The doctor walked in, sat down, and laughed. “You’re not the kind of girl who wears a brace, are you?” I was in my second year of university, dressed in a torn pair of jeans, black leggings underneath, my mother’s vintage Roots boots, a large green parka, and to top it all off, a pearl necklace with a bow (in hindsight – good grief).
I burst into tears. Might as well have clutched my pearls. “Oh no,” he said. And passed the Kleenex.
Let’s rewind a little to when chronic pain and I were introduced, at age six.
After two years of having my complaint that “my knees hurt” written off as growing pains, an x-ray uncovered that my femurs (the bone between the hip and the knee) were abnormally thickened.
So began a cross-country tour of Canadian children’s hospitals. I was admitted for months at a time as many different doctors tried to solve my mysterious bone disease. At 8. At 11. At 14, when the still unknown illness instructed my body to reject food, almost killing me.
“Maybe you’ll grow out of it,” the doctors always said, shrugging. In the meantime, you’re a guinea pig. Let’s throw some drugs at it and see what sticks.
At 16, the Shriners sent me to a children’s hospital in the USA, to see a highly regarded orthopedic doctor.
In the end, I was diagnosed with an atypical version of Engelmann’s disease (aka, I don’t have the gene mutation for it), which is so rare that most doctors I see now haven’t heard of it, and there are only 200-300 reported cases in the world. I didn’t want to be a guinea pig. I didn’t want to be different. I just wanted to be a normal kid. A normal teenager.
But because I was in the hospital so much, my family, my friends, and the community knew me as a sick little girl. And when I was out and about, all anyone could talk to me about was how I was feeling. How are you doing? Are you feeling better? Are you okay? Everyone kept reminding me that I was sick.
I say this with an immense amount of gratitude for the love and support those people gave me (mountains of cards and gifts to get a little girl through long, tiring days of tests at the hospital), and my family (money, food, comfort). Amazing.
But there was more to me than sickness. And when I left home to go to university, it was the first time I had the chance to choose what story I told the world. I could be The Normal Girl At University, not The Sick Girl Who Almost Died At One Point. I still had to go for checkups regularly, but I could be discreet about it.
And that’s when – because I walked with a very slight limp – I was referred to a doctor who could fit me with a brace. Well, a brace was not going to fit my new story.
Hence the tears, in front of a very kind and understanding man, who told me not to worry, lots of girls with no medical issues walked the same way I did. So I left that office with my slight limp, my pain, and my fear of what other people thought of me still controlling the story I told the world.
Now, a decade later, I no longer wear pearl necklaces with bows (thank goodness). And I’ve learned that no one, really, is normal. That everyone, in their own way, has pain. And that everyone tries to control the story that they tell the world. It’s why Instagram is called a highlight reel, and why social media causes anxiety.
Still, you won’t see my pain in my Instagram feed. You’ll see the shenanigans of my beautiful dogs, not that they curl up beside me, close and warm, loving me through the sleepless nights.
You’ll see my boyfriend, and funny stories about our love, not the hugs while he tries valiantly to stay awake with me, even when he has to go to work the next day, or the patience and understanding he shows when I’m too drained to go out and be energetic and social.
You’ll see my adventures, exploring how beautiful and romantic everyday life can be, not the bottles and bottles of Tylenol.
The quiet story I’m choosing to tell on Instagram is of all the things you CAN do with bad legs and chronic pain. Maybe, at some point, and slowly, I’ll be more open about the pain on social media. I am now, but only to those who have earned that closeness. And I’m never going to complain.
Because, now, there are other questions that people ask when they see me. “What was living in the arctic like? You drove across the country by yourself? Where are you working? I can’t keep up with your life.”
They still ask me how I’m feeling. But I understand why and I answer with gratitude. They care about me.
How am I feeling? I have the kind of night, only about twice a year, where I am so overwhelmed with it that I don’t think I can continue. I am utterly exhausted with the pain. And I cry that I don’t know if I can do this. I am just too tired. But the morning comes. I get up, and I start again.
There is a medium place, a good place between life as a guinea pig, and life as a girl that’s too afraid to wear a brace. I’ve found that place. The pain does not define me, but it is part of me, and I would not be Rachel without it. I would have a different understanding of life.
Life does not have to be perfect to be wonderful.
Rachel
