Tag Archives: aphasia


A/N: This post is raw and more of a collection of thoughts than a coherent whole. I’m posting here as a signpost to myself. It’s definitely intended to be a comprehensive commentary on the subject of independence and disability. 

 I. Theory, Background, Questions and Concepts

What is the relationship between being dependent and being independent? Certainly not the opposites that we assume at first glance.


There are common themes that you’ll encounter if you read enough autism parenting-related blogs and comments:

“My child is severely autistic and will never be able to live on their own.”

“My child is going to depend on me for the rest of their lives. They’ll never have the skills to live independently.”

The assumption that dependent and independent are opposing states is implicit in these types of statements. A person who lives on their own is considered independent by default; a person who needs the support of others to conduct their daily life is dependent. Little acknowledgement is given to the gray areas of reality.


Consider this scenario:

My elderly neighbor lives alone.

Based on this statement, you’d assume he’s independent, right?

How about this scenario:

My elderly neighbor, who lives alone, is in poor health. He has daily visits from Meals on Wheels and a health aide. A maid service comes every other week to clean his house, a lawn service keeps up his yard, and various neighbors drop by daily to bring in his newspaper and check on him.

Is he still independent? Dependent? Something else we’ve failed to consider?

Oh, wait, I know what many of you will say . . . we’re all interdependent. This is true. Few of us make our own clothes or grow our own food or generate our own electricity. Even those of us who are able to cut the grass or clean the house might hire someone who can do a better job of it.

Does that mean some of us are more interdependent than others? That independence and dependence are fictional extremes where no one actually lives?  Continue reading (In)Dependent

Finding Peace in Liminal Spaces

I suspect this may be too esoteric or scattered or specific, but I’m putting it here in the hopes that it will strike a chord with some readers. My writing style is shifting as I find it harder to hold the thread of long passages of text and I’ve decided to give in to that and see where it takes me. If you’re in the mood to read something more conventional, JKP has posted an excerpt from my book in which I explain why it’s called Nerdy, Shy and Socially Inappropriate.

 I’m in an in-between place, much like the one I found myself in after learning more about Asperger’s and before getting diagnosed. If you’ve been there, you’re probably familiar with the swirl of feelings in-between places evoke–certainty and hope shot through with doubt, fear, and confusion. Determination, undercut or perhaps fueled by intermittent anger and frustration.

The in-between places are hard. We no longer quite feel like the person we were; we’re not yet the person who will emerge on the other side of this no man’s land.


Liminal (adjective):

  1. of or relating to a transitional or initial stage of a process.

  2. occupying a position at, or on both sides of, a boundary or threshold.


The spaces between, the grey areas, have always fascinated me. When I wrote fiction, I was endlessly picking at the in-between places. Perhaps because I find them so hard to stomach in real life.

I’m not good with uncertainty. Literally, my number one reason for seeking out an autism diagnosis was peace of mind. I needed to know if I was making it all up in my head / imagining myself into a neurology / selling myself a bill of goods because I’d grown weary of looking for answers.

To put my mind at ease, someone who ‘knew about these things’ would have to validate my suspicions in a way that I couldn’t do for myself. That piece of paper, I figured, would get me over the hump and out of the in-between place of “this feels right but what if . . . ?”

It did, though not quite in the way I expected. It was more anti-climax than epiphany. But it was a path to closure and closure was what I needed to get on with life.


I understand that having access to a paper diagnosis is a privilege. At least, I thought I did. Maybe I’d overestimated the depth of my understanding.

Once again I find myself stuck in an in-between place, this time with no immediate possibility of a diagnosis. Months of making the rounds of doctors and tests have told me only what is not the cause of my language difficulties.

I’m left with three possibilities:

  1. this is temporary and will resolve itself when it’s good and ready
  2. this is something serious and the evidence that would allow a diagnosis is years away
  3. this is my new normal and I should learn to live with it

Which is a bit like being told, “there’s probably nothing serious causing that limp but if there is,  we’ll know for sure when your leg falls off.”


If I’m being honest, I need to admit that number 3 on that list is true regardless of whether I’ve won the prize behind door number 1 or door number 2. Months going on years is too long a period to simply keep hoping tomorrow will magically be different.

It dawned on my last weekend that one way out of the in-between place is acknowledging that where I am now is my new normal. That is a hard conclusion to arrive at when the new normal appears so much shabbier and rundown than the old normal.

But there is no practical reward for living in an imaginary future. It only fuels that awful feeling of suspended reality and in-between-ness.


Things I am learning to hold close and be with:

  • uncertainty
  • anger
  • sadness
  • imperfection
  • fear


In the in-between place, it helps to keep reminding myself that it’s okay.

It’s okay to feel certain and uncertain, often at the same time. Feeling one doesn’t make the other untrue.

It’s okay to doubt myself, to feel insecure and crazy at times. Like the anger, fear, sadness and frustration, I can feel those things, move on when I’m ready, come back to them when I have to.

It’s okay to not have an answer. There are more unknowns in the universe than there are knowns. See also: the unknown unknown.

It’s okay to change. 2500 years ago Heraclitus said, “You could not step twice into the same river” and there’s a reason people still quote him. We are constantly changing, like it or not, accept it or not, realize it or not.

It’s okay to ask for validation and it’s also okay if not everyone I share my experience with offers validation. Ultimately, I have to punch my own ticket.

It’s okay to feel like I’m the only one who knows my experience and, at the same time, it’s okay to identify with the experiences of others, even if I don’t share their diagnosis yet or never will. Adapt what is useful applies to more than just kung fu.


Liminal   late 19th century: from Latin limen, limin- ‘threshold’ + -al.


I’ve spent the last six months looking for the threshold of this in-between space. Surprisingly, I found it in the confirmation that there would be no answer, not now.

Maybe that’s a kind of resignation. Not a giving up, but a giving in, a practical acknowledgement of reality. I’m done struggling with this thing for now. There is a kind of tired relief–a quiet sense of peace–in acceptance and I’m ready to embrace that.

For now, and for as long as I can keep hold of it.



_________ing an Uncooperative Body

I don’t know how to title this. I don’t know what verb to put in that gaping blank space. I don’t even know if body is the right word.

Maybe brain is more correct, though my brain keeps reassuring me that it knows exactly what it’s doing. It points fingers at my uncooperative mouth and unruly hands, blaming the execution when I’m quite sure something must be going wrong further up the line, in the commands or perhaps the translation from thought to action.

And yet . . .

It’s clearly physical, too. Physiological? I watch my hand go astray as it writes letters that I’ve know how to form–that I’ve been writing without conscious thought–for forty years. Even as my brain is putting on the brakes and mentally shouting at my fingers that an “S” doesn’t look like that, my hand carries merrily on, barely finishing an extra loop or a backward curve before I bite my lip and, with a level of concentration more commonly seen in first graders, trace over the letter until it looks right.

Less obviously physical, but just as confounding, when the word in my head doesn’t match what my fingers type or my mouth blurts out, it feels like an accident of the body. A localized failure to follow orders.

And yet . . .

The brain directs the body, is part of the body. So let’s say body. It’s all a little less scary that way anyhow.

That still leaves the verb. The action. What is this dance that I’m doing with my uncooperative body these days?

All I know for certain is that I need an -ing form, denoting an event in progress.

Taming an Uncooperative Body?

I wish. Taming implies making something easier to control. What’s happening has its own timing and progression. The best I can do is to try to keep up with the changes as they make themselves known, one by one, steadily more strange.

Wiling an Uncooperative Body?

I should know by now the outcome of “just try harder” in these situations, but I still fall for it. Occasionally sheer will works. I’m pretty good at forcing myself through unpleasant tasks when necessary. But with writing? Having a conversation? Mostly I end up cranky, with an achey head and a strong desire for a nap.

Ignoring an Uncooperative Body?

Ignoring worked for a while. When the oddities and slip-ups and errors were an occasional thing, I could pretend they didn’t bother me, that I was being a silly perfectionist. They were annoying, yes, but still easy enough to ignore. We’re past that point now, and have been for a while.

Accommodating an Uncooperative Body?

I tried–and continue to try, though with less enthusiasm–to find accommodations that work. I’ll talk instead of writing, I assured myself. I’ll use text-to-speech to check for errors. I’ll switch to handwriting, slow down my typing, outline, make notes, scaffold, revise as much as it takes. Give up Facebook groups and commenting and reading a zillion blogs and articles, reduce my communication load and stop volunteering for projects. I’ll have silence day and learn sign language and only write on “good” days and settle for a word that’s close enough when I can’t find the one I really want.

Each one worked for a while, until it didn’t anymore. A series of Maginot lines and my brain invaded Belgium every time.


Fighting an Uncooperative Body?

At times, I do, out of stubbornness, a refusal to give in, pride. I’m angry a lot these days. At what, I don’t know. Myself? Why? It makes no sense to be angry at myself for something I’m not purposely doing. Maybe at life, circumstances, the way irony is only truly ironic when it’s happening to someone else.

Maybe I’m more frustrated than angry. Maybe the exact descriptor of the emotion is irrelevant. Instead, if I say that the headbanging urge arises too easily and too often, does that convey what I’m feeling? If you’re autistic, I suspect it does. I guess that’s where the fighting comes in. Because I have to still that urge, patiently walk myself back from it, seek another outlet for that feeling. That takes energy, effort, sometimes just plain blunt force. I’m thankful for a lifetime of practice.

Mourning an Uncooperative Body?

Probably too strong and certainly too final a word, but there’s an intense sadness and feeling of loss that walks beside the anger. My ability to express myself in writing has always been one of the things I thought no one could take away from me. I assumed it was a constant.

My skill with words wasn’t just a strength, it was (is? I don’t know anymore) part of my identity. Writing is an integral part of who I am–one of my oldest and dearest special interests, one of the things that defines me. And I’m sad and scared and angry that it’s possibly dying or, at the very least, deserting me for a while.

Where do you escape to when you’re trying to escape the very thing that has always been your most comforting safe space?

Questioning an Uncooperative Body?

Who is this person I’m becoming? There’s an incongruity that’s developing in the gaps of who I am and who I think I am (was? have been?), between the aspects that continue to be strong and the areas that I’m struggling with in ways I have no contingency plan for.

When I’m not writing or talking or listening, I feel as whole and competent and as much myself as ever. I go out to run in the morning and the ideas flow just as they always have and I think “yes, today is the day.” Then I sit down at the computer, stupidly optimistic, eager to write what’s running around in my head and quickly begin to wonder what kind of tricks my brain is playing on me, what made me believe that today–unlike yesterday or the day before–that today would be the day that I could get from thoughts to words so easily.

Disguising an Uncooperative Body?

Increasingly there is the need to disguise my confusion. How often can I ask The Scientist to repeat himself until his frustration surpasses mine? How often can I reasonably tell him that I need silence because listening to speech, trying to link one sentence to another, holding the fragile tenuous meaning of his words in my head until I can respond requires more effort that I can manage in the moment?

How odd does it look to others when my response to the repetition of a question is “sorry, I didn’t realize that was a question” followed by a request to repeat it one more time? How much easier it is to nod and smile and make affirmative noises and hope I’m getting it right.

Of course, The Scientist is on to me and has started repeating himself when his question is met with confused silence or a tentative guess at an answer.

Living In an Uncooperative Body?

My first instinct was “living with” but there is no “with” here. I can no more live with my body than I can be a person with autism. I am my body, uncooperative or otherwise. Increasingly, I find myself gravitating toward activities that don’t require language. I read less, write less, talk less, watch TV less, run more, walk the dog, workout, listen to music, cook, take long bike rides, swim, play games, tend my container gardens, watch The Scientist fish.

Accepting an Uncooperative Body?

I don’t have much choice on this one. The more frequent and pervasive my language problems become, the more I’m being forced to accept that this is the status quo, at least for now, at least until I know otherwise.

There is also the fact that while I’ve lost a fair amount of my communication ability, I’m still able to communicate many things verbally and in writing. My expressive and receptive language has become literal and concrete and often requires more effort than I’d like, but it’s still functional in ways that matter a lot to me. I should be thankful for that. But the sense of loss is still strong at this point and I’m having trouble getting to a “glass half full” way of looking at things.


And so I’ve run out of verbs. I suppose, secretly, I’d hoped that finding the right verb would mean finding a solution, but I can’t write my way to answer on this one.

Not all posts are about answers, though. Some are simply here to say if you found anything in these words that you relate to or you’ve been in this place or you’re in a place like this right now–you’re not alone. And neither am I.

Uncooperative Words and Where I Go From Here

Something strange is going on in my brain. Aside from the usual strangeness, I mean, which I’m quite used to. Back in March I wrote about my missing word problem. Over the past few months, I’ve developed some funky new issues with writing:

  • The missing words are no longer just small words like a or the. Now I also skip right over important words, and sometimes pairs of words. A particularly bad sentence might have three words missing.

  • Sometimes I repeat phrases, typing things like “I was about to about to change directions.” Those are fairly easy to catch when editing.

  • Verb forms have become interchangeable at times, which results in me sending ridiculous texts like “I’m exciting to see you” and mixing tenses in paragraphs.

  • Contractions are occasionally problematic, specifically leaving off the apostrophe and what comes after it.

  • The weird word substitutions continue, perhaps more frequently, definitely in more obvious forms. Also substituting homonyms like to/too and you’re/your, even though I know the correct usage and it drives me bonkers when other people do this.

  • My spelling has become erratic. In some writing sessions, I backspace over every third word, often more than once until I get it right. The biggest problem seems to be the letters coming out in the wrong order. Yesterday I tried to type Walmart into my GPS and I had “mwla” before I realized that wasn’t going to get me to where I needed to go.

This all adds up to making writing–from a blog posts to one sentence emails–very frustrating. Even a single line reply on Facebook will end up with some glaring–though not to me–error. In spite of multiple proofreadings. In spite of taking my time and being extra careful.  Continue reading Uncooperative Words and Where I Go From Here

The Case of the Missing Words

I’ve mentioned my “missing word problem” here before. You may have noticed it in reading the blog or my comment replies–my tendency to skip over a small but necessary word when I write. This is more than a simple problem with typos, which I can easily catch and fix when proofreading.

The mystery of the missing words had proved intractable enough that I’d given up on solving it.

Until now, that is! I’m reading “The Mind’s Eye” by Oliver Sacks and right there in Chapter 2 is a potential answer: aphasia.

Aphasia is a disruption in expressive or receptive language. It can be as severe as a complete loss of understanding of language, including the inability to speak or think in words. (Aphasia usually affects all forms of language, not just speech.) “Global aphasia” often results from a brain tumor, stroke, traumatic brain injury or degenerative brain disease.

However, milder forms of aphasia are characterized by:

  • difficulty in finding words (especially nouns, in particular proper nouns)
  • a tendency to use an incorrect word without a change in sentence structure

In discussing notable case histories of aphasia, Sacks mentions the English writer Samuel Johnson, who experienced aphasia after a stroke at the age of 73. While Johnson eventually regained the ability to speak, he “made uncharacteristic mistakes, sometimes omitting a word or writing the wrong word” in his writing and correspondence.


Adding Up the Evidence

I omit words when I write–more often than the average person it seems–at a rate of about one missing word per one to three hundred words, more if I’m tired (yes, I’ve started keeping track).

The missing words are small but important, like not, an and the. I need to proofread multiple times to catch them, often in an alternative format, because my brain likes to help me out by pretending the missing word exists and skimming right over the omission.

I sometimes use the wrong word without noticing. In writing, it tends to be a word that is close in spelling or sound, though not necessarily in meaning, like bring instead of brain. When speaking, my substitutions are more entertaining. For example, last night The Scientist was using a kitchen towel to clean up a mess.

“Put that in the dishwasher when you’re done,” I suggested helpfully.

He looked at the towel and frowned. “You mean the washing machine.”

Right. That’s exactly what I meant. And what I thought I’d said. This happens a few times a week and I rarely notice that I’ve done it until someone points it out. It’s more common when I’m fatigued or in a setting with a lot of distractions.

I have trouble with retrieving words, especially names of people and things:

“I’ll recycle the, the  . . .” I’m staring at the newspaper and pointing at the newspaper and I cannot for the life of me come up with the word for it. All I have is a blank–a tangible, almost physical hole in my mind where newspaper should be. “I’ll recycle that that  . . . thing after I finish reading it. $%&*! WHY ARE THERE SO MANY DIFFERENT WORDS FOR THINGS?!”

I’d been attributing the increasing frequency of gaps in word retrieval to getting older. It’s frustrating, especially when I’m trying to find the right word for a written piece and it refuses to surface. Sometimes it will be hours before I can come up with the word I’m looking for; fortunately I’ve learned how to set the problem to process in the background. This often results in me randomly exclaiming things like “dichotomy!” at inappropriate times.

Is Aphasia the Answer?

If this is indeed mild aphasia, then I finally have an explanation for some minor but annoying language difficulties. Perhaps my auditory processing delay is a form of receptive aphasia?

Then again, this could all be tied to Asperger’s. I’ve heard others on the spectrum mention difficulty with finding words at times. Our issues with processing spoken language are widely known. The missing word problem, though? Does anyone else experience that to the degree that I do?

Eager to learn more than what Sacks presents in his brief chapter, I Googled aphasia and instantly regretted it. Here’s what I found at that reliable bastion of truth, Wikipedia:

“Acute aphasia disorders usually develop quickly as a result of head injury or stroke, and progressive forms of aphasia develop slowly from a brain tumor, infection, or dementia.”

Ruh roh.

My language glitches have become frequent enough in the last 2-3 years that I can no longer ignore them. The missing words. The struggle to retrieve words. The odd, unpredictable substitutions. The Scientist says that my receptive language difficulties seem to have gotten worse in the past year too. I ask him to repeat himself a lot, especially when he’s not facing me and I don’t have the advantage of watching his lips.

And this is where I think it pays to stop Googling and back slowly away from the neurology textbook.

The language oddities I’ve described here are firmly in the “inconvenient” category for me right now. Unless that changes, I’ll consider the similarities to aphasia symptoms an interesting bit of trivia. Stay tuned . . .

**In proofreading this multiple times, I found 7 missing words (my, their, a, I’m, an, the and of) and 1 incorrect substitution (ever for even). There may be others that I missed.