My name is Jonathan, I’m 41, and was diagnosed with MS at the age of 25. My initial symptoms included imbalance/vertigo issues and visual problems from having optic neuritis in both eyes. Before MS I was adventurous and you could find me rock-climbing, backpacking, and hiking. That all changed the day of my first symptom…apparently the balance thing was kind of important for hiking and climbing. That was the day that everything changed for me and I thought my adventures were over. MS has a funny way of steering you in a different direction than what you had in mind.
Living with MS
After my diagnosis, like many, I had a hard time letting go of who I was and learning to live with a condition that doesn’t play by any rules. I stopped doing those activities that brought me such joy and that I used to identify who I was. After years of playing it “safe” I was inspired. I was inspired in such a way, that I re-evaluated who I was and what I thought defined me.
Exercise is something that has significantly helped me manage my MS. While there are the obvious physical benefits of exercise for your overall health, the benefits extend beyond that. The mental health benefits have helped me in managing depression, and especially my stress levels, allowing me to set goals and focus on something larger than my disease. Achieving these goals is driven by not only my own desire to succeed, but also providing inspiration and hope to others with MS that their diagnosis isn’t the end. In my case it was the beginning.
A new adventure
After 14 years of having MS, I had a realization that I the hiking, backpacking, and rock-climbing weren’t really me, what was me was the adventure that they all had in common. As a part of this realization, I decided I needed another big adventure. That adventure? Triathlon…after 14 years with MS, I took up triathlon…swim, bike, run. This level of exercise was something completely outside of what I had ever done in my life, swimming 5-6 miles a week, cycling 100, and running 20. This had an added benefit f getting plenty of time in the sun and I think we’re all aware of the association of MS and Vitamin D. Exercising this amount also changed how I ate an what I wanted to eat. Fueling for endurance sports is can be tricky, but it’s can be pretty simple…the less processed food that you put into your body, the better you feel, and I ate a lot!
Having never really been a swimmer, other than the occasional trip to a pool or beach growing up, this was a massive learning curve, but with my new perspective, it was also part of the adventure. I found a coach that got me from, my hardly capable, 25 yds across the pool, to 2 miles in the open ocean water within a year. Despite my limited time with triathlon, my adventures with swimming were really just beginning. What backpacking and rock-climbing had done for me so many years before, swimming was doing for me now. There’s a freedom in swimming, for me, that extends beyond just having fun in the water. I don’t notice my balance issues in the water like I do on land, yes walking through waves can be problematic, but once I’m out there floating, so much just melts away. I can exercise to my hearts desire without contending with any heat related issues that so many of us MS patients face.
"The chaos in the waves seems so familiar to me"
Not only did I learn to swim in normal conditions, but part of my swim training addressed swimming in adverse conditions…with adverse being 8-foot ocean swells. Being comfortable and confident in conditions that most people would shy away and avoid has it benefits, especially with MS. When the ocean is big, and angry, there’s no fighting it, it’ll do whatever it wants with you. After you’ve been hit, and pushed down by a big wave, you’re tumbling and rolling, everything is black because all the foam in the wave refracts any available light. Essentially, you’re a rag doll being tumbled through the water and there’s no fighting it. So, you’re holding your breath and waiting for the ride to end, the best you can do is relax and wait for the buoyancy of the wetsuit to bring you back up…eventually you get there and you take your breath hoping there’s not another wave right behind it.
That chaos in the waves seems so familiar to me and in a way, it feels like home. More recently I’ve likened swimming to MS. It’s an occasional angry monster that you simply need to go along with. Sometimes MS is calm and we don’t think anything of it, but when it’s angry and has you tumbling through life, while we can fight it, we’re largely along for the ride, just waiting to come up for air.
As much as I thought my identity and adventures had left me when I was diagnosed, my life went on. I’m living well with MS and I’ve found new adventures that are every bit as rewarding than previously, maybe even more so because of the obstacles I’ve overcome to achieve them.