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What 'Progress' Means as I Live Life With MS

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Progress. It means advancement, moving forward, and improvement. Progression is something that’s tracked in musicians, singers, athletes, and aspiring chefs. Progress is positive, it’s motivating, it’s inspiring. It’s the upward curve on the chart, the digital increase on the score sheet, the advancement to the next level.

For me, progress looks very different. It means I’ve had to teach myself to become left-handed because my right hand can no longer grip a pen, or a glass, or a spoon. It means I have only two seconds at a time to let go of the toilet grab bar to pull up my pants instead of five. It means someone else has to wash my hair because I can’t raise my arms high enough anymore to do it myself.

I was diagnosed with multiple sclerosis (MS) 13 years ago, and it’s a progressive autoimmune disease. That means that without fail, my physical condition will continue to deteriorate over time until a cure is found or until I die —whichever comes first. Every person with MS has a completely different disease profile, so some people progress more quickly or slowly than others. I’m lucky that I’ve been in the “more slowly” category, but the progress still happens.

Just five years ago I was still walking, albeit with the help of a walker. Then I moved to an electric scooter for long distances, and I began using a power wheelchair full-time four years ago. I thought (or hoped) only my legs would continue to be affected as I had fully adapted to that limitation. But two years ago, my right hand and arm started weakening. That’s when I started teaching myself to do everything left-handed.

The hardest part about MS “progress” is that you can’t predict it. The treatment I’m currently on has helped slow mine down considerably, but I can’t stay on it much longer due to increasing risk of side effects. I travel internationally for a living, and almost always by myself. I’m spending roughly four months out of the year in other countries now because I may not be able to get out of bed in five years, or 10, or two. I have no way of knowing, and it scares the hell out of me.

A picture of the writer next to her orange walker.

There are two ways for me to handle MS progression when it’s staring me in the face, and I’ve done both. I can ignore it and tell myself it’s a fluke. “I just haven’t eaten enough today,” “I just didn’t get enough sleep last night,” or “I just forgot to take my B12 vitamin this morning.” Or, I can face it head on, cry or get angry if I need to, and figure out how I need to modify my life to begin living my “new normal.”

I’m a planner, and I can’t fully explain how terrifying it is that I can only plan out my life one year at a time. I carry an annual travel insurance plan in case my MS kicks into high gear and I have to cancel a cruise or flights that I booked for next year. I live alone, and while my family and neighbors help me sometimes, they won’t always be around. I’ve started preliminary “window shopping” for assisted living facilities and thought about the things I might need help with from a part-time caregiver.

To hold off the ever-present fear, I take my days one at a time. I take stock of my body each morning when I wake up, and make the decision daily of what I can handle and what I need to put off for another day. I wasn’t so disciplined just a few years ago, but this measured approach has served my mind and body well. I guess you could call that the good kind of progress.

Originally published: June 12, 2018
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