The story of Megan
I was born missing my tibia in my right leg, so my leg was amputated when I was 16 months old. By the age of 2 I had my first prosthetic leg, and I began walking and learning to do all I wanted to do!
I never really noticed the difference (and neither did my classmates) until middle school. I lucked out and I was never really bullied about my leg, but I was uncomfortable. People staring at me, younger children asking their parents what was wrong with me, parents shushing their children and avoiding the issue… those things all made me uncomfortable. They would continue to do so until halfway through college.
In college I made a couple of decisions. The first was that I wanted to know about my congenital skeletal abnormality. I knew it was called tibial hemimelia, but that’s all I knew. I quickly learned all I could (partially because there really isn’t a ton of information out there, and most of what is out there I really didn’t understand). What I did understand was that it was definitely hereditary, and they didn’t really have answers as to the cause. This research I did had a fantastic outcome, though, as I was able to connect with the parents of lots of young children with TH (however I have yet to connect with someone my own age)!
The second decision I made in college was to become an elementary school teacher. Once I started student teaching, my discomfort about my prosthetic leg disappeared. I no longer wanted to cover it up with long pants and skin-tone covers. I embraced the “robot” look. Elementary students constantly ask me about my robot leg. I overhear the younger kids telling their friends about it in the hall. The best part about it, though, is I get to teach my students about it during our human body unit. They get to have hands-on experience with all of my legs from the smallest one when I was two, to beach legs, to the cool computer-chipped legs I have now. Then they take over answering questions in the hallway!
My job is awesome, but it’s even better because I get to connect with students who have different abilities, and I get to help all of them become more compassionate and understanding. I still don’t know the root cause of my tibial hemimelia, and that definitely has impacted my life. I may have an extra (incredibly costly) necessary item to work into my budget, and I may deal with people who stare or feel sorry for me (or who tell me I’m inspirational…for doing something I normally do), but I’m lucky to be able to share my experience with others.
*When I was a senior in college, one of my friends started a club at UNC for students with disabilities (Advocates for Carolina) and we were able to host an art gallery. The picture I included was my gallery contribution. Our topic was, what does being “disabled” mean to you? We went on NPR to discuss this and our group continued to grow. Rare diseases, as with those that are more common, create a need for community. All people deserve to feel connected and supported through the struggles of life.