I had an accident on one of those park merry go rounds, landed too close and got a literal merry go round of kicks to the head. Passed out, idk how long, but longer than 5 minutes. If you're out longer than a minute, you're getting brain damage. And the longer you're out, the worse it is. The people watching me (can't say who after a settlement) didn't bother calling medics, they didn't even notice. According to a witness, a woman with a baby called 2 men over to carry me to a bench and look after me. When I got back to the place, I had a bag of peas on my head and the worst migraine I have ever had. Btw I am saying most of this from other people because I literally don't remember the day at all.
When dad asked what happened, I just said "I fell".
Next day, went from perfect 20/20 vision to not being able to read the clock 3 feet away overnight. My mom didn't believe me at first, saying to quit joking and get ready for school. I said "okay" went upstairs, made it halfway, forgot what I was going for, went back down to the breakfast bar. Mom goes "did you brush your teeth?" Went "oh" and went back up.
That night, mom had family over for a bbq. I was at the breakfast bar, mom said something to my aunt, I think around the lines of how weird I was acting. Asked me to do something, I didn't respond. She asked 3 times, gradually yelling because I wasn't even acknowledging her, my aunt goes "Dianne... I think she's having a seizure."
That's when my absence/partial complex seizures started.
They called the place on the second or 3rd day to demand what happened, my mom found out and fucking lost it.
Cue a year later, (again, recalling what I was told, I don't remember anything past 16 years) my mom is at her wits end from my emotional outbursts and the fact I can't say anything. I didn't understand why I was always in pain, especially after seizures and the fact I'd get violently ill and temporarily go blind as the side effect. She didn't understand why I couldn't speak, despite being an rn....... then in hospice, she got a 6 month old with severe brain damage from being shaken.
She couldn't help comparing me, thinking how lucky she was that at least I wasn't dying..... and would go to the break room to cry over me, and the fact this baby was alone. Nobody visited her, only nurses.
Her outlook changed, went from being litigious to focusing on getting me better and understanding brain damage.
Dad avoided home, I never heard it but the brain injury effected their marriage terribly. Dad couldn't handle seeing how different I was and buried himself in his work, would go on hunting trips often to avoid being home, go roller blading, anything he could to avoid seeing me. Mom was pissed, saying he didn't care, etc.
My sister was like a second mother to me. I'm pretty sure she's narcissistic a bit but she does genuinely care for me. She acted as my teacher since nobody in my town really knew what to do with me. Doctors thought I was essentially retarded, not realizing I could absolutely think, I was just trapped in my own body. Somehow my mom and sister saw this when nobody else did, not even my dad.
I dove into drawing. My mind would draw blanks with words a lot so I couldn't right thoughts well. My thoughts were pretty simple words, usually less than 3 a sentence. But, I saw and thought in gery vivid scenerios, so I started drawing. And drawing, and drawing. I basically drew answers to conversations.
I actually remember my middle school teacher, a cool hippy with a 70s van, who also recognized this in me. He figured out I knew science, I just couldn't remember words. He altared tests with the naming of plant parts and asking you to draw what they looked like. I went from an F to an A+ overnight.
I frustrated a lot of teachers, even in gradeschool. Back then, you weren't supposed to draw in class. They would ignore what my drawings would mean and they were very clear, and they were how I took notes. Classes I was allowed to draw, I had an A in. Ones I couldn't were Fs. Even the principal wanted to hold me back a year several times, but my mom never allowed it and started getting involved, maybe a little too much, but I understand why.
When you can't speak for yourself, get overly frustrated and throw extreme tantrums because of how overwhelming not being able to talk, as well as not even knowing what frustration fucking was, was isolating, scary and lonely. My first suicidal thought was at 11 because of it.
I went from being top of my class in gymnastics to not being able to balance on one leg. A perfect swimmer to not being able to use my arms and legs at the same time (I still can't, I mostly swim with my arms forward, legs on my back. Floating was my best friend and I loved water)
Years between 10 and 14 were absolute fucking hell. You think not being able to talk sucks? Or having seizures multiple times a day resulting in blindness sucks? Lmao try side effects of anti psychotics since they work as seizure meds. I'm the reason Depacote is a severely controlled substance. Shit made me vomit so much I had stomach ulcers and basically vomited blood because of it. I was on that cursed fucking drug for 6 months with the dose increasing. Cuz guess what? Sometimes these side effects were cuz the dose was too low! WELL SHIT DIDN'T WORK AND MADE THE SIDE EFFECTS WORSE NIGGA! Migraines were a given, so was muscle weakness and body pain. But at 14, I was trial tested as the first kid to try a certain anti psychotic. I'm pretty sure my name is in the journal for one of the first kids so I won't say what it is.
But I'll say I took 250 mg of this very strong drug. It was the highest recorded dosage for a child because it wasn't just high for a kid, it was as high as an adult could safely take it. And it fucking worked.
This drug was a miracle for me, I didn't care about the possible side effects of liver failure or certain cancers, it stopped my seizures (but not the activity, different thing) when we weren't even trying for that. My doctors gave up on stopping seizures and were trying to prevent a grand mal. It also has the side effect of killing nerve pain at high doses, but doesn't give you a high feeling. The only real negative side effects for me were how much I slept (close to 16 hours a day) and it made my memory loss a little worse, but fuck it was a win in my book.
Oh and god the tests. I had several in one year where they had me hooked up to a brain scan. I wasn't allowed to sleep, they were trying to trigger a seizure to see what path it took in my brain to see if they couldn't narrow down what drugs to use. 3 fucking days of this. And another 4 with monitoring to make sure I didn't have a major one from triggering it. Can I tell you how fucking gross you feel not having your hair washed, with glue in it, for a week? Or how stiff and painful it is to have to keep your arm straight for a needle because the nurse trying to put it in was incompetent?
On the plus side, the childrens wing was absolutely beautiful, and the food was surprisingly good. I got to fly a lot to different hospitals and I love flying. I also got to spend time with my mom!
When I wasn't allowed to sleep, she stayed up with me on the uncomfortable guest couch that couldn't turn into a bed. She could have easily got a hotel, but she never did. Even when I was older, she would be with me through everything.
My tantrums were legendary at the school. They weren't even funny to kids, which should tell you how bad they were. I was lucky in that kids were extremely nice to me, they bullied me a lot but I think more trying to help me act normal? They always defended me if a new kid transfered and tried giving me shit, even if they didn't like me. Part of the reason I was given shit was because I was a compulsive liar as a kid, cuz again, no impulse control. Got better, thankfully.
My first therapy session with a speech and language counselor was literally just trying to figure out what the fuck I was feeling and nothing else. We learned just how bad my disconnect was at 12 when I was taken to disney world, the overwhelming excitement and happiness didn't feel like it should, it just felt extremely strong and unfamiliar, scary, because I couldn't control it or know what it was. Safe to say, not the most fun vacation, lmao.
Took about a year before I could kiiinda guess what they were, but only simple ones. Second was relearning empathy. I was basically a full blown narcissist who threw fits if I didn't get my way at this point. I could only tell what happy, sad, and mad were by this point.
Empathy took the longest, so we continued other stuff with empathy always next to it. I still occasionally struggle with it but nowhere near as bad as it was. And as I grew up, I grew up with the "be yourself" slogan everywhere, but I didn't want to be myself, I wanted to be normal. More than fucking anything.
I was told, even by my mom, being normal was over rated and boring. I remember one of my first complex sentences being "I'd take being boring over whats wrong with me." And yes, that was considered complex.
I was starting to use my drawing as a crutch, so my therapist wanted me to focus on writing words. Carry a dictionary if you had to. So I did, and I spent the most free time practicing that, which is why I can write rather well and express thought very clearly, even if this whole thing is a mess.
At 14 I started physical therapy, it was hell. Even now, massage isn't relaxing to me, it's necessity and agony when I get it done. So imagine physical therapy, where you're pushing yourself really hard?
I learned from this that my seizures were triggered by physical stress, especially on my body. So guess who never got to do fun shit at gym class? Or play with other kids?
I was too busy at hospitals from 10 to 12, so 13 was literally the only point I got to act like a kid and I don't remember it at all. Naturally my maturity was in the toilet, at 16 I was playing with 10 year olds because mentally, I was still a little kid looking to belong, not realizing how creepy and scary it probably looked. Also didn't help with people thinking I was retarded.
I got called autistic a lot, which frustrated my entire family. I may have similarities but it's different. I've since given up on correcting people but my sister and dad still do.
I didn't see my brother much due to.... reasons. Until I was around 15. I last saw him at 9, so he didn't see the decline. He just remembered seeing me as a happy little girl and then a fucking brat. Safe to say, he resented me. A lot. Here was his youngest sister, who did bad things that if he even half did, he would have gotten grounded (we have a big age gap) I got everything I ever asked for, doting from my mom and sister, they never yelled at me, and I was a brat. He thought I was just spoiled rotten and using my brain damage as an excuse. My need to sleep excessively was just an excuse to be lazy, etc. Safe to say it gave me a bit of a complex over being seen as lazy. I had more than one scolding from him, and it was scary every time. I disgusted him, and I knew I did. So naturally, the tantrums near him got worse! Yelling didn't fucking work but he thought enough of it would snap me out of it.
After mom found out he was forbidden from seeing me for a few years. Sister ripped him a new one. Dad was.... dad. He felt guilty because he was never home, and felt like he had no place to correct my brother, or me, so he just bought gifts and made food I really liked all the time.
I write all this excessively TMI shit to show that this shit destroys families, friendships, self esteem. Most people with brain damage are a lot smarter than people give credit, they're just lost.
I know Andrew isn't 100% like this, but I always go soft on brain damaged people because of it.
After 16 I was homeschooled. Highschool was totally different and I moved middleschools twice, so I barely knew anyone. People from my gradeschool were there and helped when they saw me, but classes of 30 kids from childhood are lost amongst 2000. I had no protection or understanding, this is where I got a very cold reality check that nobody cares why you're different, or act the way you do.
I was excessively harrassed, had my shirt pulled down in the halls, people throwing shit at me, people pushing me down the stairs during a seizure, I wasn't safe and I was seriously suicidal. I didn't even finish my first year of high school.
While homeschooled it afforded more time for therapy. I was actuslly doing a lot better so most of my appointments were down to 1 each a week instead of 2 to 3. At this stage I came across as a bit full of myself/a knowitall due to all the therapy, I basically used words that sounded rediculous. I was being taught the value of things so that I wouldn't ruin them, but it resulted in me sounding like a rich brat if people messed with my things, proclaiming the cost. This made people think I was rich (was definitely mid to bordering upper middle but not rich) and trying to take advantage of me. I was extremely gullible and fell for multiple dangerous beliefs that bordered on a cult. Think Jupiter the Hybred levels of delusional, I would have believed him at this point in time.
I made a shocking amount of progress due to being burned so much at 16, especially once I was away from these environments and had time to just.... think. To daydream, fantasize, write, draw. It's what I needed, and where I learned to put thought to paper the most effectively.
18th bday, felt like I aged 10 years. I was just exhausted. Exhausted of being different, stressed about how much therapy I had done now that it was finished, getting emotionally ready for college (where I still got shit in one of my classes behind my back. Didn't help paranoia but I wasn't throwing fits anymore.)
I got my GED at 17 so I had a whole year to just do nothing and it made me realize how exhausted I was, how little I got to be myself, I was always trying to change. I still was, I didn't know how to turn it off. So being alone helped.
I was reclusive for most of my 20s, I'm now 29 and just becoming social again. My amazing husband insists that I don't work, partly because I don't want to, and also because he knows how fucking hard ai had to work to get to where I even am. My mother died when I was 23, so I lost my biggest supporter and didn't know how to exist anymore. Remember when I said my mom was overly involved? Imagine never doing a chore in your life or having any consequences, then suddenly being in charge of a house lol.
I'm still struggling a bit, but I'm more comfortable and healthy than I ever have been. I don't daydream of how to kill myself 5x a day anymore, hell it's a surprise when it happens once a year. Part of it is really good medication, other is that I basically have a zoo at home to keep me busy. I'll probably never work a job in my life, and I'm not on benifits because I'm seen as capable, since my problems aren't super visable. People don't understand I can't do basic math and struggle excessively with direction, then get overwhelmed if someone is upset with me. Not really the best set up for me. Add on that that I still sleep a lot. Not as much as I used to because I lowered the meds a bit (was tired of sleeping 16 hours) now I sleep in bursts of 4 and need 13 hours. Not the biggest difference but it feels big to me. I actually have energy to do things.
I admittedly get self conscious if I'm called lazy or making excuses still, told I'm not trying hard enough to work since that's what normal people do. It's difficult to say just reigning myself in is a full time job without sounding like a prick so I just eat the insults.
Nobody in the real world cares about my history, and even if told, I'd only get pity. Which I don't want, I deliberately hide it most of the time. I still want to be treated like everybody else, no special treatment. Getting that at school was enough to make me hate it, and I despise that I still have to use different tools to do a slower job than other people, but I'm at least at peace with it now. I feel like working would agrivate a lot of what I worked incredibly hard to overcome, so I'd rather not risk being a burden on co workers and boss, or regress. I never want to be what I was, I even told my husband to shoot me if I ever get that level of injury again, I never want to relive it.
