This week I was contacted by a young mother about my life as a woman with a limb difference – here is her message:
“Hey! I’ve been following some of the fibular hemimelia groups online and came across your blog. I’m currently pregnant with my first baby and she was diagnosed with FH in her right leg at her 20-week ultrasound. I’m currently at 37 weeks and very excited to meet her! While there are a lot of blogs online, written by parents, about raising kids with this condition, I feel like there isn’t as much online from people who have grown up with FH. I love that you’re active and so positive – and I’d really appreciate getting your perspective on what it was like, as a girl, teen, and woman, to have a leg difference. I know this is a very random message, but I’m on mat leave now and have a lot of time on my hands to think about my little girl! So, I hope you don’t mind me reaching out to you.”
This is a big question, but I’m going to attempt to address my general perspective on these 3 phases in life through my blog post today.
As a girl, I wasn’t really that aware that I was any different than my friends. I just put my leg on in the morning, went about my day, and took it off at night before going to bed. My grandma likes to tell the story of when we were riding in the car together and I asked her when she got her first prosthesis. My grandma doesn’t wear a prosthesis, but in my head everyone did because that’s what I knew as normal. Despite my lack of awareness, however, my life did differ from my peers in the following ways… Oftentimes, I would take my leg off while watching t.v. at night and then I would later hop to bed and go to sleep. Many a morning I would wake up and the first thing everyone else in my house would hear was, “Mom, where’s my leg?” To which my mom would respond, “You left it under the couch again!” I also had more doctor’s appointments than my peers, and my leg would sometimes be “in the shop” for a day and I would go to school without it. I didn’t mind the doctor’s appointments, though, because it meant I got to read books while they worked on my leg. I also got to go to a camp for kids with disabilities for a week during the summer for 3 years. During that time, my younger brother would hang out with my mom, aunt, and grandma – he was so jealous of me getting to go to camp that he used to say he was going to cut off a leg so he could go too.
Another benefit of having a removable limb as a kid was that I could use it to do tricks and play pranks on people. For example, I used to loosen it up little by little as I was swinging until it was so loose that it would go flying across the playground as I took a big swing, and then I would jump off and hop over to retrieve my lost appendage. Overall, growing up with a removable limb was different than my peers in some ways, but I really wasn’t aware that I was all that different, and I definitely never thought of it as something negative.
During the teen years I started to become more aware of my body – which I think is probably a common time for girls to start becoming aware of such things. That said, I was much more self-conscious of zits on my face and “thunder thighs” than I was of my missing limb. I didn’t really date during those years but it was because I was extremely busy with my horseback riding hobby, not because boys didn’t ever ask me out. I was also shy, but that had nothing to do with my leg, it was just part of my personality during those years. All my friends knew me, so I never hesitated to take my leg off and do a flip off the dock at the lake or hop around a slumber party impressing my friends with how I could carry a glass of water without spilling. I would say that having a good sense of humor was definitely an important quality, as it is for anyone.
By the time I went to college I was comfortable enough in my body that I felt my missing limb was a positive thing that made me unique – not bad, unique – and this uniqueness has impacted almost every aspect of my adult life. I initially thought I wanted to go to school to be a prosthetist so I could make legs for other people. This lead me to a job at Walter Reed Army Medical Hospital in the Prosthetics Department where I met my husband, Zach. I eventually decided that making legs wasn’t for me, so I went to law school and now practice disability rights law, where I’m able to help people with disabilities when their civil rights are infringed. When I moved to Denver I helped start an activities-based support group for people with limb loss and limb difference. Numerous other aspects of my life have been impacted by the fact that I’m a missing limb, but these are some of the “big” ones.
One of my best friends recently texted me that she believed I was meant to be an amputee because it has impacted my life in such a positive way, and I definitely have to agree with her – I don’t know who I’d be with two legs, but I’m extremely thankful for the life I have with one.