That’s what I’m going to say going forward until I get a diagnosis. I’m allergic to stupid. Not because it amuses me, though it kind of does, but because that bitterly sarcastic ‘stupid’ is actually the fastest way to describe what triggers my episodes.
I had one Monday morning. I then proceeded to continue working for several hours like the moron that I am, before I told someone. Then I worked a couple more hours before I tried to call someone in because I’m a freaking idiot.
I’ve been having these episodes since about the time I was fifteen. They started in or around my being struck in the head with a pot. The only reason I remember that is because I called my friend sobbing and told her something was wrong but couldn’t tell her what besides I got hit and she chastised me for it.
Which is… oddly the only bits I can actively remember about any other episode.
I know someone called my mother during my (I think) first episode and she probably came and picked me up. I remember her arguing with my father, though this was a later date, about whether it was a migraine or diabetes. Neither of them took me to a doctor. My mother, I think, insisted that my symptoms were exactly her symptoms and therefore it was a migraine but I don’t know if she was ever diagnosed and I don’t actually remember her ever having a migraine.
But she did self medicate with pot for dreams, sleep problems, and headaches so it’s possible given current studies that she inadvertently treated herself for years.
The thing is, I don’t remember my episodes. Not during, not after. There are flashes here and there.
Like I remember my workplace calling my father, back when I still lived with him, and forcing him to come pick me up. I remember being told by him on the drive home that it was my own fault, I had no one to blame but me and that I was doing it to myself. But I don’t remember anything else. I think part of my face went numb. Think being the keyword there.
I’ve had episodes for the past fifteen years. I am struggling to remember any of them. I know last year, I think it was, I walked into the breakroom and sat down as others of my job-level were sitting around gossiping. I remember being asked if I was all right and saying no. Don’t know how I made it home. Pretty certain they didn’t drive me.
That was about the time that I started saying, “I taste static.” How does static taste? Well, it tastes the way it looks and that white noise sound it makes on a television set, that’s how it tastes. Not like pop rocks. A co-worker suggested it might be like pop rocks but I’ve had those and that’s not it.
Since uttering those three little words, I have been able to pick up on several more episodes. Not all are as bad, but I’ll just be standing around doing my job or at home, frown and think, “I taste static,” which is now followed an hour later by, “Oh shit. I taste static.”
Tuesday morning I felt completely hollowed out. The anxiety was high, I was exhausted, and sitting on a bus with an old man with a cane who was thumping it on the floor. Every thump of his cane felt like he was beating me with it and I knew I had to find something to distract myself so I decided to look into Hypergraphia.
I have it, I’ve known for years that I have it, but research has always been spotty at best. Imagine my surprise that there is more research being done on the phenomenon.
Hypergraphia is currently viewed as a compulsion disorder that doctors want to medicate the shit out of because if your brain isn’t normal fuck you and take some medicine. By itself, and if controlled, hypergraphia isn’t a bad thing. There are a list of authors who have had hypergraphia or thought to have had it. Being hypegraphic is like having a wild imagination, or being a rambunctious child. You don’t need to immediately medicate it into submission.
Just shut up and let it do its thing unless it’s interfering with your life. Treat it like you do anxiety. Grunt and say there’s nothing wrong unless they’re screaming and refuse to leave their bed because you shouldn’t treat anxiety unless it’s seriously encroaching on a life and you certainly shouldn’t believe someone has it just because they’re high functioning most of the time.
I also have anxiety. My anxiety prevents me from speaking with my doctor about my anxiety. But then I can’t get her to do a test for my joint pain and that’s supposed to be easy, relatively inexpensive, and possible to spot any day of the week.
Try telling a doctor you have a neurological disorder and you’re told to come back when you have it on video tape, or have a grand mal in front of the doctor. Or your mother yells at the doctor until he gives in…
Sorry. It’s… hahha… it’s actually a symptom of … oh, I’m a broken little toy.
Hypergraphia has been found to coincide, but not always, with a couple of other symptoms. One of them is this one where you talk in circles, or write in circles, but eventually get back to the main point. Your brain takes all these little bits like a jigsaw puzzle and crams the pieces together until it makes a whole that makes sense to you but not always to other people. When it’s really bad, it’s bad.
Shortly before and after an episode, I’m suspecting mine is much, much worse. Like right now. Urgh.
The hypergraphia and spiraling are symptoms that have in the past been linked to temporal lobe epilepsy. I don’t have a diagnosis, my freaking doctor won’t even test my joint pain. Getting her to test for what is still often an “invisible” illness is going to be impossible.
I want to get tested, I do not want to be told I have epilepsy. I wouldn’t be able to drive unless I was proven to have gone six months without an episode. That’s pretty hard to prove from my understanding, and my episodes are caused by undo stress from people who continue to poke me when I repeatedly tell them to stop.
I am perfectly willing to tell you how to handle me, but if you ignore that, the snide tone of voice is going to come out and I’m going to start talking like a crazy person so you go away before you trigger an episode.
For the past couple of years I’ve been noticing days where some objects appear larger than they actually are. It was probably happening before, but I’m now in charge of an area that deals with measurements so I’m just noticing it now. There have been several occasions where I looked down and went, “oh! A quarter!” and it was a dime.
Know what those are?
… signs of temporal lobe epilepsy and possibly of me having a waking seizure.
Gaps in my memory might not be a traumatic childhood… they could be signs of temporal lobe epilepsy.
I’m a freaking broken toy.
I also suffer from generalize and social anxiety. Possible PTSD, the pot to the head wasn’t the only instance. Depression on and off, though to be fair that’s to be expected with everything else. Oh, and mal-adaptive day dreaming disorder. Is it a disorder or a syndrome? I can’t remember.
I like to sum all that up as “I’m an author who is allergic to stupid.” But people think I’m trying to start a fight. I’m just trying not to share my mental health with the world because I know the world doesn’t care.
But what does that really mean?
Well, the hypergraphia means that this post has been swirling around inside my mind for the past three days and wouldn’t go away. As hypergraphia is a compulsion, I can sometimes resist, I am not the worst case scenario by far and have diverted that condition into writing my books. But because of the episode and anxiety that followed, I had to write the post or it wouldn’t leave me alone and would start to physically hurt.
The swirled writing bit, where you talk in circles, is how I got to such a long post without actually making a point. At least I don’t think I did.
That all ties into the mal-adaptive day dreaming disorder which means that I’m really great at creating worlds and have taken to writing about them. But the hypergraphia paired with creativity does not mean talent. I could write a hundred thousand books and I could still die a second rate author unless I attempt to control my compulsions and fix my writing style going forward.
But I didn’t know about the swirled writing before. I read about it, then I went into work and read some of my notes and realized that my “communication problem” was a symptom of my disease.
So now, verbally anyhow, I’m trying to resist doing the swirls but because I keep interrupting my own thoughts I can’t finished what I was trying to say and things are both disjointed and a little slurred because I feel like I don’t exist behind my eyes which is something a normal person isn’t even going to understand.
I’m not crazy, I’ve never been tested, and once this passes I’ll read that sentence and wonder if I was on something at the time.
Because I had an episode, I’m unable to focus on more than one thing. It’s either watching a video or reading, I can’t do both at once because it hurts to try. When I’ve mentioned this to people in my past, and that it frustrates me because I feel like half of me is gone, I have been laughed at.
“Now you know what it feels like to be normal.”
The only people I think less of for not being able to do what I can do, is people who talk like that. It is not normal for me to feel like this. It is absolutely terrifying to be stuck inside my own head and unable to see any patterns. It causes anxiety because it’s just taken me more than my entire morning to do some receiving which normally takes me twenty minutes.
But, haha, normal people do it every day.
I think less of those people because they’re jerks and they should feel bad about how they treat others.
What this all means in the present is that at the beginning of the week I had an episode. The fallout of that episode was that I read up on hypergraphia because it is something I’m slightly familiar with, the new research was a distraction. But reading up on it triggered my compulsion which I can’t distract myself from because I’m unable to distract myself from compulsions. I have nothing but compulsions.
Mainly to weep and hide, but that part is really besides the point.
It all resulted in having to write this blog entry because the words had to be let out before they started aching and because I’m sick of listening to them swirl around inside my head. And I do, I feel better, I feel lighter and just a little unburdened at getting it out.
I’m still pooched for at least a week though. Guess I’m playing video games and drinking like I don’t have deadlines looming. Because sometimes you have to just give in to the crazy. You can’t fight it all the time, especially when your doctor doesn’t believe you have a problem so you can’t seek out proper medication.
Aya DeAniege 