I am reaching out to you, dear reader, with the hope of sharing my story. Just a few years ago, I was a young college student going to school in Hollywood to pursue a career in the film industry as an actor, makeup artist, and special effects artist for tv and film. I was a kid with big dreams, in an even bigger city, surrounded by incredible artists and so many talented, creative people, who wanted to make something they were passionate about. I drove 3 hours each way to school 3 plus times a week and I loved it!
Then, I started dealing with some pretty serious health issues. In Fall 2015, I was diagnosed with P.O.T.S. (Postural Orthostatic Tachycardia Syndrome) It became very difficult to get to school, and it was exhausting working through the 8 to 10 hour days school required. Still, I pushed through. This was something I had wanted and worked toward since I was little, and I
was determined to make those dreams a reality. A culture of “suck it up and fake it” had been instilled in me, and I didn’t want to give up.
With very little known about the life-long diagnosis, I’d just been given, I acted like it wasn’t a thing. I tried to push forward as though being disabled shouldn’t affect or change anything about my life. I tried to drink more water and work out more and just “get healthy again” but I still felt sick… because I still was. In 2016, things hit the fan. I had an adverse reaction to a new medication and suddenly, my system just started shutting down. It took 8 days in the cardiac ICU, a total of 31 days in the hospital, and six months in a wheelchair, to get back on my feet.
At a few points in the ICU, I didn’t know if I was going to survive. I didn’t know if I would walk again, or if I would wake up the next morning. It was terrifying. But I pushed through, and I got better. I was determined to walk again and to “not let my disability hold me back” and it worked!
For a while…
In January of 2019, things were going great. In the past four years, I had moved into my own place, graduated from trade school for makeup and special effects, and even worked on a feature film (Captain Marvel 2019: Prosthetics and mold department at Legacy effects). There had been many serious ups and downs, but overall, my health improved. Most days I was walking, and on my worst days, I used a seated cane.
Then at the end of January, things took an unexpected turn. I had a severe seizure, and out of nowhere, life changed again.
I want to preface, this next experience was one of the darkest times in my life but it was this experience that has pushed me to write to you. I was having recurrent seizures almost daily and didn’t know what was happening or why. It also affected my P.O.T.S.
52 days in the hospital didn’t help to find control over the condition. It has since improved slightly, but the thing that changed the most was my perspective. I realized, healthy or not, I am still me and I still want and deserve to live my life and be happy. I don’t need to “suck it up and fake it” when I am hurting, and by sharing my story, I can not only help myself but others that may be going through similar situations. My hope is that I can help able-bodied individuals as well, by breaking down the stigmas and questions surrounding mental and physical illnesses.
One thing that took me a long time to realize myself, is that disabled individuals are not less capable. We may need extra help at times, but we are not any less of a person. I am not less of me because I can’t stand much. I’m just a different version, and those differences aren’t bad, they’re just different.
In this series, we hope to share a collection of stories of people and businesses who are helping disabled communities. We want to talk about the inspiring, and exciting crossovers between disability and philanthropy, and to celebrate those who do things a little differently, finding accessibility within an industry.
Jae Rose and Carly Goebel will be co-contributing to this series on disability and philanthropy. You can find them both on IG: @ABuddedRose and @Carly_G_710
If you or someone you know has a story you think should be shared please contact Carly at Carly@nugl.com.