Have Dental Floss, Will Travel

Mapping the world, one waxy strand at a time…

Learning to Walk Again

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.

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14 responses to “Learning to Walk Again

  1. Kari w/ Jogging with Fiction February 16, 2011 at 8:20 am

    Yikes that sounds terrifying and incredible! Thank you for sharing.

  2. middleagedrunner February 16, 2011 at 8:35 am

    I used to work with a lady who had Guillain-Barre. It seemed to rear its ugly head when her immune system was down (for example- she caught a flu bug which seemed minor enough, then 3 days later spent 2 weeks in the ICU with what was refered to as a “relapse.”) Have you had any trouble with that as an adult?
    I think that anything that causes ones body to attack itself if incredibly terrifying..
    This was a very interesting blog post. Thanks for sharing!

    • Abby February 16, 2011 at 8:43 am

      It’s funny, I’ve never had reactions like that, but I tend to have a somewhat weaker immune system generally, and pick up little things like colds and bronchial infections more frequently than I always feel like I should. Could be related.

  3. denise February 16, 2011 at 9:41 am

    wow, that’s scary!! you were a little fighter, even back then!! you never lost that determination.

  4. Julie February 16, 2011 at 9:56 am

    I cannot even begin to imagine the fear and pain your parents went through during that time. WOW! As a mom, stories like this scare. me. to. death.
    I’m so glad it worked out how it did!

  5. Mallory February 16, 2011 at 10:38 am

    What an amazing story! The human body is amazing and it sounds like you have come a long way since having to relearn everything! What a scary thing to have to go through!

  6. Kelsey February 16, 2011 at 1:27 pm

    That’s CRAZY! I bet your parents were scared out of their mind! I’ve seen a few cases of this, and always wonder what it’s like to come out of it!!! Never seen it in a kid though, scary stuff!!

    PS I LOVE your blog!!!

  7. Kim (Book Worm Runs) February 16, 2011 at 7:30 pm

    Wow!! What an amazing story. I have never heard of this disease but it just shows you have always been a fighter 🙂 So glad you were able to recover and go on to do these crazy adventure races!! 😉

  8. amanda@runninghood February 17, 2011 at 11:07 am

    wow, what a great story. And look at you…a fighter! Thanks for sharing!

  9. Julie (A Case of the Runs) February 17, 2011 at 5:21 pm

    Wow, so sorry to read this happened to you (however long ago)! I’ve heard of that condition, and boy does it sound scary. Glad it was early enough for you to learn again quickly, though most people can’t remember learning to walk, you can! I got the pox when I was a baby from my sisters, so I don’t know what it was like or if that increases my odds for shingles or something… I better keep my stress down!

    • Abby February 17, 2011 at 7:59 pm

      I’m not positive on this, but I think you’re more at risk for shingles if you get chicken pox later in life… but really, what do I know? I teach history!

  10. Angela Kidd February 18, 2011 at 12:12 am

    No wonder you are so tough. And how horrifying for your parents. I can’t even imagine how it must have killed them to see you in that hospital.

  11. Brie February 18, 2011 at 1:45 am

    Thanks for sharing such an amazing story that keeps you present and inspires you to hang on when times are tough. I can relate to that and admire that you shared this story with others. I also had to learn to walk after I turned 4 because of being in a wheelchair for a few years before that and it really helps me out when I am pain now.

  12. Christina February 20, 2011 at 7:12 am

    Wow. That is a really good story. It’s nice to see you didn’t use that to prevent you from doing stuff your whole life.

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