During high school, my classmates were getting ready to take their driving tests and permits. I really wasn’t focused on that during high school and I knew I wasn’t ready. I have Recessive Dystrophic Epidermolysis Bullosa – Herlitz (RDEB-H) and there are a lot of things I wasn’t able to do. My special education teacher said encouragingly that I would be able to drive one of these days and have a car well-equipped with my needs.
It wasn’t until a couple of years later when I was working in a workshop for a non-profit agency for mentally and physically handicapped adults that I finally fulfilled this goal. Being able to drive was a requirement to work outside the workshop and have an opportunity for full time employment. Therefore, I took it on myself to ask a case worker to start the paperwork process to get my first step toward independence.
I knew my dad wouldn’t be able to teach me how to drive because I saw what my two older brothers and twin sister went through and I needed someone with a bit more patience than my dad! In the beginning, my parents had some doubts about whether or not I could drive. But I was determined to do this on my own.
I went to Crossroads Rehabilitation Center in Indianapolis, IN to take the evaluation test to see if I had the ability to drive and happily passed. My mom actually came home and said to my dad “Get your thinking cap on, Bruce is going to learn to drive.” On the first day of test driving, I drove around the Soldier’s and Sailor’s Monument in downtown Indianapolis. On the second day, I went on Interstate 465 and passed a semi over 70 mph. On July 7, 1989, after 10-12 driving lessons, I passed the driver and written tests and received my driver’s license! That was the real first start of gaining my independence.
Since then I had two hand surgeries on both hands which kept my fingers webbed together and released my wrists and thumbs. My thumbs are my fingers now and I am able to do my own dressing changes. I have been living independently in my Habitat home for over 10 years now. Nothing came easy. It took a long time to achieve some of my goals. But I tried my best, sometimes I succeeded and sometimes I failed too. My parents had never told me “No”. They let me figure out if I could do it for myself and never overprotected me when I was growing up. This has made me who I am today. Although I have this debilitating disease, I never let it deter some of my goals. Having EB makes you feel like you are limited to a certain life. But I try to not let it run my life. I live on my own terms.
(In Memory of Jeannette Gunn, my mom, who passed away unexpectedly November 13, 2009)
Bruce Gunn, 43, RDEB/HS, Tipton, Indiana 13 time skin cancer survivor