The decision to go for the ExoSym devices has been a massive exercise in stepping out of my comfort zone. For more than 40 years I didn’t really talk about my birth defect. I just got on with life. “I have a birth defect in my hips and feet,” was all I typically said when people asked. Unlike many Clubbies, my condition wasn’t very hidden as I had a limp due to my hip. Most folks didn’t realize it was my feet too, to be honest.
I’d push myself to be as normal as possible and follow my dreams. I was never comfortable talking with anyone other than my doctors about my hips and feet. My mom didn’t really talk to me about it either unless I asked specific questions. In fact, I only learned this past year from her what my hips and feet looked like at birth. It had never occurred to ask before.
As if to illustrate this, my brother called me today to ask about the devices. I’d mentioned I was getting them to his physical therapist wife, asking if she’d heard of the ExoSym. She hadn’t and that was the end of the conversation. My brother called, saying he’d talked to his wife and wanted to know what I was getting and why. I told him they’d help alleviate the pain of my clubfoot condition. “What’s clubfoot?” he asked. That really drove it home for me. My own brother didn’t even know why my body was the way that it was. We’d never talked about it.
Other than getting comfortable talking about it, the other difficult aspect has been moving past the stigma that having to wear these devices on each foot means I’ve lost to the clubfoot. I’ve fought moving into braces for years. Anything but giving in to that. However, surgery didn’t help and more surgery was way too daunting.
What has really made this all so much easier is my tribe. I have a tribe I didn’t know existed. Well, I knew there were other Clubbies out there, but it never once occurred to me to look for them. When the Hanger Clinic suggested I join the ExoSym Facebook page, I did and made a few Clubbie friends there. But each one said the Clubfoot Facebook page was where many others that understood what I felt and experienced could be found. And find them I did. Talking to and seeing images from these other amazing people was life changing. I wasn’t alone in this anymore. Others felt the same and had similar experiences. I even had answers and insight for some, just as many had the same for me. And the support for each other is amazing.
That too was apparent today when I reached out to one of my new friends from the group who also has an ExoSym. I told her I’m still fighting the stigma in my head about braces. She stopped whatever it was she was doing and responded right away: “I too felt that the ExoSym would be a defeat after all I have tried. Once I put in on and saw how it decreased my pain to nothing and allowed me to walk on uneven ground so easily, the thought of seeing it as a defeat left my mind. I actually like wearing it and I see it as MY defeat over clubfoot,” she wrote. “The Exosym is unlike anything I’ve had before. After a few days of wearing it, it became very clear that this was not a brace at all but a very high tech prosthetic. I’m proud wearing it, as so many people ask me what it is because it just plain looks cool. It’s such a new cutting edge technology and I’m proud to be able to spread awareness.”
Thank you Becky, and all my tribe. May going way out of my zone to share this all for the world to see help you all right back.