Changes

I usually wake up every morning like most teenagers. My alarm clock goes off, I push snooze. I repeat this about three times. My dad comes in to tell me to get my butt out of bed at least two times before I wake up. I groan and complain. I slowly drag my butt out of bed and get dressed. The one difference I have is I have to put on my KAFO. A KAFO is a knee ankle foot orthotic. It is basically this monstrous brace that literally feels like I am preparing for war. I also have the strenuous task of pulling a pair of pants over top of the brace. I assume that I appear like a person trying to put on skinny jeans with a pair of running shoes on. It is very difficult. Again, like most, I eat breakfast while trying to fight the urge to argue with my siblings about little things that don't matter. A voice in my head says, "It's 8 o'clock, hurry up!" Now it's time to face the challenge of putting my shoes on. As a kid, I used to use a shoehorn in order to get my shoes on. Luckily as a child I never mixed up my shoes; one shoe was always more destroyed, a size bigger, and included a lift on the bottom. That is not the case anymore but it is still quite a task.

I have gone most of my life thinking that my disability is who I am. I am the one with a problem with my leg. "I am missing my fibula, the smaller of the two bones in your lower leg", I usually explain to the people I meet. It is not easy to live life with a disability, even though I put on a smile most of the time and try to look at the positive side of things. My life has been a roller coaster. Luckily I am coming to a point in my life where I am going uphill. I feel my hands sweating, my heart beating, all with a great rush of excitement for what is to come.

I was born with a condition called Bilateral Fibular Hemimelia. In simpler terms, I am missing my fibula in both legs. This isn't exactly true. I am missing my fibula on my right side and it is smaller on my left side. I was also born with three toes on my right leg and four on my left (two fused, now I have three). Due to my body developing this way inside my mom's womb, my muscles, tendons, ligaments, and all pieces of the puzzle that relate to the fibula did not form. When I was born there was a ton of confusion. Some terms were thrown around including, clubfoot, amputation, one in a million, unknown deformity, premature, more tests needed, and we are sorry. I assume it was difficult for my parents.

Before I continue my story, let me paint you a picture. When I was 3 years old I had a surgery. The surgery was to help lengthen my right leg to help it catch up to my other leg. This is done under general anesthetic. The surgeon cuts my tibia bone in the middle. Then they drill pins into the bone. Then a halo-like frame is attached to my leg. There is usually about 10 pins in total. There are these knobs on the side of the frame that you click and turn one notch in order to slowly lengthen my leg. I also had one of my toes removed on my other foot at the same time. It was conjoined to my big toe and the nails were growing into each other. Anyways, the surgery takes about 3 hours. The doctors told my parents that I was not going to walk with this frame on. Not that it is not possible, but they have had 25-year-old men with this procedure try to walk and vomit because of pain that is intolerable. My parents left me in the room sleeping. They came back and I was running up and down the halls, giggling as I ran to my dad. My surgeon called all of his residents and said, "Don't ever tell the parents of a child what they can and can't do, they will surprise you". That was only one of 16 surgeries I have had.

I have been in pain my entire life. Sure, it's not that long but still. How many teenagers do you know that can say they have been in physical pain for 17 years? Not many. I remember that when I was about eleven I was diagnosed with complex regional pain syndrome (CRPS). I overheard the doctor say that I would never be able to have any more operations. I still needed more surgery to fix my leg length difference. The pain is described (in the McGill Pain Scale) as worse than unmedicated childbirth, traumatic amputation, and non-terminal cancer... and CRPS is a constant pain. When adults ask me, I say, "Have you ever had a hangnail? It's like that burning and stinging pain along with touch sensitivity, color and temperature change, but inside my leg and it's always there". It is an invisible illness that no one sees unless you show it. People around me would assume I am ok when I am not complaining. I am not, I am just managing the pain. There is no known cure but there are some treatment options to make it manageable. Don't start crying or feel bad, though, my life is like a roller coaster. I am getting to the good part.

One day, during this summer (that just passed), I was in the shower. I looked at my feet and realized that they were the same color. I felt them and they were the same temperature. I touched both of them with my eyes closed and felt nothing, other than my hands touching my feet. I screamed. As though I had just seen a ghost. No one heard me because I screamed on the inside. I ran out of the shower (... I got dressed) and told my dad. He thought I meant that it was just good on that day. But I had to clarify, my CRPS was gone. I know what you are thinking, the pain is gone. So I am not in pain anymore. Yay! Wrong! I still have pain. It's just a different kind of pain.

I am here today. Sitting in English class. Staring at the board. The only difference is I have options. I am not forced to just live with this pain. I can either have another leg lengthening to solve the missing 4 cm leg difference. That will solve scoliosis and lordosis I have now developed. Unfortunately, I have major arthritic pain in my ankle and some pain in my knee. So that option would only solve my back problems. The surgeon told me I could have other operation to try fixing my foot, but many operations would likely make it worse, not better. I have one other option. An amputation.

I have had a lot of time to think about whether or not I want to choose to have an amputation. I have been thinking really hard about what to do with the support of my dad and my friends and family. Things were slowly moving forward. I was supposed to get an appointment with the surgeon to talk to him and book a surgery. Out of the blue, my dad texted me and told me that my hospital called. He said that I got an appointment. He also sneaked in a text saying that my surgery was booked. June 17th. I am going to have an amputation. My foot is going to be removed. It will be gone forever. At first, I was excited. I thought about the lack of pain I would be in and the more mobility I would have. Then I felt scared. I felt like I was hit by a bus. It started to become real. Having a date for a surgery is a lot more real than just hoping it will happen. I will always be nervous, but I am looking forward to starting fresh and feel happier.

I will always wake up, and get dressed, and try not to argue with my siblings. The only change will be that I will get up and put on a prosthetic leg and a knee brace. I will choose which pants I want to wear and what shoes I like. I won't have to settle for what works with my brace. I will walk out of my room with the attitude that I am not just someone with a disability. I am someone who is going to move on with my life. I am going to go to the Paralympics. I am going to get my dream job. I am going to have a family of my own. I am going to try snowboarding, ice hockey, running, jumping, skiing, buying pants I like, and shoe shopping. I won't be normal. There really is no such thing as normal. I will still have a disability. I will just have a new perspective on life. I will be a changed person. Changed for the better.