A couple months shy of my fourth birthday, I came down with chicken pox.
Nothing major – just your run-of-the-mill itching and scratching and some lengthy oatmeal baths…
Until it wasn’t.
Until the red welts gave way to a rare disease that turned my body against itself, from the outside in.
Guillain-Barre Syndrome made headlines two years ago when H1N1 swept the nation. Newscasters (and the CDC) reported on a “deadly nerve disease, ” a “paralyzing neuromuscular condition” connected to the 1976 swine flu vaccination, and warned Americans of the possibility of a widespread recurrence.
My case wasn’t so flashy.
It started with tipsiness. My parents say that I drunkenly stumbled around the house as the myelin sheath around my nerves began to eat away at itself. The auto-immune response to chicken pox was sort of like acute-onset temporary multiple sclerosis.
My hands and feet tingled and my legs buckled. Within a week, I was admitted to the ICU at Children’s Hospital of Philadelphia.
I spent the two weeks before and two weeks after my fourth birthday at CHOP, with doctors looking on as the paralyzing illness inched closer and closer to my lungs and heart.
For adults with Guillain-Barre, treatment includes plasmapheresis, where they essentially take the blood out of your body, remove the infected antibodies, and filter it back in. But in the mid -1980s this course wasn’t yet approved for children, so there was little more doctors could do than watch and monitor.
My aunt came to the hospital and painted my fingernails. My dad sat next to my bed and tapped my toes with ice cubes, willing a reaction. My friends came armed with Rainbow Bright dolls and My Little Ponies.
And then, just as quickly as the disease began, it started to retreat. My body started to repair itself, this time from the inside out.
It took several months. I needed to learn to use my muscles again.
I had a nursery school teacher who was like a second mom. When my four-year-old self refused to cooperate with the occupational and physical therapists, Bonnie took it upon herself to guide my recovery.
She taught me how to grip a fork, to bounce a ball, to crawl up the stairs. She taught me how to walk again.
Gradually, I returned to my usual boundless energy. And now, almost 26 years later, I have no real residual affects (save for that pesky little rubber hammer at the doctor’s office, which can’t seem to garner a reflex response when tapped on my knees).
And it’s not something I think about much.
Sure, it comes up every now and then…
When I’m looking for a killer topic for a college admissions essay (comparing learning to walk again with a Thoreau-ian critique of societal complacency – yep, I was a bit of a nerd even then)…
When newscasters blitz the public with horror stories of ‘deadly nerve diseases’…
When I’m wholly sleep-deprived at hour 50 of a 72-hour race and realize that 25 years earlier, almost to the day, I was having a belated 4th birthday party and barely able to lift forkfuls of cake into my mouth…
Or when, like last night, I get off the bike after a 100 km ride and feel every muscle in my legs tighten as I gingerly walk down the stairs.
But I’ve never defined myself by Guillain-Barre, never thought about it as a before-and-after.
I’m sure it’s there, though, lurking behind the competitive swimming and the marathons and the adventure races, lingering in the decisions to push myself beyond my comfort zone, to see what my body can do.