Leg or Wheelchair? You Can Only Choose One!
Thank you for creating such an amazing movement to share our struggles. Nine years ago, I had my right leg amputated to save my life. I have a rare type of sarcoma called aggressive fibromatosis, or desmoid tumors. The first few years of being an amputee were challenging, but I was able to begin running again as an above-knee amputee and actually completed several 5Ks!
Four years ago, my cancer returned in my hip and pelvis on my amputated side. I have been fighting hard to stay mobile and in my prosthesis. As time has progressed, my body has grown weary and it is time for a shift in mobility devices. I am currently using a wheelchair, but am greatly restricted. Insurance will only pay for one mobility device – a leg or a wheelchair – not both. In their eyes, one device is mutually exclusive of the other – but what do you do at night when you take your leg off? Or if you are injured and need to rest? You go to Goodwill and get a $5 transport chair – if you are lucky enough to find one! This ill-equipped chair is not meant for a vibrant 44-year-old woman who still has life to live and desires independence. What I really need is a custom performance wheelchair – one that I can lift in and out of my vehicle and use to self-propel around the neighborhood so I can join my husband and our dog on walks.
In addition to the lack of support from the insurance companies for adequate mobility devices, there is no assistance to remodel your home or vehicle to make it accessible. Now that I am moving into a chair full-time, it is imperative that our home match our needs. Between the home modifications and custom wheelchair, we have determined that we will need $75,000. Most people who are disabled are not working – and the majority of our family income is used to keep me alive as I journey through cancer.
It is difficult to reconcile how hard we work to stay alive and desire to experience the simple joys, like fresh air and independence. Yet, we cannot access these basic things due to restricted support. Without the financial support needed, my home and life will continue to be limiting while I fight valiantly each day for my freedom and independence. I will not give up and I am so honored to illuminate this incredible obstacle that physically challenged folks must overcome. Thank you for listening!