Diagnosis: Transverse Myelitis
California, United States
Almost 23 years ago today, I had my first attack of transverse myelitis. The medical experts didn’t know much then and there was certainly not a SRNA to learn from. My wife and I were pretty much in the dark, save the guidance we received from my father-in-law, who was a physician. That compounded the problem because speed is of the essence and it was two weeks before Stanford University found a path for me. By then I was a quadriplegic and literally fighting for my life. You know you are in trouble when the doctor comes in and advises your wife to “prepare the children, their father may not make it through the night” and you as the patient begin thinking that maybe not living would be a good option. But fortunately, reality set in and I developed a strength that would carry me to become who I am today. Today I am 62 and a survivor of battles brutally fought.
The first crisis was in December of 1992. I was 39, married to my best friend, Elise; we had three girls aged 4, 7 and 12, and I was on a successful path. The future looked very bright, but we should not assume all brightness for the future because as Forrest Gump said, “life is like a box of chocolates, you never know what you are going to get.” This is the first time that I have written about this, but let me tell you what I “got.” I came down with the stomach flu, which is very rare for me. Within a few days, I was suddenly overwhelmed by a dysesthetic pain across my entire chest and was rushed to the hospital. The hospital took several tests, but concluded that it must be a chest virus and sent me home; twice. Within a couple of hours, we rushed back to the hospital because I was in distraught pain, wobbly, and my bladder had failed. I was then finally admitted to the ICU and by morning I was completely paralyzed. The damage was scattered beginning at C2 and all the way down. The MRI showed severe inflammation across the entire cord. Two days later, I was transferred to Stanford University Hospital in critical condition.
Today, when I explain to people who question why I use a cane, wobble, have a paralyzed left hand, and have to self-catheterize, I give them the clinical and PC-friendly response: “in 1992 I had a demyelinating disease. I was in the hospital for five months and a wheelchair for a year but broadly recovered.” It’s also not true. You move on, but you never really recover. You are forever changed. I remember most vividly Elise coming in to talk to me a few days after the doctor told her to prepare the children. With tears in her eyes, she told me that the doctors think I will make it but will be in a nursing home. I responded, “I will dance at Shoshana’s bat mitzvah.” Her Bat Mitzvah was 11 months later and with Canadian crutches and a leg brace, I did just that. But what never leaves me is the joy of taking what is given to you and holding it sacred. My lesson was that we are the sum-total of our courage. That the sanctity of life and the gift we have been given must be paid forward. I have had a truly remarkable life. As a disabled person, I have been CFO of several companies, have taken a few public and have served on eight public company boards as the audit chairman. My life has been full and wonderful. I was hit a second time with TM in 2009 and was significantly weakened, but I’m still standing.
Full article originally published on page 22 in 2016 Winter SRNA newsletter
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