This Is Why I Thrive
Did you know that every day 507 Americans join the limb loss and limb difference community. I didn’t either. I never thought I would be one of them. Fourteen years ago, I was diagnosed with a rare neurological collapse of the bones in my feet called Charcot foot. It’s rare to be diagnosed with it and not to be diabetic, but I guess it’s just my bad luck. I am a unicorn. Extremely rare. The condition leads to open wounds caused by the splintered bones which are at high risk of infection and can rapidly go to the bones. This was the cause of my right below-knee amputation on Jan. 15, 2021. I wasn’t depressed or self-conscious about my amputation. It saved my life and was the way back to reclaiming an active life. I didn’t hide it; rather, I owned it!
For many months I didn’t know or see anyone else who was an amputee, and it was hard despite my family and friends trying to be empathetic and understanding. After many months, I joined an amputee support group. Finally, other unicorns! People who understood the day-to-day challenges and triumphs. We share our feelings, our dark days, struggles, and successes. We cry together, and we lift each other up. We worry when someone doesn’t show up for meetings. We understand what no one else can. They are my tribe.
My priority was to get a prosthesis that worked for me and fit. I saw the prosthetist I was referred to by my doctor. When I got my first leg I was so excited, but my leg rapidly shrank (which is normal over the first several years). My prosthetist was frustrated by my calls about poor fit, and often I had to wait weeks for an adjustment. I was fitted for a new socket, and more than six weeks later, when it was finally ready, my leg had shrunk even more and it no longer fit. When I expressed frustration at the situation, he said, “maybe you need grief counseling” and “maybe you should find a new prosthetist.” I knew that the answer to that was “boy, do I ever.” I had to do my homework and reach out to find someone who was invested in helping me find a prosthetic leg that fit. (Thanks, Therese!) My new prosthetist is a five-hour drive to the latest technology and a truly caring heart, but it is worth every mile. Who would have thought?
I know many other amputees with similar problems.
A friend from my support group has a leg she can’t wear, which her insurance company paid for in December, and a prosthetist who isn’t all that motivated to make it right. But she is constrained by insurance coverage. Others are held back by transportation or finances or just the knowledge you have to be your own advocate and you don’t have to accept less than good care. I am one of the lucky ones. Add in housing accessibility, workplace and public accessibility, lack of insurance or poor insurance, and driving questions. There are social, educational, and financial barriers and many other problems we face every day that are too numerous to list here.
It would be easy to be discouraged, to give up. But we unicorns are stronger than these situations and we have each other to lean on. We have all the caregivers and loved ones and friends who walk with us on our new path. There are strangers who ask questions out of concern and true curiosity, and open doors and offer help. We unicorns may be few and far between, but we are strong, motivated, empathetic, and truly unique. And our numbers grow each day. I am grateful for my amputation. Last year I even became a Certified Peer Visitor at the National Conference.