Disability Pride month is almost over, and I wanted to share my story about my own experiences with disability.
I have autism, ADHD, TBI, PTSD, deafness, and a few others! 🤟
Under the cut:
Here's my story:
When I was born, the doctors gave my mom drugs to cause contractions because I was sleeby and very late, and it wasn't until my mom almost died that they found out I was in the wrong position and couldn't be born naturally, while also being choked by the cord. (I was covered in bruises until I was like, 2.) I sustained a mild TBI from that and I was lucky I guess, because it could've affected me differently. (My mom also didn't know she was pregnant for a while and both parents had/have substance abuse issues. I had a rough start lol)
As a kid, I started reading and speaking very early, but I would only talk about things that I cared about/infodump. I clearly had attention problems--I couldn't focus on something unless I was absorbed by it. I had meltdowns because of sensory issues regularly. I also had a speech impediment and a weird accent that I got speech therapy for for a year.
My parents were told I was likely autistic when I was about 5 or 6, as I would only show 2 emotions: unabashed joy, and meltdowns. Otherwise I just...look angry lmao. I went through a lot of bullying in school and ended up being diagnosed with depression with generalized anxiety disorder by the time I was 11.
I've always had horrible coordination issues/apraxia/dyspraxia and I still struggle with it daily. I've broken so many bones y'all 😅
I was diagnosed with autism and suspected ADHD when I was 13 and again my parents did nothing with that. The school offered services because I was struggling, even though we were a low-income family in a small low-income school with grades K-12 in one building they did what they could to help. I was in special education classes as well as advanced classes at the same time until high school when I switched to all advanced/college level classes. One therapist at school helped me learn ASL to deal with the speech generation issues and I am forever grateful for that.
I've been writing stories since I was 6-7ish and writing to communicate was my favorite. By the time I was in middle school I learned to mask, and I studied people and psychology obsessively so I could understand why people did things. I didn't have any friends until this time although I did try (but no one else wanted to pretend to be a dog or a mage or play DBZ with me, well fuck you too! 😜)
My parents tried to get me to be normal so they forced me to join a sport when I was 8. An dyspraxic 8 year old playing softball lmao. I hated it. My dad wound up coaching the team 2 years in, because I was getting bullied BY THE OTHER DAD COACHES hahaha. I was forced to do that for 7 years.
I joined the bowling team in middle school of my own accord, and ended up being like the "backup team" where it was literally 3 of us from the special ed class 😂but I loved it! I got to hang out and bowl and everyone was really supportive there. I made some good friends for the first time.
My parents forced me to get a job and pay rent starting on my 15th birthday and of course I started working at the mall, on Black Friday, in retail. I am great at masking in very short bursts, literally just acting a script, and this is why I only feel comfortable leaving the house if I'm in character 😅So job interviews have never been too difficult thankfully. I had to get out of the whole abusive house situation ASAP so I started full time at an auto shop on the corner of my street the same time I started college, bought a used 2-door black Pontiac Grand Am from some guy on Craiglist with my own money, and moved out when I turned 17. I moved in with my best friend at the time who was also autistic, into a house we were renting from a friend's mom who was in the military.
I started experiencing chronic pain around this time, and had my first Meniere's flare up the first month of college. I was diagnosed with Meniere's at 18 as well as migraines, but my dad and grandfather had the symptoms start around the same age and they were never diagnosed, it was just considered "genetic hearing loss." Basically I have flare ups where I get too dizzy to sit up and my ears go out completely, then when they open back up it's never the same as it was before the flareup. It's been 10 years of this and I'm completely deaf in my left ear and half deaf in my right ear. I wear hearing aids and without them I can't really understand sound, and because of the nerve damage I usually can't tell where sound is coming from when I hear it, which is...an experience lol.
When I was 23, I woke up one day with a huge blind spot (scotoma) in the center of my left eye. I still can't see out of it. I started having other nerve issues in other parts of my body, they did a bunch of tests and found significant weakness in my legs which were also spasming, and all that improved over a year. I am still in the "we have no idea" zone for MS, after MRIs showed possible lesions but it would explain a lot. 🤷🏻♂️They told me it could be fibromyalgia or a virus too, but who knows at this point. Just a lot of inflammation.
I personally think a whole lot of this is caused by burnout. The timing is suspicious...
When I was 25 (2019) the nerve issues came back with a vengeance and it corresponded with an extremely stressful job situation. I went through the same tests, which were all inconclusive, again. I have extreme pain in my hands, hips, and feet during these flareups where I can't walk at all or sleep or move, and my ankles will go so numb I get drop foot in both feet and have to wear braces. 😅Eventually the nerve inflammation heals and it takes a few months, but its never the same after.
During this time I also experienced a mental health crisis, SI, and a rapid decline in executive/cognitive functioning due to burnout, because I'd been working full time for 8ish years at that point and autistic burnout is a real thing. I haven't really recovered from that honestly. Which makes work and being alive change to "Expert Mode" from "Hard".
In April 2021, I fell in the shower and sustained a skull fracture w/ moderate TBI. I am much more emotional now than I was before the TBI, my memory is worse, and my migraines have been worse since.
I can't shower unsupervised anymore. I can't do most things unsupervised except work and drive. (I may have issues, but I have always been a damn good driver! I honestly think it's because I played Grand Turismo with my dad's pedal and brake set on PS 1 for years!)
Even before all of that stuff, I knew I could never live alone. I've always lived with friends who knew my situation, and I moved in with my husband 2 weeks after we met and we've been living together since. (10 years now!) I can't do a lot of stuff like cook or use scissors or lift heavy stuff, and I have meltdowns where I will hurt myself without meaning to, it's just always been that way. I can't go out on my own either except for short trips like appointments, due to the fact that I will completely dissociate when I'm overstimulated and my brain function just ceases to exist. I get stuck often (autistic catatonia).
I am now 28 and I'm hanging on to full time work by my last thread. I am grateful I work from home doing software support, but any kind of full time work gives me burnout, which turns into inflammation and physical stress, which makes work harder, etc, it's a lovely spiral! Therapy has been helping me a ton. I've been in all kinds of therapy of my own accord over the last 10 years, and I currently work with an occupational therapist and a therapist who specializes in neurodivergent adults with PTSD.
Without working full time I can't afford therapy and my long list of meds that keep me functional (I can't work without a VERY delicately balanced cocktail of stimulants, benzos, hormones, antidepressants, and THC. I absolutely HATE this with a passion, if I didn't have to work full time, I wouldn't need all the drugs.) There's going to be a day where I wake up and cannot work anymore, and it'll be sooner than later. When that day comes, we'll just have to move to somewhere less expensive and/or back with our wonderfully toxic families. /s
(That's what being disabled in America is like when you're white and have "level 3 autism" and come from a low-income family with many substance abuse problems.)
My husband is neurodivergent too, he's autistic and has ADHD. He can't mask his stimming much, and he's not very smooth socially (its adorable) but he doesn't have the executive function difficulties I do and he does not have apraxia, we're all different! I always get "fake mad" at him because he does things so perfectly the first time, like making the bed or baking or even wiping something off I'm like whoa 👀. It makes me ANGRY 😠/s.
Whatever, he's lucky he's cute.
I can't end anything on a depressing note so I will say that I've grown a lot as a person just in the last 2 years especially since the PTSD diagnosis, and my relationship with my partner is a miracle and I don't believe in that stuff. He has always helped me with everything, selflessly, since day 1. (He's the reason we haven't had to hire any outside help yet, he does the supervising and I don't mind one bit! 🥰)
Writing has always been a very cathartic activity for me, and I started doing a journal "as Vegeta" as a way to help my anxiety. Those journals are being stitched together into my fic on AO3 called "Chances" (linked!) which is goofy self-projecting fanfiction but Vegeta and Goku's characters are literally just me and my husband, 1:1. 😂He learned ASL for me, and we always have a blast in our little corner of the world. Our entire mission in life together is to just have the best time possible, responsibly, because life is short.
But yeah that's my disability story! I can't write anything short so if you made it to the end, here's a cookie 🍪and 🤟. If you're my internet friend, maybe this will help you get to know me better!
