My MS Story

I never could climb a rope in gym class. I tried, but to be honest, even though I was a bit of daredevil as kid, it was a bit scary. As a kid I was never naturally athletic but I loved sports and I never shied away from physical challenges. My mom taught me how to play tennis at a young age and while I wasn’t on my way to Wimbledon, I was coached by some prominent people and I had my own goals. I made my high school varsity team as a freshman; I racked up awards, played in a small tournament in Belgium, and received some college scholarship offers. I turned them all down though. At the time, I thought it was because I was burned out, but looking back, I think my body was trying to tell me something.

Midway through my undergraduate degree, I was diagnosed with Multiple Sclerosis (MS), but it wasn’t that simple. I went through about two years of doctors doubting someone so young could have MS. I heard all kinds of comments from specialists, one even implied I was mentally ill. They chose to doubt my symptoms. My legs were numb, I was experiencing bouts of pins and needle-like shocks, and had widespread pain. My vision was off, my brain was off, and nothing felt right. I was coaching tennis for a few years, but I eventually quit that job. Then I quit playing all together. I had chosen to walk away from most MS specialists and neurologists because of what I realize now, was undiagnosed medical PTSD. I didn’t trust any of them, so I managed my MS on my own with my primary care physician. I had accepted my diagnosis, but I didn’t have to accept anyone else’s input. Things were going okay, I didn’t need any help, I was fine, until I wasn’t.

I wasted most of my late twenties and early thirties. I went back to graduate school because I knew I couldn’t keep up my intended goal of working in politics. I couldn’t live on the road, I couldn’t keep those random hours. I had to give up my dream. I settled on Higher Education, and while I love what I do today, the rocky start of trying to get my foot in the door of a new field was taxing. So much so that I allowed myself to become stuck in a rut. Every day, I’d get up, turn the same “widgets” and function even though, deep down, I hated my life. I felt like I hadn’t lived up to my potential and I was slowly shutting down. I made poor choices. I pushed people away and I felt sorry for myself. I took jobs for no reason other than they provided insurance and I needed a non-discriminatory company plan because this was pre-Affordable Care Act (ACA). Without company insurance, I was either being denied insurance altogether due to a pre-existing condition, or I was offered a plan that paid for very little but still had sky-high premiums and deductibles. Doctors didn’t want to help me but they were willing to brand me, so that I had no recourse for insurance. It was a vicious cycle. One I had to break.

I’m not sure what it was, but one day, in my mid-thirties, I woke up and a switch flipped. I found a gym, started a functional fitness program, and picked up other fitness-related hobbies like rucking (walking with a weighted backpack). Most recently, after 30 years, I got back on a bike again and while it can be a challenge at times, it’s one I enjoy. Granted, life is not without pitfalls. At 43, I still have MS. I still have symptoms, setbacks, flares, and relapses. Plus, my spine is in rough shape from over 23 years of adapting my movement patterns but I broke the cycle. I’m doing things I used to do as a kid, except I’m not the same person I was all those years ago in grade school. No, this time, I don’t take things for granted. This time I focus more on what I can do versus what I can’t. This time I recognize that every experience matters. This time, I can finally climb that gym rope. If I didn’t have MS, I would have assumed that ship had sailed. If I didn’t have MS, I never would have circled back to that challenge. And for that, I’m thankful.