Diagnosis?!? Part two.

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So to recap, in part one, I speak about the signs. The signs I see with 20/20 hindsight lead me to not only believe but embrace the fact that I am autistic. Signs I probably should have seen a good while back but didn’t. Warning, this blog will speak of hypermobile Ehlers Danlos Syndrome and the dislocations and other things that accompany it. I will mention burn out, eating disorders, drugs, drinking etc.

See, I’m not exactly sure why, or if it is “normal” or not, but I really do not remember very much of my early childhood. Memories of the first 5-10 years of my life are sketchy at best. But the snippets I have I spoke about in part one. There are memories of various abuse, but that is a topic for another time.

photo of the one part of the hEDS criteria

I always knew my body was a bit different than the others were. I was more “bendy” than anyone else I knew. They used to call it “double-jointed” when I was much younger, though it is pretty much impossible to actually be “double-jointed”. I could bend backwards while standing and touch my hands on the ground with ease. I loved gymnastics at school. I also tried ballet when young, and though I was flexible enough, I was told I could never go far as my “body shape” was wrong. I never understood until I became much older that she was talking about my bum. Funny enough another thing I never quite understood was the fascination many seem to have with it over the years! 😀

I had many dislocations as a child and was in a leg cast twice because of my ankle “popping out”. I was running and stopped suddenly, and it felt like my ankle just fell sideways, and I hit the floor. I must have been 9-10, and within a week or two of the cast coming off my leg, it dislocated again. I loved freaking people out with my tricks, making my hip pop out, twisting my hand entirely around—those with hEDS reading this know exactly what I mean.

hEDS is why my hair, never took any of the perms my mother made me sit through. For years after having my braces removed from my teeth, I still had reoccurring nightmares of the pain. It is also why no one now would ever know I had braces for over 2 years and why 5 years after my braces were removed a dentist was still removing the glue from my teeth and explaining why my enamel was massively affected. But as a teen and young person in your 20’s, what do you care? I didn’t think hEDS really impacted my life, plus mom took me to all the doctors when I was young because she knew something was very different about me. But no one had a clue and just said I was ‘double-jointed”. No one mentioned Ehlers Danlos.

No one mentioned Ehlers Danlos when I collapsed in PE at high school and couldn’t walk because of the intense pain in my back, for days after. Years later, I was told I have two fused vertebrae in my back, I now believe it was in this PE class that damaged happened, and the result was the vertebra fusing. No one mentioned Ehlers Danlos when after intense neck pain, I suddenly could not feel half of my face as a young person. The specialist mom took me to see if my spine was curving as it seemed to be, wasn’t sure if I was developing scoliosis or not, but didn’t think so, didn’t mention Ehlers Danlos. Meanwhile today, my spine is literally curving in two directions, side to side and back to front. Trust me to have a very unknown at the time, genetic condition.

gymnastic post

There were some serious positives to having hEDs when I was in my late teens until I became pregnant at 29, though. I have to admit that because it’s true. I loved to dance. Absolutely and completely loved dancing, so much so that my friends and I, as teens, would dance on the boardwalk in New Jersey by the rides that played the best music.

We drew crowds. People clapped. We were asked if we were professional dancers and would laugh our asses off. We were just having fun. It was the 80’s, and we were goth/punk/post-modern teens. The buzz was being out in public dressed as we wanted, doing what we wanted, like dancing by a ride on the boardwalk. The buzz to me of dancing is losing myself entirely in the music. I feel music and move, always have. We went to school dances, all ages gigs, snuck to NYC even to see a gig. Music was my passion and certains artists, my special interest. I would follow certain bands and artists from gig to gig whenever I could. I would wait patiently with my tape recorder poised to catch the latest single.

Signs maybe?

Being in a small all-girl school, albeit catholic, was probably the best thing my parents ever decided for me. It took about a year, but I found my tribe. People I am still close to today. We are not a large group by any means, and again, signs(!) I see why it worked for me then and still does today. We accept each other unconditionally. Being in this small school probably saved me in ways I’ll never know entirely. I did not have to navigate a typical high school with the noise, many students as well as the unfortunate bullying I’m sure I would have endured as I did the last couple of years at my grade school.

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These high school friends helped me through the darkest period of my teens. At that point, I was already developing an eating disorder. Looking back, I see now it was a way of gaining some control in my life. I didn’t feel I had. My father died suddenly of a massive heart attack. It was a weekday, and I was at school. I found out by being called to the phone by my principal/headteacher. My mother told me that my father had a heart attack and was rushed to the hospital. She was collecting my grandmother, my father’s mother and going to the hospital. I was left to finish my day at high school and then take the hour-long bus ride home to my mom’s empty apartment and wait.

The rest is a bit of a blur. I remember playing the U2 album I had over and over again. Consequentially it is still difficult to this day to hear that album and a specific song on it. And I remember the call from my mother telling me my father ‘wasn’t going to make it”. I really remember little after.

See, I was the over emotional one, as I mentioned in part one. So from soon after that call until after my father’s funeral, I was medicated. I wasn’t medicated by a doctor, but by the family friend I babysat for. I cannot tell you what I was given. But looking back, I feel it made me disassociate further. At the funeral, I remember being so worried about my friends who came. They were so upset and apparently I then proceeded to try and comfort them.

My family kind of imploded at the death of my father, regardless of my parents being divorced. They indeed were best of friends. The death of a family member is horrific enough, but I was only about 15, and he was everything to me. The impact was devastating. The other family members in their own pain and grief meant things worsened. I was in a blur. I didn’t care. I didn’t feel. I didn’t think. I was anorexic and bulimic, walking around with the means to end my life at any time. I was left alone at school by the teachers and senior staff, and if it were not for a friend’s concern, I would never have even seen the school counsellor who came once a week. I even struggled with art, the one class that always brought me peace and that I loved.

Sadly, my grieving process was interrupted, and I was finally grieving, but I also believe this was my first autistic burnout. The disassociation that left me feeling I was barely being, I think was a burnout. So, it was both. (Signs again!) The counsellor did not really help more except help me realise I could not go on as I was. I left home, and by my senior year, I was living with a very close friend and her family. Slowly I was able to find an identity that fit and felt some what authentic. I dyed and cut my hair, wore my black leather jacket and boots. Shortly after I started getting my tattoos and piercings and felt even more authentically me.

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By my late teens, I seemed to be able to mask well enough to get work and move out into the city into a house with various roommates. I knew what was expected and in interviews would adopt the “persona” necessary, as it were. It was an unconscious act I see now. I worked in restaurants. Although my math skills are genuinely appalling, being a waitress, hostess or bartender meant working kind of for myself, interacting with the public briefly and purely with a purpose of serving them food or booze. No prolonged interactions and you leave with 20% plus in tips. And I was good at it. It also meant that I could walk out of one job and virtually immediately find another, as well as the ability to people watch. Carrying three plates on one arm and a tray of drinks in the other? Easy, thank you hEDS! Oh, and did I have many many jobs in my 20’s.

I should point out here that from High School I was to go straight to university. The whole process seemed to be taken out of my hands before I even graduated High School. I wanted to go to art college but it seemed that was never an option. So, I ended up at a huge university, where I walked into my first “class” not realising it was in an auditorium with what seemed like hundreds of other students. I walked out in under 15 minutes and never returned. I wondered why that setting felt so overwhelming, It isn’t like I had not had that experience of being with hundreds of others in the same space. I thought it was because I went to a small high school and put it down to that. But now, realising I am autistic, other feelings have emerged, and I see that experience in a completely new way. I realised now that it was me, realising there was no way I would have survived that university. I hated the rush in between classes at my tiny all-girl school, there was no way I would be able to navigate the vast campus and the many students going from class to class. Signs anyone?

Revival, Philadelphia.

Working in bars and restaurants meant also living more at night. I have been what is called a “night owl” my entire life. I have always been more productive later in the day and into the evening then early mornings. So, what do you do once finished work after midnight and still wide awake? Well, I’m not sure about lately, but back then you headed with your friends to various places, a party, a friends house to drink, a bar and if you were me, most night ended up in a local club.

To enter any club or bar serving alcohol in the states you had to and still have to be 21. I started clubbing when I was 18. Unlike many other teens around me at the time, I didn’t drink or consider doing any drug until I left high school, though I was smoking by 16. It is easy to sneak cigarettes when they are always around. That all changed when I moved into the house in the city.

I am thankful that I do not seem to have that much of an addictive personality because from 18 years old until I was about 26-27, I did a lot of experimenting with various drugs. Alcohol was never a big pull for me. I enjoyed being tipsy but hated the feeling of being very drunk and still do. But drugs that made it easier to “socialise” and dance were my go-to. Being a “party girl” numbed a hell of a lot. (Signs.. again) I virtually lived at a club for almost a year straight if not longer, going every single night they were open.

I also moved to the UK at 18-19 and lived in, of all places, Stoke on Trent for just under 2 years. But we will save that for Part Three as there is till quite a bit more to tell and many more signs…

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