Well hello there! Thanks for stopping by. I’m Jen, a 40-something mom, writer, and public relations professional in Seattle who has lived with a congenital foot deformity my whole life. Doctors’ advice and predictions have always been negative. As it gets harder and harder to walk despite surgeries and supports, I worried I was about to be wheelchair bound. This is my story of finding another solution.
I was born in the early 1970s in a rural Southwest town with severe bilateral clubfoot (congenital talipes equinovarus) and hip dysplasia. The doctors told my parents I’d never walk, and most likely would have other disabilities such as learning, hearing and growth limitations. Luckily, the doctors were wrong on all accounts.
I underwent casting and braces, even wearing braces to bed, the first several years of my life. My left hip corrected from all this, but my right did not. I underwent several hip surgeries as a child to build a false socket for my right hip. In my early 30s, the right hip was replaced and for the first time in my life I had full hip motion and no hip pain. Unfortunately, scaring damage from all the childhood surgeries was done and I have little strength in my right hip flexor and abductor. I also walk with a limp. My body developed around all this and with the hip pain gone, I’ve started to strengthen formerly underused muscles.
However, my feet have always hurt and I was forever falling due to bad balance. I would cry as a little girl if we had to walk too far. The mall at Christmas was torture. When I was 8, my doctor conducted a triple arthrodesis on both feet (fusing the three main joints in the hindfoot – the subtalar, calcaneocuboid and talonavicular joints). After six months of casts and doing a good percent of the 3rd grade from the living room couch, I learned how to walk again.
Just before I turned 18, my doctor gave it to me straight. He told me my feet had an expiration date, that eventually the arthritis and joint degeneration would make it too hard to walk. He suggested I choose a job where I wasn’t on my feet much as a way to extend the time before I’d stop walking.
I became a journalist, but sitting around watching the world go by was not my bag. I am an adventurer at heart. I learned to SCUBA dive, became a helicopter pilot, lived abroad in Scotland, met and interviewed movie stars, camped and hiked for two weeks each summer for several years in the Utah desert, met a man who loved me for who I was inside, and became a mom of two wonderful kids.
Throughout my 20s and 30s, my childhood surgeon’s prophesy slowly came to light. It hurt more and more to walk. My distances decreased each hiking trip. Trade shows for work became so painful I need a week off to recover at the end. Then the ability to walk on uneven ground came to a screeching halt. I began walking funny to limit pain which caused my back, neck and shoulders to ache while my hip muscles and core got weak. Wii Fit told me after a fitness and balance that I moved like a 73 year old, while debilitating cramps and pain in my feet lead to orthotics, prescription anti-inflammatory medication, cortisone shots and eventually surgery to remove bone spurs in each foot at the site of the joint fusions.
After the bone spur removal, my left foot collapsed completely, pulling tendons I’d never had the ability to move and put me in a boot for six months with tendonitis that wouldn’t go away. Housework became a painful chore, walking the dog an impossible task, and forget going to the zoo with the kids. With a boot and cane, I struggled through Disneyland, sometimes in tears. You get the picture – a painful existence.
Then my surgical and physical therapy team at Harborview Medical Center’s Foot & Ankle Clinic recommended the ExoSym. A cross between an orthotic and a prosthetic, designed by Prosthetist Ryan Blanck of the Hanger Clinic as an alternative to amputation for people with foot injuries or deformities, the device offloads the weight from the foot, transferring energy through its strut system, doing the work of standing, walking, running, climbing, what have you, for you.
At first I had to struggle with vanity. I felt getting these devices, one for each foot, would be the ultimate defeat. At 45, I’d have to wear braces for the rest of my life. These aren’t the kind of devices that can be hidden under jeans. They’d be out in the open, always and forever, proclaiming “Yes, keep staring, I’m deformed.” Of course, I’ve lived with a limp, under-developed calves, and deformed feet my whole life. I took some time to research these devices. It helped that I was in so much pain and desperate for a solution. I was done being tired, angry, short tempered and unable to do what I wanted. I decided to embrace the future.
With my questions in hand, pain killers on board, and cautious optimism, I’m headed in next week for the first of 10 appointments that will range from casting my feet and legs to prepare the mold to all the physical therapy to get started properly using my own two ExoSym devices. I’m going bionic!
Thank you for following along on the journey!