April 24th someone I considered a mentor passed away. His name was Tim Brown and is the main reason accepting my disability was easier than most. For those of you that don’t know, Tim and I were both diagnosed with Duchenne muscular dystrophy. In the medical books it would be described as a pediatric condition described as a progressive weakening of skeletal muscle. While with medical intervention we live longer than expected, it still takes us too early and too young. It’s a grim prospect especially to a single mother to hear that your child has been diagnosed with a condition that could possibly kill them before the age of 20. We were told by a local muscular dystrophy group that there was a man in a wheelchair that I needed to talk to. I was only seven years old at the time and already having difficulty walking and keeping up with my peers physically. You can imagine how frustrating that can be for a child especially not knowing why I was so different. I don’t think I can begin to comprehend the thoughts going through my mother’s head. My doctor, while very understanding, couldn’t really provide comfort for having a disability. I needed acceptance and understanding.
Where do you go after being diagnosed with something so seemingly terrible? Fortunately, I got to meet Tim. Having a role model is one thing but having a strong role model with a disability can change the world for a young disabled child. It seems like only yesterday I met him in his 20s, married, two children, and a job. Just that sentence alone makes him a good role model. The most interesting thing about Tim was that he never complained about his disability. He never let it define who he was. At the end of the day you realize that disability doesn’t hold us back, but rather limitations society thinks they can place on us. He taught me that I could make a life of my own choosing. My mom saw my potential and he told her to be open and honest with me about my health. Muscular dystrophy gets progressively worse over time. Every time I lost the ability to physically do something like walking, standing, dressing, eating, etc. he would always be there to guide me through it. Most able bodied people, albeit good intentioned, only know how to show pity. Tim was different. He knew it wasn’t a “problem” that needed fixing but rather a thing that required a different way of thinking. My main regret is not connecting with him more in adulthood. He changed my life and I feel I didn’t do nearly as much as I should to repay for that.
I cannot begin to imagine the pain his family is facing. His family meant the world to him and he meant the world to them. Time is the most precious gift we have. True love is hard to find yet Tim and his wife certainly found it. RIP Tim. God gained an Angel this week. Thank you for changing my life.