One of the first blogs I posted back in September was called “To Live And Ride With ALS.” My lofty goal was to answer the question what effect does ALS have on cycling and visa versa. In fact, that was initially one of the main points of the blog. I kind of got side tracked by life. When I look back at that original post, it’s hard not to see the inevitability of what happened. I was falling off my bike on wide open, flat roads with no obstacles. I thought I could overcome these things with mechanical modifications to the bike and prosthetics for my arm. Since we have been back I’ve gotten back into my regular routine of various doctors appointments. I went to see an orthopedic doctor a few weeks ago to see how my arm was healing. He was happy with how the x-ray looked. It showed new bone growth over the fracture so he just said to come back and see him in six weeks. And as we were leaving he added “and try not to fall.” Damn it I thought. Why couldn’t someone have told me that before the ride.

One of my favorite things about the trike is that when I come to a stop, there I am. I don’t have to clip out of the peddles, I just sit there. I can sit and drink my cappuccino or just watch the world go by or invariably both.  It’s the trike equivalent of idling (but without the greenhouse gas emissions). Got my first flat tire on the new trike. My first thought was to call Rae but then I thought well, what if this had happened while out in the country. I need to know if I can still change a flat. Fortunately the flat happened out by the Temple so I was able to pull the trike inside. My hands work better in the warm. I got the back wheel and the tire off by myself but was thwarted by the valve on the inner tube. I went to see if anyone in the office had a pair of pliers. The Rabbi and his wife (also a Rabbi) were both there and offered to help. Rabbi Jody got the tube off but then my pump wouldn’t work. So while Rabbi Alan went to their nearby home to get a pump from the garage, Rabbi Jody installed the tube and put the wheel back on. After Rabbi Alan returned with the pump he reinflated the tire and my trike was roadworthy again. I mention this incident solely because I’m fairly certain that at some point in the history of the universe a Talmudic scholar somewhere must have pondered the question: How many Rabbis does it take to change a trike tire?

Before I continue I want to re emphasize that any advise I have to offer is based on a study group of one on the subject of a disease that affects everyone differently. With that in mind this is the sum of what I think I think I know about ALS and cycling. A higher level of fitness does not dictate the speed of progression of the disease. However, it does provide a cushion for whatever that speed is going to be. At least in the initial phase of things. After the accident I was fairly sedentary for a few weeks as we drove across country. I feel that I lost more ground in that short time than in the ten months prior. ALS does not respect physical fitness (not even remotely) but it does seem to prey on inactivity. That being said, I think that going gangbusters every day doesn’t help either. Just because you can ride a certain distance at a certain speed doesn’t mean you should. After exercise your body is going to need longer to reset. To maintain maximal ability for as long as possible you have to find a place that you can live with that is below your potential. That is going to be hard for someone who is used to pushing their limits. But you can either voluntarily relinquish the outer boundaries of your capability or they will be swiftly and mercilessly taken from you along with the midrange ability.

Now, let’s talk about cycling and the ALS symptoms that no one tells you about. Excessive salivation and yawning. Both can make for awkward moments socially but also present their own unique issues with cycling. Sometimes my body produces so much saliva I feel like I’m drowning in it. Out on the road what were once snotcicles have now become droolcicles. A healthy application of lip balm before each ride will help prevent your lower lip from cracking and falling off. Now on to the yawning issue. By excessive yawning I don’t mean quantity, although that is an issue, I mean yawning so intensely that it feels like your jaw is going to have to disconnect in order to accommodate the full course of the yawn. These are not yawns you can stifle, and come in groups of way too many. One moment a person is having an intelligent conversation with you and the next moment they’re staring at your esophagus. You try to reassure them “No, really. I find that all totally fascinaaaaaaaaaaawwwwwwwnnnnn.” After about the sixth time I think they have a hard time not taking it personally.  You’d think this wouldn’t be an issue out in the middle of nowhere on a bike. But it always seems to happen when I’m approaching a cloud of bugs. There I am happily enjoying the passing scenery and then suddenly I’m involuntarily doing my best impersonation of a humpback whale harvesting krill.

ALS has succeeded in doing something that no other force in the world has been able to do. It has made me a sociable rider. In general I can go several years without riding with a single other person, outside of organized races. Friends would occasionally ask if they could come for a ride with me. I was never sure if they were serious or just making conversation so I would pause, not knowing how to respond. Then Rae would save me and tell them “you wouldn’t be able to keep up.” Sometimes they would persist. “Oh, he’ll slow down for me, we’ve known one another forever.” Another pause until Rae would again save me, adding more bluntly “No he won’t.”

As you can imagine from the above photo we were the cycling safety people’s poster children. Until recently this was probably the last time I had ridden with Sophia. I would stand in the pedals and Manu would hold on to me as we rode. I have been told that I was seen riding around the neighborhood in the rain with all the kids, steering the bike with one hand and holding an umbrella with the other. I don’t recall doing this but lack the credibility to deny it. Then the other day, out of the blue, Sophia asks if she can come for a ride next time I go. I wasn’t sure if she actually wanted to ride or was put up to it by Rae to keep an eye on me. Either way, don’t ever say no to a kid who wants to ride with you. Don’t even hesitate. Not even for a nanosecond. And if you are lucky they might come with you again.

Many moons ago before Lisa could drive I was giving her boyfriend a lift home. They sat together in the back seat. Her boyfriend was on the high school wrestling team and was talking about all the things he had to do to maintain weight to compete in a category. He spoke highly of a person on the team who held the weight loss record for losing seven pounds in a week in order to compete in a certain class. Ever the weight conscious one Lisa seemed impressed by this. So I chimed in that I had once lost ten pounds in one day when I rode a solo double century. I thought Lisa would be impressed but instead, all she said was “You don’t count dad. You’re a freak.”Over the winter I’m riding to maintain a certain baseline level of ability. Come Spring it takes five rides (30, 50, 40, 80 and 100 miles respectively) to work up to 100 miles and that’s where I stay for the rest of the year. Winter has been kind so far but the furthest I’ve ridden since our return is 50 miles and I’m becoming unsure how much, if at all, I’m going to be able to expand upon that come Spring. So the question is; what exactly am I training for? For the first time since I can remember I have no ridiculous summer rides planned. As I mentioned in a previous post, I keep a journal. One of my yearly rituals each New Year is to make predictions for the upcoming year. I have been looking back at them over the last ten years or so and am suprised by their quaint naiveté. Most of the time my predictions were way off the mark. Even with things that seemed fairly inevitable at the time. The future is like that. That’s why they call it the future. Now looking into the future is like looking through binoculars and adjusting the focus. The further down the road we get, the more into focus what lies ahead is becoming. The jury is still out as to whether that’s better than quaint naiveté.

Did I say I have no ridiculous summer rides planned? Ok, so anyone who knows me well enough will know that’s not totally true. There are certain things I would like to do and will plan to do until my body notifies me otherwise. Generally that takes about three or four memos (and a concussion) for me to pay attention. My respiratory capacity is significantly diminished. At first I just attributed it to the accident, broken ribs, partially collapsed lung, etc. But while those things have resolved, my lung capacity does not appear to have recovered from the effects of diminished use. So if anything, I’m riding to breathe. To fill every reachable alveola with O2 that my weakening diaphragm and intercostal muscles will allow. I used to be fond of saying that I live to ride. Now I ride to live.

Peace, love and midwives

Ray

It was December 15th of 2014 that the possibility I might have ALS was first suggested. It was confirmed, well, as much as you can confirm ALS, a couple of weeks later. Then of course we had to tell people. We thought it better they heard directly from us rather than social media. Telling people was surprisingly draining. You never knew how people were going to take it. Some people, Rae and I told together if they lived close enough. Others we had to tell by phone or Skype. I had to limit myself to telling one person per day. It was all I could handle. Rae once told three people in a single day. I don’t know how she did it. For me just saying the words “I have ALS” was difficult to get out. I would often choke as I tried to say the words and it sometimes took several attempts. Since that initial flurry of telling people last January I have not repeated those words. Not once.

Telling my partners at work was hard. I told them I thought it would be for the best if I stopped taking call and delivering babies since it was my hands that were most affected.  Instead I would just work in the clinic focusing on prenatal and gynecological care. I didn’t have a timeframe for how long I would continue to work but suggested I work for a year or so and see where we were at the beginning of 2016 and reevaluate then. There was nothing special about the timeframe of one year it just seemed reasonable at the time. And to be honest I thought I was going to be the guy with ALS that just kept on going. I made it to August.

Eating is always an adventure. Rae and Sophia have independently developed a set of subtle hand signals to indicate to me that I have food hanging off my face. Lisa is more direct and will announce across the table “hey Dad, you have a chunk of cheese in your beard.” I’m sure it’s just a matter of time before they just start to hose me down at the end of each meal. I’m always the last to finish eating, by far, and the kitchen is generally being cleaned up around me while I valiantly chew on. The other night I was so worn out after supper that I couldn’t even be bothered rearranging the dishes in the dish machine after everyone was done cleaning. I just sat there, watching others put the dishes in the washer. Fighting this subconscious battle between one side of my brain that wanted to yell “Noooooo! That’s not where the bowls go. And even if they did, they would face the other bloody way” While another voice in my head kept trying to quietly convince me “Let it go Ray. Just let it go.”

Manu (our son) and I often went into the mountains together. One of our first wilderness experiences was in Colorado near Ouray in 2004. We climbed Mount Sneffels, our first 14,000 ft mountain together. We hiked in and camped in the wilderness then summited the following morning. There are many things one has to know about overnighting in the back country and many of them revolve around bodily functions. The hole you dig has to be a certain depth, the place has to be a minimum distance from any body of water, you can’t just leave toilet paper there to blow around, etc. We told our two eldest kids on New Years Day of this year that I have ALS. Lisa called her husband and later admitted her first thought was that this might be something she would have to worry about her son Jack inheriting. Manu just got up and left the room. He teaches high school biology in Chicago and had taught his class about ALS during the first ice bucket challenges. Figured if people were going to take the challenge they should know a little about the disease. When he didn’t come back I went looking for him. I found him in his room. All he could say through his tears was “who’s going to teach Jack to poop in the wilderness?”

I used to get so impatient with Rae as she selected an outfit before going out. And I never understood why my opinion was sought. Offering the asked for opinion is generally a no win situation. “No, really. The first outfit you tried on was fine.” Or “Ok, yes. It makes you look fat. Can we go now?” But now, even if I had a half hour head start Rae can still get ready faster than me. I can still dress myself (not really). I’ve developed a sort of ALS chic wardrobe. Magnetic zippers, elastic sweatpants, mittens, infinity scarfs, loose tops that I can slip on over my head, zipper inserts where my laces used to be, slings for my arm for when no one is around to put my hand in my pocket for me. The theme for this years Hanukah gifts was in Sophia’s words to “shishi poopoo-ify” my ALS wardrobe. Pictures to follow. When I’m alone I have one shot at getting dressed. If I have to do it again the whole morning is gone. The most amazing thing to me really is how quickly I have let go of the need to dress myself. Helping me dress (or adjusting things I’ve attempted to put on myself) has just become part of everyones morning routine. I hope it will be as easy to let go of other things when the time comes.

I told my sister in London about the diagnosis via Skype. It was a half hour call of which I think 15 minutes was spent just staring in silence at one another. People often say they don’t know what to say. But I’m the one going through it and I don’t know what to say either. Our daughter Sophia sat there in silence when we told her also. Then she got up and said she was going for a walk. When she came back she announced to everyone that she just wasn’t going to deal with it until she had to. At the time I recall thinking she was in denial. But she now often matter of factly takes care of the little things that I think no one else notices. Like asking someone for a cloth napkin when we were out because there’s cheese and crackers on the table and she knows I would like some. There are certain foods I should no longer be eating, at least not without a drop cloth or at the very least someone trained in the Heimlich maneuver in the room. Cheese and crackers are on that list. But Sophia has my back. The quiet ease with which friends and family have integrated accommodating my rapidly evolving needs into a new normalcy has done a lot to allay my fears about many things. Sometimes I think we’re our own worst enemy when it comes to imagining the future.

Our house is almost 100 years old and unfortunately does not have a downstairs bathroom. To put in a chair lift going up the stairs would not be cheap. We had a contractor come look into the possibility of  putting on an extension to the house but before he even set foot inside, the term “prohibitively expensive” was uttered. A house this old has to have lead paint somewhere and removing that is not a trivial endeavor. There is a small sun room that might possibly accommodate an indoor portable handicap shower (easy to assemble without any tools apparently) and our daughter Sophia, who will graduate next year with a degree in Environmental Studies, thinks that an indoor composting toilet is the way to go. We have looked into moving into or renting other houses but when it comes down to it, this is our home. It’s where we raised our family. Every nook and cranny of the house says something about us. This is where we have had countless Passover Seders, deck gatherings, kids’ birthday parties. There are visions of our past everywhere you turn. Now I also have to contend with visions of myself, immobile in a chair in the living room. My future self staring back at me like a ghostly apparition.

When we told people about the diagnosis you could tell the people who had no idea what ALS was. They would call back the next day after they’d looked it up and say well, fuck. To be fair, I also looked it up myself just to make sure there wasn’t some another type of ALS out there. One that would go away with antibiotics. One year. When we were up in Chicago for our anniversary in January we passed a bus stop adorned with a poster that posed an interesting question. “Where will I stand this time next year?” I’m guessing I would normally have just walked on by but in this instance I asked Rae to take a picture of me next to it. Another of the rules Manu had to learn for hiking in the wilderness is that legs should always be a minimum of a 18 inches apart for pictures. We call this the “stance of power.” There would be no pictures of anyone I was related to on a mountaintop with their feet next to one another. Sorry, not happening. You need to look like you just conquered a peak, not like you need to take a leak. For the picture in Chicago I consciously planted my legs slightly apart. I probably overdid the stance of power thing but it was a statement. The world of ALS was new to us and I was thinking that in one year I’d be happy to be standing anywhere.

But here we are, one year down the road. Still standing. A little bruised and battered and worse for wear and tear but standing none the less. The thing about mountaineering or biking adventures is that you have to make an effort to go on them. Our life has become a daily adventure but this adventure is one that has come to us. And keeps coming.

Peace, love and midwives

Ray

My brain has no filter. All of the things that pass before me, from the earth shattering to the inconsequentially trivial, just seems to get lodged permanently in my brain. I don’t make any special effort to memorize things, it just happens. I have often pondered why this is. I think it all has to do with some subconscious process of cataloging by association. Everything is connected somehow. This is all well and fine when studying in school. It was easy to remember lectures. But can you imagine being in a relationship with someone for thirty plus years who remembers every word you ever said to them? Every movie you ever saw, who you were with, which theater. That being said, having a good memory is really all a matter of perspective. Rae says having a good memory means knowing what to forget.

April 18th, 1988. Kibbutz Matzuva, Israel. At the time, we were about two months into an intensive Hebrew course on Kibbutz Matzuva in the northern Galilee. It was an average morning in class spent wondering what on earth the teacher was talking about. I never understood why they made us start class at 6:00. I was always too busy thinking about food and watching the clock to learn anything. This morning, I recall time was going particularly slowly, it seemed that the hands of the clock were on strike. When 6:30 finally did creep around, I ran back to our room, but Rae had not gotten out of her class yet. Rather than going to the dining hall for breakfast, I thought I would prepare a couple of bowls of fruit salad from what we had left in the fridge. Rae arrived a few minutes later and we sat on the steps outside our room to eat in the balmy early morning sun. By the time we had finished with breakfast and had cleaned up, it was 6:55. We had five minutes to spare before class started again. I don’t recall if it was my idea or Rae’s, or whether it was one of those times when we just looked into each other’s eyes and had the same idea at the same time, but a few minutes later we were running down the path to the classrooms and yes, we made it to class by 7:00.

Nine months later in London on the morning of January 20th, food was the last thing on my mind. Rae was curled up on a beanbag in front of me. Neither of us had slept a wink the previous night. All I could think of was that, maybe, she would go through just one contraction without asking me to massage her back so that, maybe, I could get ten minutes sleep, or five minutes, anything. I had begun to wonder if  she was doing this to me deliberately. That if she was going to “suffer” she wasn’t going to do it alone. Finally, at 1:26 p.m., after 13 hours of hard work, as if by magic, a head appeared where a second ago there wasn’t one. Shortly there followed two arms, a body and two legs. If I had not seen it with my own eyes, I would never have believed it. Actually, even though I did see it, I still don’t believe it. Rae was reaching out with both hands, tears in her eyes, to hold the baby: “Come to Mommy, come to Mommy.” With those simple words, a curtain was drawn in our lives separating all that had gone before and all that would come after.

Have taken the trike for a spin a couple of times since coming home. Normally at this time of year I’m exercising indoors but there’s this whole Ride for Ray thing that’s still going on. So am trying to do my part. I hope he appreciates it. I’ve ridden these roads countless times but the vantage point from the trike gives you a different perspective. Or maybe it’s just me that has a different perspective. Last time I rode here the corn was being harvested. Last time I rode here I had more functional body parts. I have spent the entire year training for this one huge event. Becoming acquainted with and working within limitations to achieve a goal. But now I find the limitations becoming more absolute and there is increasingly less leeway when it comes to working within them. My body has taken to defining its own limitations and I’m not being consulted. A cyclist pulled out onto the road ahead of me. Generally I would have watched his or her riding form for a few minutes before deciding whether or not to make the effort to catch up with them. But now it seems that watching their form is just a token gesture as they disappear off into the distance ahead of me. 

To say that we were apprehensive about having a child would have been an understatement. I often hear people say they are not ready to have kids. Starting a family is probably the most insanely impractical thing we ever do to ourselves. Those of us who think we’re ready to be parents are clearly delusional. That’s the Catch 22 of parenthood. Knowing you’re not ready is the first indication that you might actually be ready. Or as ready as it’s possible to be. The arrival of our daughter Lisa obviously had some drastic effects on our life. The focus of our world seemed to turn inwards. Prior to her arrival, we regularly went out to movies, pubs, parties and visited with friends, but after the birth we didn’t feel a need to go out. To play with the baby is all we ever wanted (other than more time to play with the baby). She would laugh, we would laugh back. She would babble, we would babble back. She would sleep, we would watch. When we finally started to go out on our own again, we would regularly phone home to see how Lisa was doing. The first big heartbreak of parenthood was hearing that she was quite alright without us.

Being a parent is like that. When you become a parent that is all you are. For so much time your identity ceases to exist outside of being someone’s mum or dad. Every decision you make involves consideration for multiple individuals. Perhaps initially when the kids are small your family is sort of a big blob that goes along with you. But gradually everyone develops their own interests and schedules that need to be taken into account.  For decades this subconscious juggling act is part of your being. Then as time passes, one by one, the kids disappear off into the distance ahead. And suddenly one night you find yourself making phone calls to friends at three in the morning because the cat’s not home.

When the kids were small if we had no reason to get up, they would join us in bed. Sometimes we would read to them, sometimes they used us as a jungle gym and had a great time. We were all they needed to make them happy. We enjoyed those moments, but as joyful as these times were, there was also a hint of sadness involved. I was always aware that there would come a time when they wouldn’t want to play with us any more, or may not want to have anything to do with us at all. However, instead of letting these thoughts detract from such a rewarding experience, we are just thankful that we had children who, for a period of time, no matter how short it may now seem, let us share in their world.

Our children are part of us. Literally and figuratively. We provide the building blocks that make them. We pour every fiber of our being into raising them and hope that we give them enough to navigate the world without too much pain. I have previously said that I have no clue what goes into making a successful relationship. The same is true of parenting. There is an industry out there of parenting books and advice columns designed primarily, it seems, to make us feel incompetent. But each child is a unique expression of a human being that has never been before and never will be again. Life is too dynamic to be compartmentalized. Just because something works for someone else’s kid doesn’t mean it will work for yours. Our parenting experience is going to be different from yours but if I was going to offer advice I could sum it up in one word. Listen. Sounds simple but it’s not. We ask them why they do things but really we’re not asking to seek understanding. Their answer is often irrelevant. Our questions are too often just a vehicle to interview ourselves about why we disapprove of their actions or choices. Forego the rebuttal. Just listen. I recall spending a lot of time upset with the children when they would try to express their independence. I probably threatened them too. But of course, the only thing this succeeds in doing is driving them further away. Everyone who had been through this before with their kids tries to reassure you that one day the kids will come back. But at the time this helps not one iota.  Did our kids come back as we were assured they would? Of course. Maybe a little more tattooed and pierced than before they went away but come back they do. And the time spent quarreling is such a waste of life. Listen.

Their is no road map to parenting. You do your best and hope you have made the right choices for them. Then one day something happens and you have a “yes!” moment. And you know you did right. I recall an event, many years ago, when Sophia, our youngest daughter, was still in middle school. The phone rang and Sophia who was closest to the phone picked it up. After listening for a moment she asked “Mr or Mrs?” She looked toward me as if about to say something but paused. She then turned back to the phone and said “He can’t come to the phone right now, he’s drinking his tea.”

Peace, love and midwives

Ray

October 22, 1987. Pokhara, Nepal. Our Nepalese trek started out innocently enough, sitting in a hotel room in Kathmandu reading through a book on trekking the Annapurna Range. Sounds like fun thought I. But sitting there in relative comfort it was difficult to imagine being 17,700 feet up in the Himalayas, in a bleak, silent, rocky landscape, squinting against the blinding glare of the sun on the snow, and pushing on step by step, as if in slow motion, exhausted and dizzy from lack of oxygen. By that point we were living a life stripped to the bare bones. All superfluous baggage, both physical and psychological, had been disposed of. We were unencumbered, free to move as we pleased (local politics permitting) with everything we owned on our backs. It seemed that the happier we were the less we needed. Does it follow that the unhappier we are the more we need? For four weeks we hiked up and down (and up and down again) through the mountains with only our legs to carry us. But all adventures must come to a close.

November 17, 2015. Palatka, Florida. As we near our goal I feel compelled to switch from Eastern time to Leonard time. After our first visit at Easy Street Recumbents Micah set about detailing the modifications that would be needed in order for me to be able to safely ride and operate the trike. That evening he sent us an email attachment of the itemized invoice. There were nineteen suggested options/modifications. The title of the attachment was “The Spoonermobile.” Images immediately came to mind of me riding around wearing a mask with a cape billowing behind in the breeze. When I clicked on the attachment there was a picture of the trike under the banner “Your Chosen Configuration.” When it hurts so much to move that you flinch when someone walks too close to you it’s hard to imagine what it will be like to be pain free. Three weeks ago it took two people to help me out of bed. Yesterday I rode a trike 82 miles.

You got me singing
Even tho’ it all went wrong
You got me singing
The Hallelujah song

–“You Got Me Singing”

I can still operate the gear shifters and brake levers with my right hand without too much trouble. Holding the steering steady above 30 mph can be dicey but doable if I don’t put too much power into the pedal stroke. Other things are getting harder though. Brushing my teeth, holding a mug by the handle, opening doors. My voice is already pretty much shot. And I would love to be able to finish a meal before it was stone cold. All that aside, unless something else gets me first I am going to die of respiratory failure at some point. But when you are told you may have ALS you don’t really think of any of that. It’s hard to conceptualize not being able to eat, breath or talk. There are many struggles that lie ahead but the thing that hits the hardest is the knowledge that one day soon someone other than me is going to be wiping my arse.

We find ourselves on different sides
Of a line nobody drew
Though it all may be one in the higher eye
Down here where we live it is two

– “Different Sides”

I may have mentioned (once or twice) that I’m a nurse. And as such so are many of my friends. Many of them, bless their hearts, have said they wouldn’t have a problem taking care of that particular function for me. As honored as I am at the multitude of offers the problem is that I’m a private pooper. I try to wait till everyone has left in the morning before going. I know where all the really out of the way bathrooms are in the hospital. If I’d had a stroke on the pot it would’ve been days before they found the body. Fortunately modern technology has given us some alternate options. There is a device that sits on the toilet seat that with the push of a button can take care of that “Necessity Care Function.” Granted, someone will have to push the button. Not to mention help me on and off the toilet. But hey, who wouldn’t want to pamper themselves with a gentle, warm aerated stream on “turbo” setting.

There are many mental adjustments that come with riding a trike after a lifetime of riding a two wheeler. Each time I sit on the bike I want to reflexively reach for the seat belt. Then there is the extra width that comes with having two wheels in the front. I keep leaning to the right laboring under the misapprehension that this will somehow make me narrower but alas the trike remains the same width.  And trust me, I never lean to the right in any matter. I have always admired riders who can come to a halt and balance in place without falling. But hey, guess what. I can do that now. In fact, that’s one of the best things about the trike, when I come to a stop I don’t have to get off. I can have a drink, check my phone, take a nap. The possibilities are endless. I have also spent a lot of time pondering my visibility as semi truck wheels fly by just a few feet from my head. In order to increase visibility I now have my own official freak flag.

When I first considered buying a trike, first and foremost was the worry that no one would talk to me when I got home. I mean, three wheels! The last time I rode something with three wheels was probably 50 years ago. But my future is going to be a clinic in adjusting to regression. Soon I’ll need a sippy cup to drink from, a drape to keep me clean while eating. And did I mention that I won’t be able to wipe my arse?  That being said, after the first day I felt like I’d been riding a recumbent forever. It didn’t take long to adjust. If I can get used to something so different from my ingrained frame of reference in this short a time I think I can adjust to anything. Maybe even sharing the bathroom. In a totally unrelated bonus, Rae and her business partner own a chocolate retail store called “The Bent Bean.” She loves tooling around on the Spoonermobile after I’m done for the day. Recumbent riders are collectively known as “Bent Riders.” To be honest, that alone was reason enough to get the trike.

And let the heavens hear it
The penitential hymn
Come healing of the spirit
Come healing of the limb

-“Come Healing”

On the 19th, if all goes according to plan we will be at the Atlantic coast. We shipped my bike home to make room in the car but kept the front wheel with us. I dipped the back wheel in the Pacific and I’ll dip the front in the Atlantic. It’s not exactly how I imagined the event would transpire but does anything in life ever work out like you imagine? You adjust and move forward. Or sometimes backward or to the side. But hopefully over time, there is forward motion. Even if that involves getting used to going backward.

I’m tired of choosing desire
I been saved by a blessed fatigue
The gates of commitment unwired
And nobody trying to leave

–“Crazy”

So I guess you’re wondering when I’m going to get to the meaning of life. As you can imagine, to even think about taking this journey I would have to spend a fair amount of time in the saddle. And you’d be right. Back home I generally don’t ride with anyone. I just commune with the corn. Riding is my moving meditation. But I do believe that over the course of my decades in the saddle I have come to understand the meaning of life. And I was wondering if, by way of thank you for all the support and encouragement, would you mind if I shared it with you all today?

Now, I should emphasize, this is not information that should be sought lightly. While it may be divine in its simplicity, it can be transformative if you accept it as your credo. If you’re in a relationship and both of you like to ride and one of you takes this information to his or her heart and the other does not, it has the potential to lead to great disharmony. So I’m going to give you one last chance to stop reading.

Still with me? Ok, here it is:

If you’re stationary, you’re not moving.

Peace, love and midwives

Ray

November 10, 2015. Defuniak Springs, FL. Wait, it gets better. Before “Rays Little Fall” I had visited an emergency department once in my life. It was to get stitches. And before you ask, yes it was a biking accident. Yesterday I visited my third emergency department in three weeks and three states. The number of bullet holes in the Alabama state line sign would seem to suggest the best course of action would be to duck and keep pedaling. However, paying an impromptu visit to the Emergency Department here was probably the smartest thing I’ve let Rae make me do.

The power of the human mind for denial will never cease to amaze me. People are often incredulous at tales of women showing up in labor who didn’t even know they were pregnant. That doesn’t surprise me at all. If you don’t want something to be badly enough then you find a way to make it not so. I have spent the last year or so watching my left upper torso getting progressively smaller and my skeleton becoming more prominent as the muscle mass covering it diminishes. So imagine my surprise when my left arm and hand started to get bigger again. And bigger. We tried many things, elevating it, anti inflammatory meds, sling adjustments, sleeping with a pyramid of pillows stacked on top of me to keep my arm up. But every day my arm and hand became more swollen. Rae described my hand as looking like a glove that someone had filled to capacity with water. My skin even took on a reflective sheen. The possibility of a clot had been suggested by a friend who is a physician. But I just couldn’t deal with one more fucking problem and I’m a nurse so dependent edema it was going to be, damn it. Although I was starting to wonder where my knuckles had gone and why my fingers wouldn’t bend anymore. I hate taking off my wedding ring. But fortunately I switched it to my right hand in El Paso because at this point, if it was still on my left hand, either the ring or the finger would need cutting off.

I came to the United States on a fiancé visa. Rae and I had 90 days to get married or I would have to leave the country. Both of our parents were separating at the time after long marriages and we weren’t too sure about the point of this whole marriage thing. Ours was a marriage of convenience, so that I could get a green card. It wasn’t exactly billed as the most romantic event of the century and we even told people not to bring any gifts. Would the truth be known we had even set a date for the divorce one year later in 1984.

Did I mention that in one of my many previous lifetimes I was a jeweler? Before coming to the States I spent a month back in England. I wanted to make our wedding bands but didn’t want to spend too much money because a) I didn’t have any and b) as I said, this wasn’t exactly billed as the most romantic event of the century. So while in England I asked my divorced or separated family members if I could have their old wedding and engagement bands. I took them to one of the jewelry shops I used to work at and they let me melt them down into a bar. I rolled the bar out into one long band which I then turned into two gold rings. And voilá, two free wedding rings. As cheap as my intentions may have been, over time I have come to see the wedding ring as an external sign of an internal spiritual grace, a visible representation of an invisible bond that holds two people together–even when distance separates them. I always know that Rae is at the other end of the band on my finger.

We had just dropped off Daniel, Andi and Bill in Fairhope on the Eastern Mobile Bay coast and were headed for Pensacola. When on a whim Rae turned into the Fairhope hospital parking lot and said “lets see if they’ll see us.” I’m guessing she knew better than to ask if I wanted to go. After a few hours they finally took us back to an exam room. When the practitioner came in, before so much as laying a finger on me she just looked at my hand and said we need to get a sono to check blood flow to rule out a clot. To which I proceeded to tell her why it couldn’t be a clot because of x, y and z. And by the way, did I mention that I’m a nurse?

The sono tech spent about 30 seconds on my neck and forearm respectively and about 15 minutes on my upper arm. Rae asked if she could see any clots. To which the tech curtly replied “we’re not allowed to say anything.” Which is tech speak for “you’re fucked.” Technically speaking I was right. There wasn’t “a” clot. There were two. So now I can add DVT’s to my ever growing list of health issues. I’ll be on an anticoagulant for the next 6 months. But more importantly I’ll be on a trike in 48 hours. I just have to try not to do anything that might cause me to bleed for a while. My trike shipped from Easy Street Recumbents in Austin today. We rendezvous with it on the 12th in Tallahassee. My trike is the one in the box, not the rickshaw thingy in the picture. I think.

With each ED visit I also get a new arm brace. Actually, this is #4 including the one I got from the clinic in El Paso. This one covers my fingers. So if anyone asks how I am, I can say “I can’t see my fingers, so as far as I can tell everything’s fine.” From Tallahassee we will have 8 days left of riding to get to St Augustine. I’ve been looking at the roads as we’ve driven along. Some are narrow. Some have no shoulders. Some are quite busy although we seem to be past most of the logging trucks that filled the roads in Louisiana. I have thus far not been to an Emergency Department in Florida. Depending on when you are reading this you’ll know whether or not I made it to the Atlantic. I hate it when people know more about my future than I do.

A certain amount of denial is required for me to get back on a moving vehicle without seatbelts or airbags. I am supposed to keep my arm elevated to help reduce the swelling. I could put a pile of pillows on my lap on the trike to keep my arm up. That’s the good thing about a recumbent, I wouldn’t need too many pillows to raise my arm above the level of my heart. I might even strap a few pillows to my head too. There’s nothing that cries out “street cred” like riding a recumbent trike surrounded by pillows. This trike, like my Schwinn, is fully operational by the right hand. The hand that now bears my wedding ring.

Sometimes people ask me what is the secret to a long standing relationship. If I knew the answer to that I’d write a book. Relationships are such a crap shoot. Our eldest daughter is an incurable romantic. She once asked: “Dad, how long did you and mommy date for?” I thought for a while and responded “Oh, about 30 minutes.” “Euwww. Dad!” I’m guessing that wasn’t the response she was hoping for. I was going to add “it would have been less if I could have walked in a straight line” but thought better of it. We’re a one night stand that has lasted nearly 34 years. I don’t really recall if we actually decided not to bother getting divorced or just decided that marriage wasn’t so bad after all. Maybe we just stopped denying we loved one another.

The only advice I have to offer is learn to say sorry–and mean it. Beyond that I would just say treat yourself and each other with respect. When frustration and difficulty assail your relationship, as they will  at one time or another, focus on what is right between you, not only on the part that seems wrong. Remind yourselves often of what brought you together (even if it was a brand of beer).

Peace, love and midwives

Ray

October 28th, 2015. Fort Davis, TX. We drove over the Emery Pass today. 8,000 feet. There were no guard rails. There were shear drops on every turn. Narrow roads. 360 degree switchbacks. The sort of thing that makes a pile of rocks sound appealing by comparison.

At the time Lisa was the manager of a coffeeshop. One of her customers owned a funeral home in a huge Victorian mansion that he offered for the ceremony. There was a small chapel with chairs on each side that he used for the viewings that could be used for the wedding. We put a semi circle of small pillars with flowers on top in the front of the chapel because the chapel was fronted by an insert that was awfully, well, coffin shaped.  There was a big sign outside the building that read “Funeral Home.” A sign was made about the wedding and stuck up to cover the “eral” part of “Funeral Home” sign. So that if you didn’t know the actual purpose of the building the sign just read “Fun Home.”

We had the reception back at our house. Anyone who asked to help we gave an aluminium baking tray with a bunch of ingredients and cooking instructions to bake something for the reception. Lisa bought her own wedding dress and Corey wore his Marine dress blues. I think the wedding cost us about $600.

Before I would marry a couple we would all meet to make sure of mutual compatibility. For my part I would ask them one question. Do you love this person for who they are and not for who you think they can become? I don’t ask for an answer then and there, it’s just something I want the couple to think about. And I guess I’m asking this question more of the women than the men. The problem is that men don’t change. We think we do. We think we make all these concessions but we don’t. We might rearrange our priorities but with the idea of getting the same end result, not actually changing things. We are not stubborn. We are not pigheaded. We are just who we are. We are the men you fell in love with. I’m not saying men are totally incapable of change but waiting for it to happen is akin to watching a glacier melt (global warming not withstanding). You get involved in a relationship for who the person is. Not what you one day think they will become. To do otherwise is to court disappointment. I can’t change who I am. Even after the fall I’m trying to figure out how to get back on a bike to complete this ride. I have no business doing so for more reasons than I care to count. But that part of my brain has no off switch. I can’t help it. No matter how much it hurts to move I can’t stop planning. I will continue to mend for now, while everyone out there rides the miles I can not. I am humbled by the over whelming enthusiasm from friends, family and strangers from all over the world. But I have to finish what we started. Even if it’s just the last part in Florida. Maybe I need a three wheeler that is low to the ground. Maybe I need a bike like the Pathfinder Mars Lander that is surrounded by airbags so I can slam into any surface at high velocity and just bounce. Maybe I need a lobotomy.

Another perspective on events of October 22, 2015 from a guest author.

Wheelmen

I had never realized before how intimate you become with someone when you ride thousands of miles on bicycles with them.  Sure, when you go out on the local group ride or circuit race, you shop around the group to try and find a nice steady wheel to follow and keep near the front and hope Old Man Trouble doesn’t come to find you.  You pay vague attention to the rider, maybe what team he’s on and how big or small he is and that’s about it.  If that little romance doesn’t pan out you just go looking around the group for another steady wheel to follow.  When you are riding with one other person in a two man pace line for mile after mile after mile, hopefully across an entire country, something else happens.

October 24th, Scottsdale, AZ. It took me fifteen minutes to get out of bed this morning. Ian and Rae offered to help me get up but I was determined that I could do this on my own. When I’m on my back I feel as helpless as a turtle that had been flipped over trying to right itself. Eventually they ignored my protests, put their arms around me and said “this is going to hurt” and just hauled me up. I think more because they were done listening to my grunting and groaning rather than any altruistic desire to help.

Ian, Luci, Lynny and Ira had various time constraints and we knew from the start that they were not going to be able to complete the whole ride. So while I mend here in AZ, Lynny and Ira leave today to head on down the route with the goal of completing the last part in Florida before they will have to head home. Ian’s wife Kate is driving out from LA with their daughter Violet to pick Ian up. And Luci will be flying home to Minnesota. Which will leave Rae, Daniel, Andi and me to continue on towards El Paso, hopefully, Monday. Daniel and Andi will still be riding. So, for now at least, this is the last time we shall all be together.

So, do you want to hear my plan? Currently, between what we have ridden so far and what Lynny, Ira, Daniel and Andi will ride, there are miles that would not get ridden. So, I’m asking you to help make up that deficit. I would like people to ride and donate those miles. There is a site we’ve set up that you can log into and “Ride for Ray.”  Just click on the link below to log your miles. 5 miles, 10 miles, 100 miles. Anything you are able to do will help the cause.

Ride For Ray

Oh, and one other thing. I would like you to submit a picture or a short video of you riding. Just a short ten second video and send it to me at the following email address: bychopath13@gmail.com. If possible can you tell me who you are and where you are from in the email. You can also post a picture of yourself out on a ride and then put it on Instagram with the hashtag #RideforRay. Then every day on the blog as we go on I will include a video montage of as many of the videos as possible of the people out there “Riding for Ray.” It will have a totally epic soundtrack. I really look forward to hearing from you.

I am contemplating things that someone who took 15 minutes to get out of bed has no business contemplating. Various thoughts have entered my mind about being able to ride the last leg of the route myself. I don’t want to just get on a bike at the Atlantic to ceremoniously dip my wheel. Obviously my physical condition will dictate what I’m capable of. But ideally I need to work for it. Maybe ride the last few hundred miles or so. I would need something on three wheels to do this. The problem with living in my head is that my brain is in constant motion.  Even when my body can barely move. I do not do stationary very well. This does not bode well for my future, I know. I’ve been in pain before but it’s been the sort of pain that I’ve been able to ignore. This pain is different. It makes itself known with every step and every breath. The one good thing about all the pain though is that it is the only thing that has so far succeeded in occasionally making me forget that I have ALS. Despite this I’m hoping that it will be back to the level I can ignore by the time we get to Florida in a few weeks.

Now that I’m not riding, Rae has changed her focus. She isn’t shoving food in my face every second. However, one of the things that we were given in the hospital was an incentive spirometer. I have to inhale and exhale into it to maximally expand my lungs and prevent the left lung from collapsing further, and also hopefully prevent me from getting pneumonia. So now, instead of food, every time that I turn around Rae is sticking a tube into my mouth and saying “Here, blow this.”

A long time ago in the initial planning stages I sent Ian a text. “Ray and Ian go for a bike ride. What could possibly go wrong?” While this didn’t go off as planned, it added another chapter to our storied past. Thank you Ian for more than I can express in words.

Peace, love and midwives

Ray

October 23rd, 2015, Scottsdale, AZ. I know that I’m a very lucky man. I woke this morning at 6:15 am. Rae and Ian were at the bedside with a Starbucks cappuccino for me. Most people with this kind of fall would have broken other bones and at least their collar bone. This is generally caused by putting their arm out to brace the fall. This hasn’t been an option for me for some time. As Ian pointed out, the way I fell was dictated strictly by the laws of physics. I fell on my arm. I broke my arm. I could have broken a lot more. I could have broken my leg. I could have broken my back, oh wait, I did break my back. But I walked out of the hospital today less than 24 hours after the accident with Lynny, Ira , Ian and Rae by my side. The nurse that admitted me yesterday was the same nurse who discharged me today. She said that she had to escort me to the elevator but she knew better than to offer me a wheelchair.

I spoke with my mum and sister in England. The phone is not the best form of communication for me but they seemed to understand most of what I said. I’m a lifelong mumbler so I know when people are just nodding and smiling to be polite. These day it seems half the time I can’t even understand what I’m saying myself. But this morning my voice was a little clearer to me. Wouldn’t it be great if a blow to the head was all it took to hit the reset? As long as you survived, that is. The place we’re staying has a hot tub. I think my body had forgotten what it felt like for me to be kind to it.

I know that I’m a lucky man. Lynny and Ira’s friends, Linda and Fred in Scottsdale became our next road angels and provided a place for me to recuperate.  And we are now all sitting by the pool, eating sandwiches that were delivered from a local bakery and paid for by the nursing and midwifery staff of Labor and Delivery at Carle Hospital where I used to work.

We are all a long way from home. And a long way from our goal. I will never ride my road bike again (for more than 6 miles on a Wednesday). We are probably going to ship it home so that we have more room in the car. I thank everyone for their offers of tandems and recumbents, but right now sitting and lying down is painful. Friends and strangers alike are asking if they can help. And do I have a plan. Lying in bed in the hospital I was making a plan. Although it has been modified a little since the morphine wore off. But there may be a way at least in spirit that this ride can be completed. Everyone else on the team can still ride. And everyone reading this, no matter where you are, can be part of completing the journey by riding and donating miles. Stay tuned. At present we plan to leave on Monday and still follow the route to St Augustine.

Peace, love and midwives

Ray

October 23, 2015. Phoenix AZ. John C Lincoln Medical Center. Room 540. Through all the training and preparation I have done for this ride I never actually believed I would complete it. I always thought some how, some way there were just too many miles for me not to hurt myself. Prior to this year I can’t remember the last time I fell. But not trying to do the ride was unacceptable. Yesterday morning we were cruising along at 25 mph and I felt great and for the first time ever the thought that I might actually be able to pull this off popped into my mind.  We were riding through Phoenix and made it through all the traffic and were on a bike path next to the canal. No traffic, minimal pedestrians, no obstacles to speak of.  For the whole ride I have been focused on the road in front of me, looking for obstacles and only occasionally stealing a glance at the scenery around me (and Ian’s butt in front of me).

I think on the bike path I allowed my mind to wander.  I got too close to a curb while looking around and just went over it. On the other side of the curb there was gravel as far as the eye could see in both directions. Except for one 10 foot section of large rocks.  It happened very quickly, but as I went flying over the bike the irony of where I was about to fall still had time to register.  I don’t recall going over the handlebars, but Ian says that I did.  I lay there on a bed of rocks yelling in pain, trying to get myself to shut up,  but this just had to run its course. Once I gathered my faculties Ian helped me to the curb to sit down.  He asked me if he should call Rae or an ambulance then asked a couple of other questions that I should have known the answers to but didn’t.  Then he decided himself to call an ambulance.  I have never broken a bone before, but there is no mistaking the feeling of cracked bone rubbing on cracked bone. The paramedic who braced my arm said “ooooh, yup, that’s broken.”

In a previous lifetime I would still have been trying to figure out ways of continuing the ride but as they hoisted me into the back of the ambulance and closed the doors I knew it was over for me.  There were so many places I could have fallen over the last 5 days in the middle of nowhere. But I ended up falling less than one mile from a trauma center.  I have never ridden in an ambulance before either.  It was a decidedly short ride though. No flying down the highway through stop signs with lights and sirens going. I felt cheated. It seemed that no sooner had they closed the doors then they were opening them again and wheeling me into the ER where the first thing they did was cut off my Rays Little Ride jersey. Several X-rays, MRI’s, EKG’s and CAT scans later I am told I have three fractured vertebrae, three fractured ribs, a pneumothorax, a fractured humerus and a concussion. On the X-ray they also pointed out to me my collection of old fractured ribs from previous falls. Apparently my rib cage is a living history of my cycling mishaps.

I have never spent the night in the hospital either, at least not when I wasn’t being paid to be there so it was a day of many firsts. The question is, now what? It is now the morning after and on the wall at the end of the bed there is a checklist on the whiteboard of people that have to come and see me to give me the all clear. The only blank box left is a cognitive evaluation. Once they arrive and sign off, we will be on our way. What exactly that means for the future of the ride? This we will be talking about with the team when we get out of here. They are waiting back at the hotel room with fresh bagels, cream cheese and lox.

Ray

October 21, 1990. Urbana, IL. We did not find out the gender of any of our kids ahead of time. When Rae was expecting with our second we had some girls’ names that we really liked, but if it was going to be a boy Rae, wanted to name him Emanuel after her grandfather. I wasn’t crazy about the name at the time. Towards the end of the pregnancy we knew that the baby was breech and we were told to go to the hospital as soon as possible if anything like contractions started. That Sunday we had just had a huge supper of challah and minestrone soup. When Rae called at me from upstairs and said that there was a lot of bloody show and mucous in the toilet. So we left immediately for the hospital. When the nurse checked for dilation she said “Congratulations you’re six centimeters…….. and your baby has 5 toes.” At that point what seemed like 20 people descended on the room, starting IV, shaving, verifying history, giving Rae medication to prevent aspiration and then they rushed us to the OR. I was initially allowed in the OR, but as soon as the doctor arrived they put her to sleep and told me that I had to leave.  I wanted to stay and hold Rae’s hand through the procedure. “It’s okay, I’m a nursing student” was the first thing I could think of. Which to me meant a lot, but to the people in the OR  it meant less than zero and they shuttled me out of the door. I watched the birth of our son through a small, square window in a wooden door.  After the c-section they were wheeling Rae to the recovery room and they brought the baby to show her. She was obviously in a lot of pain but wanted to hold the baby. It’s a boy they announced as they handed her the baby. She looked at me, and said “His name is Emanuel, do you have a problem with that?”

October 21, 2015. Wickenberg, AZ.  The rotating support crew got up early and made us a huge breakfast of oatmeal, sandwiches, and hot tea. Then the assembled masses sang “Happy Birthday” over the phone, two time zones away, to our son–who now goes by Manu. We had just gotten up, but he was already at work and had taught his first class of the day at the high school in Chicago where he works. You know, one day there you are losing your mucous plug and in what seems like the blink of an eye they’re teaching on the Westside of Chicago. Sigh. Where does the time go.

I guess you know the honeymoon is over when you fall and all people do is complain that you’re getting blood on everything. When I used to work on Labor and Delivery we had a sign up that would indicate the number of days without a person falling on the unit. If I still worked there it would perpetually read zero. Today was easier than yesterday. I don’t think I’ve ever spent so much time riding in a straight line. Ever. When I looked ahead at the road it seemed that the telegraph poles would get shorter as they stretched off into the distance. Giving the illusion that up ahead just over the horizon was downhill. Despite the fact the poles kept getting shorter the promised downhill did not appear. I think what I was seeing was a result of the curvature in the surface of the planet.

The last week before I left for the trip was total chaos. Every day was full of things that needed to be done. But our youngest daughter Sophia called and wanted me to visit her at college before I left. She lives three hours away and I did not really have a day to spare to do this. But when your kids want to spend time with you, you make the time. We only had a few hours between classes and when she had to work, so she had made an itinerary to make the best use of the time. She showed me her new apartment, explaining every item on every shelf in great detail. We had coffee. Then ordered pizza.  The pizza we took to a local park to eat for a picnic. Eventually it was getting close to work time and Sophia said we had to leave. I know I had reservations about finding the time to visit but that moment, there on the picnic blanket watching the autumn leaves blow. That moment I wanted to last forever.

Do you know who went to their grave thinking: “You know what? I spent too much time with my kids.” Fucking no one, that’s who.

Peace, love and midwives

Ray

October 20th, 2015. Quartzsite, AZ. 112 miles and 5,992 calories later. It’s not that late but everyone has gone to bed. Except for me and Luci who is typing my blog for me. I kinda want to go to bed too but I’m drinking my fourth protein shake of the day. I may make fun of Rae for the seriousness with which she takes her task, but at this point, she’s probably the only thing keeping me on the bike. It was 51 degrees yesterday when we left Descanso. It was 81 degrees today when we left Brawley. It didn’t get any cooler. We spent a good portion of today riding through the desert surrounded on all sides by huge sand dunes. Hydration is the next problem to solve.

My weight dropped below 140 for the first time and I’m sure water weight was a good part of the weight loss (yes, yes, denial again. I know). I can’t drink from the water bottles while I ride because I can’t let go of the handlebars with my good hand to get them. So we have to stop riding whenever I wanted to drink. Before you suggest the camelback my cheek muscles don’t work so well. I can’t use a straw (or kiss for that matter). On the plus side I can finally say without fear of contradiction that I don’t suck (badaboom! We’ll be in town till tomorrow and I’m available for weddings, birthdays and bar mitzvahs). Whenever our support crew meets up with us Rae asks Ian how much I have drunk. He usually tries to change the subject. One of the good things about this arrangement is that Ian generally gets in trouble for my infractions. “Ian! You’re supposed to be looking after him.” Whenever I stop riding, the support crew descends upon me, removing layers of clothing, putting on others, applying sunscreen, filling water bottles, cleaning wounds, wiping off blood, throwing peanut butter sandwiches at my face. Then we get back on the road. To be honest I feel like a formula one racer at a pit stop.

There is no GoPro footage today because the mount snapped. All the vibration finally took its toll. It may be tested by BMX racers, mountaineers and extreme skateboarders but did anyone think to send it on a little road ride? Huh? Anything to say Mr. GoPro man?

Since the beginning of the ride two people have mentioned that I have been ruining my one fall per 100 miles average. Well, not to disappoint, I did manage to fall today. Right in front of Rae and Ian, too. Both of them witnessed me do it. I was barely moving and we’re still not quite sure how I managed to fall. I guess I’m just talented, what can I say?

Towards the end of the day we crossed the Colorado River and are now in Arizona. We spent what seemed like way too much time on Highway 10. Compared to the bleak moonscape of the desert in the morning it was quite the contrast. We began the day in total isolation and by afternoon we were riding along the interstate shoulder, dodging chunks of rubber and engine parts;  just four feet from instant death.

Rae commented that my voice is getting worse. I responded that that was because whenever we’re together she’s shoveling food down my throat.

Rae: “You’re losing weight, here eat this sandwich.” Me: “Hmgh phut mmhg phut.” Rae: “Then I want you to drink this protein shake.” Me: “gmgh frchk phut.” Rae: “Ian. How many times did he pee while riding?” Ian: “I think we can still catch the Cubs-Mets game.” Rae: “Eat this hard boiled egg, it’s good for you.” Me: “Shphung phut gugh” Rae: “I really don’t like the way your voice sounds.”

And so it goes. Life on the road with Team: Ray Goes For A Little Ride.

Peace, love and midwives

Ray

October 19, 2015. Brawley, CA. I have become Rae’s science project. She consulted with several nutritionists before the ride. She weighs me before and after each meal. She weighs me at the beginning and end of each day. Everything I eat is dictated to Lynny, Luci or Andi and meticulously catalogued in a little blue composition notebook.

If I eat anything on the road, I take a picture of the nutritional facts and send it to her. When we come in she grills Ian about how much and what I ate extra, to write in her notebook. Rae has also put Ian in charge of making sure that I pee every two hours, although how he’s supposed to do this I’m not sure. Check my levels maybe? We went to a specialist in St. Louis, M.O. a month or so before the ride. One of the things that he said that made the biggest impression on me is that when he sees people get into a negative caloric balance (as in expending more calories than what they consume) the disease progresses more rapidly. I don’t eat that much when I ride in general so, that’s obviously something that has to change. At this point my whole life has become an experiment. I’m riding across the country with ALS.

Tonight we stopped in Brawley, CA. The innkeeper lent us his grill, and brought out a folding table and we dined alfresco in the parking lot. Consuming calories presents several challenges. Apart from the sheer quantity that I have to eat–I burned 5,338  today alone–getting it from my mouth to my stomach can be an issue. When I try to drink something there are generally two things can happen. A) It can go down my throat. Or B) It can come back out my mouth (sometimes with surprising velocity). And today I added an option C) to my repertoire while drinking a cold frappuccino when it came back up out my nose. Eating, presents its own set of challenges. Once I put food in my mouth it’s a considerable investment of time before I can talk again. During dinner conversations, if there is something I wish to contribute it’s generally three topics along before I can safely talk without the people around me needing protective clothing. It’s as if my life is on a perpetual five minute delay during dinner.

When we left Descanso this morning we hit uphills right away. Strangely I feel more confident going uphill. I feel like I have more control. Going downhill, I’m always on the brake for fear of getting up too much speed and hitting a pothole or a rock and losing control of the bike. The option of holding the drops is something I no longer have. So I can grip the brake hoods with my good hand which gives me stability (or at least the illusion thereof) but I have no ability to brake. Or I can reach release my deathgrip and extend my fingers to the brakes but I lose all stability. For 20 miles of today’s ride the road was in significant disrepair, the road was so shaky that my GoPro fell off, along with the mounting hardware which also serves to keep my hands attached to the bike. To be honest, at the end of the road, I was shocked that my wheels were still attached. But our support crew met us along the way and some makeshift repairs were done using Ian’s electrical tape (who the hell carries electrical tape while riding a bike?). And we headed back out.

As the day progressed and we hit more downhill. A lot more down hill. With each descent I became a little more confident (or stupid depending on your perspective).  As I was going downhill watching one of my riding partners sail on ahead of me, I thought to myself, this is silly. Either I can crawl across the country at 10 mph and be safe, or I can say fuck it, throw caution to the wind and let it rip. Ten points if you can guess which one I didn’t do.

“Gonna leave this world for a while. Now I’m free………”

Peace, love and midwives,

Ray

Had my first ride related dream last night. At least that I recall. Started out in a big city by the sea. The map said LA. As I was riding out of town, there where lots of roadworks (although not much traffic). This makes sense, I think, since I’m more worried about the terrain than traffic. Eventually, the route got off the road and was a path through the woods. I kept checking the map to make sure I was on the right path but the map said yes. The path was mainly pine needles and half hidden tree roots. As it got steeper, I left my bike behind and started to walk instead. After what didn’t seem like any time at all, I ended up back in LA by the coast where I had started. The last thing I recall was a guy driving me out of town to get back to where I had left my bike. We passed a building where a black woman was standing in a window playing a stringed instrument that I didn’t recognize and singing (to me, I think) as I passed. Interpretation, anyone?

This morning, the person who will most likely be my last student had his Bar Mitzvah. I listened to some of the recordings I made for him 5-6 months ago. I had to listen for a while before I could actually acknowledge that was my voice. This Bar Mitzvah was particularly poignant in that thirteen years ago, on a rainy November afternoon, I spent some quality time with his parents. And eventually him. In his speech, he mentioned that I had been there for his birth. He thanked me for being a big part of the two most important events of his life so far.

Bike and arm modifications are finished. Thanks to all who participated. Have a couple of wrist and thumb braces to give my hand stability. No, the bolt does not go all the way through but might actually be helpful if it did. I also have an adjustable head and neck support that clips on and off as needed, to my riding shorts.

I have an elbow brace which I do need but weight is an issue. The wrist brace weighs a few ounces but even that adds an extra layer of difficulty with arm mobility. May just save it for days when I have lots of downhill. We put a bar across the top of my aerobars which, along with the wrist brace, will hopefully stop my hand from popping off the bars every time I hit a pothole. And as an added bonus, it also doubles as a GoPro mount.

Lastly, I have a shoulder brace. My shoulders don’t really need bracing but I could do with the padding on what I see as the inevitable falls. Is it comfortable? No, but it may be the difference between finishing the ride and not. I looked at more substantial gear with better padding but I looked more like an extra in Game Of Thrones, so went with the minimalist approach.

Whether I’m awake or asleep, it appears that this is the ride of my dreams.  Although these are not exactly the circumstances under which I envisioned doing it. It’s been almost ten months to the day that the neurologist suggested we do the ride this year. Ten months since the idea was just a germinating seed. Ten months since I thought… there’s no way in hell I can be ready this year. Yet here we are. There are so many people I owe for the fact I’m actually about to do it. I needed pedals. Pedals were donated. I needed back-up wheels. Wheels appeared. The cycling community donated money for the spare parts I’ll need on the ride. Drew, my mechanic, came in on his days off to get my bike ready. Tomorrow it all comes together and we hit the road (hopefully, just figuratively). Took this photo on my last Illinois ride. I’m guessing the scenery will most likely be a bit different tomorrow.

I keep a journal. Have for as long as I can remember. It’s where the seeds of most of the ideas I write about come from. I wish I knew if the difficulty I’m having holding the pen to write is because the weather is getting colder or disease progression (yes, this far in I can still find a use for denial). I am constantly revising what I will do with the available time we have. Certain tasks take precedence based on which parts of my body are being affected. I try to come up with a tentative timetable of ability. But unfortunately ALS presents a moving target. The only time we can ever be really sure of is now. And now! This is what’s about to go down.

Peace, love and midwives

Ray

A great deal of what I write starts simply by pondering the answer to a question I’m asked. I have intentionally steered away from religion and spirituality just because it courts controversy. But the question keeps coming up in various forms: “How have your religious beliefs influenced how you have accepted the diagnosis?” Well, you asked. I should begin by saying that any beliefs I may have about a higher power are informed more by the things I saw on a daily basis in my work as a midwife rather than a specific set of religious beliefs. When someone comes for a prenatal visit the nature of what we would discuss would evolve over the course of the pregnancy. Early on it’s generally about changes going on in their body and a lot of “is this normal?” The middle part is the honeymoon stage where everything is on cruise control. Then somewhere around 32-34 weeks it finally sinks in. Shit. This baby’s got to come out at some point. “And refresh my memory, where’s it coming out of again?” A lot of people at prenatal visits would ask if I believed in God. I’m not sure if there’s a correlation but usually the question came up in that last part of the pregnancy.

Before I will answer the question of whether or not I believe in God I will first ask you to define who or what you mean by God. I’m always pleasantly surprised by the variety of answers I get. There is a process going on inside the people I’m talking to. The creation of a new life from just two cells. Once those two unique cells combine the division begins. First from just one into two. Then a couple of trillion cell divisions later, voilà! A new human being. There are so many opportunities for it to go wrong, yet for the most part it does not. Throughout the process every cell knows what it’s going to be. A red blood cell, a finger nail, an intestine. Within the micro-universe of every cell in our body that has a nucleus is the entire DNA blue print for a new one of us. I mean who comes up with this shit! It’s a magnificent process. I believe Darwin’s Theory of Evolution to be sound and scientific, yet I also believe the process of conception to birth is too beautiful to be the result of random process of evolution. Even given the countless millennia of time I can not see how we arrived at this point solely through a process of natural selection and chance. I feel that something must have set the process in motion. Whether or not that something is still shepherding the process along I am uncertain.

People ask if I eat anything special before I ride. The answer is yes but not in the way you think. Yesterday I ate a couple of leftover home baked cranberry scones with a cuppa tea (Brook Bond PG Tips, always) before I left. Even when I could swallow without difficulty, Power Bars made me gag and have not been part of my regular routine. Normally I train to peak around mid to late summer. When I started training to ride across the country there was still snow on the ground. The whole year has been a steady build up to this one event. The corn has been planted and harvested. Winter, Spring and Summer have come and gone and I’m trying to figure out a distance and pace I can maintain daily for a month with a body that changes unpredictably. It was cold yesterday. By cold I mean in the 50s but the cold is not a friend of a body with ALS. There was a 20 m.p.h. northeasterly crosswind. Any strong wind that is not blowing parallel to the direction I’m riding offers yet another challenge to staying upright. The going was slow but steady. But once I turned around to come home I just hunkered down in the aerobars, took it up to 30 m.p.h. . . . and let go. The thought popped up momentarily that I should probably slow down before proving, the hard way, the validity behind Darwin’s theory of natural selection, but the thought was immediately suppressed. There’s just something about riding with the wind. The road rushes by underneath you as you fly along in a noiseless bubble. The only sound is the tires on the blacktop as the world flies quietly by. This is why I ride. There is nothing that can compare to the thrill of the open road and the fiber rush from a home made cranberry scone.

December 15, 2014. Intestinal cancer runs in my family so I have to get a colonoscopy every five years. In a rather unfortunate oversight in scheduling I saw the neurologist for the first time the day before I was set up for a routine colonoscopy. It was the day the possibility of ALS was suggested for the first time. This wasn’t how it was supposed to happen. I always thought I’d meet my end in a head-on collision with a massive chunk of farm machinery out in the middle of nowhere. So with a different perspective weighing heavy on my mind I came home and had to drink that awful pre-colonoscopy bowel prep. I spent the afternoon trying to wrap my brain around the probability that I had a terminal illness while periodically shitting my brains out. It was a long day.

The following morning when they wheeled me in to the procedure room there were Christmas carols playing on the radio. I generally forgo any sedation for the procedure. This always seems like a good idea till we get to the junction of the descending and transverse colon. I was gripping the side rails of the bed with what felt like enough air to re-float the Titanic being pumped into my bowels and two nurses in my face coaching “Breathe honey, breathe. That’s it. You can do it.” All to the joyful strains of “Deck the halls with boughs of holly, Fa la la la la, la la la la.” Before you read too much into my opinions this is what passes for a religious experience in my life. After the procedure the doctor gave my bowels a clean bill of health and said “See you in five years Mr. Spooner.” I remember walking home and for the first time in my life thinking wouldn’t it be something if I actually got to keep that appointment.

Given what I have shared thus far it might be hard to believe that I am a very private person. Rae once told company that she didn’t salt the food because I had high blood pressure. I asked her to please never say that again. I had significant reservations about opening up to the public about my diagnosis, but ALS isn’t exactly something you can hide. In July I had a Bar Mitzvah. Initially it was planned as a small family affair. But we don’t have a small family. We stopped counting at 250 guests. As a tutor I had prepared many students for this day but found it very challenging for myself. It was difficult for me to separate the meaning of the service from the reason I was actually having the service. My family all participated and stood by me at one point or another. There was a point where I had difficulty maintaining my composure and Rae immediately came up and stood by me. She held my arm and helped me go on. The service was an affirmation of the power of faith and family in facing adversity. Everyone, family and guests, were so grateful to have been part of the celebration. It is that communal sense of  “Tikkun Olam” (healing the world) that will sustain us.

The Universe is unfathomably vast and still expanding. Light travels at around 188,000 miles per second. The light we see from the stars in our sky began its journey towards Earth when the Roman Empire was at its apex. When we gaze at the night sky we are looking into history. The light we see from galaxies in the Hubble telescope was emitted around the time the Earth was being formed some 4.5 billion years ago. There are countless stars surrounded by countless planets. While we have no proof, and given the distances involved, doubtfully ever will, odds are that this is not the only planet that harbors life. On this planet alone there are close to 7,000,000,000 people. Maybe it’s the limitations of my human brain but I personally can not imagine that the entity responsible for all this is even aware of my existence (let alone has the time to have an opinion about the gender of the people who I may have slept with). That’s not to say we should not pay homage to the magnificence of it all in prayer, deed, meditation or song. I just don’t expect anything in return. To have lived is already enough.

May your God be with you.

Peace, love and midwives.

Ray

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.

Have had 24 hours to reflect on retirement. Over the years I have read many posts by nurses tending to the dying. The most common regret seems to be, at least by men, spending too much time at work. I regret nothing. It’s been an honor and privilege to be part of peoples lives over the years through such an intense time in their lives. And to share that with an amazing group of midwives, nurses, doctors, doulas and the countless support staff whose gift is to somehow make it all work without anyone noticing. It’s been real. I’m sure their are many more adventures and challenges that await us as we move forward. First up is this ride thingy. I don’t think any of us have the first clue what the hell we’re in for. If I am physically able I will complete it. Not because I want to but because I don’t know how not to. Once I set a goal I have no power over anything. My mind sweeps my body and those around me along with it. That’s why Rae is careful about what she chooses to do with me. She learnt long ago. But she has put her reservations aside to join me on this huge adventure. And I hope you will too.

Peace, love and midwives

Ray