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Fight rare neuro-immune disorders. Together.
In the past five years, I’ve led a hectic life. I’ve worked for a large multinational company in positions that required frequent global travel. I have stood in the Amazon jungle, at the bottom of the still-under construction Panama Canal expansion, in the mines of South Africa, and in the streets of Moscow, London, Hiroshima, and Johannesburg. At home, I’ve been a husband to a wonderful woman, father of two amazing teenagers, officer in our local masonic lodge, and scoutmaster of my son’s scout troop.
But, on March 27, 2015, I suddenly found my hectic life slipping into overdrive. I was part of a major project at work, and had just returned from a trip to Asia, where I averaged about four hours of sleep a night for eight days. What started as a sore throat and a headache over a couple of days, quickly turned to burning feet and a non-functioning bladder. I rushed to the ER where I was given medication for the pain and a battery of tests. I was admitted and gradually became weaker until, at 3 am I woke up and found that I couldn’t move my legs. My first reaction was, “Wow! That’s some pretty powerful stuff they gave me.” It wasn’t the medication. It was Transverse Myelitis. I had gone from creating presentations at work on Friday morning to being paralyzed from the chest down on Sunday morning.
I was transferred to the ICU of a larger teaching hospital where I was fortunate that the neurologist on duty had experience with rare neurological conditions. After a few more tests to confirm the inflammation in my thoracic spinal cord, he started the IV steroids. Two days later, I could wiggle my big toes. A few days after that, if you watched very carefully, you could just see my legs move. Slowly, my leg function started to return. The pain never lessened. After two weeks in the hospital, I was moved to an inpatient rehabilitation hospital where I re-learned to walk. A month after coming into the rehab hospital in an ambulance, I left upright using a walker. I was determined to keep working through the pain to rebuild my muscles and walk.
I feel fortunate. Today, I walk with a cane for shorter distances, but tire easily. I use a wheelchair for longer distances. I’m back at work, albeit in a position that doesn’t require travel. My employer has been wonderful in making accommodations so that I can still be a contributing team member. I’ve recently retired as scoutmaster, but not until I saw an Eagle Scout ribbon pinned on the chest of my son. Medications help with the pain, but it never really goes away.
My proudest accomplishment since my transverse myelitis onset was the fulfillment of a promise that I had made to my kids. For years, I had been promising them a trip to Europe when my daughter graduated from eighth grade and my son graduated high school. This past summer, as my son pushed my wheelchair through the streets of London, I took a pill for the cobblestone-induced pain in my back and legs. I looked at my family and thought about all we’d been through with a hidden tear in the corner of my eye.
This may not be what we signed up for, but we have each other. And, we’ll get by.
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