Posted in Developmental disability, Epilepsy, Temporal Lobe Epilepsy

Time hates me, I think.

Image description: Salvador Dali’s painting, “The Disintegration of the Persistence of Memory”, with a graphic of a brain superimposed, the temporal lobes highlighted in yellow, and lightning added to the temporal lobe of the brain. The Dali painting involves a grid of blocks, a beach scene, a dead fish, and a bunch of melting clocks.

The world has just started. It’s as if I have a tiny window and everything else is white. The past is white. The future is white. Lots of things are white, blank, and scary or confusing. I don’t know where I am or how I got here, but I’m used to that. The one thing I’ve got going for me is that somehow, this has happened enough times that I have some inkling what to expect out of the world.

Even with all these resources, I’m scared, but I try not to show the fear in front of most people. I spend my entire life hiding how little I understand. The way the world disappears regularly. And how I seem to be born over and over and over and over and over again. Not just once. But every time life starts from nowhere. Life starts from nowhere a lot.

My imaginary friends are me in the past and me in the future. That sounds a lot more egotistical than it is. It’s more to do with being very isolated.

Time is not my friend.

Time confuses me.

I don’t feel time most of the time.

And when I do, it’s scrambled or running backwards or sideways or something.

These are not small things.

In fact.

I’ve just found out how much of my life this is.

It’s a lot of my life.

More than I was willing to admit to myself.

What I tell you about when it comes to disability is not the same thing as what is going on. I don’t mean I’m trying to deceive anyone. It’s just that I have a lot of different labels. And I don’t respond to them all the same. And I don’t respond to them all in proportion to how they affect my life.

This affects every inch of my life every inch of the way every inch every inch every inch.

I can’t explain.

I keep trying, I can’t.

I can’t explain the sheer distance between the expected shape of how thought works. And then me, over here, experiencing utter weirdness.

And I try so many ways.

I could tell you stories from my life that illustrate things.

I could try to explain what things feel like.

I could give a very clinical, medical-style description of something that for me is not a medical experience.

The last is the easiest unfortunately, because unlike the others, it comes with a template.

I know how to talk about epilepsy.

I don’t know how to convey epilepsy to someone who doesn’t have it.

And by epilepsy I mean epilepsy the significant developmental disability, here.

There’s lots of kinds of epilepsy. I might tell you about it at some point, but if I go into clinical medical talking mode, I won’t get out of it enough to make the rest of this post.

I have kept wanting to make this post.

Because it’s fucking important.

Okay another thing also, so…

This is the version of epilepsy that is a developmental disability.

I am not the only person in my family to have seizures starting in early childhood. One of my first memories is a seizure. Maybe I’ll tell that story later as well.

So many things that could get me sidetracked.

But I don’t know how to say the main thing.

Which is that epilepsy has affected every shred of my being.

And that it may be a medical diagnosis but it is not a medical experience.

And it doesn’t stop when the seizures stop.

That’s the thing. Okay. So I guess with this post I will try to get one point across. That may focus me enough to write this. I’ve been having real trouble writing lately.

So the point is — how much this affects me, and what it means for epilepsy to be a developmental disability.

One day I should also tell the story of how they figured out I had it. But for now I will just say — the first time I saw a neurologist, in my life, temporal lobe epilepsy was on the table as a diagnosis. So it is the first developmental disability with a name that I was ever given a diagnosis of. I was 12 or 13 when they first saw me and started trying to tease out what was going on. Which was not simple by then because things aren’t.

When I say that I have multiple developmental disabilities. TLE is one of several diagnoses I’ve been officially given. Childhood-onset TLE is a developmental disability, and in my case it probably has had more effect on my life than any other developmental disability. Childhood-onset TLE, especially without adequate treatment, can lead to permanent changes in the brain. This can lead to massive losses of cognitive skills, and even create an intellectual disability or other cognitive disabilities that were not there to begin with. This can be permanent even if you get the seizures under control.

That’s how much it can affect your life.

But it frustrates me to describe it this way. I want to tell you what it’s like. What my life is like. As a result of this. And I want to tell you what abilities are affected, because it’s important. It’s important to tell people but it’s also important because I need to keep track and my memory sucks donkey balls sometimes1.

Now I’ve spent so much energy on writing about memory that I can’t even remember where I was going with this.

Oh yeah.

So.

This affects everything.

Everything.

Can’t emphasize enough on the everything.

The kind of TLE that is a developmental disability basically has… a whole range of effects. There’s the effects of having the seizures. Which… I didn’t realize it until recently, but I think I have seizures almost every day, even now. I just didn’t know that some of my seizures were seizures.

When you have seizures every day or more, then the seizures are going to affect your everyday cognition.

When you have complex-partial seizures, which are my main type of seizure. Then you have all kinds of weird experiences. But you don’t know what they mean or what they are. They feel like just part of your life. This can include things like emotions that come out of nowhere and have a strong effect on everything. It can also include other things that would normally be considered psychiatric, like hallucinations and things that resemble psychosis or dissociation.

Those are direct effects of the seizure. But seizures also make your mind not work quite right afterwards, usually. And the recovery time can take a lot longer than the seizure did. So there’s also, if you’re seizing very often, all the effects of being post-ictal.2

There’s also the long-term effects of brain damage caused by uncontrolled seizures. Which is a whole lot of cognitive and memory problems, personality changes, and all sorts of things.

And there’s the confusion of all this happening without really understanding what’s going on. And all the emotional effects of that, as well as emotional effects of the seizures themselves. Which I haven’t even gotten into the half of it.

So anyway.

Just to say — this affects everything.

And it’s biting me in the ass right now. Including my sheer lack of understanding and knowledge of my own condition here. It’s not that I understand nothing, but I’ve never really looked into it as far as I should have, so there’s big gaps in my knowledge.

But everything I find out is telling me this is a huge part of my life.

And right now what’s biting me in the ass about it is medications. I’ve worked really hard at doing my own meds. But I’m simply not capable of some parts of the timing. And that turns out to be behind a lot of my med errors, when I’m the one making them. Anyway, I ended up completely screwing up my med schedule and having to get help every single day to be able to follow the schedule. It’s not that I don’t want to, it’s that my lack of understanding of time meant that I was taking some meds too much, some meds too little, and some meds not at all, and the ones I took were at the wrong times.

It’s not that I have no sense of time. I mean, I pretty much don’t. But it’s not just that. It’s not just having no sense of time, it’s having anything from no concept of time, to a very weird concept of time. Which makes it extremely difficult for me to do anything involving scheduling, timing, sequencing, and so forth. Like with memory, there’s some things about time that I’m actually pretty good at. But unlike with memory, really most of anything at all involving time is screwed up for me in some major way.

So anyway, as a developmental disability, temporal lobe epilepsy straddles this weird thing of medical condition, cause of brain damage, cognitive and emotional and personality things, etc.

I think one of the biggest effects for me has been the way my abilities and experiences are always in flux. What I know, what I understand, what I can do, is always, always changing, and I’m beginning to realize that at least some of that is due to seizures or the effects of having had seizures for so long.

At any rate, I no longer have the ability to even follow what I’m trying to write about in this particular post, so I’m going to post this as-is, and just be aware that there’s a lot I want to say connected to epilepsy, some of which may be unexpected, and I’m just trying to give enough background information to make it make sense.

I also suspect some connection between seizures and delirium for me, but I don’t know what the connection is. I just know I’ve never had a significant delirium that didn’t involve at least one really obvious seizure or clump of seizures somewhere during whatever illness got me delirious in the first place.

But this kind of multiple-post string of things to write is really hard for me, so I can’t guarantee any posts on the matter ever again. Or I might post fifty things today. I just don’t know.

I can tell you though one thing — a reason I am having trouble posting is the memory resets. It’s enough work trying to get through the day with a short-term memory that keeps resetting itself several times a week, and that’s what’s going on right now. It’s just hard to get a lot of writing done in this state.

I wish I could do this better. I can’t.

But this is one of my other developmental disability labels.

I’m scared to talk about it directly in some ways. Especially because of the way people make a lot of very weird judgements about temporal lobe epilepsy. In particular, they tend to pathologize your basic experiences of certain things. Like if you have religious or spiritual beliefs, suddenly it must be because you’re epileptic, it can’t be for the same reason that most of the human race has religious and spiritual beliefs. (Actual research into religious beliefs connected with temporal lobe epilepsy, suggests that when it does affect belief, it can result in extreme atheism just as much as it could result in extreme Christianity or something.)

But, I’ve got to talk about it directly in order to talk about other things. So this is my first post of what I hope is many that I can then use as background for the post I really want to make. (I have two separate posts that require a lot of background information like that, and I’ve been trying all year to write the other one with no success.) But we’ll just have to see what happens.

With my limited posting ability I also really want to post things that are important to me, not just medical information. I mean — important to my humanity. But there are important things about this. And I have to post what I can post, or I won’t post anything. So I’m posting this. Incomplete and rambling and everything. Ruti Regan, a colleague in disability rights, has written some things about being able to post things that aren’t exactly what you wanted to write but that are good enough. I’m trying to learn that particular skill, maybe I’d post more if I didn’t want to get everything exactly right.

So. Again. We’ll see.

But yeah. Me and time? Do not seem to get along. I am mostly oblivious to time, but time frequently kicks my ass, and the ass-kicking aspects of time make it obvious that time or something like it must be happening even if I don’t perceive it much.


1 A Few LOT OF Notes On Memory

To add some detail and clarity here on the memory suckage: Memory is not one thing. I don’t have a good memory. I don’t have a bad memory. I have a memory that is good in some areas and bad in others.

Procedural Memory

My best area is procedural memory — what most people call muscle memory, although it can involve more than just motor skills. It’s stuff you can do on autopilot, whether cognitively or physically. You can tell I have good procedural memory because it’s the kind of memory used for touch-typing, which I excel at.

Procedural memory is also used for playing the violin, which I was so good at in childhood that my doctors explicitly considered it a savant skill. (Savant syndrome is another developmental disability label I’ve been , I seem to collect labels without trying.) I’d have trouble arguing with that given that I was in the junior high orchestra in first grade and first chair first violin by the time I was seven. I don’t retain that skill with the violin, I got out of practice basically. But to have had it at all requires good procedural memory. I have been typing at 120 words a minute since I was 12 years old. So, obviously, procedural memory is just fine, even possibly better than fine.

Deliberate and Conscious Stuff

What gets more shaky is anything involving deliberate or conscious recall. In those areas, it swings both ways. Basically, if something triggers a memory — something reminds me of something — then my memory is fine. Like, as good as anyone else’s, sometimes actually better. But if it doesn’t…

That’s where my memory falls to pieces. Trying to remember things. Then, I have a much, much worse than average memory. As in, I’ve been tested, it’s bad. I test as having pretty significant short-term memory loss in both verbal and visual memory tests.

And like, you know how people always say, “If it’s important, you’ll remember”?

NO.

I don’t know how most people work. But here’s an example of something I didn’t remember:

I have decals on my wall at home. They are a tree with a cat sitting in the branches. They are high up on the wall.

They got there because I was standing on the bed. I am not steady on my feet and a mattress is a precarious thing to walk on at the best of times. This was a bad idea, but it’s the sort of thing I do. Sort of like my mom climbed a ladder with a chainsaw, dropped the chainsaw, tried to catch it, and sliced one of her fingers in half. I do that kind of thing too — I forget my own safety when I’m thinking of something else I want to get done.

So I was alone, trying to put decals on my wall, and I fell.

Next to my bed was a rocking chair.

I somehow fell so that my side hit the rocking chair’s arms hard. I cracked several ribs.

Then I got back up and started working on the wall.

Then a staff person came by. I’ll call him Jack. It was his first day of training and he didn’t know me. He was supposed to shadow another staff person, I’ll call her Jill. But she wasn’t there yet.

So I asked him to help me. I couldn’t reach the highest parts of the tree. I’m short and my osteoporosis has made me even shorter. Jack is tall. He was able to reach the top of the tree. So he got right up on the bed and started helping me.

Jill walked in.

She looked at me.

She looked scared.

She ran into the kitchen and came back with dexamethasone, the steroid I was taking for adrenal insufficiency back then. She gave it to me. Then she asked me what happened.

Only then did I remember either that I fell, that I’d broken bones, or that such an injury always results in a dip in my cortisol levels. (One reason adrenal insufficiency is so often diagnosed in the ICU or the morgue — what often happens is someone gets injured and then experiences an adrenal crisis as a result of the injury, which is then life-threatening, which leads to a diagnosis whether you survive it or not.)

I would not have remembered at all without Jill. It was just about the most important thing I could have told anyone right then. And I didn’t remember. Only Jill specifically asking if I’d been injured, jogged my memory. Without her, I would not have remembered in time to avoid an adrenal crisis. As it was, as soon as my dexamethasone kicked in I was pretty much fine.

Just Plain Weirdness

There are ways in which my memory isn’t good or bad as much as it’s just plain weird. It has odd qualities to it. That’s the kind of thing that makes it clear some of my memory issues are epilepsy-related.

For instance, memory resets.

They happen. My memory just — I wake up and everything is new, and then it takes awhile for me to be able to remember outside this tiny bubble in time.

Short and Long Term Memory

Most people when they think of types of memory think of short term and long term memory. Short term is recent. Long term is more distant. They’re handled separately in the brain and having problems with one doesn’t necessarily mean having problems with the other.

According to someone I know who has a lot of experience with people with developmental disabilities (but is not a doctor, so…), she strongly suspects that I have trouble with the process that transfers short-term to long-term memory. She says I do it slower than usual.

When I tried to look up information about this short-term to long-term memory transfer problem online, I found out this is a known memory problem in people with temporal lobe epilepsy. Go figure. We think this is probably behind the memory resets .

Memory in General

So basically, my procedural memory is great, my conscious deliberate recall (access to memory, is how I see it) is terrible, and all the rest of my memory is somewhere in between.

My pattern of memory problems is pretty common in people with temporal lobe epilepsy, especially people who didn’t get treatment young. It’s more complicated than I just described it, but this is the basics. I just don’t want anyone to get the wrong idea and think that my memory is either better than it is or worse than it is. Parts of my memory are average, parts are above average, but I do have major memory problems and they affect every part of my life.

Oh also, one reason I don’t like discussing my memory problems is because people think if you have memory problems then you can never remember anything. No, I remember some things, some of the time, and in some ways my memory issues are simply a more extreme version of the way most people’s brains handle memory.


2 Post-ictal just means the way a person is after a seizure. In my case, that usually includes some combination of cognitive problems, nausea, pain, and sleepiness.

Author:

Hufflepuff. Came from the redwoods, which tell me who I am and where I belong in the world. I relate to objects as if they are alive, but as things with identities and properties all of their own, not as something human-like. Culturally I'm from a California Okie background. Crochet or otherwise create constantly, write poetry and paint when I can. Proud member of the developmental disability self-advocacy movement. I care a lot more about being a human being than I care about what categories I fit into.

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