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