Living with MS: One Year Later
Taken on S Grand in St. Louis, this eerie, cloudy morning light is like that of dreams
Last year, I posted an essay in which I announced that I was diagnosed with multiple sclerosis. It feels like fifty years ago. I said that I would concentrate on those aspects of my new reality that I can control, make more music, raise money for MS and to take things as they come. I've done all of that. It wasn't an easy year, but it's getting easier now and I feel more like myself again.
I am in good health and staying busy. It was a year of appointments, but my doctor says things will slow down. I developed a neurological symptom called the MS "hug", which feels like someone is squeezing you from the middle like an uncouth, hairy-knuckled brute squeezes a communal tube of toothpaste in a boarding house bathroom. But it's all jive; my nervous system is sending erroneous messages. It is manageable. I also had to undergo substantial dental surgery before I could begin my treatment for MS, which was a drag. Picture a forlorn Stan Laurel with a bandana wrapped around his head with the knot on top and you'll understand, but I recovered and got the treatment I needed.
Laurel and Hardy wrestle with the former’s dental dilemma.
While I was recovering from the dental surgery, I started to put playlists together of some of my favorite jazz. Under the moniker of the fictitious DJ 501(k) with an absurd name, I held a series of "Spin/Raiser" events events for the National MS Society beginning in August at the Gelateria, an Italian coffee and gelato place in St. Louis beginning in August. I bought a small but powerful mobile PA that I could fit in the back of a ride share and asked Andy the owner if he'd let me come in and play music on the spacious patio and put the QR code at each table that would allow people to donate directly to the organization. Since then, I've raised $1265 by sharing music, eating pizza and enjoying fresh gelato. Earlier in the year, I raised $536, so that brings the total to $1801. I plan to do more of this in 2025, adding more venues and raising more money for an organization that is very helpful to me.
A typical DJ 501(k) Spin/Raiser night at the Gelateria in St. Louis
I have received the first two full doses of the immunosuppressant treatment for MS. I had read that after the treatments began infections were more likely, chiefly respiratory, and that I may be more susceptible to some forms of cancer. I didn't get flu or RSV or cancer, but I did manage to get a dose of Covid, something I had managed to avoid entirely since the pandemic began. It led to some vivid dreams, but more about that in a bit.
The infusion process takes six hours. I was led to my own little curtained area where I was asked routine questions, ported for an IV, hooked up for vital signs, given acetaminophen and an antihistamine and told to wait about twenty minutes while the medicine was decanted. The first time I was given a steroid to lessen a possible bad reaction, which there was, but not to the drug, but to the steroid. Steroids are very effective personality enhancers for me, making me too wonderful for others to bear, so the next time around I opted out. Then they hooked me up to the IV machine that beeps a lot. Every thirty minutes, an alarm would sound and a nurse would reset the machine and let the infusion continue. So, for several hours, I sit, read, eat cookies and drink coffee. It's really not so bad.
After a while on the first infusion, I got up to go to the bathroom, tagging along this wretched beeping thing on wheels full of b-cell-depleting juice pumping into my body. This was not good timing. I managed to get into the bathroom and no sooner did I sit down when the alarm on my IV goes off. It was really loud and reverberative in there, so now everyone at the infusion center knows somebody's in here having some kind of toilet-related crisis. So I'm shooshing it and waving my hands around like it's going to do any good. Will they think I'm having a spell in here? Will they chop through the door to make sure I was all right and find me sitting there exasperated on the toilet next to this noisy machine? I aborted my mission and got up and got out of there, walking down the line of curtained cubicles and beeping my ass off like a delivery truck backing through the corridor. If it were a dream, Dr. Freud would sign me up for sessions four days a week. But this is my real life, or at least I think it is.
I have an alternate reality in my dream world with different versions of houses and apartments I used to live in with hidden walls that reveal sealed off rooms that were time capsules of early 20th century life. Once I found a secret room filled with about twenty old upright pianos covered in thick layers of dust. There was an enormous winding staircase that had been concealed. The apartments I revisit in my dreams have much more dwelling space than I could ever afford in real life. Maybe those hidden rooms I dream about are stores of untapped potential or secrets about myself not yet revealed.
I have a dream version of St. Louis, too. I get off at Metrolink stops I've never seen before but are still familiar. When I walk down the streets, I seem to know where I'm going and buildings are eerily like the real thing but different. Both worlds share people and landmarks, however remixed they are in my head. Stores and cafes I know are in different sections of town and have entirely new decor, but in my head, I just go with it. Dreams rely on suspension of disbelief, just as literature, drama and film do.
Covid upped the intensity and vividness of my dreams quite a bit. I slept a lot. spending the miserable week in an intermundane haze, toggling between waking reality and the dream state. When I opened my eyes, it took me a few seconds to determine which world I was in. I did some work while I was ill and found myself having to pause to figure out which world I was experiencing in the moment. I had an increasing fluidity between conscious and unconscious states. It was nice to exist for a few seconds, uncommitted, unclassified and unbound to time and terrain, ambivalent about whether either reality was the "right" one. This I recognized as detachment, and it is a sweet nectar indeed.
So what will I do in 2025? Chop wood and carry water. Lather, rinse, repeat. Make music, share music, raise money and get on with the business of getting on. My understanding of the neurological me continues to evolve. I'm at risk of infection so I mask up on planes, public transit and in private cars and crowded spaces which I generally try to avoid. I ask the people in my life to avoid me when they or someone close to them is ill. Other than that, I drudge and toil in obscurity along with most of the rest of the world, some of whom have it easier than I do and some of whom have it much, much harder. I try to remember this.