Growing up with arthrogryposis: how to win a battle against your own body and conquer bone-shattering, isolating pain

Growing up with arthrogryposis: An Introduction.*

I can truly say that there is only one space where I felt entirely safe growing up: Shriners Hospital for Children Northern California. Even at home, I lived in fear — if someone, anyone, decided to break in, I’d be unable to run away. If there were a fire, I’d be unable to escape.

In school or at the mall, the scenario felt quite similar, if not worse. The motion of my limping, contorted body attempting to propel my being forward in space provoked disgusted, confused, and prolonged stares from nearly everyone I passed by.

Why couldn’t I straighten my legs? Why were my feet so crooked and deformed? Why couldn’t I just move fluidly? Why did I walk — okay, fine, hobble around — in a weird, contorted, different way. What. Is. Wrong. With. Me.

At night, before I fell asleep, I used to dream of what it’d be like to walk upright — to walk into a mall, to walk into school, or even to walk across my house pain free.

In the fourth grade, after another (failed) surgery that I had hoped, wished, and prayed would allow me to be able to walk upright for the first time in my life, I had to stay overnight in the hospital by myself.

As it turns out, staying alone in a hospital as a child is a truly gripping experience — even in the friendliest of children's hospitals. It’s the ultimate in being scared, fearful, uncertain and entirely alone.

And yet, you push through it. There is simply no other option. Life is waiting for you — you can see it and feel it (as it continues on without you) right outside the hospital window.

Three days of morphine injections every two to four hours, heart monitors beeping incessantly all night, and the constant hum of the breathing machine keeping a burn patient who I shared the hospital room with alive, and I proudly proclaimed to my Aunt Sheri during a routine morning hospital visit: “I’m done being a kid with this.” Instead of an encouraging smile, I looked up at her only to see her break out in tears. At least, for once, I wasn’t the one crying in pain.

As a 10 year old living with arthrogryposis, I decided to stop being a ‘helpless’ child. I decided to stop putting off surgeries and instead to start trying every option possible.

I no longer wanted to be a child because I no longer felt like a child. I no longer wanted to be treated or perceived as ‘helpless’ when I was pushing each and every day — and every year on the operating table — to make it on my own. This was not going to continue to be for nothing.

With every fiber of my being, I knew I would make it — out of the hospital, out of the leg cast, and out of my diseased, deformed, embrittled body.

Through each minute of those never-ending, lonely, sleepless nights in a hospital bed, I independently pushed through the pain in the hopes that my body could push through its abnormalities.

I decided to make it through arthrogryposis on my own, and no matter what, I knew that giving up on life — a life of walking — a life of physical freedom was not an option.

The key to winning the battle against arthrogryposis is to fight. Fight with every last cell of your body to be strong.

What I didn’t realize, however, is that you don’t have to be alone in this fight.

Arthrogryposis may affect each person born with it to a different degree, but it’s important to remember that we all can relate to a single thing: the experience of being in pain.

If you have arthrogryposis, I know you know pain — pain so strong that you can’t read, watch TV or even hold a conversation. I know you know pain that hijacks your brain, no matter how hard you try to keep it separate from your body.

I am a strong believer that physical pain — joint, muscular, bone — can be shut out of your mind. After all, it’s a singular, isolated problem, happening only to YOUR physical body.

Yet pain and, more importantly, coping with arthrogryposis’ incessant, jaw-clenching, physical pain doesn’t need to be so hard. Together, we can figure this out.

I may have been born unable to walk in a ‘normal’ way, but I am highly capable of not letting arthrogryposis control my body. Because I was born with arthrogryposis, I became an expert at telling my body not to be in pain.

I’ve tried it all: comparing myself to people who died on the battlefield in the American Civil War from botched amputations (like, really, just think about that for a moment — especially if you’ve ever had a bone-related surgery), telling myself that physical pain is only temporary and that my brain needs me to keep going on in life, and, of course, literally yelling out that I need to ‘suck it up’ already and stop being a baby.

If you’re in pain right now, you’re not alone. Your body may be a lone solider in the fight to walk or the fight to simply not be in pain, but you’re not alone in what you’re feeling. Others have come before you, others will come after you, and, most importantly, others (although you probably haven’t met them) are experiencing the same pain from arthrogryposis right now.

Only you (okay, and maybe some pain meds) can keep planning surgeries, keep going to physical therapy multiple times a week, and keep fighting to reach a state of not being in pain.

Since, unfortunately, you have to be in more pain in order to reach a state of not being in pain, it’s time to start documenting the best strategies, the best mind tricks, and the best distractions. Can anyone say confetti parties on the car ride home after your next surgery so you don’t realize the bumps in the road causing shooting pain in your recent incisions?

Every other child sitting next to you in that waiting room at Shriners Hospital, awkwardly avoiding eye contact with you or perhaps giving you a fake smile, can understand or relate to what you’re feeling physically (and, likely, emotionally).

At the age of 15, I was blessed with the miraculous gift of a ‘successful’ surgery — the successful surgery. At the age of 15, for the first time in my life, I was able to stand up straight. Shortly thereafter, I was able to walk.

The war of fighting a congenital disease is never over, but the battles can become more spread out — and, most importantly, more strategically fought.

For now, the trapped, uncomfortable nights in a hospital bed are gone. And to celebrate the ten year anniversary of that, I will be writing down all of the advice that I can pass on about living with — and winning the battle against — arthrogryposis. Be on the look out for one article a month leading up to the date of the surgery that finally let me walk: August 1 (2007).

Here’s to fighting it out against our bodies and our physical pain until we’re standing pain-free, proud, and defiant.

If you know anyone with arthrogryposis, please share this article with them. Also, if you enjoyed the read, please give the article a ‘heart’ so others who could find it helpful will see it as well.

*This is the introduction to a series of upcoming articles intended for children, teens or adults living with arthrogryposis. Arthrogryposis is a congenital, genetic disease that impacts each person born with it differently. The only commonality is often a lack of physical mobility (of varying degree) caused by excess fibers in some or all joints and the pain that results from such fixation.