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Fight rare neuro-immune disorders. Together.
August 16, 2011. That day will forever be embedded in my mind; it marked the end of my old life and the beginning of a journey that I never, ever would have expected to happen.
Before that day, I was just an ordinary 13-year-old girl. I’d been a writer for as long as I could remember, and I enjoyed scribbling stories in my free-time. I was also a runner, and cross country was quickly becoming my favorite sport; I dreamed of running marathons and triathlons in the future. However, in just a few hours, my future plans were turned around completely.
I woke up on August 16, 2011 with a sharp pain on one side of my neck. Thinking that I’d just slept on it funny, I got out of bed, determined to enjoy one of my last days of summer break. However, the pain suddenly grew and spread, engulfing my neck, shoulders, arms, and upper back in what felt like a mixture of stabbing, burning, and achiness. Sobbing, I lay in bed and attempted to stretch, hoping it would alleviate some of the agony. Meanwhile, my left arm and hand were gradually weakening. Suddenly, my right arm fell to my side, completely limp and seemingly lifeless. At the same time, I realized that my chest felt tight and it was getting harder to breathe. I screamed for my parents, and my mom immediately drove me to the ER.
I got a CT-scan and they did some bloodwork, but the doctor said that I would need to be transferred to a bigger hospital so I could get an MRI. As the nurses helped me get up to walk to a gurney for the transfer, my legs collapsed. I couldn’t move my arms. I couldn’t walk. I couldn’t sit up. I was in the most pain I’d ever experienced in my life. As a 13 year-old, instead of preparing for the start of 8th grade, I was paralyzed and thrust into a world of far too many doctors and tests. I couldn’t walk, let alone run, and I couldn’t write or even hold a book up to read. It felt as though everything that made me had suddenly been snatched away, and I felt empty.
Instead of dreaming of marathons and triathlons, or even of a new personal record in a cross country race, my goals for the future now consisted of walking again. Holding a pencil again. Dressing myself again. Washing my hair again. These are all small things that most people do every day without even thinking about it, and yet, I wanted to do them more than anything in the world.
The MRI revealed that there was damage from C1-T1 on my spinal cord. I was diagnosed with Transverse Myelitis, and the treatments I was given included high doses of prednisone and lots of physical and occupational therapy, but there was no cure, which both shocked and frightened me to no end.
Though, I ultimately recovered more function than expected, it’s been five years and Transverse Myelitis still affects me in so many ways. Every day I live with chronic pain, chronic fatigue, weakness, partial paralysis, spasticity, and more.
Letting go of many things that I loved—especially running—was one of the hardest things I’ve ever had to do. I often get frustrated when I have to cancel plans due to flares, or when I have to worry about overdoing it when out with friends instead of being able to just let go and have fun like a normal teenager. Although I still often grieve those losses, I’ve learned that they aren’t everything, and I’m so incredibly grateful for what I can do. I can write again, albeit in a different way. Plus, I’ve found some other hobbies I enjoy, such as singing and swimming, which I may not have otherwise discovered. I’ve also met some of my best friends due to TM, and I have no idea what I’d do without them—their hope, love, and constant support strengthens me in so many ways.
I hope that I live to see the day when conditions such as Transverse Myelitis are cured, because they are such devastating disorders that permanently alter the lives of far too many. In the meantime, I hope that the newly diagnosed find the love and support that I’ve been blessed with, because it makes life so much easier and less lonely. I also hope that they realize that life can still be enjoyable when so much has been taken away. After all, there is still an infinite number of ways to find happiness and make your life into the one you want, despite the obstacles it may throw at you.
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