YOU CAN ONLY GET SCLEROSIS ONCE! DICE SAID SO!
Last month marked the four year anniversary of me being diagnosed with multiple sclerosis. At first, I only shared the diagnosis with my family and those close to me. It wasn’t because I was ashamed or anything. It was more due to the fact I really didn’t know how-the-fuck to explain the ways this disease might encumber my life. Upon returning from the neurologist that Friday, I did some internet research trying to piece together a layman's description of MS and it just led me down a rabbit hole testifying to the dicey ways of the sickness. Sadly, my research did not yield an explanation. Rather, it just made me more confused. Some people seemed to live normal lives uninterrupted by relapses or symptoms while others had a swift progression into being bedridden and heavily dependent on others. As I went deeper and deeper, the uncertainty of this incurable ailment a doctor informed me I had just a few hours ago became apparent. At some point, I just gave up and cried. The only bit of advice that seemed to be universally championed by both sufferers and doctors alike was: ELIMINATE STRESS.
At the same time, I was finishing up my third book, Straight Edge: A Clear-Headed Hardcore Punk History, which was rapidly becoming more of a headache than I envisioned it to be. The publisher wanted to graph on a few more chapters which meant interviewing more people and attempting to assemble the chapters as quickly as possible to have it out on time. Meanwhile, interviewees were asking to see transcripts of their interviews. Some were even asking to edit their own interviews. All of this was going on in between steroid drips to regain strength on the left side of my body. After completing the chapters and looking for the project just to be over, I gave the green light to the design, and off it went to press.
A few months prior to the book being released in the fall of 2017, I was at work when a fog of fatigue surrounded me. My entire left side felt like it was asleep. I left and called my neurologist seeing if I could come in. While making a half-assed attempt to catch the train, I fell out of nowhere; as if someone pushed me from behind (I checked, no one did) Upon the train, I got a call from someone featured in the book. Not in the mood to talk, I ignored the call. When they called back immediately, I picked up figuring it must be important. What followed was a forty-five-minute beratement over a quote in the book delivered by them that they felt was false. As I sat there with these static shocks going down my left side, they went on and on asking to hear the interview immediately and how they might seek legal action. The privilege in their voice was palpable.
It was then that I turned into Murtaugh, “I’m gettin’ too old for this shit”.
After the required promotion for the book and the calendar flipped to 2018, I took a step back from writing. Putting myself in the position again where someone I barely knew felt they had the right to call and yell at me did not seem like the sure cure to getting me less stressed out. People tried to show me a bright side. “You could stay in bed, write, and get paid! It’d be perfect for someone with MS!” What those people don’t know about is the brain fog which comes with MS that turns a blank laptop screen staring back at you into a mortal enemy. Idiots. And the whole ‘get paid’ part…Forget it!
As I crept back into writing and editing projects, I purposely stayed away from former connections that would cause my brain to fry; either by their stress-projection or just simply due to them being a phony piece of crap. The desire to continue to write and get paid while avoiding the cathedral of music journalism is rough. Substack subscribers are highly appreciated, but it’s not enough to keep the lights on. I’ve had a few book proposals floating around that have gained no traction. As my wife leaves to go to her job that actually keeps the lights on, I sit here shooting proposals and pitches into a void while wondering when I’ll learn my lesson and just give up. But where would that leave me? The physicality of my day job is draining and will catch up to me eventually. So, I will be some unemployable dude pushing 50 waiting for MS to mentally and physically deteriorate me? Is that the fate I gotta buck up and accept? Even four years later, I’m unsure. And that’s what constantly fucking haunts me. The fact I could wake up and have no control over my functions is real and has happened. I have plowed through it chiding myself for being a pussy. What are those days going to look like in a few years or even a few months? I honestly don’t know.
Listen, I’m more than aware there are enough people looking to gain your attention through their own self-thrown pity party and that has been a major factor in me not shoving the illness in anyone’s face. But as the weather gets colder and the joints get creakier and the static pulses shoot more often down my spine and legs, that feeling of helplessness sifts in little by little until I’m brimming with rage over having no one to understand what’s going on. I’m not saying you understand. But I guess it’s time to drop any pride I have and say having multiple sclerosis sucks. It’s unpredictable and makes you feel like a burden to those around you. It causes someone with an already short fuse (hullo!) to be even moodier and difficult to deal with. The guilt felt in laziness you can’t control is unbearable and I honestly wouldn’t wish on anyone. Not even Seth Simon or someone who feels a Jerky Boys CD being released in 2020 deserves a warning (and gets paid for writing it!)
Yeah, so I guess this newsletter had nothing to do with music. But maybe I can offer some YouTube links to cheer you up after that over-sharing piece of tripe.