Guest Blog by Jamie Spore, Mary Free Bed alumni
Hello. My name is Jamie Spore and I have been an L2-L3 paraplegic since birth. Thirty-three years ago, I was born with the spinal cord defect called spina bifida. Since then, a wheelchair has been my main mode of transportation.
I did use full leg braces and a walker for a few hours each day until I was 12 or 13 years old. That’s when I stopped using the braces and walker altogether because they were heavy and cumbersome. I continued to have weekly physical therapy sessions and attended the annual comprehensive spina bifida clinic at Mary Free Bed until I aged out it. After that, I did range of motion exercises and therapy on my legs, but I didn’t use them and I didn’t think much about it, because I can’t feel them.
I have always believed that life is too short for regrets. But if I have one regret, it was giving up the use of my legs.
Fast forward several years: In June of 2011, I acquired a very large, stage 3 pressure ulcer on my sacrum and ischium. After my aunt had been diagnosed with terminal cancer six months earlier, I decided to participate in a Relay for Life, which had me wheeling around the local high school track for 24 hours straight. This extended period of time in my wheelchair resulted in that large, deep, ugly pressure sore.
I spent the next 23-plus months on bed rest to heal that sore. Due to the extensive damage to my skin and underlying tissues, I have spent more than 31 months on bed rest over the past 3.5 years.
In the brief periods when I have not been …