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Fight rare neuro-immune disorders. Together.
On a Wednesday in 2004 I was on a business trip when I was stricken with Transverse Myelitis. I wasn’t doing anything adventurous. I got up that morning, put my feet on the ground and my right foot was numb and had a pricking feeling. I assumed that I had slept wrong, or had pinched a nerve. I kept walking around thinking I could shake it off. This was around seven in the morning, and by nine I was walking down the hallways and walking into the walls. People kept looking at me thinking I was drunk. I would say I don’t know what’s wrong! I can’t walk and keep falling down. I was admitted to the ER and by noon was paralyzed from the waist down. After five days of every test out there, the doctor came in on Sunday and said the good news was that I didn’t have Multiple Sclerosis, the bad news was that I have Transverse Myelitis. He then walked out, which left me to look up Transverse Myelitis on the internet. That was far worse than not knowing anything.
I took a look at my file and saw the word “paraplegic” on it. I was like, “Whose file is this? This isn’t me! We need to change this, that’s not right, I have feeling in my legs and it still feels like needle pricks, but I don’t have control of my muscles. If I put my feet on the ground, I can feel the heat or the cold. If someone was to spill something on my leg, I can feel it. I look down at my leg and tell it to move but it won’t.” When I came home I was lucky enough to find The Transverse Myelitis Association and since that time I have no longer felt alone in this journey.
Since my diagnosis, I have been able to zip line, canoe, kayak, climb a rock wall, go jet skiing, four-wheel inner tubing, river rafting, water skiing and tandem sky diving. This October, I will be part of a triathlon. I will hand cycle 15 miles while an able-bodied person runs and another swims. I led the Transverse Myelitis Awareness walk in 2013. This walk brought together over 100 people throughout the state of Georgia. The looks on the faces of fellow TMers and caregivers sharing their stories is so rare and creating new friendships was priceless. I am the support group leader in Georgia for people who have rare neuro-immune disorders and caregivers. I was able to petition the state of Georgia for a Transverse Myelitis Awareness Day and it was passed on February 15, 2012. House Resolution 809 declared that day Transverse Myelitis Awareness Day. It is my hope and dream that the cause and cure for TM will be found in my lifetime. I am blessed to have met so many wonderful people because of the TMA and continue these friendships. I tell myself every day there is still life to live and “TM Will Not Win.”
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