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Fight rare neuro-immune disorders. Together.
On December 19, 2012, I was traveling to my parents’ home in upstate New York for the holidays. When I woke that morning I had pain in both of my heels and I was still fighting a slight cold that I had had since Thanksgiving. By the following morning my lower back was burning. That evening, while sitting in a recliner, I noticed that I couldn’t tell the difference between something sharp or dull poking me in the leg. Within 45 minutes, this lack of sensation began moving further up my legs and I couldn’t stand. At this point my family took me to the emergency room and by the time we arrived, the paralysis had moved halfway up my chest. From there I underwent a series of tests, including an MRI, spinal tap, and blood work.
Several weeks after being admitted into the hospital and receiving steroids and plasmapheresis, the neurologists on rotation diagnosed me with multiple sclerosis. When I asked if I would ever walk again, I was told no. I wasn’t even given a glimmer of hope. As a 28-year-old that was devastating to hear, when I had been living independently for so long. Now, I needed to rely on people more than I had in a really long time. What was truly upsetting was that I couldn’t see the neurologist on staff who specialized in multiple sclerosis, and was also familiar with TM, because he wasn’t on rotation. Three weeks after I was released from my 45-day stay in the hospital, I saw the specialist. He listened carefully to my story and explained that he felt I actually had TM. Grateful for the time this neurologist took to talk with me and to reach out to other TM specialists, I decided it was time to travel out-of-state to a TM center to get a second opinion.
Finally, three months after I lost the ability to walk and after another round of tests, I was given an answer. Yes, I had TM, but this neurologist told me that I should never lose hope and reminded me that “vitamin positive,” or a positive outlook, was crucial to my health and recovery. That was the turning point for me, which renewed my hope. Since then I’ve returned to work and I’m finishing my PhD; I’ve found a TM support group in my town and physical therapists in my area that specialize in spinal cord injuries; and I’ve married my best friend. My husband, Jeff, has been with me every step of the way and while he could have decided he wasn’t up for the challenges I was facing, he didn’t flinch. Instead, he wanted to marry me, so we could fight TM together. While I focus on my physical therapy to help me stay strong, I also hope that one day my hard work will pay off once researchers find a cure, so I can walk down the aisle to Jeff again, but this time on my own without my wheelchair.
What I’ve discovered through this journey is that it only matters if I have hope and that I need to surround myself with the doctors, physical therapists, family and friends that share this same belief. Sure, I have my dark days when I feel angry at what’s been taken away and think that I’ll never get to feel the sand and ocean between my toes. However, it’s on these days when I feel like recovery is impossible that my amazing support system reminds me that it isn’t a matter of “if” I walk again, but it’s a matter of “when.” So no, I don’t know when I’ll walk again, but with organizations like the TMA continually fighting to help find a way to restore function, there’s no way I can lose hope.
Kristin Smith
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