Prompted to look at this again, I couldn’t help but be impressed by how many common effects of brain injuries overlap with problems I already had to varying degrees.

I am not so big on the grief model used here, and prefer to think in terms of adjusting to changes. But, I did find this helpful when I was trying to learn more as an adult about an injury in my teens that just never got addressed then.

That was from postsurgical intracranial swelling. I was on heavy doses of steroids for months, to try to minimize the damage. Of course there was some, before they even noticed the problem. But, nobody wanted to admit the obvious. I didn’t have a spectacular knock to the noggin, or obvious alarming aphasia or anything like that, so yeah. I can sort of understand why some medical professionals might have been concerned about liability if they even admitted there was a problem, but my parents didn’t have that excuse (however shitty).

All too often, loved ones say things like “Control yourself”, or “Think how lucky you are to be alive”.

They may mean well, but statements like these only perpetuate grief.

Or at least make it a lot harder to come to terms with the changes, or get any kind of help/accommodations in doing so. The second there was the kind of response I kept getting if I mentioned any concerns about what was going on: denial. And some symptoms getting treated as psych problems. (With some meds making the situation a lot worse for someone already dealing with cognitive problems.) Also a decent bit of impatience, and sniping over things I really could not help. Some of those are continuing effects, not surprisingly.

I mean, it’s kind of weird needing to try to come to grips with something you’ve actually been living with for that long, as sort of the proverbial elephant in the living room. It’s still hard to sort out how much of which difficulties might be coming from what, maybe especially after this long. But, looking into it some did help me feel better, even if that did start over a decade after the fact.

And I’m at least clearer now that I really cannot magically make these problems go away through trying harder or finding the perfect antidepressant or whatever. Same goes for whatever that extra layer of problems got laid on top of. Them’s the breaks.

Amusingly enough, I was looking for this maybe a couple of weeks ago, and it just got another note.

Pretty good intro.

When I want to explain my cognitive impairments to people unfamiliar with (or who think they’re less ignorant than they are about) developmental disabilities, I nearly always tell them to just imagine I have a brain injury. If they’re familiar with brain injuries, it works remarkably well. Sometimes I also mention that the first words out of my doctor’s mouth when my mom gave him a developmental history were “idiot savant”, because as crude as that term seems nowadays, it accurately captures the full range of ability and difficulty I can have.

Also I do have actual brain damage.

Temporary personal history tangent, okay to skip, will put another bolded note at end.

Weirdly, I don’t have brain damage from one area some people think I do. I was in an abusive relationship at one point. When looking for convenient scapegoats for other problems I was having, some people started a rumor that he kicked me in the head. Never happened but they tried to convince me I’d repressed it (this was the minutes) until I believed it happened. But it never did. The rumor has since grown to slamming my head through a wall and throwing me headfirst down a flight of stairs. Also never happened. How the rumors grew from the actual adolescent boy with a bit of a temper to a dude capable of all that I don’t know, but for awhile there’s been this idea that he somehow gave me brain damage. He didn’t. Also we’re on friendly terms these days, that was a LONG fucking time ago and we were both kids. And if nobody else knows what did and didn’t happen, we do.

That particular set of rumors was the unholy union of several things: Family members looking desperately for scapegoats for things wholly unrelated to that relationship, because the actual answers were much more uncomfortable for them. One tiny grain of truth (abusive relationship happened). Some opportunistic bullies who were quite inventive with gossip and found a uniquely fertile situation for creating multiple conflicting rumors and drama. And some relatively innocent bystanders the bullies could convince that they’d seen things they hadn’t actually quite seen. Plus me, who was crazy and repressing memories therefore had to believe and repeat anything I was told or else I was"in denial" (did I mention the main bullies were psych majors?). Total mess for all involved.

So I have brain damage from everything but the one thing some people think I have brain damage from, it seems like. Oh yeah and I don’t have brain damage from drug abuse, that’s another rumor started by the got kicked in the head crowd. The actual reasons I was burned out and going crazy don’t appear glamorous or interesting enough to some people, I think. So they have to invent stuff that isn’t there to explain shit that’s actually relatively simple and straightforward.

End temporary personal history tangent.

Anyway, there’s a lot of overlap between brain injury/stroke/etc. and developmental cognitive disabilities. So much so that sometimes the same words are used to describe the same difficulties. This is controversial, however, because the words were developed to describe disruptions to the actions of otherwise typically developing brains. And there’s real reasons to believe that this isn’t the same as difficulties that arise within the normal course of development for an atypically-developing brain.

So like, while it may be really tempting to describe some things about my information processing as agnosia, it might not be fully accurate. Because agnosia is a term to describe damage to a brain that never had this problem before. Which may be a totally different phenomenon than whatever makes it hard for me to, for instance, visually recognise and identify objects. May even be completely different processes and parts of the brain involved. Developmental agnosia and acquired agnosia may not even be the same thing at all. Same goes for use of terms like apraxia, aphasia, on people with developmental disabilities.

That said, brain injury is the easiest way I have to explain my patterns of skills and difficulties to people unfamiliar with developmental disabilities. “Pretend I have a brain injury and I’ll make way more sense” generally provokes a response like “Wow you’re right.” And I learned to understand my cognitive disabilities more through concepts (like agnosia) I heard of through learning about brain injury and stroke.

And also I do have at least three kinds of actual brain damage, in addition to whatever developmental disabilities I have, because who said life was simple? (And since head-banging, overprescription of neuroleptics, and severe medical neglect commonly go along with developmental disabilities, I can’t even say that any of the brain damage is totally unconnected to being DD. Even if it’s not always the most direct connection.)

My Offline Social Life In a Nutshell

I kneel in my garden You bend over in yours I am weeding zucchini You are watering corn

Staff talk to each other They talk to you and to me You and I don’t talk to each other But sideways-glancing, we see

[Image description:  Large field, of plants, there’s a weeded spot that’s mostly just dirt, I’m kneeling down pulling weeds, you can’t really see my face.]

Most of my in-person social interaction works like this.  It’s as much an artifact of the developmental disability system I am forced to live in to survive, as it is an artifact of anything particular about me or the woman I wrote this about, who I have only met in this kind of context.  

I owe my life to the DD system.  I have given up so much to survive the DD system even at its best.  Neither of these things can be ignored.  Everyone who uses this system to survive, gives up things you may not be able to imagine.  This should not inspire pity or a sense of sad inevitability – “things have to be like this, it’s too bad” – but outrage and love and common humanity.  This is an area where people don’t really differ from each other in anything but shape.  Don’t kid yourself that we’re some kind of second-tier human beings who innately can take this because we’re not quite as real as you and don’t feel it.  Most of us spend our whole lives shoving our humanity into boxes to survive and it’s never enough to please the forces that push us in that direction.  We feel it.  It always comes out in one way or another.  All of us.  Even those of us in hiding from ourselves.

I’m nervous about telling you the price we pay to be here.  I feel like i’m revealing a dangerous secret.  I feel like, in a system that is taking the place of something much worse, a system I need for survival, a system under threat right now, is not something I should be openly criticizing.  But if it continues without change, with everyone simply saying we’re lucky it exists – which we are, but that’s not the whole story.  And without people knowing the whole story, we try to cram our souls into boxes.  Our souls eventually object.

Meanwhile we often try to connect with each other indirectly rather, as described in the poem.

[If you want more on why and how our souls object, see this post, It’s long.  But thorough..]