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Fight rare neuro-immune disorders. Together.
On Sunday, July 29th, 1994, I was completely paralyzed from the waist down from transverse myelitis. I had a bout with the flu that lasted for a couple of weeks which was followed by a week of low back pain. That the flu and back pain could possibly be symptomatic of an auto-immune disorder that would cause complete paralysis was not anywhere in my 35-year-old mind. My attack came on suddenly and I fell onto the floor with excruciating pain. My husband, Sandy, called an ambulance and I was rushed to the closest hospital. I spent nine hours in an emergency room while the doctors ran tests looking for evidence of a traumatic injury. When he found nothing, coupled with no history of trauma, he began to suspect that my pain and paralysis was caused by some type of psychosomatic phenomenon. It wasn’t until after I was unable to urinate that it dawned on him that something neurological could be going on with me. He then brought in the neurologist on call.
The neurologist did not know what was going on either, but he got me admitted and he began high dose intravenous steroids. The testing lasted throughout the week and included MRIs, a lumbar puncture and many blood tests. I was released on Friday. As I left my room, the neurologist told me that my diagnosis was transverse myelitis. I had never heard those words and had no idea what my future might look like. I didn’t know if I would be paralyzed for the rest of my life; I didn’t know if this was a disease that could kill me.
I went to a rehabilitation facility where I spent the next two months. Nothing moved below my waist. After a month, I was finally able to move the big toe on my left foot. Very slowly and in amazingly small increments, I began to experience a return in nerve and motor function. I received intensive out-patient physical therapy for two years. I went from a wheelchair to a walker to being able to walk with canes over those two years. My long term symptoms have been bowel and bladder problems, motor weakness, neuropathic pain, fatigue, depression and cognitive dysfunction.
I had been a kindergarten teacher for three years when I had my attack. Six months after onset, I was back in my classroom teaching a morning and an afternoon kindergarten class. I was an elementary school teacher for another 22 years.
In many ways, my story is also the history of The Transverse Myelitis Association. Shortly after I was diagnosed, Sandy and I found the Gilmurs from Tacoma and we established our organization. Along with Jim, Debbie and many dedicated and selfless volunteers, we worked to create the TMA.
Almost everything about having TM has made life a challenge. Activities that able-bodied people take for granted require so much time and energy from me. I sometimes feel like I’ve run a marathon after brushing my teeth or putting on my socks.
If given the choice, I would have chosen to never have heard the words, ‘transverse myelitis.’ But I wasn’t given the choice. In spite of the losses that I regularly mourn, I am aware every single day that this experience has offered me many blessings, as well. I have been surrounded by the most amazing children, teens and adults from every nationality and ethnic background on the face of the earth. I have been introduced to courage and generosity and kindness in ways that might not have been possible under any other circumstances. I have worked with people in the TMA who have given so much of themselves for a cause that is not at all understood or appreciated outside of our community. I have had experiences, such as camp, our symposia and Cody’s scuba adventure that would not have happened otherwise. And I have Kazu, my service dog, in my life. In spite of the struggles, I always see and feel the blessings. And in spite of the difficulties, I’ve never lost hope for a better tomorrow.
Pauline Siegel
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