To be honest, I don't remember all that much about having GBS. I was barely two years old when I was diagnosed. What I know about the acute phase has been pieced together from my parents retelling of the trauma we all went through and some random memories. Most of all, I want people to know that GBS made me who I am. I don't have counterfactual evidence of who I might have been without it, and sometimes I sure as heck wish it hadn't been me. But it is. You choose how you live.
I was diagnosed in May 1982 at about 24 months old. I was lucky that my pediatrician had seen a case in his residency and rushed me to the hospital in his personal car as soon as a I dropped to the floor in his office. I was in ICU, on a ventilator, at Children's Hospital Los Angeles for a month. In a bedside manner only a neurologist could have, my parents were told that if I didn't move my feet in the next week, I would neverwalk again. I did move my feet again. I stayed in the hospital for three more months after being able to breathe on my own. I remember the tilt board, which I hated. I remember being bribed with Fruit Loops to do my therapy. But that is the extent of my hospital memories.
As I grew up, it was apparent that I was going to have significant issues. I had severe foot drop. I spent a lot of time in casts trying to help my bones grow and strengthen. I wore AFOs. And not the cute ones they have now. Just recently I admired a child's super hero themed AFOs from afar.
My first surgery was just before I turned 6 years old. They tried soft tissue surgeries first. I am so grateful I went to a school where there were many many students with disabilities, so I never felt out of place - whether I was in a wheelchair or just in AFOs. In eigth grade, my foot deformity was so severe that we opted to have my right left ankle fused. It was by far the best decision my parents made. When I was 21 I had the right ankle fused. After a series of nonunion and other issues both ankles are now finally fused. Sixteen surgeries over the past 35 years have given me the stability to appear as if I am not disabled. I still suffer from significant neurological pain, my fatigues is catching up to me more and more as a i grow older and my balance is...well I'm always tripping on something.
I didn't realize that I had a disability until I started competing for the U.S. Paralympic team in cycling. Yes, cycling. I have poor balance and weak legs. It only seems reasonable that would be the sport I chose. After seeing an international doctor who ranked me as nearly the most disabled category of racers (my main competitor only raced with one leg, no prosethtic), I realized that I do face significant challenges. But I am grateful that this is the only life I know. I was on the varsity swim team in high school. I have raced bicycles for the United States. I graduated from the University of Notre Dame (snow, ice, AFOs and balance issues go well together!). I have two masters degrees, I was a teacher for six years and I have a job that I love in education. I have raised 13 guide dog puppies for visually impaired people. I have a husband who loves me and who I would have never found if it wasn't for my disability.
Every day I wake up knowing that walking probably won't be the only way I get around in my life. But for those of you who are struggling with GBS now or even if you had it a long time ago, take that perseverance and faith in yourself - use it to do the things that others would never dream of doing. If your child had GBS, please raise them to believe that they are strong a and brave because of their GBS, not in spite of it.
