Our Voice: Living with Complex Regional Pain Syndrome

When I was 6, I was convinced I would be the fastest runner in the neighborhood.  Spindly and scrappy, I sprinted up and down the alley, beating my brother and my best friend every time.

That fall, my lungs stopped working, and I nearly died from an asthma attack that was minutes away from causing respiratory arrest.

That didn’t stop me.  Asthma resources for kids are plentiful; with consultation from my pulmonologist, I took an inhaler and a nebulizer home for bad days.

At 7, I played soccer.  I wasn’t very good, but I was dedicated, passionate, and fearless.  One day, with a 100° fever, I begged my mother to take me to the game, where, despite being dehydrated and exhausted, I dove for ball after ball as goalie, oblivious to the cleats inches from my face.

When I was 9, I broke my arm in two places rollerblading down a hill.  When I was 10, I found out I was allergic to bees after getting stung four times by a wasp and being rushed to the hospital after I started going into anaphylactic shock.  None of it dampened my spirit.

When I was 11, I fell.

It was nothing.  I slipped on some water on the bathroom floor.  I can’t really remember what happened, but I thought I landed on my chest.

Compared to some of the things I’d done to myself, a fall in the bathroom shouldn’t have meant anything.  I couldn’t see what had happened.  All I knew was that my back hurt so badly I couldn’t breathe.

Despite test after test, no one knew what had happened or why I was in pain. It took more than a year for the doctors to find the two stress fractures on my vertebrae.  By then, the damage was done, and I had developed a rare neurological condition called Complex Regional Pain Syndrome.

We tried everything, but nine years ago, treatment options were few.  My parents had to decide between putting me in a chemical coma to see if it would reset my damaged nervous system and subjecting me to weeks of grueling physical therapy in a hope that it would retrain my nerves.

Treatment wasn’t the hard part.  The hard part was getting my childhood cut off by constant pain.  I was exhausted, but I couldn’t sleep. I couldn’t focus on anything. I couldn’t run or do any of the physical activities I used to enjoy.

When you’re a kid, being sick is supposed to be a temporary thing.  You get wrapped up in blankets and fed soup and Gatorade, watching cartoons until the fever passes.  No one tells you about the kids that get sick and never get better.

You’re supposed to be thankful that you’re not terminal, but some days you wish you were.  No one teaches you how to lose everything you loved about your life and keep living anyway.

After a while, people get sick of sympathy.  When it’s been a year, two years, more, and you’re not dead but you’re not better, people stop sending cards and balloons and prayers.

As an adult, you can conceptualize what it means for people to forget about you and your problems – they have their own lives – but when you’re young, it feels personal.

The stress of being sick and the damage to my nervous system caused my limbic response to activate constantly, leaving me anxious and depressed.  I was bitter, angry at God or the universe for letting this happen to me, an active little girl with no prior history of fragility.  I had almost no friends throughout my teenage years, and my personality changed from energetic to dull and sullen.

It’s hard to recover when an illness destroys your idea of yourself before you’re old enough to really remember what it was like before.

I’m 20 now, and I can’t remember what it feels like to be pain-free.  It’s a loss I mourn regularly – the loss of a childhood, of the person I was before I fell.  Today, I have to structure everything around my pain.  I have no idea who I’d be if I never broke my spine as a girl.

What I realized, after years of battling with anger and depression related to my illness, is that no matter what my condition takes away from me, my spirit can continue on.

The only way for me to lose everything to this battle would be to admit defeat.  The value of my life, or any other sick child’s life, doesn’t come in what we can or can’t do – it’s simply what we are.

As long as I’m alive, I’ve beaten CRPS for another day.  It doesn’t matter if I spend the whole day in bed, unable to move, or if I run a 5k: my life has value because I’m living it.

Although it might feel like it, chronic illness doesn’t have to be the end for kids and young adults like me.

Support, both for our physical and mental health, can make the biggest difference.  I just needed to learn that surviving is enough.