I woke up this morning and had a small revelation: my hypermobile Ehlers-Danlos syndrome, like my autism, is not something I ‘have’ but rather something that is so much part of me that it has shaped my entire existence. If that sounds like I am just now figuring out something that should have been obvious, remember that both diagnoses are new to me – just a few years ago, I knew very little about autism and had never even heard of EDS.
Whether or not I was aware of either one, they both made me who I am today, in both good and bad ways.
The intense focus I was capable of because of my autism allowed me to switch from a dead-end job (albeit one I really loved, except for the poor pay and benefits) to a career in IT in spite of having no college education, and to rapidly amass technical certifications using only books and simulators. It took me a while to work my way into a job that was the right balance for me, but I never could have gotten there at all if it wasn’t for the Asperger’s.
Of course, on the other hand, responsibility for the isolation, (due to horrible bullying I experienced growing up) crippling social anxiety, and some truly bad situations I got myself into can also be laid at the feet of my autistic traits.
I’d pondered these things before, and meant to blog about them, but this morning I had this “aha!” moment where I realized that I could view my hEDS through the same lens. Granted, it’s harder to see any benefits or advantages it gave me…
I think maybe it allowed me to be more empathetic about disability than I might otherwise have been; my best friend in grade school was someone I bonded with when we’d both be sitting in the bleachers on the sidelines during PE class. She had really bad asthma, and I was just always chronically ill with one thing or another, including the ‘arthritis’ and ‘bursitis’ that no one ever investigated more closely.
One time when I was about seventeen, I went to the theater with some friends to see a double-feature, so we were in there a really long time. When it was time to leave, I tried to get up, and discovered that I couldn’t. My hips had just frozen up from staying so long in one position that hard seat, I guess. We had to stay in the theater until almost everyone else was gone (the people in the rest of our row having to squeeze past me in annoyance) and then I finally was able to stumble and limp out of the building. I remember being absolutely mortified with embarrassment.
Puberty was a bitch for my joints; other than the past five years or so, it was the most trouble I have ever had with my hips, shoulders, and other joints as well as other symptoms (I think it’s because during puberty, you are on a hormonal roller-coaster, and then during perimenopause, it’s like the same roller-coaster in reverse) and I can’t imagine the experience of dealing with those challenges – as well as how others saw and treated me because of it – would not have had a profound impact in forming the person I world become.
I am sure that my EDS played almost as much a part in my gravitating towards less physically-oriented intense interests – I was not just shy and awkward, but also clumsy and got hurt easily. It may have caused me to be ostracized in school, but it also led to my passion for reading and love of learning.
This month is Autism ‘awareness’ month as most people reading are well aware, and next month is EDS awareness month. In both cases, this means the dissemination of some good information, but also a barrage of negativity and calls for a cure. I think a cure for either autism or EDS, if it actually existed, would involve modifying genes before someone was even born.
What if I lived in a world where that was possible? What if there was a battery of tests that could be done some time after conception that would allow geneticists to edit the genes that would lead autism and Ehlers-Danlos syndrome? Who would I be, with those things changed? Sure, there’d be less pain and social isolation, but would I still love nature and trees and spiders, and devour books as fast as I could turn the pages? Would I have had the same best friend in seventh grade? Would I still be me?
Obviously, if it had been done before I was born, I’d have no idea what was even missing now, but let’s say someone with a time machine offered to go back in time to make those changes?
No. Fucking. Way.
I say that even though I have been on the couch all day today because I woke up with low blood pressure and my POTS is acting up and I am pretty sure I’ve got a bone out of place in my left foot because I wore shoes without inserts. And in spite of the fact that part of the reason I had an extra rough week was because I had to make several phone calls (the horror! LOL) and because my co-worker was making noises and I couldn’t think over the tapping and humming and wanted to throw a stapler at him.
This blog serves as a place for me to vent my frustrations at times, to help me get through rough patches. I wanted to write this all down while it was fresh in my mind, to have something positive to remember when I’m foggy and sore and overloaded.
I like who I am. I didn’t always feel that way, and I’ve made more than my share of mistakes, but I try to be the best person I can be, and I am finally at a point where I am comfortable in my own skin. I will do everything I can to mitigate the negative effects and unwanted symptoms that come along with my genetic makeup, but I wouldn’t take away what makes me me, even if I could.