My Story: Embracing Shame through Disability

Some of you may be wondering why I walk the way I walk and why I am different from everyone else. Some of you might not have noticed at all. But, I am different in a special way. I have been an artist my entire life.


Since I was a baby, I have loved coloring, writing all over the walls, painting, sculpting, and everything else. I was a rising artist and was starting to get really serious about my art by selling it at my grandfather's restaurant. I know it’s kind of silly, but my dream has always been to go to an art college and become a professional artist. I was perfectly normal before my accident. I was able to enjoy life, I had many friends, and I had a bright future. Back then, I wasn't afraid of anything or anybody. I never really struggled in my life until my accident.



July 20th, 2008 was the day that changed my life forever. This is the day that consisted of 15 brain surgeries, 10 MRI's, 4 hospitals, and about 30 doctors all stating that I had an hour left to live. I was in a medically induced coma, struggling to survive. Out of nowhere, at the age of twelve I had a right cerebral hemorrhage, a brain aneurysm where the blood vessels in my brain became entangled, and burst. According to every doctor/surgeon/neurologist I had no chance of survival.


It all started with a mild discomfort directly above my right eye. It lead to an extremely strong sharp shooting pain that felt like my head was being squeezed so hard that it might as well have exploded. Then it felt like a million giant boulders were rolling back and forth in my head. The pain was so bad that I would not wish it on my very worst enemy.

I was in the hospital for eight months. I was going in and out of ambulances, being transferred to and from Intensive Care Units (ICU) of each hospital for every surgery I had. Every night for me was a sleepless night because I either had to get another surgery, had to get an MRI, or get my vitals taken. To relieve the pain in my body over the course of the nights, I had to push a red button next to my hospital bed to shoot morphine through an IV. I was completely paralyzed on the left side of my body. I was so weak that, even as I was trying to recover from a procedure and needed nothing but rest, I was instead required to endure intensive physical therapy every few days to help me get “better”.


My life relied on a call button that alerted the hospital every time I needed a nurse to roll me around in a wheelchair because I was too weak to stand up. I was completely immobile and bedridden. After my final brain surgery, I had to relearn how to eat, walk, swallow on my own, breathe on my own, - everything! I was retaught how to dress myself using only one arm because the other was paralyzed. Getting back to normal was such a huge deal that even the first time I opened my eyes or smiled at a family member was a milestone. My first words were “mommy” and “daddy” through whispering because I had not redeveloped my voice yet.


I lost my entire long-term and short-term memory during that time, but there was one thing that was not lost during the bleed that shocked everyone I knew from doctors, and therapists, to my relatives who knew me as the artist of the family. As a TBI (traumatic brain injury) survivor, the one thing that stuck with me through the whole traumatizing experience was the one thing I held nearest and dearest to my heart. The one thing that my brain astonishingly was able to hold on to was my artistic ability and my passion for becoming what I had always dreamed of– an artist. A year later, in August 2009, I tried something that, to this day, I know brought my passion for art back. I was able to paint! Here’s my very first painting after my accident compared to now:

2009

2011

2012

2013

2014

There is so much more that I could add to my success story, but there wouldn't be enough time in the world to explain all I went through during that time. Sadness and depression were the main emotions felt throughout that year-long journey, but mostly, tears of relief, joy, and gratitude towards those who saved my life like the EMT who saved me in time before my head literally exploded, and my family who stuck with me throughout my entire journey as a disabled teenager who's legally blind in one eye, walks with a limp, and has the absolute worst memory ever.



But, to add more to my list, two years ago, I was diagnosed with a mild case of epilepsy. I still have many limitations and I continue to struggle with being unable to retain important information that constantly leaves me frustrated. And yes, there have been multiple occasions where I'll look at someone and think to myself, “why can't I walk like that or look like that, or do things like that?” I used to be the person who could pogo stick around the entire neighborhood without stopping. There were times where I wondered why I only had one friend. I was in special education classes for most of high school when, before my accident, I was in all honors classes. I still wonder what my life would be like if this didn't happen to me. Sometimes, I do feel shameful for what I have become. I felt shame and disappointment when I was unable to do something that I used to.

All I can say now is that was the old me! Now adays, I don't know what shame feels like! I'm in art school for crying out loud! I express the shame I’ve felt through splashing paint on a canvas or through writing dark poetry. I am happy with who I am, and I couldn't care less about what people think of me. Every insecurity was eventually turned into a beautiful work of art. I embrace my disability by being the happiest and most positive version of myself I can be. My ultimate goal is to work as an animator for Disney/Pixar and now, I can pursue that goal. I am not and never will be the type of person who cries “why me?” I was told that there is a chance that I could be like this for another 10 years, or the rest of my life and I accept that. I do not dread it, but make the most of it by living one day at a time and treating my disability with the utmost importance.


I keep thinking everything will only get better with time. I wanted to share my story to inspire those of you who may think you’re not good enough. Perhaps you’re having doubts about whether pursuing your dream in art school is really worth the time, frustration, constant disagreements with your parents over why you should spend that kind of money on art school when you could be using it for medical or law school (I was asked that question many times), but take this one piece of advice from me. Live your dream, aim for the highest that you can be, and strive for success and happiness, live everyday like it’s your last, and never, ever give up. I never gave up, but if I had, I wouldn’t be here today sharing my story with you. Thank you.

 

- Cheyenne -