Seattle, July 2016: I was born in 1971 with severe clubfoot and hip dysplasia as a result of a birth defect in my mom’s uterus. My feet were practically folded in half, twisted toward each other and up, and my legs were twisted upward toward my body. I spent the first several years in casts, splints and special shoes to help straighten my feet and legs. I didn’t have any tendon lengthening surgeries.
One of the casts was designed to correct the hip dysplasia, which it did on the left side. The right side unfortunately did not correct and I had several surgeries to continue rebuilding a false hip socket as I grew, then eventually had that hip replaced when I was 30. In the end, my right leg is 3/8ths of an inch shorter than my left, despite a surgery to remove the growth plate in one side of my left femur. I also have a damaged hip flexor from all the surgeries, so have limited use of it.
My legs on a whole are fairly strong from the knees up. I do have under-developed calves, can’t bend my left knee when on my stomach (muscle attachment is misplaced to allow me to pull my lower leg up), and I have about 140 degrees of flexibility in my knees so I can’t sit on my heals. My knees have never bent that much.
My feet were manipulated over the early years to the point where I could walk, but as the years progressed, the bones wanted to fold back and I was walking on the balls of my feet. I was forever falling down and had virtually no balance.
To this day rollerblading, roller skating and ice skating are very hard as I have little ability to move my feet or ankles to maintain balance.
When I was 9, I had a triple arthrodesis in both feet – fusing the three main joints in the hindfoot – the subtalar, calcaneocuboid and talonavicular joints – at Children’s Hospital in Seattle (then called Children’s Orthopedic Hospital and Medical Center). Back then, this was done by scraping away the tissue between the joints then pinning the bones together as the bones fused. I had pins sticking out of each foot and was in casts for about five months, unable to put weight on my feet. Once the fusion was complete, the pins were pulled out (I remember that pain like it was yesterday) so there is no hardware my feet. It took a bit to learn to walk again.
I’ve led a fairly active life – luckily not needing walking assistance much beyond a walking stick when hiking or a wheelchair. It could be that the pain in my right hip limited how much I walked, thus preserving my feet. Yet, once the hip was replaced and that pain gone, I became more active. It wasn’t long before my feet started going from a regular dull 4/10 pain to 11/10. I began seeing foot surgeons again. It seemed bone growth from the triple had developed on the top of my foot, pinching nerves against my tibia. After three medical opinions I opted for bone spur removal surgery in 2015. While the impingement pain is gone, arthritis and tight tendons have flared up. I’ve been in a surgical boot on my left foot (at one time my better foot) from November 2015 until July 2016.
The doctors have told me for years that my feet would eventually wear out. I’m an adventurer stuck in a limited body and have adapted thus far, but the current (as of July 2016) pain has become too much to bear. My distance has decreased to about 1/2 mile at a time. My fitness app tells me I average 5,000 to 7,000 steps a day. I’m in pain all the time and can’t walk comfortably without the surgical boot. I have trouble keeping up with my elementary age kids, and a day of housework often leaves me needing to sit still for most of the day. I don’t dare go for strolls. Walking on uneven ground is excruciating (making being the Girl Scout leader a real chore as I take the girl camping and hiking – often relying on other volunteers for the big stuff). I know I need to do something to get my quality of life back or the pain and the depression it creates, including the depression of seeing my abilities deteriorate so quickly, will turn me into a grumpy old lady before my time.
In May 2016, my doctors recommended the Hangar Clinic’s ExoSym devices as a way to get some of my mobility and quality of life back. So now I’m in the process of receiving and learning how to use these devices. For so long I was tremendously against any kind of brace as, for whatever vain reason, I felt it meant I surrendered to my condition. It just had to get bad enough that I no longer cared what I looked like or what people thought. I wanted my life back.
What has made this so much easier is finding my tribe through Facebook pages for people with club feet and people with the ExoSym device. Through seeing others’ triumphs, receiving their encouragement, and even reading about fashion tips with the new devices, something shifted in me and suddenly I’m so very excited to wear these devices and am so hopeful life will be better in the end.