I woke up one morning, shortly after my 21st birthday, to find my legs overwhelmed with stiffness and pain. Overnight, walking became a burden and my world would never be the same.
For the next decade, doctor appointments consumed every free moment. Throughout graduate school, marriage, and the birth of our two children, I told my story repeatedly but got no answers. Some doctors looked me in the eye and said I was exaggerating; Others investigated my case but gave up before finding an answer.
As my symptoms worsened in my 30s, I lost faith in my body and blamed it for letting me down, for stealing the best years of my life.
It took a long-delayed multiple sclerosis diagnosis for my mindset to change.
This is not to say that my MS diagnosis at age 34 was easy. In fact, the vision of a disease-free future has kept me active since I was 21 years old. Without a diagnosis, there’s still a chance this whole thing could go away, I told myself. So in 2017, when my doctor told me that a test had revealed MS markers in my cerebrospinal fluid, I broke down. He feared the loss of a future rich in exploration, freedom and independence.
MS is an autoimmune disease that attacks myelin, the protective covering surrounding nerves, causing a variety of symptoms, including weakness, loss of balance, pain, tingling, and fatigue. According to the National Multiple Sclerosis Society, nearly one million people in the United States have MS. The condition is three times more common among women than men and usually begins between the ages of 20 and 50, during the prime of life.
When I first got sick at age 21, an MRI revealed lesions in my brain (a common sign of MS), but a neurologist didn’t think I had the disease. “I don’t know what this is, but it’s not MS,” he told me. A repeat MRI six months later showed no changes, and another years later he was also stable. Areas of demyelination in my brain were attributed to migraines.
My spinal fluid provided the data.
Of the many doctors I saw, none ordered a lumbar puncture until I found the neurologist who diagnosed me. He said there were probably areas of demyelination too small to be seen on an MRI. My cerebrospinal fluid gave me the data I had been looking for for 13 years.
With my diagnosis came treatment. Over the next few weeks, months, and years, my body adjusted to the intravenous immunosuppressive drug, Ocrevus, which I received by infusion every six months. The medication weakened my immune system, which had been attacking my myelin, but it also helped improve my physical abilities. Preparing dinner didn’t take away my strength and taking care of my kids became easier. Slowly, the fog of emotional trauma lifted and the woman staring at me in the mirror began to look like someone I recognized. For a long time I had resented my body. But maybe that wasn’t fair.
“And without medication I could barely stand.”
For years I had answered the question, “Do you exercise?” with “No. I’m not able to exercise.” However, there was nothing I wanted more than to hike with my husband, Josh, who had hiked the entire Appalachian Trail. He so wanted to be part of the activity that he loves most in this world. But without a name for my illness, there was no treatment. And without medication I could barely stand.
Now that I was receiving treatment, I decided it was time to use this body I had been dragging around for over a decade. I started training against low resistance on the exercise bike that had been sitting idle in my basement for years. Starting small, I set goals and pushed my body harder and harder. Sometimes I felt like I was pedaling on honey: I would finish early, feeling defeated. Other days I biked farther than I ever imagined my body could travel.
Sixteen years after the onset of the disease, with the ability to cycle 15 miles with little resistance most days, I felt human again. Little by little, I was able to incorporate family trips to museums, short walks in the park, and visits to my children’s school into my daily life.
‘I released years of guilt and anger’
This body of mine was no longer simply a vessel that held me. He was able to venture out into the world again. It was far from perfect, but there was still a lot I could do. Maybe that was enough.
On our twelfth anniversary, and three years after my treatment, my husband and I went to Asheville, North Carolina. On the second day of our trip, we parked at the foot of the Craggy Pinnacle Trail on the Blue Ridge Parkway, and I let my legs and all their luggage carry me onward, up and through the trail of twisted rhododendrons and lush green moss. I pressed on, over rocks, past gnarled birch trees, and despite the discomfort, climbed the 0.6-mile, 250-foot elevation rating rated “moderately difficult” by our guide.
At the top, I collapsed and said to the nearest stranger, “I just climbed my first trail in over a decade!” As I shouted my success from the mountaintop, I released years of guilt and anger.
In that moment, for the first time in my adult life, I admired my body. I recognized how far I had traveled during the darkest years; how I woke up every morning knowing the day would be challenging, but I faced it anyway. Day after day. Year after year.
I once felt the need to strive for perfection, but at the top of that mountain, my imperfect body showed me that it was more than enough. As the cool air from the mountaintop whistled by, I saw beauty in everything I could do, instead of beating myself up for what I couldn’t do.
Maybe one day a new medication will allow my body to fully recover. But for now I’ll stick with the imperfection, because it has made me value every step I take.