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Chiari Malformation and Me

Today, I will walk in the Conquer Chiari Walk Across America. I will be joining other Chiarians in the Nashville walk. I learned about my congenital condition in 2016, but it had been affecting me for much longer: I had always experienced back pain and balance issues; now I knew why.

At the time that I found out about Chiari Malformation, my condition was progressing quickly toward paralysis. I was one of many with Chiari who needed decompression surgery. The surgery itself is kind of scary, as it requires cutting out a portion of the skull and spine, as well as sewing in a patch into the membrane that covers the brain. I had a long and grueling recovery. There were days when I thought I would never walk without a cane. There were days when I never thought I would complete my doctoral degree, even though I was so close!

I have developed a number of chronic illnesses over the last several years. Most have been linked to Chiari, and all have made it necessary for me to adjust my behaviors, including self-care and socialization. I am currently doing well, with only the occasional need for a cane and to rest more than usual. I am vigilant in the event of a flare up or new illness, though I refuse to let these issues stop me from living my life.

Today I have a Ph.D., and I teach at a university with a faculty I appreciate so much. I have a large and strong support system to call on when I need some extra assistance. I walk without fear of paralysis. I walk at the Conquer Chiari Walk because there was a time when I could not have imagined doing so. I walk at the Conquer Chiari Walk to honor the people who cannot. I will always have some issues related to Chiari. But I will walk for as long as I am able throughout the rest of my life.

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