As my symptoms worsened in my 30s, I lost faith in my body and blamed it for letting me down and robbing me of the best time of my life.
It took much later in my multiple sclerosis diagnosis for my mindset to change.
That’s not to say my MS diagnosis at age 34 was easy. In fact, the vision of a disease-free future has kept me going since I was 21 years old. Without a diagnosis, there is still a chance that everything will disappear, I say to myself. So when my doctor told me in 2017 that tests had detected MS markers in my spinal fluid, I burst into tears. I was afraid of missing out on a prosperous future full of exploration, freedom, and independence.
MS is an autoimmune disease that attacks the myelin that protects the surrounding nerves, causing a variety of symptoms including weakness, loss of balance, pain, tingling, and fatigue. Nearly 1 million people in the United States have MS, According to the Multiple Sclerosis Society of America. The condition is three times more common in women than men, and often develops between the ages of 20 and 50 in the prime of life.
When I first developed the disease at age 21, an MRI revealed lesions on my brain, a common sign of MS, but my neurologist was convinced I had the disease. I didn’t think about it. “I don’t know what this is, but it’s not MS,” he told me. A repeat MRI scan 6 months later showed no changes, and a further scan 1 year later showed that the condition was stable. Demyelinated areas of my brain were thought to be the cause of my migraines.
Of the many doctors I saw, none ordered a lumbar puncture until I found a neurologist who would diagnose me. He said there were probably areas of demyelination that were too small to be seen on MRI. My spinal fluid provided the data I had been looking for for 13 years.
My diagnosis came with treatment. Over the next few weeks, months, and years, my body became accustomed to Ocrevus, an intravenous immunosuppressant drug administered through an IV every six months. This drug weakened my immune system, which was attacking myelin, but also helped improve my physical performance. I don’t have to use up my energy preparing dinner, and it’s easier to take care of my kids. Slowly, the fog of emotional trauma lifted, and the woman looking at me in the mirror began to resemble someone I knew. For a long time, I hated my body. But maybe that wasn’t fair.
For years, I’ve answered the question, “Do you exercise?” Without. I have no athletic ability. Still, there was nothing I wanted more than to go hiking with her husband, Josh, who has hiked the entire length of her Appalachian trail. I wanted to be a part of the activity he loved most in this world. However, without a name for my disease, there was no treatment. And without medication, I could barely stand.
Now that I’m undergoing treatment, I’ve decided it’s time to use this body I’ve been holding on to for over 10 years. I started low-intensity training on a stationary bike that had been sitting in my basement for years. I started slowly, set goals, and made my body stronger and stronger. At times I felt like I was pedaling through honey, and I felt defeated and ended early. There were days when I rode my bike farther than my body ever imagined.
Sixteen years after the onset of my illness, I felt like a human again, able to bike 15 miles most days with minimal resistance. Slowly, I was able to incorporate family trips to museums, short walks in the park, and visits to my children’s schools into my daily life.
This body of mine was no longer just a vessel to hold me down. It was able to venture out into the world again. I’m far from perfect, but there was still so much I could do. Maybe that was enough.
On our 12th anniversary and 3 years since we started treatment, my husband and I traveled to Asheville, North Carolina. On the second day of our trip, we parked at the base of the mountain. Rugged Pinnacle Trail Stepping off the Blue Ridge Parkway, I let my legs and all their baggage carry me forward and upward, through a path of twisted rhododendrons and lush green moss. I climbed over rocks, past gnarled birch trees, uncomfortably pushed forward, and climbed a 0.6-mile, 250-foot elevation gain that the guidebook rated as “moderately difficult.” .
At the top I collapsed and said to a stranger nearby, “I just climbed a mountain trail for the first time in over 10 years!” I released years of blame and anger while shouting success from the mountaintops.
In that moment, I admired my body for the first time in my adult life. In my darkest years, I realized how far I had traveled. I remembered waking up every morning knowing it was going to be a difficult day, but facing it anyway. day to 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 enough. As the cool mountaintop air whistled, I found beauty in all that I could do instead of punishing myself for what I couldn’t do.
Perhaps someday a new drug will completely heal my body. But for now, I will embrace the imperfections. Because it makes me appreciate every step I take.