. Today's topic: Managing Existential Guilt.
I confess this blog has been long on philosophy and short on mountain bike wrecks lately, but please bear with me one more day. One of my earliest recollections of forging into serious philosophical issues dates back to June 1978. We had just graduated from high school, and my middle school gym teacher had the bad judgment to loan me his single wide in Rehoboth Beach Delaware for a week of celebration with some of my friends. The beer drinking age was 18, and I had my first beer.
Not everyone, however, on that trip had their first beer that week, most notably, Mike Hunt. Mike was burdened by the unfortunate circumstance that his future wife was then dating one of the other guys in our group. Mike was feeling sorry for himself the night the rest of us went to see the movie "Grease" in the theater. When we returned to the trailer, we opened the door and found Mike on the floor, surrounded by empty Budweiser cans and cheap cigar butts. Mike slowly struggled into a sitting position and announced (in a far less coherent manner than it will appear in print): "I think I've figured something out – people who drink beer together… drink beer together." That was the springboard for the euphemism "getting philosophical" that was adopted by this group and used frequently all through college. But I digress.
Last night, my mom and I went to a lecture by a psychiatrist, William Breitbart. He is an advocate of "meaning-based psychology", and brought that to this lecture entitled: "Confronting Mortality." I am convinced Breitbart is a genius because I left the event patting myself on the back for all the things we are doing right.
Most of Breitbart's message is applicable to everyone, whether we are confronting mortality or confronting a car with a dead battery. So let's start there.
The premise: A general sense of well-being is promoted by finding meaning in life.
Where do I get meaning? I will use much shorter words than Breitbart, but I think he would agree with me that you maintain or restore meaning in your life when you live, love and give in the face of adversity.
Live. Continue living your life. Experience and enjoy beauty, joy and adventure.
Love. By that, I mean love.
Give. Look outside yourself. Teach, coach, donate, volunteer, or be a good friend.
One of the most brilliant people I know, my friend Tim Holm, told me over 20 years ago he sees his life as comprised of three major components: athletics, relationships and work (live, love, give, am I right?). Life is good, according to Tim, if two of the three facets are in order. Tim was way ahead of Breitbart.
What about the mortality thing? The only part of Breitbart's talk uniquely relevant to mortality is the concept of coping with "existential guilt." Here, we need a couple of building blocks.
Existentialism concerns the study of issues presented by the fact humans are aware of their existence, aware the duration of their existence is finite, and aware death could come at any moment. Organisms that are incapable of existential thought look like this:
Existential terror. This is sort of an aside, but interesting nonetheless. Because we are capable of existential thought, and we therefore know death is immediately possible, we live with different degrees of "terror". Some is rational (locking our doors), and some is irrational (checking under the bed and in the closets in your room at The Four Seasons). As long as I can remember, I have been long on the irrational. I actually did The Four Seasons thing, I looked away during the scary parts of movies such as The Poseidon Adventure, and I slept with a baseball bat, a machine gun and a grenade launcher even though our house is protected by redundant security systems, cameras, satellites and off-duty Navy SEALs.
It has occurred to me as curious that, after my diagnosis, these irrational fears have evaporated. Last night, while pondering the concept of existential terror, it occurred to me this may be so because I have far less reason to dwell upon the unknown. I know more than most people about the likely "how" and "when" of my demise. Yes, I still could get hit by (another) bus, but the odds are it will be ALS, and I have a reasonable idea about how long I have. Perhaps, then, this knowledge has reduced my existential terror and provided peace of mind I didn't have before ALS came along.
Existential guilt is the unsettled sense of having failed to fulfill your life’s potential. The chart below explains this concept in graphic terms. The blue, red and green lines represent three different life paths – my ultimate potential ("Tom Brady"), the path I was on before ALS (" Doug"), and the path I am on now.
In high school, I was a quarterback. A bad one. As a freshman, I was inexperienced (in five years of youth football, I had played offensive guard and defensive tackle, but not because I was big). I was too small . My numbers on my jersey tucked into my pants. I was 5 foot four and 95 pounds soaking wet. By the time I was a junior, I had grown tall enough to see over the offensive line, but I was third on the varsity depth chart. I was still too small, not fast enough, and then there was the issue of my arm. When I released a football, my teammates and coaches would grimace, and defenders would rejoice. The ball would fly as if it had been hit by a shotgun blast when it left my hand. The tuba section would duck, fans would shriek, and – if the ball came down in the field of play – every man had an equal chance of retrieving it.
My moment arrived in October 1977. Our star quarterback, Brent Boerger, was out for the week. The second team quarterback, Steve Hundley, went down on the first play from scrimmage. My first play was a simple option: if the defensive end keyed on me, I would hand the ball to our fullback, Jon Monk; if the defender drifted to play an outside run, I would fake to Jon and then pitch or keep the ball depending on where the defensive end played after the fake handoff. The ball was snapped to me, the defensive end crashed down toward me, so I handed the ball to Jon. What happened after that is in dispute. According to the Fairfax Journal, the stadium announcer, my coach who hit me upside the head with his clipboard, my girlfriend and my mom: "Chantilly quarterback Doug Schneebeck fumbled on the second play from scrimmage." From my point of view, it was more complicated than that.
The way I see it, things could have gone differently if that play had happened in the age of instant replay. I may have been carried from the field on the shoulders of my coaches, earned a full scholarship to Michigan, and wound up with a fist full of Super Bowl rings. Just like Tom Brady. Given my skills, however, it is far more likely I would have thrown three interceptions, fumbled twice and had my pants pulled down while being sacked, but please humor me for the sake of the graphic illustration of existential guilt.
According to Breitbart, existential guilt is the shortfall between the life you actually live and the life you could have lived at full potential (long, full, healthy, happy life with no critical moment fumbles). In the chart below, the gap between the blue and red lines represents the existential guilt I was living with prior to being diagnosed with ALS. After the diagnosis, the gap between the blue and green lines represents the even greater failure of potential brought on by disease. Breitbart says coming to terms with existential guilt is essential to well-being in the face of mortality. And Breitbart would counsel someone in my shoes to look for meaning in the present to help overcome the disappointment of existential guilt.
Fortunately, in real life, I was living with very little existential guilt in that I saw my life as perfect. Perfect family, friends, fulfilling career and a wicked stable of mountain bikes and time to ride them. Now my task is to come to terms with the new pile of existential guilt brought to me by ALS. This is serious stuff – unfulfilled promises for the future with my beloved Jean, our kids, our parents, and our larger family and friends.
The agony of having ALS, understanding what it means, and watching my body betray me is offset by the blessing of having time to come to terms with these losses. Some people have only the split second after they realize that gray thing is a shark.
It will take a lot of living, loving and giving to get there, but I'm off to a good start. I still wouldn't trade places with Tom Brady.
Days 70-69, January 7-8 , 2012.
You already know the question: is this lovely bottle of French wine half-full or half-empty? Or do you need to take a wee sip before you can answer that question?
I don't know why it has taken so long, but it only occurred to me this weekend I should entertain that analogy when I do my daily assessment of my abilities. Thus, instead of moping over my nonresponsive right ring finger, I should rejoice over my perky right pinky.
[10 min. lapse here]
I took a break for a snack, and I passed the test. I couldn't open the Hostess apple pie wrapper in a traditional manner (with my hands), but my teeth are quite capable of performing this task. So is there a problem here? The pie is now in my belly, so I would have to say "no".
There is nothing new in this line of thought – I have been blathering on about looking on the bright side of life for nearly a year. But with something chronic like ALS, it does help to re-examine the tools in your toolbox. Another example came to me in my sleep.
Aliens, monsters (domestic), super powers and gratuitous violence – all in one dream. The plot is twisted but unimportant. To keep it short, I have reduced the essential elements to the following: I was flying (Superman style) with some sort of propulsion that caused my body to emit a trail of sparks as I flew. I was in a group of about 10 people planning to stop and alien and monster attack on humans in a city with elements of Charlottesville Virginia and Albuquerque New Mexico. As we circled over the scene of a brutal massacre, I noticed the attacking aliens and monsters were slaying the humans with Nerf swords. I pointed this out to another of the flying people ("hey, those swords are Nerf" or something like that). And he responded "yeah, but those people don't know that".
Following the analytic criteria first set forth by Freud in The Interpretation of Dreams (Die Traumdeutung, 1899 ), it is clear that the aliens, monsters, jet packs, definitely the swords, and especially Charlottesville Virginia all represent penises. But I think there is a more subtle meaning behind this dream. If you believe it can hurt you, it can; if you believe it can't hurt you, it can't.
What did Mrs. Freud wear to the ball under her gown? The first person who posts the correct answer in the guestbook wins an Oso High "Bite Back at ALS" wristband. Anyone, of course, is welcome to make a donation to the ALS Association and we will send you one!
Day 71, January 6, 2012. Today I took my longest ride on the Vortex; and it was also my first ride with any significant climbing. I remember when I was thinking about buying my newest mountain bike. I read a review of the bike that described it "climbing like a spider". That turned out to be a very reasonable description of the performance of the Superfly. If I were to write a review of The Vortex, I would say it "climbs like a Rocky Mountain bighorn sheep; specifically, the one that had its brains blown out by my neighbor, Kurt; by which I mean it climbs like a dead thing."
Seriously, grinding this thing up a 10% gradient is like pushing a boulder up a 20% gradient. Now, this wouldn't surprise or offend the good people in England who built The Vortex. The physics is simple. When you pedal a traditional bicycle, you generate power with muscle contractions in your legs, plus your body weight lurks directly over the pedals. On a recumbent, it's all legs. Not to mention The Vortex has three wheels and its weight is double that of a respectable road bike.
The route I selected was a counterclockwise trip around Albuquerque with a detour up to the trailhead for the La Luz trail that runs from Albuquerque's high foothills to the crest of the Sandias. From home to the parking lot at La Luz was only about 16 miles, but it took over an hour and a half on account of the 2000 feet of climbing. I fumbled with a bottle of Ensure for about 5 min. to get it out of my gear bag, but I ultimately won. So I kicked back in my portable recliner and sipped on strawberry delight while I enjoyed the view of the city and celebrated my mastery of the universe (except for the part of the universe you can only access with hands).
Then I went back down. Descending from La Luz on a bicycle is controlled chaos. The gradient exceeds 12% in several stretches; there are a few descending radius turns (turns that actually become tighter after you enter them); and there is often dirt on the road which can reach out and pull a bike right out from under its rider. Not so, however, on the Vortex because it descends… Like… A… River. I have figured out how to use The YouTube, so click here and enjoy the ride (you'll have the idea after a couple of minutes – no need to watch the whole thing). Oh yeah!
Day 72, January 5, 2012. Walk the plank. In the BVI, that was more difficult than it sounds.
The sailing went fine and something like so: Someone would fire up the engines (I couldn't turn the ignition keys); Jimmy and Clayton would untie the boat from the mooring ball that kept us in place while slept; I would shove the throttles forward and steer the boat away from things like other boats and sea monsters to a place where it was appropriate to hoist the mainsail; the boys would tug and pull until the top of the mainsail reached its happy place, about 50 feet above the deck; I would steer the boat away from the wind until the mainsail was appropriately puffy; someone would kill the engines (I couldn't push the buttons); the guys would tug on a couple more lines that would more or less deploy the sail on the front of the boat (I am going to call that sail "Fred" because the real name of that puppy is a word Dragon NaturallySpeaking can't seem to understand); Jimmy or Clayton would wrap a line around a winch and crank until Fred was appropriately puffy; once I was happy with our heading, I could push a button (with my big toe) to engage the auto pilot which would hold that heading until such time as we ran aground, arrived in Portugal, or I pushed another button; then everyone would sit down until we needed to turn the boat.
I could make small adjustments in the heading by poking buttons on the autopilot with my toes, so I leaned back in the skipper's chair, put my feet up on the instrument panel and chatted with whoever was sitting next to me. When it was time to make a big enough change of course to require moving the sails, I would growl, "ARRRRRRRRRRR!”, in my best slurred pirate-like voice; the guys would do what needed to be done and then return to the debate about whether to go to college or get a job as a crew member on one of the blue boats.
When we arrived at our destination, someone would light the engines; I would say "ARRRRRRRRRRR "; Jimmy and Clayton would wind in Fred and drop the mainsail; we would creep up to a mooring ball (so it wouldn't see us); Abby would reach down with a long pole to hook the rope attached to the mooring, haul it up to the deck, where the boys would tie it off to the boat.
So in the course of a day, I never lifted anything heavier than a can of Diet Coke or a piece of Peggy's banana bread, whichever is heavier.
Socrates’ Third Law of Motion is: for every action there are two or three equal or greater opposite reactions. I think I have that right. In any event, I know that’s true as applied to walking with ALS. Walking was the one area where I had more difficulty than anticipated. Recently I have described a sensation of being "wobbly" or "unsteady" while walking. That is somewhat vague, so I came up with a better way to explain it. Have you ever walked on a trampoline or inside one of those inflatable jumpers parents rent for a birthday party when they know they have no chance of maintaining control unless the kids are caged? With each step you take, there is a jiggly reaction from the surface upon which you are walking. My supercharged ALS reflexes have that going on to some degree with every step, even on the most stable of surfaces.
This is manageable when I'm strolling across the freeway, walking through the living room or stepping on my dog’s tail. What I discovered in the BVI was this problem compounds itself when the surface is also moving. One more cheap trick: after a couple of days on a boat, most people (including me) have a sensation of rocking even when they are not on the boat. So, when I went ashore, even though I was walking on a hard surface, the combination of my trampoline legs and the rocking in my head left me staggering like, well, a drunken sailor. Stirring some rum into this soup predictably exacerbated the situation, so I spent most of the 10 days holding on to something or someone and all jacked up on Diet Coke.
As Socrates often asked his students: "WTF?"
Days 75-73, January 2-4, 2012. The BVI are the kindergarten of Caribbean sailing. The waters are shallow and relatively calm. Navigation is, with one exception, by sight . The winter weather and sailing conditions are dominated by the 15 knot northeasterly trade winds that produce easy but fun sailing. We had those conditions only two of the 10 days we spent on the boat. The remainder of the trip we were treated to a delightfully rolling sea and 20 to 35 kn breezes.
We sailed island-to island, often stopping mid day for snorkeling and lunch. We split the evenings between dinner onboard and "restaurants" ashore. The Caribbean is not a place to go for the food, although the menu pricing will make you think you are about to have a culinary masterpiece laid before you. The service is typically enthusiastic and the surroundings can't be beat. I can think of only one restaurant that had an actual floor. So we enjoyed ocean views, warm sea breezes, rustling palms and sand in our toes. And rum drinks for dessert (or, in the case of one crew member, rum drinks from late morning until bedtime).
Sailing in heavier wind is somewhat more complicated on a catamaran then on a traditional sailboat (which I will refer to as a "single wide"). When the wind builds on a single wide, some of the excess wind will spill from the sails as the boat leans away from the wind. This eases the load on the rigging, making it somewhat less likely the mast will snap in half. On a big cat, by contrast, the wide stance of the boat limits the degree of heeling to about 2°. This means any excessive force of wind resides in the rig of a catamaran. Thus, a cat sailor needs to be more vigilant about how much canvas is hanging from his/her vessel as the wind increases. This brings me to the concepts of "true" wind and "apparent" wind.
Apparent wind velocity is the vector sum of the true wind and the headwind an object would experience in still air. The headwind velocity in still air is inverse of the object's velocity, therefore the apparent wind can also be defined as a vector subtraction: the Velocity of the wind minus the Velocity of the object. Or so says Wikipedia.
I prefer the simplicity of this diagram:
Another way to look at it is this: if you wake up, naked, on the beach and the wind is not blowing, then both the true wind and the apparent wind you experience are zero. If you get up and begin jogging at 5 mi./h toward your boat, you will feel a wind on your face (and other parts) of about 5 mi./h even though there is no true wind. In this example, the true wind speed is zero, but the apparent wind speed is 5 mi./h. Change the facts slightly. Suppose you wake up, naked, on the beach and the wind is blowing 5 mi./h. Until you begin moving, your true wind and the apparent wind are both 5 mi./h. If you get up and begin running into the wind, then the apparent wind jumps to 10 mi./h, although the true wind remains five. If you get up and run directly away from the wind at 5 mi./h, the true wind remains five, but the apparent wind becomes zero. This all gets very complicated if you run sideways into or away from the wind. See the diagram above.
How does this relate to our sailing trip? The wind speed dictates how much sail should be allowed to flap about above the boat. According to the detailed charts in the owners manual, the skipper should take the following action at the indicated wind speeds.
Full sail (be aware however that boat speed will be quite slow if the wind is at zero)
Reduce sail some more; take a sip of rum
Reduce sail even more; put the iPods into zip locks
Take down the sails; attach a diaper to the forward mast
Set the anchor; fire torpedoes at any nearby coral reef in case the anchor doesn't hold
You are probably wondering whether "wind speed" in the chart refers to true wind or apparent wind. There is a fancy instrument that tells the person at the helm the wind speed expressed either as true or apparent. The answer: it depends.
What’s the point, Doug? Here's how it occurred to me: distress, like wind, can be true or apparent. "True distress" can refer to what is actually happening in my body; while "apparent distress" can mean the perceived effect on my heart and soul. For me, motion is like sailing with the wind at my back – motion (biking, skiing, sailing) reduces the true distress of ALS to a much more manageable apparent level. Indeed, my apparent distress reached zero many times during this trip. Some samples follow:
Days 90-76, December 18, 2011-January 1, 2012. Merry Christmas! Happy Hanukkah! Happy New Year!
The gleaming blue hulls, festooned with brass and stainless steel accents, of the rich and famous decorate the outer reaches of the harbors of the British Virgin Islands during the holidays. They form a metaphorical blockade around the central harbor, dotted with the sterile white fiberglass yachts of The 1%, who – unlike the situation at home – have no tall shrubbery to help them ignore the massive gap that separates them from The 0.1%.
To further sully the inner harbor, there are people like us – renters. No linen pants; no matching shirts; no deck shoes with gold rivets (to ward off tarnish); no razors. No underwear. Without the civilized convenience of on-board laundry facilities and staff, we clothes pin our sink-washed garments to the exterior lifelines around deck. To remove any doubt or ambiguity as to our heritage, we bought a pirate flag at Spencer's and duct-taped it to fly proudly from a starboard side stay. A 43 foot-long double-wide RV with sails.
That was the setting for our magical 10 day holiday Caribbean sailing vacation.
The boat: "Obejoyful", a 2006 Leopard 43 Catamaran, built by Robertson-Caine.
Skipper: ALS Boy.
Cruise Dir.: Jean Bannon.
First Mate s: Jimmy Schneebeck and Clayton Blueher.
Engine Room and Mechanical Systems Engineer: Gene Schneebeck.
Galley Crew: Joann Patton and Charlotte Schneebeck.
Anchoring Technician a.k.a. Mooring Hooker: Abby Schneebeck.
Deck Fluff: Jessa Herren.
Check back later this week for more on our adventure, "Occupy BVI".
Days 93-91, December 15-17, 2011. Fear this… 2011-2012 will be my 42nd ski season. I moved to New Mexico primarily for easy access to the best and most underutilized skiing in the Rocky Mountains. In the 1991 season, I skied 71 days. 70 days is generally accepted as the breakpoint between a "skier" and a "ski bum". But I had a job. Over the years our family has had our cabin in Angel Fire, we have skied a minimum of 30 days per season. I taught skiing to people with disabilities in 20 different seasons, ending in 2009. I like deep snow and steep mountains, but I've never done anything approaching "extreme", and I don't like leaving the ground when I ski. That said, it has been over 30 years since I looked down a mountain with fear. Yesterday, I found myself half way down a run at Angel Fire with snow all over me and quaking knees, unable to move.
Other than that, Mrs. Lincoln, how was the play?
Quite good, actually. On Friday morning, Mike Hart picked me up and we drove to the cabin on opening day of the season. I had given very little thought to how a day skiing would go. The small changes ALS brings on a daily basis are difficult to perceive, but it has been nearly 9 months since I last clipped in. I don't know if Mike had any idea he was about to spend a weekend like a manservant. I should have expected that, but didn't. I got my base layer of pants on, but that was all I did without assistance.
Mike drove, got me dressed, hauled my equipment, and lifted me off the snow when I fell. He adjusted my clothing and equipment on the fly, fed me, and helped me gain access to things I needed in order to take a leak, if you know what I mean.
In a nutshell, here's how the skiing went. No poles. I found that with my arm and hand strength, they can only be agents of mayhem. On smooth terrain, you wouldn't notice a difference from last year except on steeper runs. Without a need for speed control in my turns, they are edge-to-edge and nice and round. Once speed control is added to my turning, the result is effective but not particularly beautiful. I haven't had to worry about terrain selection in many decades. Over the two days of skiing with Mike, I developed a rule of thumb, flowchart, decision aid:
- Stand at top of hill.
- Is anyone on the Hill?
- If no, go look for a different run.
- If yes, are any of them wearing Sooners, Longhorns or Cowboys gear?
- If no, go look for a different run.
- If yes, proceed with caution unless you also see anyone wearing a camouflage jumpsuit, in which case, proceed with reckless abandon.
Which reminds me of the greatest thing a skier has ever said. I was teaching in Breckenridge at a program for military veterans with disabilities. My student, Bob, had no use of his legs. His information sheet said he weighed 250 pounds, which is the published limit for most adaptive equipment. I suspected he tilted the scale a bit higher. Both my wrists were attached to the back of his ski by an 8 foot tether. As we stood at the top of our first run, without making eye contact, Bob said, to no one in particular: "Faster, faster… Until the thrill of speed overcomes the fear of death."
Perhaps I will go back to Breckenridge.
Days 95 and 94, December 13-14, 2011. More misfortune as a consumer. After a bike workout today, I wanted nothing more than a diet coke, but I was driving home from a gym on the north side of town. Going into a convenience store and pouring a fountain drink has become more trouble than it's worth. A drive through has become the only tenable option when I am traveling solo.
McDonald's has a sweet deal – any size fountain drink is one dollar. I had five dollars. On the whole, this looks like a transaction that should go through. The line was long, but we retired folk are in no big hurry. I only had to repeat myself once at the place where you give them your order, which I call a "win".
As I worked my way toward the window, I wrestled with my jacket to free the five dollar bill. Another win. When it was my turn to pay, I recruited the strength necessary to activate the switch for the window. At the same time, the grip my right hand had on the currency note loosened slightly, and the money fluttered – in slow motion, it seemed – into the gap between the console and my seat. I know how to fix this problem. It's not actually a very big one, after all. But my hands just don't do that anymore.
So, I apologized to the man in the window and headed home. Along the way, I slurped on my water from my Camelback. No doubt, I was more healthy when I arrived home then I would have been with a 44 ounce Diet Coke in my belly. In this way, ALS improved my health today. Yet another silver lining!
Day 96, December 12, 2011. Have you ever been to Hispania? Neither have I. In fact, I don't think there is such a place, except in the estimation of our grocery store. When a grocery store or restaurant offers "Greek food" or "Italian food", they are not announcing a limitation on the national origin of who they will serve; rather they are making a statement as to the geographic origin of the type of food. Thus, McDonald's serves "American food", not "Caucasian food"(or, as applied to people from my part of Virginia, "cracker food"). Apparently operating from the assumption there is something politically incorrect or offensive about using the word "Mexican", our grocery store’s aisle 13 is where you will find "Hispanic food". This probably has something to do with the fact the grocery chain, "Smith’s" has done quite well since they got their start in Salt Lake City selling "Mormon food".
Oh, how I digress.
Over the weekend, Jean planned to cook a favorite "Desert Southwestern Catholic food" called "posole", which is hominy cooked with pork and a proprietary blend of spices you might normally find in enchiladas. I woke up early and decided to sneak off to the grocery store to get the ingredients. I haven't been to the grocery store by myself in a long time. With the exception of finding a Hostess apple pie easily within reach (and at a kicking price), this little errand did not go well, and I don't plan to go back.
I started with the flavoring ingredients – sauces in soup-sized cans. As it turned out, they are heavy enough to me I have two use two hands to get them from the shelf, and do a granny-style foul shot to get them over the edge of the cart. Chicken broth was next on the list. As an austerity measure, I was committed to buying the boxes because they contain more than the cans. The boxes, however, are kept on the top shelf, stacked two high. I can't reach up and grab one like someone with working thumbs, so I needed to reach up to the top row and tip one box off at a time, aiming to drop them directly from their lofty perch into the shopping cart. The first one fell harmlessly into the cart, as planned. The second box, however, hit the edge of a can that was in the cart and exploded. I should have gone home at that point.
The cans of hominy are big and they are on the bottom shelf. Even with two hands, I couldn't pick up the can, so I got down on my knees on the floor so I could pull two cans off the shelf and onto the floor. I knew I couldn't get the cans up off the floor and over the edge of the cart even using the granny shot. I decided the best plan was to roll the cans up over the bottom frame of the cart onto the lower rack where you put bags of dog food or 12 packs of beer. The problem was when I pushed the can up against the cart, the cart rolled away. So, there I was, on the floor with two big cans of hominy near me and my cart rolling away. Guess who showed up? The guy who had cleaned up the chicken broth. He didn't look very happy to see me again.
Then it was time to check out. Now everything I had heaved into the cart had to come out. After watching me struggle with one can at a time (two hands), the cashier called customer service to send someone to help me unload the cart. The call over the intercom was simple enough: "customer service to register 4", but what I heard was more like "Will someone please, help the gimp up here so he can get the hell out of my lane?" Guess who? Chicken Broth/Hominy Man.
My ALS-driven hyperactive reflexes cause my legs to wobble or my hands to shake. When I am nervous, the reaction is more pronounced. "Nervous" apparently also includes "self conscious". So the line of customers was growing behind me, an employee was lifting 16 ounce cans of enchilada sauce for me, and my hands were shaking so hard I couldn't get my credit card out of my wallet and had to leave that to the cashier. Once the miracle of payment was complete the cashier sent Hominy Boy to help me get to the car. I was sufficiently flustered by the experience that my legs were shaking like they were when I descended the power line at Leadville. I reached for fixtures to use like hand rails as we made our way to the car, and held on to the cart as we walked through the parking lot. After all that, I had no cash to give Chicken Broth Boy a tip after he loaded the bags into the car.
No doubt I was overreacting somewhat, but the overall sense I had from my interaction with employees was they were thinking something like "why in the world are you here without help?" People with disabilities know what their limitations are, and probably don't often attempt grocery activities that are beyond their capability. My obvious problem is my disability keeps changing. Sometimes too fast, it seems, for me to keep up. If I go to the store alone again, it will be with a list of very small things. And some cash.
Here's the funny part. When I got home, Jean met me at the door and unloaded the car. When we got to the kitchen, guess what was sitting on the counter? Yep, all the parts for posole. Jean had bought them the night before.
Days 99-97, December 9-11, 2011. Well, now that's more like it. Thursday, Friday and Sunday I had rides on the Vortex of 29, 50 and 45 miles, respectively. No flats or other unhappy events. Most of those miles were ticked off on a 12 mile ribbon of asphalt, uninterrupted by street crossings or traffic, that is part of Albuquerque's "Bosque bike path". The path lies between an irrigation canal and the Rio Grande, skirting the edge of a Cottonwood forest named after Aldo Leopold. There are views of the river to the west, and the Sandia and Manzano Mountains to the east. Access to the path is less than 2 miles from my office, and about 6 miles from our home. I have ridden literally thousands of miles on that section of the path. Aside from the miles I have ridden with Jean on the tandem, the time I have spent on the path lounging in the comfort of the Vortex has been my favorite of all those hours.
I pondered today why that is the case. I think the reason is that, as my disease progresses, very few of my activities of daily living look the same as they did before ALS. Road biking or pedaling my new mobile la-z-boy is about all I have left that is as smooth in movement as it was before. That's why I spent over 12 hours cranking out 180 miles this week.
Another reason I am enjoying being on the bike these days is this is the off-season, so I am not really training for anything specific. My level of effort, more than in years past, has reflected the relative lack of significance in what I am doing. Or so it was on Sunday until I saw my teammates Dan Kelly and Mike Slattery heading the opposite direction on the path. They were leading a group of six riders who were the remnants of an early group ride. I spun the Vortex around and chased them down. After a brief round of "howdys", I settled in to a position on the back of the group that shrank to five and then four as they picked up the pace a bit for the 6 mile run to the north end of Albuquerque. Sitting in the draft of the group was very comfortable at 22-24 mph. On a tricycle.
Days 102-100, December 6-8, 2011. "Isn't that what Stephen Hawking has?" [Translated: "what's the big deal? He's been around longer than a black hole." ] This is one of the most common modern misconceptions about ALS. From the man himself – in an interview with Hawking earlier this year:
Q. I don’t mean to ask this disrespectfully, but there are some experts on A.L.S. who insist that you can’t possibly suffer from the condition. They say you’ve done far too well, in their opinion. How do you respond to this kind of speculation?
A. Maybe I don’t have the most common kind of motor neuron disease, which usually kills in two or three years.
It's easy to see how this kind of misinformation can affect public perception of the disease and dilute support for urgent research. I don't think I'm overstating it to say it's as if Alec Baldwin had been telling us for 30 years he had an anger management disorder, then revealed (as he was being kicked off his American airlines flight) "actually, I'm just an ***hole." Alright, maybe I am overstating it a tiny bit. Dr. Hawking clearly has a motor neuron disease. A bad one. But there are many shapes and flavors of motor neuron diseases. ALS is the one Lou Gehrig had – major league baseball one year; using a wheelchair the next; and gone the next.
Tuesday seemed like a good day for a bike ride. It was 22° at noon… I have never been big on riding when the Mercury dips below 40, but the Vortex sits very low and the chill of the wind is reduced considerably. So I decided to put on my new neoprene gloves and give it a whirl. I got started a bit later than I had planned, and the first hour and a half was ridden against a nasty cross wind or a full on headwind. At about 4 PM, I turned my back to the wind, prepared to enjoy a downwind 7 mile run to home.
I hit the gas and immediately felt the rear wheel of the trike go soft. Within 30 seconds, it was flat – the kind of flat where every revolution of the wheel brings a "thump" as the valve of the tube passes between the wheel and the asphalt. To make a long story short, of the five options I identified (three, if you toss out the "surrender" strategies), I decided to slow down and ride it home. I knew I was taking a risk of destroying the wheel in the process, but I haven't been that impressed with this hoop anyway. As it turned out, the wheel held up just fine (which is probably why I don't like the wheel – anything that durable simply can't be very fast), but the slow pace allowed my body to cool off. Way off. I was in the hot tub 30 min. before I stopped shivering.
With some mechanical help from Jimmy, I was in a position to give it another try on Wednesday. It was a few degrees warmer (30 to start), and the 28 mile ride went off without a hitch. It was when I got home the adventure started. I could have avoided the struggle if I had simply waited in my bike clothing until someone got the home, but I wanted to take the chill off by hopping in the hot tub – preferably without three layers of clothing.
I received no resistance from my gloves, shoes, socks, sweats or my hat. It was my jacket and two base layers that put up a fight for a half hour before I was able to collapse into the hot tub. Here is how I ultimately removed the long-sleeved base layers. I went to my knees on the carpeted floor, hoisted my butt as high in the air as it would go, lowered my forehead to the floor, and put my forearms on the floor in front of me. This was intended to give me a slight gravity advantage. Then I began to crawl backwards, keeping heavy pressure on my forearms so the sleeves would begin to pull off my arms. Once I had the sleeves moving, I backed through a doorway twice, using the frame to pull the main body of the shirt up from my waist. Then I rose from the floor, careful to keep my back parallel to the floor. I backed carefully into a lever-style door handle, hooked it under the material and kept backing up until it pulled the shirt off my body. Nothing to it.
Actually, if I had waited until I had warmed up to try this, it wouldn't have been so difficult. Cold, I have found, is something of a time machine – transporting me into the future for a brief glimpse of challenges I will face down the road. Enough is enough for now. I have been to the top of that mountain, and I have seen the other side. Today when I get off the Vortex I think I will sit down in front of ESPN until someone comes home.
Days 106-103, December 2-5, 2011. Things have been a bit unusual here for a few days. The wind blew 40-70 miles per hour all day on Thursday, which knocked out our phone and Internet until Saturday. We had a bit of snow Friday through Sunday and even more overnight. Today, Albuquerque schools are closed because the roads are so treacherous:
8 AM today.
Yesterday afternoon, there was a break in the weather that looked like a good time for a bike ride. I figured I would head out on the Vortex until I learned Jimmy and his friend Clayton were mountain biking in an area I could probably handle. Not only that, but the ride would take place very close to a house my mom is considering buying, and she wanted to go see it yesterday. So, I went with the guys.
I had to be very careful even on the flat and very smooth trails we rode because my hands iced over very quickly. It was fun being out there even given the chill. Early in the ride we wanted to be sure I could get from our area over to the house. We were riding between the Rio Grande on our East, and an irrigation canal on our West. The house was west of the irrigation canal. We found a bridge crossing the canal, and, while Jimmy and I waited, Clayton crossed and found a path between the subdivision fence and the canal that went all the way to the house. Satisfied, we continued our ride, took some pictures, then separated so I could go meet mom.
When I got back to the canal crossing, the plan fell apart. When Clayton accessed the path, he did so from a concrete drainage ditch. He didn't tell me there was a 4 foot tall, severely-pitched embankment he scaled to get to the path. There was no way I could lift my bike up that wall, so I rode up the drainage ditch, which ran parallel to the southern boundary fence for the subdivision, figuring I would find an access point up the hill. I did, but the subdivision is protected from mountain bikers by a combination locked gate.
Between the subdivision fence and the drainage ditch there was a coyote path winding through the chamisa, about 10 feet above the bottom of the drainage ditch where I had ridden. If I could follow the path back to where I entered the drainage, I would meet up with the path Clayton had found. The path was not rideable, as coyotes don't ride bikes. After about 10 min. of walking, my route was blocked by an impenetrable pile of Tumbleweed. I was unwilling to retrace my steps, so I decided to figure out a way to get down the embankment, back into the drainage ditch. The bike was easy. I pointed it down the wall, it rolled until it hit the flat bottom, then flipped over and came to rest on a pile of lava. I will probably not mention this if I decide to sell the bike on eBay. Getting me down the wall was somewhat more complicated, and hurt a bit.
I got back on the bike in the drainage, and rode back down toward the canal. Along the way I had a momentary standoff with a porcupine of unusual size. Then I crossed the canal and was back to square one. So, I rode north on the path with the canal between me and the house until I found a bridge about a half mile north of the house. I crossed the canal and began working my way back south toward the house. The path ended, but it appeared there was a small trail on the bank of the canal. So I worked my way down to the canal by walking and shoving my bike across the top of mounds of compressed Tumbleweed. The little trail held out for about 50 feet, and then turned into the water. By now I could see the house again, perhaps 100 m in front of me. All that stood between me and a clear path to the (no doubt locked) subdivision fence was a very steep 10 foot mud/rock/brush bank to claw my way up. Keep in mind what I'm working with in terms of arm and shoulder strength.
By now the Sun had set and it was quickly getting colder. You might be thinking "surely you had a cell phone." And I did. Jimmy had put it in my jersey pocket right before we separated. The only problem was I couldn't reach the pocket because bike jerseys have pockets only on the back and I am not strong enough to reach them without unzipping the jersey and twisting the material to the front. I would have done that except for the fact my hands were too cold to operate the zipper.
I got up the embankment by shoving my bike as far as I could, leaving the front wheel about 3 feet from the top. Then I crawled to the top, reached down, grabbed the bike by the front wheel and pulled it to the top (this will also not be in the eBay item description). When I reached the (locked) subdivision gate, I heard our Ford roar to life 100 feet or so passed the gate. I paused momentarily to pout about my phone situation again, then yelled toward the truck until Abby heard me, and another ALS-fueled adventure came to an end.
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Day 107, December 1, 2011. Here at Oso High Endurance Sports, we are committed to bringing our message to you utilizing the latest in technology, even if everyone else has been using the latest in technology for the last two years. You can receive notice of updates and new blogs by following us at Facebook or Twitter by clicking on your choice.
"I'm feeding Dad". These are not words you want to hear your children say; certainly not before they have moved you into "the home" and you are spending your days playing dominoes and drinking Ensure spiked with bourbon. Those words have been rattling around in my head for almost a week since I heard Jimmy explaining to Abby why he couldn't come to the bathroom immediately to get the hairdryer out of the bathtub (or something like that). But that's where we are. At. That's where we are at… I can eat some things that are traditional hand food (think burritos, burgers, pizza, fried chicken, mozzarella sticks, doughnuts, or anything in a cup with a large diameter straw). Look at that list again. What am I complaining about? That's food heaven! ALS rocks!!
There is a distinction, however, between "hand food", which I can eat, and "finger food", which is a challenge. Forget about "fork and spoon food", which ain't happening without help. Here's how finger food (in this case, french fries) goes: I grab a handful of maybe six fries, holding them like a kid holds an ice cream cone. I begin gnawing on them until I get down to where the fries disappear into my fist. At that point I face a difficult dilemma – open my fist to dispose of the stumps of the remaining fries (which is frowned upon by God and our Pope), or slam my hand against my open mouth, opening my hand just before it reaches my face. If my timing and the prevailing wind are on my side, half or more of the fries will make it into my mouth (this approach is frowned upon by my mother and the owner of the establishment in which we find ourselves because I look roughly like Joey Chestnut during a hotdog eating contest).
Thanksgiving at our cabin in Angel Fire was wonderful. My mom cooked a world class meal; our friend Tim Holm joined us; Jean and I got in about 6 miles of snowshoeing at the top of the mountain on two beautiful days; and we had a successful Christmas tree hunting trip our next door neighbor doesn't need to know about, hmmmkay?
This week I have put in over 100 miles in three days on the trike. It is so ergonomically comfortable I have not found myself looking forward to a ride ending except that one day when John Dunbar and I stopped way too long for milkshakes the end it got very dark (and Jean got very…um… concerned). I have had one problem. It was a relatively bad moment, and I'm not going to say anything more about it than this: it has to do with not having my waistband puller thing on the particular pair of stretchy pants I was wearing on Wednesday. I know what you're thinking. There is an 82% chance you are right; a 10% chance it was worse than what you are thinking; and an 8% chance it was not as bad as what you are thinking. Bottom line – there is a 100% chance I'm never again going out on a bike wearing shorts that don't have a waistband puller thing.