“I have been diagnosed with multiple sclerosis.“
Willmore Park, St. Louis, MO
When I had my first MRI last summer, they asked me what kind of music I wanted to hear. I foolishly said "jazz" and got forty five minutes of smooth jazz. It was like being on hold with your insurance company or sharing a hot tub with Kenny G. For my second MRI at another hospital in October, the technician asked me what I wanted to hear and, having learned my lesson, I said, "classical". "Which artist?" asked the technician. That surprised me. "Beethoven." You can't lose with him.
So I was in the MRI machine, listening to the buzzing and clicking noises and hearing them as a musical composition rather than just a series of noises, something I do sometimes in noisy environments. Then the clicking and buzzing would stop and I could hear Beethoven very faintly in my headphones. Then would come another wave of electronic noises, the next movement of the Concerto for Magnetic Resonance Imager, followed by a few seconds of Beethoven again, and always a different tune.
It was basically Beethoven's greatest hits: "Für Elise" and "Ode to Joy", one of the piano sonatas, (I forget which one), but when I heard the funeral march from the second movement of the third symphony, I started laughing, That's usually played at state funerals and not what you want to hear when you're stuck in that long, noisy tube in the hospital with God knows what's wrong with you. For about sixty seconds it sounded like Leonid Brezhnev's memorial service in there. And then the buzzing and clicking resumed. For a few moments I felt like I was going to be all right, but I still had to keep still and stop laughing...
One Saturday morning in April, 2002 I woke up to find that the vision in my right eye was dark and blurry. It got worse as the morning went on and my vision grew darker and fuzzier. By the time I got to the ophthalmologist's office for an emergency appointment, I was completely blind in my right eye.
The doctor told me that it could be the onset of multiple sclerosis. He said I had a 75% chance of getting my vision back naturally. He also told me that steroids could be used to help restore the vision I had lost but he didn't recommend it. My vision returned to an extent; there's a blurry hole in the center of my vision in that eye with only sketchy peripheral vision. I was told to watch for neurological symptoms for the next several years. So I watched out for declining motor skills, nerve pain, or mobility problems.
Losing most of my vision in one eye was tough to take because I've had achromatopsia, a rare visual impairment, since birth and I relied heavily on the partial vision I had. It felt as though I had won the lottery twice. But the years went by and the neurons in my brain compensated for the vision loss and I was able to get around much as I had before, albeit with a large blind spot to my right. Gradually, the reality of having MS seemed more and more remote as no other observable symptoms developed.
No other neurological symptoms presented up until 2023, when an MRI I had while I was hospitalized revealed brain lesions. A spinal MRI a few months later reveled lesions on my spinal cord as well. Just after Thanksgiving, a spinal tap confirmed it; I have been diagnosed with multiple sclerosis.
My immune system is attacking healthy cells in the lining of my brain and spinal cord, waging an ill-advised war on my own body, and it had been going on for a couple of decades. It's unsettling knowing that there's a destructive process going on within you as you roll over in bed, open the refrigerator or put on your socks. This experience has renewed my gratitude for the fact that biological and neural processes work in the body without my consciousness of them (until something goes wrong, of course).
The good news is that I've been mostly symptom-free for twenty one years apart from the diminished eyesight. I'd like to keep it that way. I have one functional eye left and my motor skills are still undiminished. The treatments available today are far superior to what was available twenty one years ago and will likely protect me from damage caused by further outbreaks, but they come with a risk of increased vulnerability to infection so I'll have to be careful. I'm going with science as the first line of defense.
I've decided to go public with my diagnosis because I'd rather be honest and open than stoic and secretive. I used the term "stoic" in the common sense of being seen as long-suffering, bleak, and emotionally repressed. As for actual Stoicism, I'm drawn to Epictetus' principle that emphasizes the distinction between the things we can and cannot control and to try to focus our attention and energies on the former rather than rage and lament about the latter. Experience teaches me that understanding that difference is essential to good mental health. It is, in fact, how I keep from going nuts in times of crisis and struggle. To me, it's the most sensible approach to coping with stress I've come across.
I can't control the genetic or environmental factors that caused my various disorders, but I can take care of my mental and physical health and choose treatment options that work for me. I can eat a good diet. I can exercise more. I can protect myself from infection. I can make it work. I can create more music and embrace challenging new projects. I can raise money. I can do what I can and not agonize about everything else. Absolute free will is highly doubtful, but we do have a certain amount of autonomy despite the limitations of our heredity and environment. That "zone" is the realm where you can affect change for yourself and others.
All of this sounds great, but accepting a new reality is a process. I am still learning. I am not a fountain of wisdom and good judgement all the time. I feel conflicting emotions about the road ahead every day. I worry. The new reality is stressful on both my partner and I. It means some changes have to happen. But I'm very aware that there are untold millions of people in the world with far heavier burdens than mine. My road hasn't been easy, but I have a home and workspace and access to health care. Many in my own community don't have those things. I'm fortunate and I know it. By being open about having MS perhaps my words might speak to others who are battling the disease, and to those who might consider supporting MS organizations.
After a year of illness and new challenges, I have more perspective on my life and a better understanding of myself than I've ever had. My knowledge and understanding of the biochemical/neural "me" has been recalibrated and I have to adapt to developing realities. Things still need to be done, and I will keep producing and releasing albums until I drop dead, whenever that might be. I want to grow to be an old bastard and leave a few albums behind when I'm gone. What else can I do? Nada, nada, nada, not a damn thing!