Limb Loss and Limb Difference Awareness

Adaptive…. Life as an amputee can be summed up in that word.

Before I start talking about myself I want to tell a story of 2 young women. The year is 1992. There is a young woman in a small mountain town in Russia giving birth. This is her firstborn child. The baby is severely deformed. She is missing organs. She is dying. The doctors tell this woman that her baby will not live.

An American businesswoman is taking on big business in Russia. She was not able to have children. She almost died having one. She thought about adopting and then thought it would be too strange to raise someone else’s child.

I was that baby. My birth mother decided my life wouldn’t end there. She decided to give me up for adoption so that I could live. My adoptive mother decided to take a chance on a dying baby. She gave up her travels and adventurous child-free life. Talk about adapting! Both women sacrificed so much. After all that how could I not do my part and start adapting?

When I came to America it was like I was this amazing athlete or famous celebrity. My new parents had to hide out in an airport restroom with me.

I spent a good portion of my childhood hospitalized. I was 4 years old before I was adopted. I was born with club foot tibia hemimelia along with many other birth defects. 4 years old! That is a long time walking on club foot!

I had 7 toes on my clubfoot and no tiba (shin bone)!

My parents chose Shriner’s Hospital because they would not only perform the amputation but also, provide me with my very first prosthetic device. Beyond providing the procedure and the device they even spent months with me providing physical therapy. My parents also had to choose if the amputation would be above or below knee. I had tibial hemimelia as well. The chance for revision was high if they went below. They chose below. Could you imagine making all these major decisions for a little human you just met? My parents chose. They chose the hospital, they chose the amputation level, and they chose me. I just had to adapt. I didn’t have to make any of the hard decisions. I also was young enough that I honestly don’t remember what life was like with 2 real legs.

I spent a lot of time in Shriner’s Hospital when I first came to the States. I would go home and run around in the backyard, swim at the lake nearby, and do anything my family was doing. When I was at the hospital I saw other kids like me and they were not doing these things. They seemed confined. Reserved. Cautious. I was stumbling all over the place and falling constantly. I loved it!

I began school and immediately felt different. How crazy is that for a 5-year-old? To know that you are not like the other kiddos. All of the kids pointed and stared. I got a lot of questions that I didn’t know how to answer. I came home in tears and got some really good advice from my father. Just tell them the pet alligator was a bad idea…. You can imagine how 5-year-olds took this. They thought it was so cool that I had a pet alligator and that it bit my leg clear off!

Growing up with all able-bodied kids is quite interesting. I was the only kid on my soccer team whose leg would pop off if the ball hit it at just the right angle. I was the only ballerina who couldn’t point her toes or twirl gracefully. I was the only Girl Scout… well you get it. I asked my parents why there were no other kids like me. I only saw kids like me at the hospital. And those kids couldn’t play with me.

I grew up proving others wrong. I wanted to show anybody and everybody that I could ADAPT.

Then, high school came. I hated how often I got asked about my leg. All you want to do is fit in. blend. Be “normal”. I decided to have a heavy cosmetic cover put on my leg. I want you to imagine you are back in high school. You are a typical anxious, hormonal teenager. You get invited to hang out with some kids from your class outside of school. This is huge! You aren’t exactly the most popular and you were dying for an invite. You find out it is to go to Six Flags. Your excitement diminishes a bit, but you decide you need to go outside your comfort zone. You decide it is okay for others to see you, to really see you. You wear a pair of cut-off jean shorts and a loose tank top. You have your bikini underneath. You feel a layer of protection with those mid-summer heat clothing items.

Right when you get to the park everyone votes to go to the water park. You all scurry to save a few seats and strip off the clothes. You slowly take off your shirt hoping no one notices the scars that riddle your body. They are all caught up in conversation and don’t seem to notice. They all agree they want to start with the tallest slide. We become a number in the long line of tanned bodies. You relax as everyone is busy checking out others who are not in your group. After what feels like hours you have made it to the top. It is your turn. You step up and feel the water jets at your feet. The underpaid teenager of a lifeguard stops you and asks what that is on your leg. My face turns a dark shade of red. I inform him that that thing is my leg. I needed it to get me up all of these stairs. He tells me I cannot go down the slide because I will scratch it. I look at my friends and at the multitude of humans who all of a sudden seem extremely close and everyone’s eyes in the park seem to be on me. I have a rush of emotions and then…I feel myself sliding. Being carried away lots of twists and turns and drops and I feel free! I just went for it! I had been told I couldn’t do something once again. I had been called out for being different. I had had it. So I decided something right then and there. I was going to make some changes.

I started an organization called Adaptive Amputees.

I had spent my (young) life explaining to non-amputees what it meant to be an amputee. I had to explain myself to adults kids and peers. I had to explain myself to teachers, coaches, and shoe store clerks. I wanted this message to go further than explaining myself. I wanted to be the voice for amputees. I also wanted to talk to those amputees I saw at the hospital. What were they doing outside of the hospital? Why did I never see them at soccer games or dance recitals? Why did I feel like the only amputee? I began giving public speeches at local grade schools and high schools in St. Louis. I went to Hospitals and spoke to patients. I shared my story so that amputees could see what they were capable of and able-bodied people could see that I put on my leg like someone puts on a pair of glasses. It just helps me get through my day.

I also decided to remove that cosmetic cover. It had been weighing me down in more ways than one. I was done hiding. It wasn’t fooling anyone clearly and it was heavy and awkward.

I remember when I was in kindergarten as soon as I made a joke about my leg I got laughter. I was suddenly not an outsider. I had let them in on my “secret”.  Once I acknowledged that my leg was fake the kids could accept that and move on. I was just their friend Angelina who happened to have a robot leg. It was time for me to listen to my own advice. It was time for me to ADAPT.

I decided to study biomedical engineering to better understand prosthetics. At Shriner’s, my prosthetist had always let me go into the shop with him and help build my leg. We came up with ones I could ski on. Ones that wouldn’t fall off while I was horseback riding. We came up with all sorts of crazy legs. I could not believe this wasn’t the norm. Why didn’t every kid want a leg they could water ski on? Why didn’t they already have a leg for every sport?

Since college, I have built lots of legs and arms. I researched what materials I could use to make them lighter stronger and more buoyant. I ran research studies, I 3d printed arms and legs, and most importantly I got to speak to other amputees. One of these amputees was Melissa Stockwell. She came into the shop I was working in and asked for a quick tune-up. I was star-struck. When I returned the Paralympian’s leg to her she asked me to do a triathlon with her that weekend. I, of course, said yes. I also, of course, had zero triathlon experience.

I built myself a running blade on Friday and showed up to the triathlon on Saturday. A triathlon starts with open-water swimming. It was a stormy weekend which caused my first swim to be a bit of a doozy. The water was white capping and I was blue before the start of the race. The gun went off and I started swimming. I froze. Literally. I couldn’t move my joints. My body became stiff and my heart slowed. Then I passed out – in the water. I was carried to shore and woke up in a car under lots of towels.

I opened the car door and hopped on my bike. I began peddling. As I finished the bike portion I could hear the announcement of finalists and everyone cheering. The race was over. I was transitioning into the run when Melissa came up to me and asked if she could run with me. She had been done with the race for some time but asked me if I’d let her run with me. Again, star-struck.

We ran a 5k and I finished dead last alongside America’s bronze medalist in paratriathlon. I am not an athlete, but I choose to put myself in those situations. I don’t recommend going to that extent but get out of your comfort zone! I started Adaptive Amputees because I wanted to be that support system I have had my whole life. I want to be the reason a kid decides to try out for the baseball team even if he is the only one missing a hand. I want a little girl to know she can be a ballerina whether or not both of her feet are real. I want amputees to know what they are capable of and to set their own limits.

I wanted to motivate these patients to do more than what society claimed they could. I was told I would never walk. I was given up because of my deformities. I have hiked through rainforests and climbed mountains. I’ve completed triathlons. (yes I went back after that traumatic experience). I am an engineer by day and an advocate for amputees by night! Yes, I am an amputee, but I have learned I can adapt and be whatever it is I want to be!