Posted in Developmental disability, disability rights, Epilepsy, PSA, quotes, Self-advocacy, Temporal Lobe Epilepsy, Weave of Traditions

I don’t just have one developmental disability.

I hate labels but this post is all about labels. Deal with it.

I do not just have one developmental disability. This is one reason that I identify more with the self-advocacy movement than any diagnosis-specific movement.

So the developmental disabilities that are official in California, where I come from, are: Cerebral palsy, autism, intelleectual disability, childhood-onset epilepsy, and fifth category (anyone who needs the same kind of care and does not mostly have a specific learning disability like dyslexia, or a purely physical disability (except CP).

I have childhood-onset temporal lobe complex-partial seizures. I also have had, less freqently, absence or petit-mal seizures (where you stare and then totally forget everything that happened), atonic seizures (where you drop to the floor very rapidly and usually injure yourself, it is a sudden loss of muscle tone, not a grand mal/tonic-clonic), and myoclonic seizures (where your arms fling out while conscious for no apparent reason). I may have had other types but that is what I can think of.

Childhood epilepsy has affected me more than any other DD I have, I think. It sounds weird unless you have grown up with it largely untreated or mistreated. It hits you with out of place emotions that you start off thinking are real. It makes everything weird and repeaty. It gives me deja vu and jamais vu. Randomly, but usually in clumps. And I have developed the so-called TLE (temporal lobe epilepsy) personality. The following is from Wikipedia:

Focal aware means that the level of consciousness is not altered during the seizure.[2]In temporal lobe epilepsy, a focal seizure usually causes abnormal sensations only.

These may be:

  • Sensations such as déjà vu (a feeling of familiarity), jamais vu (a feeling of unfamiliarity)
  • Amnesia; or a single memory or set of memories
  • A sudden sense of unprovoked fear and anxiety
  • Nausea
  • Auditory, visual, olfactory, gustatory, or tactile hallucinations.
  • Visual distortions such as macropsia and micropsia
  • Dissociation or derealisation
  • Synesthesia (stimulation of one sense experienced in a second sense) may transpire.[8]
  • Dysphoric or euphoric feelings, fear, anger, and other emotions may also occur. Often, the patient cannot describe the sensations.[9]

Olfactory hallucinations often seem indescribable to patients beyond “pleasant” or “unpleasant”.[10]

Focal aware seizures are often called “auras” when they serve as a warning sign of a subsequent seizure. Regardless, an aura is actually a seizure itself, and such a focal seizure may or may not progress to a focal impaired awareness seizure.[11]People who experience only focal aware seizures may not recognize what they are, nor seek medical care

Focal impaired awareness seizures

Focal impaired awareness seizures are seizures which impair consciousness to some extent:[2]they alter the person’s ability to interact normally with their environment. They usually begin with a focal aware seizure, then spread to a larger portion of the temporal lobe, resulting in impaired consciousness. They may include autonomic and psychic features present in focal aware seizures.

Signs may include:[12]

  • Motionless staring
  • Automatic movements of the hands or mouth
  • Confusion and disorientation
  • Altered ability to respond to others, unusual speech
  • Transient aphasia (losing ability to speak, read, or comprehend spoken word)

These seizures tend to have a warning or aura before they occur, and when they occur they generally tend to last only 1–2 minutes. It is not uncommon for an individual to be tired or confused for up to 15 minutes after a seizure has occurred, although postictal confusion can last for hours or even days. Though they may not seem harmful, due to the fact that the individual does not normally seize, they can be extremely harmful if the individual is left alone around dangerous objects. For example, if a person with complex partial seizures is driving alone, this can cause them to run into the ditch, or worse, cause an accident involving multiple people. With this type, some people do not even realize they are having a seizure and most of the time their memory from right before or after the seizure is wiped. First-aid is only required if there has been an injury or if this is the first time a person has had a seizure.

This is Mel again, just to note that focal impaired awareness seizures must be the new term for complex-partial seizures, which is what I grew up being told I had. Back to Wikipedia:

Postictal period

There is some period of recovery in which neurological function is altered after each of these seizure types. This is the postictal state. The degree and length of postictal impairment directly correlates with the severity of the seizure type. Focal aware seizures often last less than sixty seconds; focal with impaired awareness seizures may last up to two minutes; and generalized tonic clonic seizures may last up to three minutes.[citation needed] The postictal state in seizures other than focal aware may last much longer than the seizure itself.

Because a major function of the temporal lobe is short-term memory, a focal with impaired awareness seizure, and a focal to bilateral seizure can cause amnesia for the period of the seizure, meaning that the seizure may not be remembered.[c

Hippocampus

The temporal lobe and particularly the hippocampus play an important role in memory processing. Declarative memory (memories which can be consciously recalled) is formed in the area of the hippocampus called the dentate gyrus.[citation needed]

Temporal lobe epilepsy is associated with memory disorders and loss of memory. Animal models and clinical studies show that memory loss correlates with temporal lobe neuronal loss in temporal lobe epilepsy. Verbal memory deficit correlates with pyramidal cell loss in TLE. This is more so on the left in verbal memory loss. Neuronal loss on the right is more prominent in non-verbal (visuospatial memory loss).[14][15][16][17][18]

Personality

The effect of temporal lobe epilepsy on personality is a historical observation dating to the 1800s. Personality and behavioural change in temporal lobe epilepsy is seen as a chronic condition when it persists for more than three months.[20]

Geschwind syndrome is a set of behavioural phenomena seen in some people with TLE. Documented by Norman Geschwind, signs include: hypergraphia (compulsion to write (or draw) excessively), hyperreligiosity (intense religious or philosophical experiences or interests), hyposexuality (reduced sexual interest or drive), circumstantiality (result of a non-linear thought pattern, talks at length about irrelevant and trivial details).[21] The personality changes generally vary by hemisphere.[21]

The existence of a “temporal lobe epileptic personality” and Geschwind syndrome has been disputed and research is inconclusive.[21]

Okay it is Mel again. Most of the things listed apply to me in one way or another. In fact, the more you do your research, the more you would think (if you know me well) that they had me followed. It is far more a part of me than anything else.

One thing Wikipedia left out, is the development of an intellectual disability later in life, caused by the temporal lobe epilepsy. From the signs, I seem to have done that. I have been told by doctors I have the cognitive status of an infant. And I have been told similar things, including that I will never grow up, by a neuropsychologist who seemed to want to get my parents to put me under adult guardianship. And I know I fit the official criteria.

Hypergraphia is more than compulsive writing. It is compulsive creativity of any kind. I definitely have that.

I’m definitely autistic. But like these other labels, I don’t like being confined to it.

Also, I grew up hearing the words “underlying developmental disability” a lot. I didn’t understand them and they scared me. I wanted to know what it meant but at the time had very little means to ask. They also said that it was severe, complex, unsalvageable, and many other things to that effect.

So basically, CP is the only one I definitely don’t have. But there are other less-known ones like childhood-onset brain injury and fetal alcohol syndrome. Also given that CP is involved, there are people with physical and learning disabilities that would have qualified back in the day. I still feel like my agrin mutation leading to congenital myasthenic syndrome is a developmental disability in and of itself.

But I am part of the DD self-advocacy movement. One of the most important parts of that movement, for me, is the rejection of specific labels. This does not mean we don’t understand we are different from each other. It is just a core part of the values of the movement to put the person first and our disability second. That doesn’t mean disregarding disabilities or important individual differences. It just means we go about it in a different way.

My favorite part of the self-advocacy movement is we seem to have gotten cooperation among very different kinds of people with disabilities. For instance, I went to a live-in rec program. It was hell on earth, but the saving grace was the cooperation. I was being pushed in a wheelchair. People who could walk but unsteadily were allowed to grab my chair. Meanwhile, people who could talk would get the attention of staff. If someone fell, which happened often, people who could walk would go for help.

I have never seen that kind of cooperation among any other group of people with disabilities. Or, as a multiply-disabled (including several DDs) friend said, the DD world was doing cross-disability great, long before cross-disability was a term. We are an accident of history. There is no particular reason for us all being lumped together, other than that historically we were put in institutions for the “feebleminded”. Sometimes also the “insane and feebleminded” or just the “insane”, but mostly they focused on feebleminded.

This post is a lead-in to several other posts. I had to do it this way. Just like I need the words “genderless lesbian” without being a TERF, I need the words to explain my relationship to the different kinds of developmental disabilities.

So this is my attempt to say: I seem to have temporal lobe epilepsy (with other kinds of seizures), an intellectual disability, autism, and some kind of unnamed DD. I also have been called low-functioning. But I don’t live my life as if labels matter. I just need these words, right here and right now, to explain things. At least one further post is planned. I don’t know when.

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Posted in Being human, Developmental disability, Epilepsy, fear, medical, Temporal Lobe Epilepsy

Showing Fear

This is the kind of vulnerability I have trouble doing well. If I give you an explanation of all the details, it’ll mean I won’t have to actually post the post itself. So — a friend told me, and I agree, that a really good post to get me started blogging as myself again, would be this: To think of everything I’m afraid of, and write about that. Even if it’s only two paragraphs. If I manage that — then maybe I’ll explain. But not before, or I’ll never, ever get around to writing about my fears.

Selfie while I was writing this. One of those “cat got too close to the camera” selfies. But does look scared. Because I am.

It’s hard to know where to begin. So many directions. Maybe start small, and easy, and manageable, and keep coming back to this.

Not that there’s anything small, easy, and manageable about fear. Whether the fear is rational or irrational.

Here’s one that seems irrational to me.

I’m afraid of my own medical conditions.

But not all of them. Only some of them. And I don’t always know what makes the difference.

I am not afraid of any of them all of the time, and I am only afraid of some of them, some of the time.

But here’s a couple that keep coming back to haunt me:

  • Congenital myasthenic syndrome1
  • Temporal lobe epilepsy2

I fear these things in many ways and on many levels.

For instance, I fear them both intellectually. Meaning — I’m afraid to do research on them. The fear is intense. So intense that when I was first diagnosed with CMS, I could not read about it no matter how curious I was.

I can give an example from right now.

I was pasting some basic information about these two conditions into my footnotes, to keep them separate from what I was writing.

And I saw a piece of information I’d not encountered before, or that if I encountered it, it wasn’t put in quite this certain way. Here’s what they said:

Some individuals have episodes of breathing problems that may be triggered by fevers or infection. Severely affected individuals may also experience short pauses in breathing (apnea) that can lead to a bluish appearance of the skin or lips (cyanosis).

And it feels like being zapped throughout my body, or splashed with cold water, or something else really unpleasant, every time I read something like this. Every time I read something that is so much like me.

And no this has nothing to do with how long I’ve known. I have only known about CMS for a relatively short time. But temporal lobe epilepsy was the first tentative diagnosis explored by the first neurologist who ever saw me — I was 12 or 13. People were constantly talking about TLE around me my entire childhood after that. It’s not like I missed the fact I have TLE the same way I missed the fact I have CMS (which my type could not even be diagnosed during my chlldhood. I didn’t always receive the correct treatment for TLE but even people who thought I didn’t have it never took the diagnosis off the table because it was so obvious.

But I felt the exact same way.

The exact same way.

When I found out that TLE, especially can result in someone who starts out without an intellectual disability and has one by adulthood… that zap felt like a million volts of electricity going off and then a strong urge to hide under something.

And I don’t mean I’m ashamed of any cognitive or intellectual disability I may or may not have. I just mean that I’ve known for a long time, from just putting two and two together, that it’s only an accident that I’m not officially diagnosed with an intellectual disability. (This is putting aside whether the category even makes sense to me. I can’t both write about this, and use words that reflect my experiences, at the same time. Sorry. So I’m using other people’s words and ideas, they don’t necessarily reflect how I view the world. If that makes no sense to you, deal with it — people sometimes seem to want me to walk them through my brain holding their hands to guide them, and I can’t always do that.)

And I’ve known that it’s quite likely that shifts in my cognitive abilities have made me more, diagnosable for lack of a better word, as I aged towards the various cutoffs. But I didn’t know there were many, many papers on the existence of ID and other cognitive impairments in older children and adults with TLE who didn’t fit such categories as younger children. Because TLE can cause both ongoing processing problems from the seizures themselves (just imagine having your experiences constantly interrupted by everything from lost time to random emotions that don’t seem to fit anything you ought to be feeling to… lots of things), and changes to the brain that stick around even between seizures.

In my case, by the way, my sense of time is heavily affected, my memory is heavily affected, and I suspect TLE being behind a good deal of fluctuations in my abilities.

My second mom says she’s struck, living with me, by the degree of my time problems, memory issues, and visual processing impairments. She knew about them before, but I’ve been here a long time and she’s getting to watch me 24/7 whether she wants to see all this or not. What she sees scares both of us in various ways, I think.

Visual processing issues, by the way, are another disability-related fear that I ought to write a post on sometime. It’s an entirely different fear for entirely different reasons — the fear of the pushback I would get for using the equipment I need to successfully navigate the world the best I possibly can. To the point I won’t get the equipment even though I am nearly positive I would easily qualify, as are other people who know me.

But… yeah.

So there’s this thing about learning about certain disabilities I have that utterly and completely scares the bejeezus out of me sometimes.

As I said — not all disabilities, medical conditions, and whatnot strike me this way. Most don’t.

But when they do.

It really feels like they strike me. Like something is hitting me over the head, or zapping me, or splashing cold water in my face, or doing something else sudden and unpleasant.

And there’s degrees Like, the thing about apnea zinged me a little (I do have apnea, and in particular that little line about turning blue reminded me of a time an LNA walked in on me while I was in bed but awake, stared at my face, looked utterly terrified, jumped a mile when I moved, and then explained to me that my face was blue when she walked in and she thought I might be dead, and there’ve been other times people say I’ve looked blue or grey). but the thing about ID and TLE felt like a full-body jolt that made me want to hide long-term.

And yes — it scares me to tell you this. It scares me to talk about fear in public. But I trust the friend who told me this was a good idea.

And hopefully I’ll write more, because this is only one kind of fear, and I haven’t even covered it as thoroughly as I’d like.

I want to write about another kind of fear related to seizures, something closer to home than this intellectual fear, something about things I keep semi-secret some of the time. Like how much of my life is spent in states where my conscious memory is resetting itself so thoroughly that I can barely look oriented let alone be oriented.

It’s like waking up to a new life — way too frequently — and I want to write about that.

But I’m working up to it. An intellectual fear, no matter how intense and irrational, is still easier to write about than some of the other kinds of fear I have. This is a fear of information. Or at least, information is the trigger.

But there are much more gut-level fears I have about TLE in particular, than just finding out that it has thus-and-such effect on such-and-such other condition in this-and-that ways. It’s the actual experiences of it that scare me, and if I’m looking at disability-related fears that’d be where I went next probably.

There’s also a fear in between the two types… like when I finally find a journal article about someone else with a missense AGRN mutation, only to see a little boy in black and white photos with his eyes blocked out and postures that look like mine or an exaggerated version of mine and… sheer terror and I want to run, and understand I am not afraid of the boy, I am afraid of everything that kind of picture represents about his life and mine, all the stories of public stripping from people my age and older, and… and… and… yeah, that’s its own kind of terror. But it’s also the shock of recognition, the sense of shared experience, and the fear of what he and I have in common resulting in being treated horribly for either him, me, or both, now or in the future or the past or sometime (don’t get me started on time again).

Who knows what I’ll actually get written. But I got this written. And that’s something. No, that’s a lot. I want to write about things that are authentic to my life, not just things held at arm’s length where it’s easy to examine them. And things that are just human being things. People things. Relatable things. Like fear, I guess.

Because I do spend a lot of my time rather terrified of lots of things. And so do lots of other people. And maybe being open about it can give us all more courage.


Footnotes

The reason for these footnotes is to keep huge amount of information out of the post so I can go ahead and write what I’m trying to write without getting distracted by, for instance, medical details.

1 Congenital Myasthenic Syndrome as defined by NIH Genetics Home Reference:

Congenital myasthenic syndrome is a group of conditions characterized by muscle weakness (myasthenia) that worsens with physical exertion. The muscle weakness typically begins in early childhood but can also appear in adolescence or adulthood. Facial muscles, including muscles that control the eyelids, muscles that move the eyes, and muscles used for chewing and swallowing, are most commonly affected. However, any of the muscles used for movement (skeletal muscles) can be affected in this condition. Due to muscle weakness, affected infants may have feeding difficulties. Development of motor skills such as crawling or walking may be delayed. The severity of the myasthenia varies greatly, with some people experiencing minor weakness and others having such severe weakness that they are unable to walk.

Some individuals have episodes of breathing problems that may be triggered by fevers or infection. Severely affected individuals may also experience short pauses in breathing (apnea) that can lead to a bluish appearance of the skin or lips (cyanosis).

As far as anyone knows, I have CMS8, which I’m only mentioning because I remember one of my readers being a genetics geek. I have an AGRN mutation.

2 Temporal Lobe Epilepsy as described (in terms of most common seizure type) by the Mayo Clinic:

Temporal lobe seizures begin in the temporal lobes of your brain, which process emotions and are important for short-term memory. Some symptoms of a temporal lobe seizure may be related to these functions, including having odd feelings — such as euphoria, deja vu or fear.

Temporal lobe seizures are sometimes called focal seizures with impaired awareness. Some people remain aware of what’s happening, but during more-intense seizures, you might look awake but be unresponsive. Your lips and hands may make purposeless, repetitive movements.

Temporal lobe seizures may stem from an anatomical defect or scar in your temporal lobe, but the cause is often unknown. Temporal lobe seizures are treated with medication. For some people who don’t respond to medication, surgery may be an option.

An unusual sensation (aura) may precede a temporal lobe seizure, acting as a warning. Not everyone who has temporal lobe seizures has auras, and not everyone who has auras remembers them.

The aura is actually the first part of a focal seizure before consciousness is impaired. Examples of auras include:

  • A sudden sense of unprovoked fear or joy
  • A deja vu experience — a feeling that what’s happening has happened before
  • A sudden or strange odor or taste
  • A rising sensation in the abdomen, similar to being on a roller coaster

Sometimes temporal lobe seizures impair your ability to respond to others. This type of temporal lobe seizure usually lasts 30 seconds to two minutes. Characteristic signs and symptoms include:

  • Loss of awareness of surroundings
  • Staring
  • Lip smacking
  • Repeated swallowing or chewing
  • Unusual finger movements, such as picking motions

After a temporal lobe seizure, you may have:

  • A period of confusion and difficulty speaking
  • Inability to recall what occurred during the seizure
  • Unawareness of having had a seizure
  • Extreme sleepiness

In extreme cases, what starts as a temporal lobe seizure evolves into a generalized tonic-clonic (grand mal) seizure — featuring convulsions and loss of consciousness.

To be even more specific, what starts as a temporal lobe seizure can migrate damn near anywhere it wants to. I’ve never had a tonic-clonic seizure, but I’ve had plenty of absence, atonic, and myoclonic seizures along with the classic complex-partial and simple-partial that most of my seizures consist of. You can read more about generalized seizures here at Johns Hopkins Medicine. They also happen to have a good page on focal epilepsy (of which my seizures are merely one type) and a decent one at their children’s hospital on temporal lobe epilepsy.

Posted in crossroads, death, Developmental disability, disability rights, family, history, Self-advocacy, Temporal Lobe Epilepsy

Crossroads #05 (Self-Advocacy Sunday)

A walkway leads out into a desert within pink sand, with a sign with arrows pointing both directions sideways. Letters matching the pink sand read "Crossroads."
Crossroads in the California desert.

Dear Cheryl,

Your bone resonance exists unseen
By those who can only
Read the words
On gravestones
Without feeling
The bones underneath

The grave of my dad’s aunt Voicy — he was close to her, she was more like a sister in age (my dad was 1941-2014). May they both rest in peace, and her husband as well. The gravestone is in Rose Bud, White County, Arkansas.
My great-aunt Voicy.
(I think. I’m faceblind and
some memorial websites get her and her
mom confused. I honored both of them
in my name change.)

They would have it
That you were a crip
And only a crip
You almost believed them
And were probably afraid
To say what you may have suspected

But your bones know better
And so do I

Spoken from the bone,
Mel

Posted in Developmental disability, Epilepsy, Temporal Lobe Epilepsy

My aura

A cracked desert landscape.

With epilepsy, an aura — from the word for breeze, because for some people it feels like a breeze blowing over your body — is a mild seizure that gives you a signal that a more severe seizure is coming. So you might go from feeling a breeze blowing on you, which would normally be a simple partial (at least in the terms from the time I knew them — I think they call them something different now) seizure, to a full tonic-clonic seizure. And the breeze feeling would be the aura.

My aura is a feeling of extreme dryness to the point of pain. As if all the water has been instantly drained from my body and I’m parched and in the desert sun. And then time can seem to become infinitely long. And there may be déjà vu, especially if it’s in clumps rather than just once. And any of those things can be an aura for me. I used to have other ones, but this is pretty much what it’s been for a very long time.

Usually if I have seizures with auras, then it’s leading into a specific type of complex-partial seizure, rather than into other types of seizures I’ve also had. Complex-partial seizures are my most common kind of seizure. So for me, it usually runs that it starts out simple-partial (aura) and ends up complex-partial. The difference is that simple-partial seizures don’t impair consciousness, and complex-partial seizures do impair consciousness. But both can be experienced and remembered, either partly or fully, unlike the type of seizures where you don’t remember anything at all from during the seizure.

Auras are useful because they give you a warning, so you can take meds or lie down or stop driving or do other things to prepare for the larger seizure that is usually coming.

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.