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.