In my dreams I'm dying all the time.

 In my dream last night, I was a teenager living in my parents' house again.  I knew that I had to study.  I had promised that I would.  But I couldn't make myself.  I wandered through the house, I watched TV, I talked to people who were present in that odd way of dreams that doesn't make any sense but doesn't even strike you as strange in the context of the dream.  All the time I knew that I was meant to be studying, that if my parents or aunt or uncle caught me doing something other than studying, I would get in trouble.  But I still couldn't make myself.  I saw my parents' care turning into the driveway, and immediately headed upstairs.  I explained to whoever-it-was-that-was-there-in-dream-logic that they knew how my parents were.  They knew how they'd react if I was caught not studying.

I think it's only lately that I've started to come to terms with the amount of pressure I was put under as a child.  I was a smart child (I like to think I'm still smart, if not a child any more).  It was simply taken for granted that I would excel.  I was going to sail through school.  I was going to get into the best university.  I was going to medical school.  I was going to become a famous doctor.  Or researcher.  Or author.  So long as I was famous.  It was a given.  

So when I began having difficulties in the latter half of high school, my parents and aunt assumed it was because I wasn't putting in the effort.  And they treated me as such.  They bought me workbooks, practice books, hired tutors.  They ordered me to do a half hour of private study a day, in which I was left alone in a silent kitchen with my math books, which for an ADHD child was just short of torture.  I have vivid memories of sitting at that table, staring at my book, staring at my pencil, staring at my hands, frantic for the microwave timer to beep and free me, but also terrified that I might not have done enough.

When I found out that my end-of-year exams meant I would just have to go to school for a couple of hours a day, I was delighted.  The whole afternoon, just for me!  My aunt shut that down instantly; all of that time was to be spent studying for any upcoming exams.  She told me that to keep my grades high I was going to have to study from the time I got home until the time I went to bed.  I asked, rather incredulously, when I would have time for fun.

She exploded.  

How dare I be so selfish.  How dare I be so lazy.  There were girls out there who had jobs on top of going to school.  There were girls out there having to care for siblings.  There were girls out there who had to cook and clean for their whole families.  There were girls out there sacrificing sleep so they could study.  And I wanted leisure time?  I wanted fun?  It was disgraceful.

I was thirteen.

But this was the kind of pressure that I was under.  All the time.  My parents and aunt would check my homework.  If it wasn't done to their satisfaction, I had to explain myself.  All tests, all quizzes had to be brought home and reviewed.  Why did I make this mistake?  Why did I get this wrong?  That's a careless mistake.  Oh, how the words "careless mistake" haunted my scholastic years.  I shouldn't have made that error, it was a careless mistake.  See, if I hadn't made all these careless mistakes I would have gotten an A.  If I failed, it was because I was careless, careless, careless.

Those hours at the kitchen table.  Being made to pick out those hateful activity books at the bookstore.  The smell of pencils.  And that carried through.  If I didn't succeed, I must not have tried.   I must not have spent enough time studying.  After all, I went out with my friends, I spent Sunday afternoons gaming.  Other girls studied instead of sleeping, and I was out gaming.  Sure, I had my textbooks in my lap the whole game, studied whenever it wasn't my turn, but clearly that wasn't enough.  If I really cared, I wouldn't have gone to the game at all.  

Careless, careless, careless.

In the dream I went up to my room, I shut myself in, sat on the bed.  Dug through the mess on the floor until I found my workbook and a pencil.  Started to work on problems.  Waited for the knock at the door.  Prayed I'd done enough.  

When I woke up, I wanted to cry.  

Watch Me Disappear

Near the end of the consultation with the specialist who diagnosed me with Asperger's and ADHD, he remarked that autistic people often have "fringe" interests.  I replied, with some enthusiasm, that I have always had a love for horror and true crime, whether it be literature, films, comics, or games.  "Oh yes," he remarked, looking through his notes.  "Autistic people often have a fascination with violence."

I was struck dumb.  My love of horror was something I'd always felt integral to my personality, part of what made me uniquely me...and in less than ten words, this doctor had reduced it to a symptom.

One of the biggest conflicts about disability is whether or not our disabilities define us.  Many people will say flat out that they are more than their disability, that they are a person who is disabled, not a disabled person.  They are not defined by that disability.  But at the same time, when one's disability is literally in the way one's brain functions, not due to some accident or injury but due to a natural difference in the way it is structured, can one be anything but defined by it?

In many circles and in the excellent book Neurotribes it is argued that autism is not a "disability" in the classic sense of the term, but rather a variation on the natural structure and function of the human brain.  That the issue is not that we have anything wrong with us, but that society and culture are set up for the neurotypical majority.  We should not say "people with autism" the same way we would say "people with coronovirus", but rather "autistic people", for the simple reason that autism is not a disorder to be corrected or a disease to be cured - it is part of who we are.

It could be argued, I think, that the same is true of ADHD.  People with ADHD, I have found, tend to communicate and comprehend each other in a way that we simply cannot do with neurotypical people.  Oddly, the most apt comparison I have found is in the form of my dog.  

My dog is a greyhound, a breed that is among a particular subset of dogs known as "sighthounds".  In contrast to most other dog breeds which hunt and navigate primarily by scent, sighthounds, as their name implies, hunt and navigate by sight.  As a result, their behaviour and body language is slightly different than that of most other dogs, to the point that other dogs may avoid them or respond to them with aggression.  Sighthounds seem to travel among other dogs with a vague air of befuddlement and wounded confusion, unable to understand why interactions go wrong so often.  But when two or more sighthounds meet, there is an almost palpable air of relief and delight. Finally, they seem to say, someone who speaks my language!  Someone whose brain works like mine!  

And that is how I have felt when meeting others with ADHD.  We easily fall into conversation with each other.  The natural tension I feel when interacting with other people falls away.  There's an ease in our body language and a natural warmth in our speech.  Finally, someone who speaks my language!  Someone whose brain works like mine!

But that brings me back to my fundamental question.  

The more I read about autism and ADHD, the more I see myself in the descriptions and the anecdotes.  Yes, I have done that.  Yes, I feel that way.  Yes, that happened to me.  And the more I find the parts of my life, the characteristics that I thought made me myself, are instead fairly common to autistic people and those with ADHD.  I have never had a particularly strong sense of self, and realising this is on the one hand a relief ("Oh, thank God, I'm not the only one,") and leaves me with a frightening feeling of being unmoored.  If all of these things are simply part of my disabilities/disorders, then what can I definitively call part of me?  Are these character traits, or are they symptoms?

I suppose that in coming to accept that I am an autistic person, I am a woman with ADHD, I may come to accept all of this, whether they be unique traits or symptoms, as part of the grand tapestry that is myself.  Perhaps it's my own inherent resistance to seeing myself as disabled that makes me even use the word "symptoms" to describe these traits.  Somehow, I need to come to terms with the fact that these characteristics can both be something that is true of many autistic people and people with ADHD and part of who I uniquely am.

But it's not easy.  Sometimes it feels like the more I find out about my disabilities, the more I disappear.

You're looking for an angel, and I'm sorry I can't fly

 

Oh, fuck you.

Coming to terms with having a disability is not an easy feat.  Especially when you have been told your entire life that you are capable of something.  And then, to be bombarded with the idea that your disability shouldn't affect you or your life is not only invalidating your experience, but also just downright infuriating.  

"Can't" was always a bit of a dirty word in my schools and home, and it still seems to be taboo in a lot of circles.  Just like the image above says, there was no such thing as "can't", just "won't".  Of course you can pay attention in class, you just won't.  Of course you can keep all these details in mind, you just won't.  Of course you can stop daydreaming and focus, you just won't.  Do you have any idea how harmful hearing these words is to a child with ADHD?  I grew up convinced, utterly convinced that I was a lazy, worthless slob.  That the only reason I failed at anything was because I let myself fail.  I nearly drove myself into several nervous breakdowns throughout university, trying to force myself to focus on subjects I couldn't stand, and yet I kept being told I wasn't trying.  I remember thinking that my idea of "trying" must be somehow distorted.  I felt like I was working myself into exhaustion, but I was still failing.  And everyone around me said that I was failing because I wasn't trying.  Clearly I just didn't know what trying was.

Teaching myself the word "can't" has been one of the biggest challenges I've faced throughout this process, and it is still something I struggle with.  But it's a fact.  I have ADHD.  I can't direct my focus.  I can't make myself pay attention.  I can teach myself techniques to help with that, I can use tools and medication to help slow my brain down or improve my memory, but I can't use my brain and concentration the way neurotypical people do.  And no amount of "positive attitudes" or "I wills" is going to change that.  

I can't do it.

And just saying those words has become so scary to me, in no small part because of of platitudes like those in the images above.  Because to so many people, saying "I can't" is a personal failing.  It means a lack of conviction, of morality.  It means laziness.  Weakness.

I can't do it.

I can't.

I can't.

That is not something to be ashamed of.

If I keep saying it to myself, maybe one day it will stick.

So what do we do with our lives?

 I guess one of the hardest things about all of this is that I don't know what all this means for my future.

I'm going to be forty years old in three months.  Most women my age have a career, savings, a list of accomplishments.  What do I have?  

The last serious job I had was almost twelve years ago.  Everything else was temporary, or I was fired, frequently because my ADHD made shit unmanageable.  What savings I had were spent in the resulting periods of unemployment and depression.  I've sold a few short stories, managed a web page, but otherwise I have very little to my name.  And it's getting to the point in my life that it's getting harder for me to achieve or obtain those things.  Even if I got a perfect amazing career now, will I have enough time to save money for our retirement?  It's entirely possible my husband will never be able to work again.  Can I support us both, in that case?  

We are primarily living off benefits and the goodwill of our families.  This is not the vision that I had of my adulthood independence.  

I'm not sure that I'm capable of working a full time job anymore.  And the jobs that I seem to be capable of doing are so simple and low-end that they pay very little.  I have so little tolerance for any sort of pressure...even the jobs that I trained for seem terrifying to me now.  

I don't know what I want anymore.  And maybe that's a good thing, because I don't know that I'm capable of getting it.

A man walks down the street, he says, "Why am I short of attention, got a short little span of attention,"

 

I've rarely seen a better representation of what ADHD feels like on a day to day basis, especially for kids.

I want to reiterate that we know something is wrong with us, even if we haven't been diagnosed.  We know we have trouble paying attention, and that is frequently a source of extreme anxiety for us.  Especially when we repeatedly receive negative reinforcement for failing to pay attention.  For a neurotypical person, this might result in them learning to pay attention (though negative reinforcement as a whole is not the best way to teach anyone anything), but for us it's like smacking a paraplegic for "refusing" to walk; we can't fucking do it.

What is does result in is the development of defense mechanisms.

I have learned, for example, to have just enough of my attention devoted to whoever is talking at me to pick up some superficial words/terms and the very general gist.  That way, when whoever it is snaps, "You're not listening!  What did I just say?!"  I can reply, "You said (reference) (key word) (vague implication)," and thus avoid punishment.  Whoever it is returns to lecturing me, and I drift back into the ether.

If I happened to be focused on something when whoever it was started speaking to me, I was expected to put down whatever I was doing and listen.  This is almost impossible for people with ADHD.  We cannot regulate our attention.  I might set aside whatever I was doing, but my mind would still be on it.  And saying that I needed to finish whatever it was was unacceptable.  I was insulting the person who wanted to talk to me, implying that what I was doing was more important than they were.  Punishment again.  

These are the lessons drummed into me by childhood.  It was dangerous to let on that I wasn't listening.  It got me in trouble, it got me punished.  I was terrified of letting on that I wasn't paying attention.  But all those punishments, all that fear, didn't teach me to listen, they just taught me to hide.  I have a smiling, attentive mask rigidly moulded to my face, and I don't dare remove it.

The problem is, when you want to actually come to terms with ADHD and learn how to manage it, one of the first things you have to do is dismantle those defenses.  And that is one of the most difficult things you can imagine.

It is no longer dangerous for me to say that I was not paying attention, or that I didn't hear what someone was saying.  In fact, one of the most common phrases I hear from my husband is, "Just tell me."  But my defenses are sunk deep in bedrock, trenches dug and lined with concrete.  Nine out of ten times I don't think before I say, "Of course I was listening," or "I'm not doing anything, I can listen."  It just comes out.  And when I am called out for not listening, I respond with the same reflexive regurgitations that I did when I was a child.  I still get scared when I realise that I've lost the thread of a conversation, or when my defenses are recognised for what they are.

These are some of the hardest words I have ever learned to say:

"I'm sorry, I phased out.  Could you repeat what you were saying?"

"I'm focused on something right now.  Give me a minute?"

"No, that's not true, I wasn't listening.  I'm having trouble today."

The reflex is still there.  Maybe some day it won't be.  But for now all I can do is try to say these phrases, or something like them, in the aftermath. Chip away at the concrete, day by day.  Someday it will crumble.

I'm not crazy, I'm just a little unwell.

 I am well aware that something is wrong with me.

I remember thinking that  one of the worst things I could imagine was to have a traumatic brain injury to the point of losing a large amount of one's cognitive ability, but not one's memory.  Because then you would be aware that things used to be different, that you used to be able to think more clearly and function more easily than you did, that you used to be able to enjoy different activities and more perform more complex tasks.  You used to be able to take care of yourself.  And now you cannot.  And maybe you can remember and comprehend why, or maybe you cannot.  And that, to me, seemed like hell.  

(I don't know why I specifically linked this idea with a mental disability/brain injury.  Looking at this paragraph now it's clear to me that all of these things apply to physical disabilities as well.  I've just always had a particular horror of losing my cognitive function.)

And yet, this is the situation in which I find myself living.

When I was a student I kept a balance.  I went to school full time, I juggled all of my projects and papers, I worked twenty hours a week.  It was a heavy load, but I managed it (likely in no small part due to the fact that I was living at home, and my mother handled all of the cooking, cleaning, and laundry).  When I moved out in my early twenties, I managed.  I had a full time job, I had a chore routine, the apartment was clean.  

I recognise that in part this is because I was living alone in a five room apartment with a single cat.  Even then, my cleaning regime was hardly extensive.  I managed to fuck up my "easy to clean" glass stovetop pretty fast.

The more complicated my life grew, the more function I lost.  My now-husband moved in.  We acquired (many) more pets.  I changed jobs multiple times.  I had a severely traumatic experience and had to adjust to life on SSRIs.  We moved twice, once to a different country.  My mental and physical health, and that of my husband, plummeted.  I stopped cleaning, I stopped writing...and I didn't just stop doing these things, I stopped being able to do them.  I used to painstakingly oil my wooden furniture once a week, and now the thought of cleaning out our garage sends me into crying fits.

This is not uncommon for people with ADHD, and it particularly seems to be a trend with women.  We function, and we function, and we function, until we can't.  Our lives hit a particular level of complexity, and our brains, already stretched to their limits, break down.  And then our lives implode.  We're left standing in the wreckage, picking up the pieces of our shattered lives as best we can.  And sometimes there's just no fixing them.

I used to be able to do this.

I used to be able to keep my house clean and organised.

I used to be able to work full time.  

I used to be able to write thousands of words a day.

And I know that I used to be able to do these things.

I have been living my own personal hell, and not realising it.

And perhaps even worse than that is some people's assumption that I don't realise this, that I don't realise my life is a shambles and I need to do better. The assumption that the fact that I haven't done these things means I don't know they have to be done.

Your house is a mess.

I know.

You haven't written anything original in two years.

I know.

You're forty years old and you don't have a career.

I know.

If you don't write things down you'll forget them.

I know.

You used to be be able to do this.

I know. I know. I know.

I have also only just realised that most of the above statements have never been said to me by anyone but my own mind.  So...am I fighting my own assumptions, then?  God knows.

Welcome to your life. There's no turning back.

 It's such a strange thing realising that you aren't normal.

So much of my school life was spent either being praised or lectured.  Praised because the subjects I enjoyed - English, history, anything to do with animals - came to me so easily, while I would struggle with (assuming I didn't just outright fail them) any subject that didn't catch my interest.  One semester in CEGEP I received 90s in English, archaeology and classics...and a 27 in math.  I spent so many hours sitting at my desk, or at the kitchen table being told that I was an intelligent child, I could do these things, I just wasn't trying hard enough.

My report cards would be consistently full of comments like "doesn't apply herself" or "often makes careless errors" or "inattentive in class".  My teachers echoed my parents' words; I could do all of this.  I was just deciding not to.

So I would decide to do it.  I would sit down in class, my pencils sharpened, my notebook open, determined that I was going to change.  This time I would pay attention.  This time I would take copious notes.  This time I would pay attention.

And the next thing I knew, the bell was ringing, class was finished, I hadn't taken a single note, and I had no recollection of the time passing.  

I thought that everyone dealt with this.  I thought every kid, every student in my class had the same issue.  But for some reason, everyone but me could overcome them.  But everyone didn't have the same issue.  Everyone didn't have to overcome this obstacle.  I thought I was trying to get over the same hurdle everyone else had sailed over, only to find out the problem wasn't the hurdle, it was that my legs were tied.  

And being told constantly that I was intelligent, I was gifted, I was extraordinary...that was one of the things that kept me from seeing just how disabled I was.

Maybe it's not about realising that I'm not normal.  Maybe it's about realising that I'm just not extraordinary.  I'm not sure which is worse.