Once you get diagnosed with Multiple Sclerosis you become part of one big (mostly) supportive group of fellow broken people. I liken it to being a Bruce Springsteen fan. We’re a family. Go to a show just once and you’re in. Once complete strangers, now sharing stories – bonded by fanaticism.
“Remember that concert back in 1996? Were you at Invesco field 2004?”
Springsteen Fans, Deadheads, Parrotheads, weirdos who don’t bathe and follow The Dave Matthews Band…
…people with Multiple Sclerosis.
The obvious difference being that we don’t CHOOSE to have MS.
Apparently, I had such a fun time with the disease the first time around that I was diagnosed with it TWICE.
Let me explain…
The summer of 2011 was not a particularly good time for me. I was walking through life in one continuous panic attack. Random body parts were going numb. I could barely make it through a shift without wanting to crawl behind the junk food aisle and sleep for days. I was 33 and, other than visiting the occasional dying relative, I had never been in the hospital. But, it reached a point where I found myself on the wrong side of reality so my girlfriend drove me to the ER. I was bad enough that I was awarded an overnight stay. (I ended up sharing a room with a dude who died that night, but that’s another story.) The doctor, who looked like Henry Winkler circa Waterboy told me that he ‘thought it was all in my head, but he’d order an MRI just in case.’
Let’s stop for a teachable moment, here. In a very tiny nutshell Multiple Sclerosis is when your own immune system attacks your Central Nervous System. This causes lesions that, depending on where they are located, can do all sorts of fun stuff to your body. At this time, there is no cure. All we can do is treat it and hope to slow the progression. It’s very scary, to put it lightly. However, I’m hoping that all those years I shaved off my life by smoking, drinking, and ingesting things that I probably shouldn’t have will take me first.
Back when I was diagnosed the first time – you had to meet 3 criteria to be officially diagnosed: 1. You needed to have lesions on your brain and spinal cord – check! 2. You need to have specific protein markers in your spinal fluid – check! 3. You needed to have had a major ‘incident’ such as losing the function of half of your body or going blind in one eye – that was a no for me. Ironically, the Neurologist who (mis)diagnosed me with MS was probably the best neuro I’ve had in all of this. He didn’t want to wait around for a ‘major incident’ to start treatment.
Back then you were given three options for treatment (all injections) and you had to pick one based on how big your fear of needles was. Given that I grew up with a diabetic mother who took numerous shots a day AND I was a huge Quentin Tarantino fan – I chose Copaxone (a daily shot) which only stung a bit unless you hit a vein. THEN you would end up in the fetal position cursing the day you first heard Paradise by the Dashboard Lights.
One day I was leaving one of many doctor’s offices when I saw a simple note for an MS support group on the checkout desk. I called the number when I got home. The person (who we’ll call Amy) that called back seemed surprised that somebody had actually called the number. Soon, I was part of a small group – literally, like three people in the beginning. Some of them I already knew but I had no clue that they had MS. These everyday heroes (sounds like something cheesy you’d see on the local news) were stronger than I’ll ever be. We shared struggles, made a small (now obsolete) Facebook group, and held regular meetings at the hospital. We even revived the long forgotten MS WALK for the National MS Society – t-shirts and everything. I’ll talk about the politics of fundraising in another post.
MS defined me. I was The MS Guy. I wore orange boxers. For five years I took my shots every single day. I saw a revolving door of less-than-memorable neurologists. I rode the waves of ongoing symptoms.
Then I was told I didn’t have MS.
2016. I was doing, dare I say, decent. Apparently, my Copaxone was working good, TOO good.
A lack of local neurologists sent me traveling to the nearest major city almost two hours away to see a doc that was supposedly well-versed in Multiple Sclerosis. You never do forget where you were the moment a miracle went down. Lazarus raised from the dead. Abraham given a boost of supernatural Viagra. Undeserving me cured of a chronic illness. Doc went through my MRI images, pointing out each lesion, and telling me that each one could be a migraine, a bump to head etc… I was so elated that I didn’t ask about the protein markers in my spinal fluid. I didn’t know MS could be in remission for years – YEARS.
I stopped my Copaxone injections.
I was cured.
2023. Once again, my life was shit. A couple of trips to the behavioral unit of the local hospital. I was put on a whole new slew of meds. I endured ten rounds of ECT treatments. My brain and body had been put through the ringer. Every single one of my new symptoms – cog fog, dizziness, numbness, pain, fatigue, feeling like I was possessed by the tortured souls of a thousand scorned soccer moms – these could all be attributed to any one of the meds or treatments I had undergone.
Yet, something didn’t feel quite right.
Nobody was listening.
Had my heart checked – good.
Discussed my problems with my psychiatrist – acceptable.
Just one last thing to check.
My brain.
Another round of MRIs and I’m on the phone with my neurologist’s assistant. It’s my lunch break. I’m trying to eat my Cowboy Panini. She’s giving the news to me like I’ve got six months to live. It’s probably the most emotion I’ve ever heard from a medical professional.
“We’re thinking it’s Multiple Sclerosis. I’m so sorry.”
All I could do was laugh.
You go through all those cliche emotions when you’re given such a diagnosis. Oddly enough, I didn’t spend that much time in anger. Sure, I could’ve been mad at the doctor who told me I didn’t have MS seven years earlier. People told me I should have sued him. I could’ve been upset that I had lost seven vital years of treatment. But what good would it have done me? The relationship between stress and MS flare-ups is a proven turd sandwich rolling downhill. They feed off each other. This past year has been a wildfire of stress and grief. The last thing I need to do is pile on even more stress than is necessary.
There are like a bazillion treatment options compared to when I was diagnosed the FIRST time. My neuro put me on Avonex and so far so good. It’s a weekly shot that makes me feel like death for 48 hours. A bunch of new celebrities have joined our team: Christina Applegate, Selma Blair, Jack Osbourne…
I’ve lost touch with most of my original MS Support Group buddies. We’ll occasionally pop up on each other’s Facebook feed. This time the ‘party’ is over. It’s no longer fun. No more MS walks. Just me left to hang out with my unwanted companion near the end. It feels different. Muted. Maybe it’s because I’ve got so much other hell going on in my life that it’s taken a back seat.
Shit, that came out a LOT darker than I meant it to. I try to distract myself from the horror film that is my brain and body conspiring to kill me. And yes, I’ve been listening to Springsteen while I write this story.
If you’re fighting a similar fight- put on your damn crown! You deserve it!
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