Trigger Warning: Today’s story contains descriptions and information about depression and suicidal ideation, which may be triggering to survivors or to the family and/or friends of victims. If you or someone you know is struggling with suicidal thoughts, please seek help. You can call the National Suicide Prevention Lifeline 24-hours a day at 1-800-273-8255 for assistance.
Growing up, I never thought that I would be here today, and if I’m being honest I didn’t want to be. When I was 7 years old I was diagnosed with Tourette’s Syndrome, and at 9 years old, I had my first seizure that caused me to break my arm. After several EEG’s and multiple tests, none of the doctors could conclude why I was having these seizures, or which part of the brain they were stemming from. Shortly after my first seizure, the tics from my Tourette’s and the seizures began to morph into one “Big Tic.” The big tics consisted of loss of consciousness followed by severe muscle contractions, dystonic movements, tremors, complex tics, and seizures that would surface during the entire length of the episode. The episodes would last for hours on end, and many times caused me to be medically induced into comas.
The bullying that took place was almost worse than the physical reality of whatever was possessing my body. I was constantly made fun of for being different. Kids would push and kick me when I fell to the floor during a tic/seizure. I was always a quiet kid and I never really had a lot of friends, but I always liked to write and draw. I would carry my sketchbook around with me wherever I went as my outlet. One day on the bus, I had a Big Tic that caused me to fall out of my chair and into the aisle between the seats. When I regained consciousness I realized that the kids ripped apart my sketchbook and stuck multiple pieces of gum in my hair. This was still during the early stages of the progression in severity so I don’t know how long it lasted, but I will always remember how it felt when I woke up.
I was ultimately homeschooled and was then put in a school for kids with disabilities, but I was in the hospital more than I was in school. The hospital became my home.
I strived to make my first suicide attempt when I was 14 years old. I was so tired of the pain that my world was revolving around, and I was extremely exhausted of searching for answers that never came.
My mom was and still is my best friend. She stuck by my side through everything, and she never gave up on me. She was determined to find out what was causing my body to fail me, even when I was ready to give up. After meeting countless amounts of doctors in multiple different states, one doctor who was a research neurologist at Harvard University suggested an experimental procedure called Deep Brain Stimulation. After being on over 50 medications, enduring countless treatments, and no results, I had a team of doctors working together who decided this was my last option.
I woke up after surgery to a body in my control on January 31st, 2011. I was 16 years old and I now had 2 batteries implanted into my abdomen with wires that ran up my body and into my brain. When I woke up after the surgery, the stillness scared me. It was such a foreign concept; I forgot what it was like to live without the tics and seizures.
It wasn’t long after the surgery that I asked to be “mainstreamed” again. I never considered going to college because I never thought that I would be able or alive to go to college. I was living the life I always dreamed of, but I knew there was something that needed a change.
I began going around to different schools all across Long Island speaking about my story and the importance of being kind to one another. During the years of my sickness, I was granted a wish from the Marty Lyons Make a Wish Foundation and my wish was to meet Lady Gaga. On November 22nd, 2011 I met my idol whom I considered my best friend next to my mom. This was around the time of the creation of the Born This Way Foundation, and I soon began discussing the Born This Way Foundation when I was touring the schools across Long Island. In my High School, Smithtown High School East, I started an extra-curricular activity called the Born Brave Group. It met after school, once a week and we discussed ideas on how we could create a kinder world both in our school and in our community. We held events and fundraisers for people in need as well as gatherings where people could have fun and make friends.
After graduating high school, I was accepted to Pratt Institute where I studied art and film. I was living the life I never thought I would be able to, but for some reason, I was constantly battling with my mind. I was living through the fear of relapse, and the constant flashbacks of the horrors that previously consumed my life. Without going too in-depth, a few years into the hurricane surrounding my mental health, I realized I had a passion for supporting people who walked through similar storms.
I am now 25 years old and working at the Association for Mental Health and Wellness. I facilitate a training program for people with lived experience in the mental health system who are trying to get into the support field, while also offering support to people who experience emotional distress, and/or extreme/altered states of consciousness. I’m still navigating around my own inner demons, but I think that’s something that strengthens the bond between myself and the people I’m working with.
I am currently in the process of creating a new program where people with lived experience battling chronic illness can go into hospitals and support others who are enduring similar hardships. When I was growing up, if I had someone who could have come talk to me and if nothing else, just be a friend to me when I had none, that would have made a world of difference.
On top of the fact that I was struggling with a life-altering chronic illness, I was also battling with extreme mental turmoil. It’s interesting how people who are battling chronic illness are constantly being funneled into the mental health system for having natural human responses to given circumstances.
This is why I am so passionate about starting this program where people with lived experience can create human connections and support each other, rather than be told that there is something else wrong with them.
Outside of working within the walls of my agency, I am also on the PAIMI (Protection and Advocacy for Individuals with Mental Illness) Advisory Council at DRNY (Disability Rights New York). I still get to go into the community and talk with people/offer seminars about my (physical and emotional) recovery narrative and the importance of spreading love and kindness into a world that so desperately needs it. I teach yoga on the side, and when I end my classes I repeat the mantra “lokah samastah sukhino bhavantu” which translates to, “May all beings everywhere be happy and free, and may the thoughts, words, and actions of my own life contribute in some way to that happiness and to that freedom for all.”
I never thought that I would be here today, but by the grace of something beyond my comprehension, I am. I didn’t think that I would ever say this, but I am so happy to be here, and I can’t express how incredibly grateful I am to finally be able to say that.