As my symptoms worsened in my 30s, I lost confidence in my body and blamed it for stealing the best years of my life.
It took a long overdue diagnosis of multiple sclerosis to change my mind.
That’s not to say that my diagnosis of MS at age 34 was easy. In fact, the vision of a disease-free future has kept me going since I was 21. Without a diagnosis, there’s still a chance it could all be lost., I tell myself. So in the year I was devastated when my doctor told me in 2017 that a test had revealed MS markers in my spinal fluid. I feared that a rich future of exploration, freedom, and autonomy would disappear.
MS is an autoimmune disease that attacks myelin, the protective covering that surrounds the nerves, causing a variety of symptoms including weakness, loss of balance, pain, seizures and fatigue. About one million people in the United States have MS. According to the National Multiple Sclerosis Society. The disease is three times more common in men and usually begins between the ages of 20 and 50.
When I first got sick at age 21, an MRI showed lesions on 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 said. A repeat MRI six months later showed no change, and it remained stable even after another year. Migraines are the areas of bleeding in my brain.
Of the many doctors I saw, none of them ordered a lumbar puncture until I saw the neurologist who examined me. He said there may be areas of anemia that are too small to show up on an MRI. My spinal fluid provided the information I had been looking for for 13 years.
With my diagnosis came treatment. Over the following weeks, months and years, my body adjusted to the immunosuppressant Ocreves, which I injected every six months. The drug weakened my immune system, which was attacking myelin, but it helped my immune system improve. Making dinner didn’t drain my energy, and taking care of my kids became easier. Slowly, the fog of emotional shock lifted and the woman looked back at me in the mirror and began to look like someone I knew. I resented my body for a long time. But maybe that wasn’t right.
For many years, “Do you exercise?” I answered that question. “No. I can’t exercise. But there was nothing I wanted more than to go hiking with my husband, Josh, who hiked the length of the Appalachian Trail. I wanted so much to be a part of his favorite activity in the world. But without a name for my disease, there was no cure. And without medicine, I could not stand.
Now that I was getting treatment, I decided it was time to use the body I had been dragging for over a decade. I started low resistance training on an exercise bike that had sat idle for years in the basement. I started slow and set goals and pushed my body harder. Sometimes I felt like I was defeated by honey – I would finish early, feeling defeated. Other days I cycled more than I thought my body could do.
16 years after the onset of the disease, the ability to cycle 15 miles at low resistance most days, I feel human again. Slowly, I was able to add family trips to museums, short walks in the park, and visits to my children’s school into my daily routine.
This body of mine was no longer just a vessel that contained me. He was able to enter the world again. I wasn’t perfect, but there was still a lot I could do. Maybe it was enough.
On our 12th anniversary – and three years into my treatment – my husband and I went to Asheville, NC, and stopped at the foothills on the second day of our trip. Craggy Pinnick Trail I exited the Blue Ridge Parkway, and let my legs and all their baggage carry me forward, up and through twisted rhododendrons and lush, green moss. I pushed comfortably over boulders, past gnarled birch trees, to gain the 0.6 miles and 250 feet of elevation gain that our guidebook rated as “moderately difficult.”
I fell to the top and said to a stranger, “I climbed my first trail in over ten years!” As I shouted my success from the mountaintop, I released years of blame and anger.
In that moment, I appreciated my body for the first time in my adult life. I realized how far I’ve come in my amazing years – how I woke up every morning knowing the day was going to be a challenge, but I’d face it anyway. Day after day. Year after year.
I once felt the need to strive for perfection, but at the top of that mountain, he showed me that my imperfect body was more than enough. As the cool mountaintop air whistled, I saw the beauty of all that I could do instead of punishing myself for what I couldn’t do.
Maybe one day a new drug will allow my body to heal completely. But for now, I’ll take my shortcoming, because it makes me appreciate every step I take.