In December 1996, during one of our many cross-country travels, I suddenly lost the ability to stand/walk while waiting for a flight at the airport in Minneapolis. It was even more scary than the time I pretended to step off the edge of the Grand Canyon as a joke to frighten Michael. My goal was to get to our first destination – Michael’s goal was to get me to the nearest ER. Healthy people don’t just collapse and lose use of their legs! I wanted somebody to put a band aid on the problem, give me some pain pills, so I could get back to the airport and continue our vacation. Since I had been involved in a rollover auto accident two weeks prior (I did a complete somersault in the middle of the desert, with Michael following me right behind; scarier for him than it was for me), ER docs immediately began testing for injuries, but determined that I had no physical injuries, rather that there was something neurological going on. So, I was sent by ambulance to the University Trauma Center. While the doctors were administering tests to determine what was going on with me, the chief neurologist ordered high dose IV steroids to begin immediately for the next 5 days to reduce possible swelling in my spinal cord. The first day after my IV drip, I was able to just wiggle my right big toe, with nine doctors standing around my bed, observing and applauding. I was told I had something called Transverse Myelitis. Actually, I was not told this – our three daughters, two of whom are nurses, had flown in from Detroit and while watching me during physical therapy, asked the therapist what was wrong with me. The PT read the diagnosis from my chart.
The lack of bowel/bladder function was not discovered until days later, when the question of “when did you last pee” was finally asked. I was catheterized and filled up a large pitcher!
Insurance issues forced the hospital to discharge me early to return to California for physical therapy and further care by “my” neurologist. When asked for the name of my neurologist in California, I had no name to give him. I called a friend in California and got the name of a neurosurgeon. The neurosurgeon promised to see me within 24 hours of landing at the airport. Of course, it took two weeks, another spinal tap and more tests for him to say “I am not a neurologist, I am a neurosurgeon, so I am going to send you to a neurologist”. By the time I saw a neurologist two weeks later, he said my insurance would never approve PT for me, since I was now able to walk 10 feet with the aid of a walker. Of course, these doctors are very knowledgeable, so who am I to question their competence? Physical therapy was then self-administered, using my very heavy Jeep clutch and rubber bands for resistance. When attempting to sign up for disability, my all-knowing neurologist advised me that I would never qualify, because if I could sit at a desk for more than 2 hours, then I am still able to work. Of course, he did not take into consideration that I traveled quite a bit, climbed ladders, wore a hard hat on construction sites, and did not sit in an office. And of course, he did write on the report requested by Disability that I was able to walk and had a “complete” recovery. I was told by the doctors in the hospital that this was just a little ‘hiccup’ and in 3 months I will never know I had lost the use of my legs.
In my quest for more information about this rare disorder, I typed the words “transverse myelitis” into my new computer and ultimately met Jim Lubin and the transverse myelitis internet club. I then flew to Seattle to meet Deanne Gilmur, and eventually that year I met Sandy and Pauline, which then led to my appointment as Secretary of The Siegel Rare Neuroimmune Association in 1997.