Back in the dark ages when I took Psych 101 I recall studying psychiatrist Elisabeth Kübler-Ross’s theory about grief.  She suggested there were a series of five emotional stages that a person who experiences a life-threatening or life-altering event goes through. The five stages are denial, anger, bargaining, depression and acceptance. Not everyone will experience all five of the responses and they can occur in any order. But for the sake of argument lets start at the top. Denial: No, not really. I may not have greeted it with open arms, but I was able to connect the dots of several, seemingly unrelated symptoms the moment the diagnosis was suggested. Anger: What’s the point. Even when I am pissed off no one can hear me. Bargaining: Yes I did indulge a little here. I made a donation to the ALS Association thinking perhaps what I gave for the Ice Bucket Challenge wasn’t enough. Right after sending in my donation I got a thank you email. It read:

“We estimate that 15,000 – 25,000 Americans live with ALS at any given time. When you compare that number to other diseases, it seems rare. But, consider this – because ALS is 100% fatal, people living with the disease are not with us long enough for that number to increase.”

It was a tad jarring to the zen of my morning cuppa to say the least. 100% fatal. Now, I’m not a mathematician or anything but from where I stand that strikes me as a whole shit ton of fatal. You could argue that life is 100% fatal. And you’d be right of course but, as I have alluded to before, you can hide from that type of fatal for the first 5 or 6 decades of your life without too much effort. So what was the next stage? Depression, I think. Well crap, who has time for that? The email helped snap me out of whatever malaise I might have wanted to indulge in and get on with the time we had. With the term “100% fatal” bouncing around my brain I went to a campus store with my sister Lynn and had a t-shirt made. Sometimes you need to be handled with kid gloves and sometimes you just need a smack up side the head with a dose of über reality.

Three weeks from today, if all goes according to plan, we’ll be camped in the mountains east of San Diego. Question of the hour: Are you getting nervous now that the ride is getting so close? Yes and no. Six months ago I was apprehensive about my body’s ability to hold out. Who knew where I would be in terms of functionality. But here we are three weeks from departure date and I can still pop off 100 miles. So the closer it gets the more relaxed I become. It’s almost here and I can still ride. Yesterday we averaged 17.7 mph for the 105 mile round trip. And only fell off the bike once. Although I also fell off last time I rode too. My left hand doesn’t hold on to anything. It just rests on the handlebars. Both accidents were related to unanticipated roughness in the road and my hand lost contact with the bike. As I see the bike bouncing out of control underneath me (in slow motion no less) I just try to turn the wheel to the left so my good side, where I still have a little muscle for padding, hits the road first. This goes against every grain of biking sensibility I have. Everyone knows you turn to the right so the impact doesn’t damage your gears and shifters. However, with regards to falling the correct way both falls were resounding successes (although my right shoulder, elbow, hip and knee may beg to differ). The last couple of rides I’ve been joined by Ira who along with his wife Lynny will be be joining us on the trip. I’ve known Lynny and Ira approximately forever. Rae has known them even longer. Ira has a talent for concisely, eloquently and matter-of-factly summarizing all he sees. “That’s one fall per 100 miles you’re averaging” he said as we rode on after the most recent spill. On the plus side I have 3,000 miles to perfect my technique. But also, unless we can fix this, I’m going to leave quite a chunk of my hide on the asphalt between California and Florida.

I met with the team of engineering students to try on some prototypes of hand, wrist and neck supports. These are some of the prototypes they have developed so far.

This is who I channel when wearing it.

Thank you Hong, Carl, Sharon and AJay. My  shoulder, elbow, hip, knee and wife thank you for your continued efforts. During the meeting a deep cut on my elbow kept oozing. I assured them that next time we met I would try my best not to be covered in blood.

I’m told I have a disease that is 100% fatal. That being said there is risk inherent in walking out the front door in the morning. ALS is a terrible thing, yes. I’m not going to pretend it’s not but along with it come some blessing.  I have talked much of  the “fuck it” list and doing things you’ve always wanted to do. The general association is with these types of lists are epic endeavors and challenging feats. But life is a web held together by uncountable fine strands. And the breaking of even the most seemingly irrelevant of these threads can cause the whole thing to unravel. I have been given the opportunity to do some things. But also to not leave things unsaid. Sometimes the finest of threads can be the only thing holding a person to the ledge. And sometimes all a person needs is to know is that you care in order to keep going.  All it takes is a call, a text, a few words to the person sitting or lying next to you. Sometimes it’s not your fault you can’t find the right time. The person you want to talk to can be distracted. Maybe it’s their morning to be an arsehole, maybe they are absorbed by yet another damn cat video on YouTube. You tell yourself now just isn’t the time to say what’s on your mind. You tell yourself there will be a better time. But as Janis once said “Tomorrow never happens. It’s all the same fucking day man.” Tomorrow has a knack for becoming the day after tomorrow, the week after next, the year after never. Now is the time if for no other reason than you did your part. Don’t leave things unsaid. Now is the time.

Since being diagnosed we have been connected with a lot of resources. Resources we didn’t even know existed until we needed them but are very thankful they exist. We see the ride as an opportunity to give back to those who have helped us. To give back while we can, and hopefully to raise a little awareness about ALS along the way. People say they admire how we’re facing this. But none of us really know how we’ll face a situation until actually confronted with it. It’s easy to face a challenge head on when you have an incredibly supportive group of friends and family standing beside you. I am going on a little ride. The ride even bears my name. But it’s not my ride. There are a number of people taking a significant chunk of time out of their lives to join us. Ian, Luci, Lynny, Ira, Daniel, Andi–it’s their ride. For everyone who has gone through this or will go through this. For everyone who has watched or cared for a loved one as they have gone through this. This is their ride too.Ray

Click here to Donate and support the Muscular Dystrophy Association and research on ALS

I ride a Schwinn Paramount Ti. I bought it in 1999. At the time we had never owned a new car and the Schwinn cost more than both the cars we then owned combined. In the 16 years I have owned the bike I have never thought of buying another one. I might have occassionally looked at other bikes, but only in passing and only to admire the workmanship and geometry. Never with the thought of actually riding it. OK, well once last winter up in Minneapolis I rode a fat tire bike. But only because it was snowing. That was the only time. I swear. Please don’t judge me.

I put between 5 and 8,000 miles a year on my Schwinn. At this point it has upward of 100,000 miles on it. I need it to carry me 3,000 more. My mechanic Drew has it set up so I can run the front and rear shifting off one side. Additionally, he now has both the front and rear brakes running off the right lever. We have a prosthetic maker and a group of engineering students from the University of Illinois trying to figure out how to keep my left hand from popping off the handlebars every time I hit a bump in the road while at the same time allowing me to move freely from aerobars to handlebars. They are also working on a device to hold my head up because my neck muscles are weakening. My head weighs 8 lb give or take, depending on what’s on my mind. No big deal while you are upright. But hunkered down in the aerobars for 7-8 hours it can become dead weight.

Have I mentioned that people are asking a lot of questions? Here’s one I don’t have an easy answer for: “So why are you doing this?”

“April 3rd, 1989 England’s Lake District. By the time I had reached the road leading up to the Hard Knot pass, I was already soaked through. As the road (if you could call it that) got increasingly steeper I began zig-zagging from side to side in order to keep moving. I felt that as long as I kept moving I would be okay. In the distance I could see the point where the rain turned to snow; the grassy slopes and jagged granite peeks seemed to turn white along an even line. The further I went, the stronger the wind became. Up ahead I saw someone walking hurriedly in my direction. He was attired from top to bottom in yellow rainproof gear and in every crease and fold of his clothing, not to mention his mustache, there was ice. He looked like an Arctic explorer. He said that he had been hiking the hills when the weather turned nasty and that the winds above the shelter of the valley were at gale force. He advised me to turn back then continued on his way down. I stomped my cold, wet feet to keep the circulation going, shook the rain off my poncho, looked up towards the snow and contemplated the effort it had taken to bike this far. I knew that I wasn’t going to turn back. The decision wasn’t mine to make. Something over which I had no control was already turning the pedals again. I passed a herd of sheep nonchalantly chewing grass, apparently oblivious to the howling winds. Maybe it was my imagination but even they seemed to be shaking their heads as I rode past.”

This was my first long distance bike ride. Common sense would seem to dictate that I would never want to do anything like it again. But for reasons I can’t pretend to understand this was just the beginning. I was 4 days into a bike ride up to Scotland. And not for the last time I was woefully unprepared for the conditions I had ridden into.  The ride was a hastily conceived endeavor for me to see something of England before we returned to the States. Rae and I had been traveling for three years and would soon be returning to Urbana with our three month old daughter Lisa. I was unsure if we would return to England for any length of time and I didn’t want to be one of those London-centric people who grew up in England and had never been North of the Watford Gap (England’s equivalent of the Mason-Dixon Line). I was riding an ill-fitting, second or third hand, 10 speed Raleigh with shifters on the downtube that I had bought for commuting to work. For rides of 10 miles or so on city streets it was fine. For what I was doing now, though, not so much.

“Finally, the gradient began to even out and my goal was in sight. At the top of the pass was a stone marker indicating the boarder between Cumbria and Lancashire. Once at my destination, however, I was faced with the question that we all must face at one time or another after achieving a hard earned goal: “well shit, what now?” I couldn’t exactly enjoy the view because I could hardly see anything. Just off to the side of the road I saw a sheltered area behind a grassy bank that seemed relatively dry. I cleared away the sheep droppings for a place to sit and got out a bag of dried fruit and nuts from the pannier bags on my bike. While eating, I took my shoes off and wrung out my socks. I tried to remember how long it had been since I had felt my toes and wondered whether I should be concerned. I looked up at the jagged grey stone peaks on either side of me. I got my camera out to take some pictures; not because the scenery was particularly spectacular, but because I couldn’t actually believe I was there. This morning I had been in an old farmhouse, down by a serene lake, enjoying tea and toast in front of a warm log fire. Now I was up in the hills, in a virtual blizzard, surrounded by nothing but snow, rocks and sheep. But perhaps strangest of all, I didn’t want to leave. However, as I watched the snow blow horizontally past my cozy nook, I knew that I couldn’t stay here much longer. While I had been moving, I had kept warm but now the cold was starting to make itself felt. It was time to move on.”

People ask a lot of questions when you’re planning on doing something crazy. Sometimes I think I should make up answers because the real reasons might seem trite. “Do you listen to music when you ride?” No, I prefer the sound of the wind in the rustling corn. “How do you occupy yourself?” Watching silos and water towers get bigger. “Doesn’t your butt hurt?” I don’t have one. “What do you do when you arrive at your destination?” Turn around and ride back. “Do you stop and eat?” Nope. “Oh, come on, you must eat something.” Nope, it’s just 100 miles. So you can see why it might be easier to make something up. I ride my bike to ride my bike. It’s that simple. It’s my moving meditation. The fact that turning the pedals actually gets me somewhere is almost secondary. I have often said anyone can ride 100 miles. All you need is a halfway decent bike and a very understanding spouse. But I’m assured by most people I meet that jumping on the bike and riding 100 miles before lunch isn’t normal human behavior. When I’m on the bike I feel the disease can’t touch me. I know that’s a myth. Sitting here at the computer typing with my one good hand I can feel every muscle in my body fasciculating. I really have no idea how muscles that are in constant motion (even when I sleep) can be wasting away. It doesn’t hurt, but it is a constant reminder that my body has another agenda. On my bike I just feel the wind, the rain, the sun, the cold (the teeth of the occasional dog).

I have never asked “why me?” To be honest it makes perfect sense. I have pushed my body in every imaginable way for as long as I can remember. It protests, I ignore it. Mind over body. Now it’s body over mind. Several helpful individuals have gone as far as to suggest I might have brought this upon myself.  “Well, you know . . . ” On October 18th eight of us will set out from San Diego. Most of the focus is on me though, but I don’t know which is harder, being the one going through this or being the one watching a loved one go through it. In the grand scheme of things I’m not sure there’s much of a difference. Rae and I have been together 33 years. It’s difficult to separate us out as individuals at this point. We’re Rae and Ray. We’ll get through this together as we have everything else. With a lot of help from our friends. I asked her the other day, if our situations were reversed what would she be planning. At first she didn’t want to go there. But I persisted. Then she blurted something out about taking someone on a trip to celebrate a certain occasion. I told her, fuck it, do it. We’ve spent our life putting money away, saving, not turning the heat on till December to save for this golden retirement that we’re not going to share. The problem with bucket lists is that by their inherent nature they end with your death. Why wait till it becomes a bucket list? I should have said fuck it long ago. I want everyone reading this to go start a “fuck it” list. For everything you come up with I’m sure, like me, you’ll come up with ten reasons why they’re totally impractical. Do them anyway. What are you waiting for?

A little over a year ago in August of 2014 we became grandparents. In the tub in the hospital bathroom, while our daughter Lisa labored in the room next door, I accepted the ice bucket challenge. I do not believe in an afterlife. This is the one shot we get (although I am hedging my bets and have asked a good friend to save a seat for me next to Marie Osmond just in case). But we all know where this is headed. The only difference between me this year and the person who took the ice bucket challenge last year is that I can’t hide from it anymore. Sometimes I wish I could. Sometimes I wish I could go back to believing I was going to be the first person to actually beat the system and live forever. Sometimes I wish I could go back to when ALS was just a bunch of initials. The road may go on forever but we do not. What’s on your “fuck it” list?

Peace, love and midwives

Ray

For Ben 1984-2015

Breathe in.

There are no rules to how life plays out. We have no control over it. The only thing we have control over is how we face those challenges. We are not so much a product of the challenges placed before us as we are a product of how each of us has faced those challenges.

December 31, 2014. 

We had been at the neuroscience clinic undergoing tests for about 3 hours. My wife (also Rae) and I had been trying to get used to the idea that I might have ALS for just a few short weeks. And today we ran out of other things to rule out. After the neurologist left the room a nurse and social worker entered with a book of resources and started talking about such practical issues as local caregiver support groups and renting wheelchairs. I think that was the moment it finally hit Rae. A few tears rolled down her cheeks as the nurse guided us through what was available but she maintained her composure throughout. Sure there were second and third opinions in our future but unfortunately ALS is quite efficient at providing its own second opinion. We walked home in silence that sunny but cold December day, both lost in our own thoughts. Then about halfway home Rae turned to me and said “promise me you’ll never give up.”

Sometimes you need to be careful what you ask for.

I think we diagnosed the disease fairly early in the process. Although who knows how long your body and brain compensate and deny respectively before you can no longer ignore the fact that the buckets of Ibuprofen you’re throwing at it aren’t helping. I’ve heard of people undergoing years of tests and referrals before finally arriving at a diagnosis of ALS. If I had to think about it there were subtle changes in my voice early last summer but I could ignore that. However it was exactly a year ago that I began to have difficulty playing guitar and that I couldn’t ignore. Not that I was ever going to be the next Jimmy Page but it was a form of relaxation for me and playing Yellow Submarine kept my newborn grandson Jack happy. Today I can barely raise my left arm high enough to reach the guitar neck. This shit doesn’t mess around. There is only one finger on my left hand I have any control over. With a superhuman effort of willpower (and extensive tongue chewing) I can extend my middle finger about half way but enough to get the point across. This is one of many ironies of the disease.

I would say, “ALS, this is for you,” but for some strange reason I kind of admire its purity. For all our knowledge of the human body we know next to nothing about this. There is no cure, no treatment, no way to predict how it will affect any given individual. That admiration may change as symptoms progress. But that leads me to one of the purposes of this blog. There isn’t really much out there about the effect of ALS on cycling or visa versa. It was the first thing I checked on when the neurologist said I could have the disease. Well actually, now that I think about it, that was the second thing. The first was to check Wikipedia to see if there was a special type of “Ray Spooner ALS” that was somehow different from that other type of ALS that had been in the news so much of late. But alas, no.  The one thing I found about cycling was Doug Schneebeck’s ALS Blog: “Biting Back on the Bike.”  This has practically been my bible over the last eight months.

But if I can add to that body of knowledge, it might help someone. I understand that the disease affects everyone differently. I understand as an N of one, my research has limited broader application. But the process is as much a part of the journey as the destination.

First the good news. In February my pulmonary function test results were 122% of predicted value for someone of my height, age, wt etc. Six months later they are 116% of predicted value. All this cycling shit has to be good for something. Was thinking of having a celebratory cigarette.

Now the bad news.

This is what 99% of the road around here looks like. Yet I still managed to fall off my bike yesterday. Hey, I’m talented. What can I say. But holding onto the handlebars is an issue. And don’t get me started on braking. I need to fix these problems before we hit the mountains in California. We have an appointment with a prosthetic maker next week. I’ll let you know how it goes.

Whether we have a diagnosis or not, there is a number to our days. The problems that we are going to face won’t change, but we can change how we face them. Because that’s ultimately who we are. Not a product of the challenges placed before us but a product of how we have faced those challenges.

This is how we chose to face this challenge.

Peace, love and midwives

Ray

P.S. Breathe out.