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TW: Contains discussion of drug and alcohol misuse
My hypermobile Ehlers-Danlos syndrome (hEDS) story starts from my birth, inherited from my mother, but we didn’t know until six years ago when I was finally diagnosed. My mother expected as much, being diagnosed around a decade ago. Growing up we faced our fair share of hardships. When I was 11, my father passed away, and about 3 years later, my brother was diagnosed with leukemia. My mother showing a ton of hEDS symptoms, going through the gauntlet of diagnosis, battling both pain and sanity, struggling to keep our home, which we lost by when I was 18. But we should step back.
Through the ages of 14-18, I was self-medicating with illegal substances; traumas, ADHD, and physical pain in my life that I never spoke up about because I thought they paled in comparison to my family’s suffering. Bottling all this up finally resulted in severe anxiety and panic disorder along with a major depressive disorder. When I used drugs, I only used drugs. No alcohol was my rule.
I did a complete 180. To help quell the panic, I immediately quit doing all the drugs I could get my hands on and began drinking very heavily. I quickly graduated to my standard 1.75L of whiskey a day to keep the panic and pain at bay.
Now 18, an alcoholic, we lost the house, and my housing situation became even more unstable (I was never good at staying around). I dropped out of high school, I got my GED but nothing else. Things just got worse and worse because I couldn’t understand why my body kept feeling worse and worse. After losing nearly everything and everyone in my life, I finally found myself in rehab (again), at the age of 21. This time I was under a stay of commitment.
So, I did it, six months of treatment, then I was homeless again. I stayed sober, though. I saw a geneticist at the U of M and was finally diagnosed with hEDS and it brought a lot of understanding to why I felt the way I felt every day which made things easier, and I kept pushing.
I found a hidden gem film school, national award-winning, within a community college. I found work, found my first room to rent in my second year. There I graduated with a 3.96 GPA, two degrees, in cinematography and screenwriting, then continued to work in the rental houses and now professionally (well, in school as well) as a set lighting technician.
I couldn’t ask for a better job. Motion picture and the productions of them is my life. It is an incredible strain on my body but I will continue to do until I can not anymore. Then I will write until I can not write anymore. I just started pain management at the age of 28, after fighting the choice not to for four or five years, but I just don’t want to stop doing what I love.Tags: Coping, Diagnosis Journey, hypermobile EDS, Pain
Categorized in: Stories