#MyBodyStory is a series of reader submitted pieces about what it’s like to live in your body. Because every body has a story, and every story deserves to be heard.
Do you have a #MyBodyStory to share? Send it to Story@DoTheHotpants.com
And now, here is Madeline’s Body Story:
The opinions expressed in #MyBodyStory are the writer’s own.
My name is Madeline and I am 22 years old. I am currently getting my undergraduate degree in psychology. I was born with a condition called Arthrogryposis Multiplex Congenita.
I want to start by emphasizing that although my disability has impacted my life greatly, it does not define me…not anymore. Before I started public school, I didn’t know that I was disabled. I didn’t think that there was anything “wrong” with me.
Then, the first week from school I returned home one day from kindergarten and asked my mom what was wrong with my hands. I asked her why am I different. The reason I got it into my head that there was anything wrong with me to begin with, was that a little girl from my class asked me point blank, “What’s wrong with your hands? Why are they shaped funny?”
And that was the earliest memory of feeling different or wrong that I can recall.
From then on, my life revolved around trying my hardest every single day to hide my differences. I didn’t want to stand out, I didn’t want people to notice that I could not straighten my arms or hands or legs. I didn’t want to be disabled.
My disability in a nutshell, basically just effects my mobility. Bending, reaching, medium to long walks, and self esteem are the main things that I deal with on a day to day basis because of my AMC.
Overcoming the mobility side of my disability has been much easier than the self esteem part. It wasn’t until about June 2017 that I realized that I can love my disabled body. For some reason, the idea that self love was a possibility never even crossed my mind after I started hating it. And not just for no reason, it was because of the lack of representation that our society gives people with physical disabilities.
If I can do anything good with my life, I want it to be helping my disabled community to feel more included, understood, and appreciated by our society. Whenever we see disabled characters in movies or television, it is rare and most often inaccurate portrayals of people who are truly disabled. I want to help change that.
That is what I am trying to do via my Instagram account, @crooked_loves. I made the account one day where I woke up and finally decided I was done hating myself as well as lying about who I was.
I was done pretending that I wasn’t disabled by wearing long sleeved shirts whenever it wasn’t too hot or refusing to ask for help in situations where asking for help would call attention to my differences.
Throughout my life I have had many surgeries and gone through physical therapy multiple times. I was born with something called Rocker Bottom Foot, so in my first year after being born, I had surgery to correct it. My last surgery was a hand surgery when I was 15 years old that helped release some of the tendons to give me a bit more mobility in my fingers. I remember after this surgery my hand doctor said to me that he would be retiring in a few years, but he thought that there was another surgery that he could try on both of my hands to release the tendons a bit more…but for the first time in my life, the choice to have the surgery or not was up to me because I was old enough to choose! That being said, if ever you feel the need to see a hand and wrist surgeon it is crucial that you do what is right for you. No one should have to live in pain, and orthopedic surgery can sometimes make things more comfortable where your hands and wrists are concerned.
As for me, I chose not to do anymore surgeries. I told everyone that unless it was life-threatening, I was never going to choose to have another surgery again.
The recovery from surgeries was obviously very difficult. When I was 12 years old, I had major spinal fusion surgery where they placed 4 rods and 8 screws to stop my scoliosis from advancing. The recovery from that surgery was the most difficult physical thing I have ever gone through, still to this day. I lost a significant amount of my mobility because of this surgery, and I didn’t realize this would happen. I went from a kid who could tie her own shoes to a kid who could barely reach past her knees. I couldn’t put my own socks on for many years after that (and today it is still difficult, but with a lot of stretching, I am able to).
The pain and the recovery from surgery is tough, however it’s the scars that I hated the most from surgeries. I thought that the scars on my feet, hands, hips, and back made me look like a freak.
I get so upset looking back on the lengths that I would go to hide anything that made me look different. I missed out on so many things! But I don’t want to miss out on anything else because I’m disabled. I don’t want to ever hate my body because of its differences. I want to appreciate my scars because they represent what I’ve had to go through to get to where I am. I want to love my body, and I deserve to love my body.
Some days can still be harder than others to love myself, but most days loving myself comes naturally which is incredible! If you told 16 year old me that in just 6 years I would be in a place where I flaunt my disability to the world and don’t go to sleep every night dreaming about being someone else, I would have never believed you! It took a long time, and a LOT of self-reflection and hard work, but this journey was so worth it.
My body is disabled, and I love my disabled body.
Follow Madeline on Instagram