Why I Can't Walk for Multiple Sclerosis Anymore

Spring in Colorado means unpredictable weather. Bright, sunny skies are quickly replaced with heavy wet snow showers – sometimes even on the same day.

The weather has never stopped my mother and sister and I from attending either the Denver or Boulder Walk MS event before. We’ve walked in the burning sun and the freezing rain; sloshed through spring snows and sweated in the heat. Not once in the last decade have we failed to complete it.

We walked for my father. He was diagnosed with secondary-progressive multiple sclerosis almost 30 years ago.

Many people living with MS can live functional, active lives. My dad is not one of those people. He has gradually lost his mobility and has been bedbound for a decade. His battle with MS began full of determination but gradually slid into resignation as the disease wrecked havoc over the years. “I refuse to be beaten,” Dad would often say. I held those words close my heart, hoping and praying they would somehow stem the onslaught of plaques hardening his nerves and restricting his movement. Eventually, I accepted that words had no power to stop the course of an unpredictable disease.

Our Walk MS tradition began when I was in early college, when dad’s own ability to walk became non-existent. My mother and sister and I signed up hoping our contribution would somehow make a difference. Not in Dad’s life, not in Dad’s fight – I had long ago accepted that barring a miracle discovery, he would remain largely immobile for the rest of his life. Still, our annual contribution lifted our spirits and gave us a moment to reflect upon what we had lost and what we hoped could still be accomplished.

Every year, we would offer $100 each, collect an orange and green t-shirt, and pin a sign on our backs saying “I Walk For…” upon which my sister and I would write “My Father;” my mother usually wrote “My Man.” The camaraderie on those spring mornings as we strolled under budding trees, cheered on by boisterous volunteers, was healing. More than that, it was a chance to do something together as a family.

Mom is Dad’s caregiver, a demanding job that requires her constant presence in the house. Someone always needs to stay with Dad; during the Walk MS, that person was usually my brother. The four of us (my mom, brother, sister and myself) have never simultaneously attended Walk MS. Truthfully, I can’t remember the last time when the four of us did anything outside the house together.

Each year, after completing the walk, us girls would spend the rest of the day doing something fun out on the town. A stroll through a farmer’s market in Boulder; dim sum and then the zoo; brunch with Irish coffees and the museum. I cherished these moments and looked forward to planning our excursion each year. The rare chance to experience something outside the walls of our house together, to do what ordinary families do each weekend, often brought me to tears.

All that changed over the last year. I can’t attend the Walk for MS anymore. And neither can my sister. Last year she was diagnosed with multiple sclerosis.

What is there to say when your world dramatically changes? When you realize the worst isn’t over? When the future is breathtakingly fragile, more uncertain than you ever imagined? When the story you told yourself isn’t true, that no amount of pain and suffering can somehow save you?

You say “I refuse to be beaten.” Over and over, day after day. Even though it may not be true.

I refuse to be beaten and neither does my family. But I can’t go to the Walk for MS this year, maybe not ever again. Despite the good work that the organization does, the help and hope that such contributions bring, I can’t give another $100 dollars when my sister’s medical bills are mounting. I can’t bring myself to write “My Father and now, My Sister” on the paper sign reading “I Walk for….” that I pinned to my back each year. I can’t plan a girls’ day out when my sister’s health is now as unpredictable as the spring weather – sun and snow, hot and cold, often on the same day.

I can’t think about what my family has lost and what can still be accomplished because we just don’t know yet. We’ve been taken down a different and more arduous road, far different from the path of healing and acceptance I believed we were on. The gentle stroll under the budding trees with supportive volunteers is simply not the same anymore.

I hope one day I will be able to walk for MS again. This year, I can only walk for my family. Together, around a nearby lake, my mother and I will try to continue the tradition of spending time together outdoors in the Colorado spring weather. Hopefully the weather will be nice and my sister’s symptoms will abate enough so she can join us.

It’s a walk we’ll have to take many times, a walk which few people, even within the MS community, likely understand. It’s our beaten path. I can only keep trying not to let it beat us.