On Stepping Forward

There are, in my wardrobe, four folded cotton t-shirts of bright green, neon orange, and crisp white, acquired from four subsequent years of walking for advocacy, stepping in pursuit of a cure for multiple sclerosis. I participated in my first Walk MS in the spring of 2014. Having been diagnosed with MS a couple of months earlier, my blood coursed with rage and denial, prompting me to run—and even, at times, sprint—the outdoor route of five kilometers in solitude. I refused to accept the prospect of this illness someday taking my freedom, planting me in a wheelchair, unable to walk. My friends and family took a slower pace, attracting attention from passing cars with their flashing swarm of shocking lime apparel, their signs reading I walk for my daughter or Walking for a cure for Anne.

I did not walk in 2015. My parents collected a shirt for me, walked in my honor, then gingerly presented me with the branded paraphernalia dispersed at the event. Completing a 5K at that time was out of the question, my ambulation wholly compromised from a string of destructive relapses and hospitalizations. I'd be damned if I would have let someone push me in a wheelchair. My pride, my ego, my hubris burned too strong for such a public statement of defect, still licking my wounds from lost time to bedridden hospital stays and an utter lack of positivity. In those dark days I had given up on hope for treatment to hold the relapses at bay, let alone a cure for the disease writ large.

But we found a treatment course, my doctors and parents and I, and I was on the mend, discovering what life could look like in the aftermath of such destructive ruin, afraid the bombs of demyelination would strike again at a moment's notice. 

We’re Stronger Together, the shirt's block print reads, a stamp of construction zone orange in the branded font of the National Multiple Sclerosis Society. Unwilling to affirm the truth of this statement, I folded the tee into a wrinkled clump before stuffing it into the far bottom corner of the sweats drawer in my wooden dresser, then retired to my recalcitrant life.

With the abatement of MS relapses thanks to an aggressive disease modifying therapy, I assumed a new rhythm of normalcy in my daily life, concertedly working each day towards an increase of strength, endurance, and stamina. Bolstered by a gaggle of friends in the spring of 2016, we took to the track (this time hosted at an indoor venue thanks to a typical Wyoming spring blizzard) and strolled in a jovial pack at the annual Wak MS. For perhaps the first time since being diagnosed, I felt alright with my fate. I had been to hell and back, and I had survived. There was no guarantee that the blackness wouldn't come for me again, but in this moment I was alive and independent and okay.

I don't know what changed, but soon thereafter I lost my willingness to publicly embrace MS. The illness became my dirty little secret, some perceived weakness that I was self-mandated to conceal at all costs. I don't remember when or where the fourth Walk MS t-shirt came from, but I know I didn't participate in the event whenever it occurred. Admitting disease defeat would have been too great a risk to whatever infallible facade I was attempting to uphold. Years passed with my secreted illness held tight, my sense of identity sharply cleaved down the middle, exhausting my spirits with such stringent maintenance of a lie, an omitted truth.

Instead, I took to walking and running on my own, sojourning to the Greenbelt loop West of town, safely held between the lazy bedrock of the Laramie River and a dancing grove of Aspen trees. Headphones blasting into my ears, I would tee up angsty female vocalists and sprint out my rage at the world. At the end of each run, my legs would prickle with fiery pins and needles that traveled from my toes to the base of my trunk. I would take cold showers and spend the next hour stretching while the painful sensory barragement gradually abated. Then I would apply my mask of normalcy and go out into the world in a state of perfectly executed make-up and denial.

The burden was heavy. I tamped it down with alcohol and fierce independence until it became too much to hold on my own. One day, a cherished friend gently suggested therapy. I had tried therapy before. It had not gone well. It had soured my taste for the practice. But something in my friend's iridescent eyes impelled me to try again. Thank goodness. My new therapist helped me heal, guided me towards a reunification of my private and public selves, a syncing of Patient Anne and Public Persona Anne, and gave me the tools to speak openly, to live authentically. And good thing too, because soon the disease would hit again with its unpredictable waves of inflammation and debilitation.

Running fell off the list of activities I could withstand. Walking for long distances, too. But in the absence of extended ambulation, I picked up a pen and started writing. Then I mustered up the courage to share my words with others. Finally, I set my sights on returning to the trails. With time and dedication, the healing recipe of writing, therapy, and movement—all coupled with a gracious practice of sobriety—have given me a new lease on life, and a new means of advocating for the plight of chronic illness.

I have yet to participate in another Walk MS. I'm not opposed to the idea—there are Walk MS events in both Laramie and Cheyenne, WY at the end of May that I considered joining. But I don’t need to add to my collection of threads for a cure. I've since found a better form of advocacy that serves as a balm to my spirit: writing these words, sharing my journey.

May it heal all that needs restoring.