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, Things I try to hide

Memory is complicated.

A sentence that may be difficult to understand:

I use my excellent procedural memory to hide wild variation in the reliability of my declarative memory.

Procedural memory, or implicit memory, is how you just know how to do things.  Especially physically — the classic example is riding a bicycle — but other ways as well.  Procedural memory is not only rarely a problem for me, but often a strength.  It’s why I’m such a good touch-typist, among other things.

Declarative memory, sometimes called explicit memory, is the kind of memory you’re generally aware of when you remember something.  You remember facts, and events, and words and concepts associated with them, and those sorts of things.  That’s declarative memory.

Sometimes I gloss over the intricacies involved here and just say I have memory problems.  But that’s not entirely the case, even though it basically functions as memory problems  And it’s not a consistent thing even when it does exist.  And it’s not like I just, across the board, have trouble with memory.  Nor do I have trouble with memory along the lines most people know about to divide memory up into different types.

As mentioned, my procedural memory has been excellent for as long as I know.  So much so that I almost overuse it to compensate for fluctuations in declarative memory.  So much so that I use it as a gateway to declarative memory in certain ways.

This is important:  This is the way cognitive abilities shape themselves around patterns of ability and difficulty that are unusual.  Just like physically disabled children may learn to walk in a way that’s completely out of line with how most medical professionals define how walking development should happen, cognitively disabled children learn to think in ways that are completely out of line with how most medical professionals believe cognitive development should happen.  Then if they notice at all, they frame it entirely in terms of what we can’t do, what delays we have.  They never look at it as another variation on what humans can do.  I love seeing physically disabled children who are too young to be self-conscious about the unique ways they get around.

Anyway, back to memory.

So, my memory issues are probably in several areas, but the biggest one is simply a voluntary retrieval issue.  In other words, it’s more about my general inertia than about actual problems with memory.

Inertia, for me, is all about volition.  Which is the ability to do things, directly, on purpose.  It’s not about the want to do things.  It’s not about the ability to do the things if the ability is triggered properly.  It’s about getting from want to do.  Most people have very little idea that there can even be a gap there.  For some people, that gap is so wide that we get various medical labels: catatoniaParkinson’sapraxia.  For some people, the gap is wide enough to cause trouble but it goes unrecognized,

Anyway, one very under-recognized thing about inertia is that it doesn’t stop at the connection between thought and action.  It’s not just the inability to stand up and move when you want to, or the inability to carry out a complex plan.

There’s a handy chart that I always pull out at these times.  It was developed by Martha Leary and Anne Donnellan.  They developed it eons ago to quickly explain movement difficulties — where movement is understood to involve a lot more than just physical movement:

Marked difficulties in: Starting, Stopping, Executing (speed, intensity, rhythm, timing, direction, duration), Continuing Combining, or Switching. May impede: Postures, Actions, Speech, Thoughts, Perceptions, Emotions, Memories. Martha Leary & Anne Donnellan, 1994.
Marked difficulties in: Starting, Stopping, Executing (speed, intensity, rhythm, timing, direction, duration), Continuing Combining, or Switching. May impede: Postures, Actions, Speech, Thoughts, Perceptions, Emotions, Memories. Martha Leary & Anne Donnellan, 1994.

Anyway, you’ll notice memories at the end of that list.  Like thoughts, perceptions, and emotions, those are not what people normally think of as actions.  But they are actions.  My inertia is across the board, affecting all of the things on the right-hand side of that chart in different, extreme ways.  And memory is far from unaffected.

So I have what seems to be an inconsistency to my memory:  I can’t recall things on purpose, and at any given time I can’t recall most things.  When people see this, and they see it often, they say I have a terrible memory and leave it at that.  And I test badly on most formal tests of memory.

But.

If something happens to jog that exact same memory I couldn’t recall to save my life before, I will not only recall it, but recall it with more precision and accuracy than average.

Since memory is imperfect and fallible for literally everyone, I haven’t just gone by what it feels like.  I have looked for instances where my memory of things can be corroborated by documentation that existed at the time, and compared my memory of events to the memories of other people I’ve known.  Generally — not always — when I have access to a memory, my memory is extremely good.  Including my memory for extremely distant events, earlier in my life than I’m supposed to remember anything.

Good doesn’t mean perfect.  It just means good.  My memory is as fallible and malleable as anyone else’s.  Anyone who thinks theirs isn’t is fooling themselves.  But I often remember details others don’t, and I remember things more accurately on average, when I do remember.

I cover for the lack of access to most of my memories in a variety of ways.  One is by relying on procedural memory for more than most people rely on it for.  This gives the impression of more competence.  I also can often memorize a vague description of something even if I don’t actually remember a thing about it at all.  And I rely on what I can remember — if you can remember something, people assume you can remember everything. And people don’t expect people to have the massive memory gaps I often have, even people with memory issues.  I also find ways to trigger retrieval of memories indirectly, but I can’t always do that.

So there’s a problem of access to memory that has to do with inertia.  And inertia is all about the difference between a voluntary thing and an involuntary or triggered thing.

But there’s more to it.

Sometimes my memory of the world shrinks so extremely that I can’t remember or perceive anything outside of what I am perceiving in the moment.

Often, events and sensory input that are too much for my brain to process, crowd out memory and mess up something about my ability to remember recent events (past few weeks or months at least) clearly.  After a time (days, weeks, months), those recent events come back into memory.

When I’m delirious, I’ve lost memories .  Sometimes even after I’m not delirious anymore they never come back.  I’m lucky I can remember the period around my father’s death, because several months later I lost it all while delirious.  When I got better I got back that period, but lost a couple months in between, never returned.

But at any rate, with all this going on, it is not unusual for the whole world to be new to me, my only guides for how to behave not consciously available to me, some pattern laid down by decades of repetition of this process so that I can normally function.  But where the entirety of time besides now is blank, and the entirety of the world outside here is blank, and I am starting anew, all over again, until memory comes back.

And it does come back.

But the world is a very weird, scary place when most of is blank.

Especially when I can perceive something is supposed to be there, out in the blankness, but all I can find is white nothingness.

I have recently begun telling people about this because my friends have told me to hide less from them.  But it’s frightening.  I am concerned if people knew the extent to which this happened, they’d see me as incapable of making decisions.  And that’s dangerous.  There are reasons i cover for it.

But understand that I am always covering for it.  This never goes away.  It’s never not been there.  There are additional issues over the years what with delirium, but this happens all the time.  It happened to me pretty extremely this week because of an overly long, tense medical appointment.

And I’ve given you the simplistic version.  There’s a lot more to it than this.  Sorry for all the technical language, but it’s more precise than the language most people use for memory, and I needed that.  And I need to be more open about how my mind actually works.  There’s a lot of things I have trouble doing, or do very differently than usual, that I am always covering for out of fear.  I’m tired of covering for thm.

 

 

 

Posted in Things I try to hide

I hide what I don’t know when the blankness is huge.

A lot more of the time than I let anyone realize, most of the world is blank.  Most of what happened is blank.  Most of what is supposed to be background knowledge is blank.  Most of the past is blank. Lots of the present is blank.  Lots of things are blank.

And to let anyone know is terrifying.  Because I don’t want people to ever realize how much I sometimes don’t know at a given time.  I’m afraid of what would happen to me if people knew.

The world starts fresh over and over for me, fresh from a moment.  I start not knowing where I came from or what is happening and I wing it.  Over and over.  I am good at just acting in the moment and not letting on that I feel I just appeared in that moment.

Eventually, eventually it all filters down into awareness, memory, and I can write about it:   I just appeared where I am.  I don’t know how I got here.  I don’t know what led up to here.  Everywhere I look is blankness.  This is a common thing.

And I may not pass as not cognitively disabled but I sure as hell try to gloss over the extent.  And since people don’t expect such level of blankness it works in some circumstances.  I haven’t even managed to convey the half of it.  But I probably never will.  I’ve tried.  Hence this.

So what do I do?

Hold onto a familiar rock and hope that things beyond the rock will be familiar again one day and the world will expand again and not everything will be blank.

Photo on 6-18-18 at 6.24 PM.jpg

When I can remember the rock.

Posted in Being human

The other kind of memory.

A mishmash of tree branches, roots, and forest floor, with a very fuzzy image of a child in the background.
A mishmash of tree branches, roots, and forest floor, with a very fuzzy image of a child in the background.

Memory is important.

But your own personal memory is not necessary.

The best of human memory is fallible, changing, and fickle.  And memory can fail.  In so many ways they can’t be counted.

It can be frightening when memory disappears.  In all the ways it can disappear.  Temporarily.  Permanently.

Memory is not what defines us.

We are still here even when we can’t remember.

And the world remembers for us.

Everything we are, everything we have done, everything we have been part of, everything we have affected.  Those things are still there in the world.

Our mind may fade or distort or completely eliminate the events but the events, and we in them, are still there, embedded in the world.

Memory is useful, important, valuable.  But our memory is not the only memory.  There’s a deeper memory, a longer memory, a memory that doesn’t require anything of us.

And in that memory, nothing is forgotten, and nothing and nobody is invisible.