Running With Multiple Sclerosis

For some patients, the disease is defined by its unpredictability. In the middle of a race, one runner confronts what she doesn't know.

The raindrops didn’t care that I was nervous. I think they knew how many times I’ve said, “I love the rain…when I get to stay inside,” and were delighted by the irony. I wasn’t inside today.

It was 6:30 a.m., too early for a Sunday morning, but I was surrounded by smiling people. The race was in Vancouver, and these runners appeared to be comfortable with the wet weather of the Pacific Northwest. I forced an uneasy smile, knowing this would be a complicated half-marathon for me. I’m a Southern California native, familiar with a dry and mild climate, and in the year since I had been diagnosed with multiple sclerosis I had already fallen twice on training runs. I wasn’t sure how much to worry about the slippery surfaces under my feet, and when I don’t know how much to worry, I end up worrying a lot. But I pulled my windbreaker up around my neck and joined the crowd, trying to collect some of the electricity in the air and turn it into courage.

It took one mile for me to start to panic. I don’t generally have perfect running form, but my gait felt funny, even for me. My legs were shuffling and my left foot was dragging. Twice I lost control and unexpectedly slid forward, but both times I caught myself before I fell. I could barely feel my legs except for momentary surges of tingling.

It wasn’t only rain I was afraid of anymore; it was relapse.

My legs had been the first signal that something was wrong last year, too. Numbness had started in my feet, snuck up into my legs and my abdomen, and established itself in my hands. Typo after typo appeared on computer screens while I tried to type, and my handwriting became uncharacteristically sloppy. I couldn’t even tell if I was holding a pen unless I looked at my hands. At some point a doctor’s voice carefully explained that my scans revealed lesions in my brain and on my spine; my stomach dropped at the news and I was surprised I could still feel it at all.

Multiple sclerosis (MS) is a disease where the immune system attacks the central nervous system (the brain, spine, and optic nerves). I have a type called relapsing-remitting MS, which means that symptoms can come and go in flare-ups and remissions. The thing I fret about most, because it challenges my already shaky relationship with uncertainty, is the wide variation of MS disease progression. Anyone who has watched The West Wing can remember when President Jed Bartlett, who had relapsing-remitting MS, went from actively governing the country to being unable to move his arms and legs over the course of one airplane ride. Then President Bartlett was back on his feet with the help of a cane a few episodes later.  The plight of real-life relapsing-remitting MS patients is similar: We don’t know what our bodies will do next. MS will either kind of change my life or really change my life, and there is no way to know which course will be mine.

Amazingly, thanks to many visits to neurologists, hours spent inside MRI machines, a couple of rounds of high-dose corticosteroids, and several months on an established treatment regimen, the symptoms of my multiple sclerosis are gone on most days. But today they were back, and more intense than ever. I imagined dozens of ways I could be humiliated. I could land a step poorly, fall flat on my face. I could push off my foot in the wrong way, fall flat on my face. I could slip on wet concrete, fall flat on my face. But, more importantly, what if the symptoms didn’t go away this time? I contemplated every alarming possibility. Was this a relapse? Was my disease getting worse? What if I stopped being able to run? To walk? Could I deteriorate to the point where I wouldn’t feel my legs again? What will eventually happen to my mind—my memory, my ability to think and communicate my thoughts to others?

I was terrified, close to tears, and there were 12 miles left to go.

I followed the race trail and walked on, tormented, obsessing about all of the terrible things that could happen to me today and in the future. I had some big worries: the neurons in my brain that could get damaged, the possible memory and mobility problems. But I also had smaller, pettier worries: what I’d think of myself if I didn’t finish this course, or what other people might think of a long finish time.

Somewhere between miles eight and nine, cars slowly came down the course to clear the road, pushing the few of us half-marathon stragglers to the edges of the street. The race organizers had created a staggered schedule to fit several races on the same morning, so the cars were making room for the next race: an 8K. I was suddenly surrounded by people who had just started running, people who were talking and laughing and maintaining a healthy pace. They passed me. The critical voice in my head took it as another sign that I was failing.

As a clinical psychologist, I’ve had countless conversations with patients about internal critical voices: how much pain they cause, how distorted they can be, and how much they can hold us back. It does no good to listen when a cruel part of the psyche is being discouraging. It’s demoralizing. But knowing these things didn’t stop me from beating myself up.

Relief came when I found another voice in my head, one that was not a perfectionist, and I took some time to listen to it instead. It didn’t conjure a phantom audience who would jeer at me for taking more than three hours to finish a half-marathon, or an imaginary Future Me who can’t think anymore.

It knew what was important. My husband would be waiting for me at the finish line, whether I got there on foot or on some kind of sweeper van that picked up the people who couldn’t finish. And despite my fear that I would lose the abilities to walk and to think, at that moment I was both walking and thinking. I may not have been running, but I managed to put one foot in front of the other, repeatedly, rhythmically, and several miles were behind me.

It’s not easy for me to focus on what is important. I get lost. I ignore what I have now, for fear that I could lose it one day. I hope I’ll always have access to the part of me that knows that the important stuff is what I have in the present moment that precedes everything I can’t know.

So, on this rainy Canadian morning, my feet and my thoughts could still move forward, despite numbness and fear and lesions on my brain and spine. And if one day I find that I cannot put one foot in front of the other, I’ll trust that Future Me will still find a way to move forward.