100 days to share 100 stories.
100 days to tell the world.
100 days to spread hope.
Fight rare neuro-immune disorders. Together.
My brain was going a mile a minute – it was scheduled to be a great weekend getaway! Memorial Day weekend 2007, a two-day overnight stay at a beautiful casino/spa in Atlantic City. Just my baby sister, Joan, and daughter, Amanda Joy. Massage? Check! Facial? Check! Dinner at a snazzy restaurant? Check! Just finish packing, shower and off we go.
What’s that feeling in my legs? Some kind of weird charliehorse. No problem, a warm shower will break it up quick enough. Nope, something is not right.
By the time I got to my bed, I felt like a steak knife was ripping down the back of my left leg. Thirty minutes later in the ER, the only feeling I had from the waist down was unbearable indescribable pain.
For the next twelve days, I was in the ICU having trouble breathing, and the staff was trying to keep me “quiet” with morphine and percocet and so much more. People came in and out, and their concern for me scared me. Their faces told me I was in deep trouble. I was in a blurry coma. Must be a herniated disk, no, it’s guillain-barré. Finally, after two weeks a young radiologist saw a lesion and said, “consider transverse myelitis.” But, by that time the “damage was done,” I was paralyzed from T7 down, and all that was available was “do the best you can with the condition you’re in.” There’s nothing that can be done, I had lost the window of opportunity to get back to my “old life.”
I had a new red wheel chair, my permanent mode of getting around from then on. I truly never thought I would ever be “normal” again. And I was right. A summer spent at Magee Rehab in Philadelphia, followed by months of intensive follow-up outpatient therapy helped me “turn my legs on again,” and with the use of a walker, I was able to develop a new “normal.” I was able to return to my job as a court reporter, resume some duties as an ordained deacon in the Episcopal Church, and begin a new level of gratitude. Sitting around all day and experiencing this pain 24/7 would be too much insanity. And so I joined a gym where I learned the ins and outs of chair-yoga, I moved around in a warm therapy pool, I pedaled around on my new three-wheeled bike, I lost weight so I can be the best I can be (for the shape I’m in!).
Is it hard? Yup, you betcha! Do I pray I will wake up from this nightmare tomorrow? Yup! Do I cry sometimes? Yup! Do I feel sorry for myself? Sometimes, yup! Sometimes my day’s mantra is “fake it till you make it.”
One joy is that in 2012 my children, Amanda and Rob, decided to honor me by having a Walk in my name, bringing attention and awareness to this disorder called Transverse Myelitis, and raising funds for The Transverse Myelitis Association. From that endeavor, I have met others like me, who walk this road with me, and my life has taken on a meaning and purpose I never envisioned. The love and support from my family and friends sustains me beyond words. And nine years later, I am so very grateful!
So, I now write as a Hope Ambassador for The Transverse Myelitis Association, filled with gratitude for their work over the years to bring attention to this horrible condition, as well as other neuroimmunological disorders. It is an incredible organization, begun in the kitchen of their founder, Sandy Siegel, inspired by the love for his wife, Pauline.
Video from the 5th annual walk to raise awareness:
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