How it started

… and what it all means

Sometime in 2011 I decided to improve my health, so I started running. I noticed that I wasn’t doing it very smoothly. My feet sort of slapped the pavement. When I was lifting weights at the gym I noticed that my left arm, my weak one, had passed up my right. I went to the gym for a while, but I didn’t seem to be increasing weight at all. I swam laps in the pool but my kick was off. My feet kept running into each other. I wasn’t getting my hands to cup right either. My fingers on the right hand especially tended to flutter through the water. I was getting passed up by old ladies on kick boards.

In early 2012 I was at an annual homebrewers’ party at Yoyogi Park in Tokyo. After three or four small glasses of beer I started stumbling. At the end of the night I was pretty well liquored-up. I fell hard several times on my way home and twisted my right knee and ankle badly. This was confusing because I’ve never been one to fall down no matter how much I’ve had to drink, but especially after only a few. I limped for quite a while after that, and found that I could no longer run. I went to the clinic in the building where I worked and got an x-ray. The doctor told me that since I was over 40 these injuries would take a while to heal, so just bear with it for a while.

I stumbled against the doorjamb on my way out of the apartment one day and caught myself with the heel of my hand. It hurt pretty bad. When I looked at it it was weird. The doorjamb had put a crease in the muscle of my thumb that did not spring back.

In the mornings my legs started cramping, making it hard to get out of bed. I had also been having annoying twitches all over my body for quite a while. When I asked my friends if they had similar experiences they just laughed and said, welcome to your 40s. So I didn’t give it much thought.

After a few months I still couldn’t run, and when I walked it was more like a stomping Frankenstein kind of walk. At work I started having a lot of accidental mouse clicks and right clicks. However, I still didn’t see the issue with my hands as being related to the issue with my legs. I thought it was just a getting old thing.

In November 2012 my wife was in the maternity ward, and she suggested I go to the orthopedist a couple of doors down. I did, and after a cursory check she told me she couldn’t tell me what was going on, but she could refer me to somebody more specialized. In retrospect I should have been troubled by the look on her face, but at the time I did not notice it.

I went to the specialist, a neurologist at Toranomon Hospital. He did several tests over several visits. I was still blissfully ignorant of what might be going on. I actually researched my symptoms online and decided it was Guillain-Barré Syndrome. No problem, a week of blood treatment and it would clear itself up, the Internet told me. So it was no surprise when Dr. Uesaka recommended a five-day hospital stay with a five-hour infusion of immunoglobulin each day.

Two weeks after the conclusion of that therapy and my symptoms showed no change.

On March 13, 2013 Dr. Uesaka called me in to tell me that in his opinion I had  amyotrophic lateral sclerosis, or ALS, also called Lou Gehrig’s disease. I had seen this on the list during my research but had rejected it simply because, it couldn’t possibly be that. I was dumbfounded, and my wife started to cry.

Dr. Uesaka urged me to get a second opinion and recommended one of the leading researchers and diagnosticians in Japan. I went to him for more tests, and he ultimately concurred with the diagnosis. I was given a prognosis of 3 to 5 years.

I spent the next two weeks in a daze. I had read that after a diagnosis like this you shouldn’t go to work for about a week, but I did not heed this advice. I went to work as usual and did a pretty good job of acting normal. In reality I was completely detached. I felt like I was looking at everything from the end of a long tube, or from behind plexiglass. All the people looked like sock puppets going through the meaningless motions of their lives. Only I understood the reality of life and death, and I was totally alone.

During those two weeks I felt like my 20 years of Buddhist training and practice had been a waste; I had not learned anything. I was just as attached to my life and fearful of losing it as I had been when I started out. The thought of not reaching my goals, of having to be in a wheelchair and then incapacitated on machines, of missing out on growing old with my wife, whom I love deeply and whom I had struggled so long to meet; and worst of all by far the thought of missing out on my daughter growing up, and how she would be marred by my absence, all of these things devastated me. I felt completely unprepared.

But after two weeks I snapped out of it, I got my head around it, and accepted my new reality. I began to joke that I had gone through all five stages of grief in two weeks thanks to Buddhism. Of course, having a very cute five-month-old baby girl at home helped a lot too.

My wife and I had been toying with the idea of moving back to the states in 2014, and my diagnosis cemented it. We went to Alaska at first, staying with my parents for eight months. However, doors did not open for us there, and in spring 2015 we moved down to Portland Oregon, where we currently reside. There is a lot of support for us here, and we are quite happy.

I had been contemplating what to leave behind (besides everything). I decided to write memoirs, but I did not want to write a typical autobiographical narrative like, “I was born here, then we moved there, when I was nine this happened… Etc.” some of what I wanted to write was like that, but I had other ideas that didn’t really fit that format. Some stuff was humorous, some was more like science fiction, some stuff was just me ruminating. The blog format seems to suit this, and the tags for each post will serve as chapter titles in the book.

I wrote the posts entitled, The Five Most Awesome Things about Getting Diagnosed with ALS following my two-week post-diagnosis zombie period. I intended to submit it to the humor site, but never got around to doing it. (The pictures in those posts are placeholders, as you might imagine.)

The style is not my usual writing style, but the conclusions I reach show you where my head was at and how I had come to accept my situation. I had let go of regrets about the past and anxiety about the future. Most of my issues were suddenly resolved, in that they were no longer relevant. I had come to realize the meaning of life, which is simply that you are alive.

I also had an epiphany regarding God and the afterlife. I realized with great clarity that they are fantasies. You have just one life and it is extremely fragile and precious. You need to care for it and not waste it.

There’s a lot I want to say to you and not much time to say it. A freak of nature has taken away my ability to type, so I am dictating this. The same freak of nature is taking away my ability to speak, so before very long I won’t be able to even do that. I will post as much as I can in the time that I have. I always have to say one more thing before I go.