My MS Story
Last updated: August 2021
Everyone has a story and a good writer can make anyone's story interesting. I'm not overly confident about many things in life; there's not much I do better than anyone else (particularly at this juncture in my life), but I know I can write. I know I can tell a good story, especially a true one; especially my own.
More than MS
This November, I'll have kept this running blog for two years and while I've made mention of having Multiple Sclerosis (MS) in other posts; I've never told the entire story. Not to mention, I had no intention of making MS the forefront of this blog or even the first thing I blogged about. I want people to know there's more to me and no one -- not even me -- wants to hear about MS all the time. I am under no delusion that anyone around me wants to learn about MS or cares beyond perfunctory "Are you okay?" questions. I know I make a lot of people uncomfortable or, at the least, they want to accept me in small doses or at their convenience. I know I get left out of things, passed over for invites and I've lost friends, as well as significant others, over MS. I can read people well. That part of me was never affected and, probably, stronger than most. I know all of this and yet I am aware that I have my "people." I know that among the massive list of casual acquaintances; I’ve been able to carve out a small, dedicated and loyal group. They don't make excuses for me and I don't have to make excuses for them. They are genuine. I feel that.
Little clues into how it started
All that said, if you're still reading, I'm sure you'd like me to start from the beginning and I'll oblige. My story is, fairly, typical of the average MSer in that I let small things go unnoticed until they were staring me in the face. I was a childhood tennis player and a decent high school player who turned down the opportunity to play in college to focus on academics. In retrospect, this was a smart decision because by the time I was a sophomore in college, I would have, more than likely, lost any scholarships I had over the inability to play (or play at an expected caliber). Also, in retrospect, I now look back to little things I did on the court, like incessantly spinning my racquet in my hand in between points and realize that wasn't just a quirk. All tennis players do it and yet I now know it was me recirculating the feeling back into my fingers and hands. It was me attempting to work around the earliest of MS symptoms the same way I'd keep half my hand hanging off the racquet on groundstrokes: because I was, unknowingly, making modifications for myself.
I knew something was wrong
By the time I started my undergrad, I knew there was something wrong. I had intermittent stabbing nerve pain, random muscle spasms and my legs would give out or go numb. Then there was the time I left my house to run an errand and, as I was driving down the road, I suddenly had no idea what I was doing, where I was going or why I even left the house in the first place. All of those things led me to a neurologist who, after being poked, prodded and put through every medical test in the book, finally, saw lesion evidence on an MRI scan of my brain and that sealed the deal. There was one problem, though: I was still on my parents' insurance and, in the early 2000s, there was no ACA out there that would protect me from pre-existing condition discrimination. So, the neurologist did something extraordinary: he prescribed me MS medication, recommended things like physical therapy and tried to get me referred to some MS specialists. Then he wrote up all of my medical paperwork as "suspect," in order to fool the insurance company, and while I was appreciative of his efforts, those efforts backfired, in a sense.
Getting the run around from insurance
The specialists relied only on his "suspect" notes, rather than my MRI, symptoms or other test results, and did not feel the need to even have a phone conversation with him for an explanation. One specialist even said, "I don't think you have MS, I only treat people with MS, but I'll keep seeing you." I wasn't interested, but I was getting worse. My original neurologist was frustrated as each administered test had enough to, as he said, "put all the pieces together." He knew, however, that his established notes meant to keep me safe from the insurance industry were putting me at a deep disadvantage, so he kept seeing me until he retired and my primary care physician willingly took over prescribing me the MS drugs. That all worked well until medicine started to get centralized and bureaucracy started asking for every last thing to be coded for nothing other than money and profit, in my opinion. At that point, my primary care physician had to code me as having MS (in order to keep prescribing the drugs) and thus began a long journey of me either being charged huge premiums with even larger deductibles or getting denied coverage, altogether, by every insurance company out there. I hit rock bottom around this time. I was done with doctors, even more done with the insurance industry and I was done with myself, as well.
Afraid of being alone
I had some peaks in my mid-20s, like working on political campaigns and coaching high school girls' tennis, but my career had a lot of lows. I gave up on jobs that would have taken me out-of-state because I was afraid of being alone. Yes, the typical only child was, all of a sudden, afraid of being by herself. Perhaps, though, deep down I knew I was heading into a deep abyss that I wouldn't be able to climb out of on my own. I was, also, terribly afraid I'd have some sort of MS attack and there would be no one to help or call. At any rate, I gave up on a career in politics and I went back to school for a graduate degree in Education. So, in my 30s I embarked on a new career path, but there was just one problem: there were no jobs, and the jobs I was up for, were going to other people. I managed, though, with long-term sub assignments and other odd jobs and while I'm overly grateful for some of the people I met during this time, I was, mentally, checked out.
I was mentally and physically checked out
Needless to say, when I mentally checked out, I physically checked out as well. I stopped caring if my friends called me, I stopped going out, I ate whatever I wanted and the only exercise I got was going to the fridge. I couldn't exercise, I resigned. I had MS, I was lucky to have a job and that was taxing enough. Now, let me just sit on the couch, do nothing, sleep away whole days and assume this will all work itself out. I knew it wouldn't, but, frankly, I didn't care that my cholesterol was over 300, I was pre-diabetic, weighed about 200 pounds (of sheer fat on a 5'4" frame) and I got winded climbing about five steps. This went on until about the age of 35. That was the year I finally saw myself. Well, I finally saw a picture of myself that made me ask, "Who the hell is that person?" That's, also, the year I decided to do an MS Walk and raise money for the MS Society. That's also the year I decided to start an exercise program.
I turned to research and the gym to find myself
I started exercising at the university gym where I was working, but I soon realized that no amount of treadmill and free weights was going to help. Plus, my schedule was terrible. I was working two jobs while attempting to make ends meet and I was not in the right headspace to put any sort of fitness first. Simply put, I was phoning it in and no one was answering, so I did something I should have done years ago: research. After several months of reading articles online, talking to other people with MS on message boards and consulting with some active non-MS friends on social media, I quit my second job and joined a CrossFit gym. Yes, you read that right. I gave up extra income while costing myself a monthly membership fee AND I didn't just join any type of gym, I started at, what the average person would consider the top. Needless to say, after a weekend of On-Ramp I could barely walk for about two weeks, but I knew that was common for an out of shape person without MS. So, I went back for more or as much as my body would allow.
Modifications make it easier
Before I go any further, though, let me be straight up honest and tell you, that even seven years later, I'm not good at CrossFit. As I often tell coaches, I wasn't that coordinated before my MS diagnosis, so I'm not working with a lot. There are some things I can do, there are some things I can't and the rest needs to be modified. That's the part I can't stress enough to people, though: everything can be scaled and in many ways my CrossFit workouts are easier than most sports. Case in point, I can't modify a tennis match. I can opt to hit with a pro for a lesson or hit with a ball machine at my own pace, but I can't walk into a tennis match and say, "Hey, let's limit the amount of points, groundstrokes, games or sets we play, okay?" Sure, you can play a match as No-Ad or just a few games, but if you wanted to play in a league -- if you wanted to get the full benefit -- you can't scale things outright. I can do that with CrossFit, though. That said, it's always an adventure and the coaching matters. I've had coaches that, completely, ignored me, others that watch me like a hawk and yet others that are smart enough to judge me on a day-to-day basis. Yes, I was able to do such-and-such workout last week or yes, I was able to PR a lift, but that was last week and this is the present, so starting every day fresh is essential. That said, I'm not afraid to be challenged. In fact, I'd much prefer to be yelled at just like everyone else in the gym. I've had hardcore coaches in my tennis career, believe it or not, and my own mother was no slouch at feedback, either. I'm not going to cry if I get called out and you're not going to look like an asshole for doing it, either. Understand: It's okay to call out the person with MS. We, sometimes, get lazy, just like everyone else. Bottom line, I can't speak for everyone with MS, but, for most of us, we know our limits on any given day. We'll bench ourselves when we deem appropriate. We may be stubborn, but we're not stupid. While I can count on one hand how many times I've done it, I've stopped myself in the middle of workouts. I'm, also, accustom to on-the-spot scaling. I won't quit, but I may shed some weight halfway through or start modifying reps. Bottom line, I'll do something. I'm there to work. As I used to say when I played tennis, "I'm not just here to wear the outfit."
The glimmer of hope
There are more and more people with MS in CrossFit gyms these days and a lot of MS organizations are catching up to the notion that exercise is paramount to slowing disease progression, eschewing DMTs and getting off all medications. The latter being something I am, currently, working on, because as I type this, I'm on day fifteen of zero MS medications. No Gabapentin, no Tizanidine, no Tramadol; nothing. How long will this last? I'm not sure, but even if I have to relent and take one of them, I know it won't be on a daily basis because it was never on a daily basis; even when I was at my lowest. Yes, mentally, even when I thought I had given up on myself, I still wasn't, routinely, taking medication or overdosing. Perhaps that was the glimmer of hope. Perhaps that's why I am in a good place, now. All that said, I'm not here to criticize anyone else with MS for their personal care routine. I won't go on any tirades about taking or not taking medications or the pros and cons of DMT infusions or injections because everyone is different and I'm not a medical professional. What I will say, though, is you have to get up and leave all the excuses on the couch. I don't care if all you can do is walk to your mailbox or shop for your own groceries; do something, if not for your own physical health for your mental health because excuses will paralyze you, eventually.
MS will change your life
I'm going to close with a few final thoughts. The first is it's essential to realize that MS will change your life or has changed your life. I know it's changed mine and while I can sit here and be overly positive about all the things I've learned and all the challenges I've faced -- or even how happy I am right now -- I know MS altered my, general, life course. Without MS, I might have more friends. Without MS, I might be married. Without MS, I might have children. Without MS, my life might align with the stereotypical All-American white picket fence existence. I know MS has taken some things away from me and I have to be realistic. Don't get me wrong, many people with MS still have the things I mentioned above, but for me, personally, I know MS factored into a lot of life decisions and relationships. I, also, know I have to let those things go in order to move forward. Not to mention, some people aren't meant to be in our lives, so if my MS managed to rid negativity sooner rather than later, I consider that a benefit. I’ve, also, prided myself in being as unique as possible, so my non-stereotypical life suits me well.
The second, and last thought, I want to leave you all with is this: representation matters. We've heard that a lot over the last year when it comes to things like gender and race, but it's just as prevalent with MS or any other differing ability. I didn't get it until a few days ago when I was watching the Neuromuscular Men's competition of the CrossFit Games online. Specifically, I was watching Brett Horchar go from jump rope on turf (not sure who thought that was a good idea, but I digress) back to ski erg. He dropped his rope, turned and started back to the ski erg ever so slightly tipping to one side of his body. He wasn't limping, in fact, I doubt most people noticed it, but I did, because I've been there. I felt that slightly off gait. For the first time I saw a piece of myself in someone else. I'm 41 years old, I've had MS for over twenty years and I've been doing CrossFit for about seven and yet that few seconds hit me hard. For a few seconds it was as if I'd left my own body and could see myself from the outside. I've never experienced that. It meant something. Not to mention, Brett owned that competition. I only wish I could have watched someone do that twenty years ago. Representation matters. Representation creates starting points. Representation makes us all better.
Life can be hard especially with MS
"You can do hard things," is something that is overused, in general, especially for someone with MS. The fact of the matter is, our whole existence is hard. It's hard to get enough sleep, it's hard to sit in a chair for eight hours at work, and sometimes, it's even hard to think. It's hard to to do physical things, but the hardest part is keeping a positive attitude. It's hard to look around and realize you're the slowest one, there are some things you'll never be able to do and yet other things that will only allow for a plateau. It's even harder to know what the future will bring or to keep yourself from going down a rabbit hole of "what ifs" you shouldn't even explore. Perhaps that's why I don't keep a regular neurologist anymore. I don't want to know or, more accurately, I don't want to assume where my life is going.
Rolling the dice
A few years ago, I was sitting at my desk and I felt extremely lightheaded. I started experiencing these odd tingling sensations in my head and, frankly, it scared the crap out of me, so I went to the first available doctor I could find, who referred me to a neurologist. That neurologist did a new MRI -- the first one I'd had in over twenty years -- and while he didn't find any new, notable lesions on my brain, he noted the top of my spinal column was full of arthritis and there's a chance the rest of my spine was even worse (and might show MS lesions). I had the option of going further with more testing, of course, but I declined. After everything I've been through, in the irony of ironies, I now have insanely good health insurance to go along with a good paying job. I can afford any test or treatment in the book, but I'm no longer interested. I don't care what my spine looks like on a medical chart. There is nothing that can be gained by knowing anything has progressed or -- even worse -- might progress. There are a multitude of actions I can take, but it can't be fixed. Think I'm crazy? Read that prior line, again: it can't be fixed. I can undergo experimental surgeries, take part in numerous medical trials or start several different DMTs, but at the end of the day I'll still have MS. So, I'll just roll the dice as far as I'm concerned. Eventually, the wheels might fall off, but if they do, at least, I'll have no regrets. At least it will have been one hell of a ride. At least I'll have written my own story, and, if I'm lucky, it will be a damn good one.
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