Diagnosis: Transverse Myelitis
Ohio, United States
At the end of September, I celebrated my 10 year “crapiversary”. It has been 10 years since I was diagnosed with Transverse Myelitis. Some people think it is silly that we celebrate the onset of my TM, but my mom always says it is a time to celebrate, because the past 10 years prove that our family can make it through anything!
I got TM when I was four years old. I remember very little of what happened at the time, but my parents have filled in a lot of the details. I was falling at preschool so my parents took me to the doctor, that led our family down a path of several diagnoses over the following week, before I was hospitalized. After being diagnosed with TM, I was paralyzed from my chest down, and had minimal use of my arms and hands. When I was discharged, the use of my arms and hands had fully returned, but I didn’t have any use of my legs. Presently, I have about 60-70% of “normal” usage of my right leg, but my left leg does not work at all. I use forearm crutches to walk.
My parents talk about how they were often judged because they made me do everything that my two brothers had to do. They never coddled me (although my dad did carry me to bed every night!), and made me figure out how to adapt to different situations. We have also learned to try to find humor in everyday life. We have learned it is easier to laugh at challenging situations rather then get down about it. For instance, last year, we were in New York City walking around when I decided to jump a curb with my wheelchair, just like my wheelchair salesman had taught me. I thought I was an expert at this because I had done it before. I rolled up to the curb and flipped right over. My parents and brothers just laughed and said, “How long do you think it will take her to get back up?” They didn’t rush to my side because they knew I was able to get up by myself, but it made even some New Yorkers look at us strangely as they laughed at me. I rolled myself back up, and we were on our way…laughing as we headed down the street.
Having TM has brought me and my family opportunities that we would not have had otherwise. When I was around six, my family went to the Transverse Myelitis Family Camp for the first time. While we were there, we met lots of different people who we have seen over the years, and we still keep in touch with many of them through social media. At the Victory Junction Gang Camp in North Carolina, one of our favorite activities was archery. We have gone to a few other SRNA family camps over the years including at the Center for Courageous Kids in Kentucky. The memories from each of these camps will last a lifetime.
I decided to join the Bowling Green Gators Swim Team when I was nine and started competing in “typical” and disability swim meets. Swimming was one sport that I was able to participate in, to better myself each time I swam. Last year, I joined my junior high school’s track team and I competed in the shot and discus, using a throwing chair to participate. These past four years, I have competed in the National Junior Disability Championships (NJDC) in archery, swimming, field events, and powerlifting. At these events I have met many new friends whom I look forward to competing against and hanging out with each year. My long term goal is to compete in the 2020 Tokyo Paralympics in swimming.
Many people say that I am an inspiration to them, but the reality is that I am competitive and refuse to be told that I can’t do something because of my disability. While I wish I could be normal, TM has given me many opportunities, and let me meet some amazing people.
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