_________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.

SONY DSC

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.

104 thoughts on “_________ing an Uncooperative Body”

  1. Not all posts are about answers, and not all comments are or should be. Though tempted (as always) to write something here about my own healing path and how it has inspired my faith in the body-mind and traditional and alternative medicine, I’ll simply offer my respectful sympathy for how you’re feeling, and save those thoughts. You’ve written about such things before – or at least, about feeling disconnected from your ability to write – but it feels to me, as a reader, that there is more sadness and frustration in the subject this morning, less leavening via a philosophical attitude or curiosity. My thoughts are with you.

  2. Virtual hugs. And thank you for sharing. It may sound strange to say it is reassuring to hear about your struggles as well as your triumphs, but it is harder to share deep fears than deep joys, and it must take you a great deal of work to share like this. Thank you.

    1. I totally get what you mean. I think it’s important to share both sides, though these kinds of posts are admittedly harder to write. They feel necessary though–if nothing else, it felt good to have a place to put all of these thoughts. They were getting heavy to be carrying around in my head all the time.

      1. I can understand that. Sometimes you (you general) don’t want to tell the people you know around you because they depend on you or you feel like they already have enough to deal with (or at least that’s how I often feel). Then telling the Internet and finding other people who choose to hear what you have to say because they need it right that moment is a relief.

        Also, posts like this, about aging and change in the mind and body make me feel both scared (how will I cope if what’s happening to you happens to me? Reading is my life! Words are my life) and make me feel like I can prepare somehow, because now I know it might happen. At least I can work toward acceptance early, knowing it might happen, and make sure I have things like a written will in place early and professionals and friends around who will listen to whatever way I may choose to talk. It’s strange how much we, as a species and a culture, choose to stop hearing someone who doesn’t speak. I listen to my cats and my dogs every day, and respect what they have to say. Yet we have so little patience with listening to the bodies of other humans.

        1. I’ve actually hit the point where the people I would usually talk to are pretty tired of hearing about this. 🙂 And yes, it’s good to be able to connect with people who get it or this might help or whatever.

          I’m not sure how typical this is as part of the aging process so don’t panic just yet! I’ve toyed with the idea that it’s a kind of long-term autistic regression (going on 2 years now) but I’m skeptical because I seem to be “regressing” to a place I’ve never been before as an adult or perhaps becoming more autistic in ways I’ve never experienced. Although I’ve heard people talk about that happening–that they’ve started to experience “new” autistic traits during a period of regression. There’s also the possibility that it’s something else entirely. It’s interesting (to me) that I completely left out any mention of the frequent (now nearly daily) headaches and the woozy feeling that comes with them. At any rate, I have a doctor’s appt in a couple of weeks to start ruling out things other than hormones/becoming more autistic/this is how my brain works now. 🙂

          Also, the understanding that you mention in your comment has been so important. For the most part, the people in my life are very patient and have hit on a nice balance between being supportive without resorting to “babying” me or assuming I can’t do the things I’m accustomed to doing, which has been great.

          1. Aging or not, it’s good to hear and know about! I do think the U.S. is a culture where we think of health as either ‘all up’ or ‘all down’ — either we’re doing well or we’re doing badly and doing badly isn’t seen as part of a possible cycle of ups and downs, but as just a down. We’re not a very patient culture, or very good at looking at context.

            Talking to you in this post is reminding me that there *was* a period in my life where I almost lost reading (I had to read every sentence four to five times in a row, as part of a tic, and sometimes couldn’t turn a page without repeating a mantra multiple times–and even that didn’t always work. I’m usually a very fast fluid reader.). But it came back. I hope this is like that for you.

            I hope the doctor’s appointment helps, and it’s so good to hear that the people in your life who care about you are being supportive in a way that works for you.

            1. Oh wow, that sounds like a frustrating tic. Good thing it went away.

              I refuse to believe that this isn’t temporary and hoping very much that it’s hormonal or some level of stress that I don’t realize I’m having or some other innocuous thing I haven’t considered.

              1. It was in the middle of high school and lasted a few months, so it made studying a lot of fun. But in retrospect, I bet it was stress-induced.

                I have my fingers crossed for you.

          2. I frequently “lose” speech, muscular control, even (feels like) IQ points whenever my migraines flare up. Sometimes they are “silent” ones (no pain), but their effects are hardly silent. I have two kinds of migraine: classic and a rare one called hemiplegic. Hemiplegic migraines can mimic stroke, to varying degrees. I don’t know if this is what affects you, but it sure doesn’t help me to be autistic and have my brain randomly short out from “headaches.”

            1. I don’t (think I) have migraines. The headaches I’ve been getting a more like a dull pressure or fullness and don’t seem to worsen the other symptoms except for causing a kind of low-level woozy feeling. But you’re definitely not the only person to mention migraines here! They sound quite awful. 😦

  3. I retyped this comment probably about ten times. For some reason I could not fit my thoughts into words.
    But I will assure you that I know of similar things, altough not in the severity you described.
    I am sure most of us do. Nobody of u is alone.

    1. Oh gosh I know that feeling. Thank you for saying what you did, it’s perfect. (I know how tempting it is to simply give up in frustration when you find yourself writing and backspacing over it a zillion times.)

    1. There is undoubtedly an element of CAPD, but that’s something I’ve always experienced. This new and exciting element is that sometimes even when I clearly hear the words and recognize the individual words as words and could tell you the meaning of each by itself, I can’t get them to assemble into a contextual meaning. Or I’ll interpret them in a super literal way that makes no sense contextually or to the speaker but is the only meaning I can come up with in the absence of more explanation.

      Whereas my experience with CAPD is hearing the sounds but needing extra time for them to sound like actual words, which I can then pretty quickly process into meaningful speech.

  4. I don’t think you need us to try to fill the blank for you, in fact I think your words in this post and so many others are a testament to what IS co-operating in your body, you of course, are acutely aware of the unco-operative. I thank you for all that you give to others by sharing as you do, and what I wish for you is ‘finding peace in ….’

  5. Your writing won’t lose it’s worth because it might be lacking eloquence.
    Your words won’t lose their worth because they might come out slowly.
    I have complete trust in your ability to find a way to communicate.
    And you won’t have to deal with the accompanying frustration on your own.
    You are not alone. No one in the community has to be, anymore.

      1. It is indeed. My boyfriend and I are actually coming up with our own, somewhat intuitive sign language for situations in which we either don’t want to talk or simply can’t because there are people around. We are partly borrowing from different sign languages, partly from movies, partly we just use what we come up with.
        You can barely actually learn normal sign language in Germany, which has it’s own grammar. Basically, what you get taught as a hearing person in a course is how to talk and accompany with signs to be more easily understood, which is important, too, but not what we are trying to do, which is how this started to happen.
        Funny thing – the first sign we came up with came from the movie “Pitch Perfect”
        During the riff-of scene (A singing battle of sorts), someone takes over and makes a certain gesture while doing that – putting her thumbs and index thinger together and then pulling her hands apart. This sign turned into “Stop, I’ll take over from here” for situation when for example we asked the respective other to talk for when we feel incapable – or if we’re offering to do just that. We may have to find a way to discern those two, though.
        We ask if the other one is okay with simple gestures, but we need to work on the different answers. But this is mostly supplemental work. If we were actually afraid of losing our words, we might pick up a different sign language – ASL probably, because that’s the one where there are the most online resources … and here I am going off on tangents, because I actually want to throw a temper-tantrum like a toddler right now.

        It’s not fair! It’s simply not fair that you gave me (and at least two people through me, and probably so many others!) words to finally describe things in a way it made sense to others and now you are losing yours! You gave me words and now something is taking yours away, and that is sad! Don’t get me wrong, I will gladly read anything you write because I love your style and what shines through of your personality and everything, but I will mourn your current style of writing should it get lost, and mostly I am sad for your frustration and your problems and things.
        And those damn professionals tell us we have no empathy when I sit here with tears in my eyes for someone I “only know from a blog” because I’ve been either empathizing or sympathizing or both with everything on this blog and feel like I’m among friends when I’m around here, or at least a very nice group of strangers.

        And … this is pathetic. I’ve been working on a little Thank-you-letter on the blog for describing so many things so beautifully, to you and a handful of others but now this is all taking on a sad note and I don’t want it to be on a sad note! I wanted to thank you before, damnit, and now it sounds like well … I wanna steal attention based on your tragedy, basically, which is NOT where I was going with this.

        And of course, the selfish part of me (There, professionals, you can rejoice! I am behaving antisocial again!) is totally scared this is going to happen to my boyfriend or me or other autistic people we know because this seems to be a common factor and just yesterday I rolled my eyes at my mother (she didn’t see, we were on the phone) who still hasn’t really gotten over the reality of my diagnosis and is frustrated and sad with all of it, especially the “But we went to so many professionals and no one ever came up with that?” and while I understand her feelings – I’ve been having the same ones – I had to suppress the urge to tell her “Damnit, I’m happier with myself than I have ever really been now, so please don’t make a big deal of mourning for my past, please!” and now is the first time I ever faced the reality that this is actually a risk for everyone on the spectrum, losing coping mechanisms as we get older.There was the “vague possibility of sliding back at some point”, but now that “some point” is a bit more tangible, and that is goddamn scary.

        Excuse me, I have to go cuddle a few plushed animals now.

        1. Hey, hugs to you. I feel very similarly. It’s scary to not know how to prepare, or quite what to prepare for.

        2. Your use of a form of sign language to aid communication reminds me that my daughter taught her first child “baby sign” language from birth. My daughter would sign every time she spoke to her daughter. My granddaughter was able to communicate quite effectively well before she could be expected to start talking. I can remember her telling me about what for her was a very traumatic experience when she was around 18 months old. She had seen their cat catch and injure a bird. The bird had been rescued, but it died shortly after. She signed the entire story, much of which I could understand. Some needed to be translated by her mother as I wasn’t fully fluent in their “baby sign”, but it was so heartbreaking to watch her little face as told how the bird had died and they carefully buried it in the garden.

          I doubt that anyone outside the family would have understood the signing, for while it was based on a baby sign language my daughter found on line, many signs where created as and when needed so that they could be mutually understood by both mother and daughter. I’m sure that my granddaughter’s eloquence today is because she had a means of effectively communicating from a very early age.

          I think it’s a great idea that you are developing your own way of communicating with your husband. I’m sure that it will enrich the relationship.

          1. I looked into baby sign a few weeks ago and found it fascinating. Most parents try to base it on the common sign language that is used where they are from (so the articles were all referencing American Sign Language), it appears, and I did know that it would help children make themselves understood so much earlier, but did not expect anything as complex as that example. A beautiful, though very sad story.
            The doing our own signs started after we had taken a Sign Language course (that we didn’t finish, though), but the sign for “Are you okay?” stuck, because it could be done over a distance or if someone didn’t feel like talking. It developed from here.
            Sometimes we just look at each other and one says: “We need a sign for pretty!” and then we try to come up with one if we can, but if we can’t, we’ll look into one that is used in other sign languages, which is usually fun.
            Less fun is when it turns out that we need a sign for “Make that medical professional shut up before I go into full meltdown” …
            But yes, it is somewhat enriching our communication, definitely, though we are still in the beginning stages .
            Do you know if your sister documented the signs in any way?
            Because we are slowly starting to have trouble to remember all the words, which kind of defeats the purpose of being able to communicate nonverbally …

            1. Unfortunately my daughter didn’t document the signing. Her second child only had limited signing tuition, but she has used more signing with her third child. She has had to relearn a lot of signing as she had forgotten much over the intervening years. It does require constant use to be able to remember a growing vocabulary. Again, a lot of the signs are created on the fly. It’s only because the signing is used constantly that she’s able to remember them all. But also languages come naturally to her. She’s fluent in three languages and can get by in two others, so I guess remembering about two hundred signings isn’t that difficult for her.

          2. Barry, I loved your story so much, about your granddaughter. One of the things that interests me is the power of story in our lives. I suppose it’s “fair game” to quote because it’s on a public site, but in case you see this, would you mind if I quoted or referenced your story within the context of an essay on the power of narrative particularly in children’s lives? If so, what attribution would you like? Thank you – I’ve been carrying it around with me in a state of wonder.

            1. You are more than welcome to quote or reference the story. Attribution is entirely optional and I’ll leave it up to you. However if you publish the essay on line, I would very much like to read it. I feel that children understand much more than we give them credit for. It’s their limited ability to express themselves that is the hurdle.

              1. Thank you so much, Barry – I’ll let you know when the time comes. It may take a little while. Is this the best way to reach you then?

                1. You are welcome.

                  I follow this blog, so if you post here I will see it. Alternatively, post a message on my blog (just click the link on my name to get there).

  6. It sounds so frustrating for you and it’s a horrible feeling when you desperately want to do something that you know you can (or could) do at other times. I have no helpful suggestions, but sharing difficulties is as beneficial for others (if not more so) as sharing things that go well because we realise we’re not alone when we do struggle. (I’m not sure if that makes sense) Anyway, I hope you find a solution, or a workaround, or even just peace of mind in some way. Sending an awkward pat on the arm (hugs not my style unless you’re a cat or dog!) and sympathetic look in the meantime..

    1. Awkward pat on the arm accepted! I’m not a hugger either. 🙂

      I think being so aware of what I can (could) do is what is most frustrating. But at least this has produced a great discussion and given us a space to share our difficulties.

  7. Oh, angel. You sound like I feel on a regular basis. Words I’ve known and used for years completely escape me. Concepts that I usually have no trouble with, will retreat faster than a timid rabbit. It was even worse when I was on antidepressants. They robbed me of my creativity. I couldn’t piece together a coherent sentence and I couldn’t make the feelings raging inside of me come out. I felt flat.

    Can I ask if you have changed any medicines or herbal remedies? Have you added or taken away anything in your life that could be having an effect? (Think foods/drinks, medications, cleaning agents, sleep habits, etc.) I noticed that this gets worse for me if my sleep is off or if I am upset. I tend to go mute when I’m so upset that I can’t find my words at all.

    The most frustrating part of it all is dealing with everyone else in my life who know that I’m smart but question what’s wrong with me when I misuse common words or forget a word entirely. It’s embarrassing at best and downright terrifying at worst. I hope you are able to determine what is causing the uncooperative body/mind connection. Hang in there. *hugs*

    1. I don’t taken anything beyond a daily Vitamin E supplement because that helps with the night sweats (yay menopause!). Of course, the hormonal changes of menopause are likely playing at least some role, but I’m frustrated by the steady worsening and appearance of exciting new symptoms with each passing month. I tried keeping a log of things like sleep, stress, my cycle, sugar/caffeine/alcohol intake but gave up because there wasn’t any clear pattern. It’s somewhat worse if I have a terrible night’s sleep but I can get a solid 9 hours and still have lots of problems.

      I’m sorry to hear that you struggle with this too. It’s so frustrating and yes embarrassing and scary.

  8. “Communicating with”? I know this so well yet I don’t understand why/how it happens. I think, but I’m not sure, that I blame my brain for not getting the messages through properly. Maybe it’s something to do with the speed from Brain A to Body B sometimes… ? Maybe the brain has been too busy with something else and controlling the body and finding the right words can’t be done whilst all the energy/strength/power/concentration/productiveness/whateveritis! is being swallowed by the latest wave of anxiety/tiredess/other sucky stuff? I know that a lot of stuff works better when it really doesn’t matter and no one will ever know, so I’m guessing a huge chunk of my own ______ing problem ( 😉 ) must be due to anxiety and performance stress. When you find a time and place where you feel you have all the time in the world and all the peace you could hope for, does it all work better? Or is it always like this? Maybe life is pressing your off switch recently and you need more calm?
    It seems there are always more questions than answers 🙂

    1. I like “communicating with”! I hadn’t thought of that one, but there is a lot of communication going on. Mostly of the cursing variety. 😀

      There doesn’t seem to be a clear pattern to the difficulties. It does get worse when I’m fatigued–I’ll make more errors on the 10th reply here than I will on the first but there are mornings when I feel fantastic and sit down to write and get total gibberish. Those are the worst because I could swear I’m in great condition mentally but clearly I’m misjudging my brain. But I’m continuing to try to watch for patterns and hoping something will jump out at me eventually. Thank you for all of the good questions!

  9. Thank you for sharing this. I’ve known a feeling similar; it can be so draining. It’s hard when what you love so dearly seems unattainable to manage. For me it was my passion for storytelling (writing fiction). I hit a point where I just couldn’t do it. It hurt to not be able to and it hurt to try. I’d just sit there at my keyboard or with my pen in hand but nothing worked. Sometimes I had adjectives and lacked verbs. It went on like this for three years. I felt lost. I tried to fill the void but it seemed nothing would break this dry spell without words. At the end of those three years I was a frustrated, apprehensive mess (word/meaning malfunctions were causing other problems as well). It was mid-semester and I was walking around the University with nothing to do for four hours between classes. I’d never been in the library there. It was big. I knew I would get lost. But I gritted my teeth and in the name of ‘doing something different’ I went in. A sign said the fourth floor was a quiet zone; that sounded nice, so I went. I got lost in the library fourth floor for four hours; I never opened a book. I just wanted to feel the place, knowing adding words too soon would dilute it. It was wonderful. I don’t know what it was, but in the lack of words I found my passion for story again. It wasn’t instantaneous; it was work and some days felt like one step forward and a hundred back. If all I could manage was a concept, fine. The meaning is more important than the words. I’m not explaining well; what I mean to say is I hope you break through. Sometimes losing something is the key to gaining it back with even greater momentum. Looking back it felt like I was swimming through a congealed pool of Jell-o and it wasn’t fun at all. Know that no matter what you blog here we appreciate it. Since I began reading your blog it was the intangible things about it that were endearing. I wholeheartedly appreciate your open honesty. In the time being find joy in the non-‘language’ related things; things that are an integral part of your being don’t disappear entirely for too long.

    1. I gave up on fiction more than a year ago because it all just felt so lifeless, so I know how saddening that can be. I’m so glad to hear that you got your storytelling back. That library sounds magical. 🙂 I’m hopeful that this will pass in time and I’ll be able to get back to normal. My idea folder is bursting.

      Thank you for the kind words and the encouragement. All of the comments here mean so much to me.

  10. As a middle aged aspie with multiple disabilities, I have to say that you nailed this one on the head. With degenerative arthritis of the spine, I have had to watch my physical capacities noticeably decline. As an aspie, I have had to watch my aphasia get more and more common and my ability to deal with confusion and sensory clutter become less and less. I have done my best to balance acceptance with never giving up, but the rage and fear are always lurking like watching vultures, ready to swoop in as soon as I fall.
    I guess the worst part is the helplessness. Chances are that it is not going to get any better and it is almost sure to get worse as time goes by. Then comes the terrifying question of: How much longer can I continue to function? I’ve already had to give up so much of what I used to do. Will I have to give up the few things I can still do that allow me to be a useful individual? Will I become an invalid before I hit the normal retirement age? Will I become a prisoner within my own flesh? These are the terrors that hide within me. Maybe none of this will happen, maybe it all will. Hiding from the future is useless, but failing to plan is folly.
    And how do I deal with these fears when there are people whom I respect and advocate for whose everyday reality is worse than my fears? Am I just a big hypocrite for fearing to become like those I celebrate? Am I giving in by accepting the quote from the Princess Bride? (Life is pain! Anyone who tells you any different is trying to sell you something.)
    This is the hard part where the rubber meets the road and all the trite sayings aren’t worth a tinker’s damn. Crying, screaming and giving up are all useless because you still have to get up in the morning and face the world. (boy this is a depressing rant.)
    Ah well. In the end life goes on … and I get weirder.

    John Mark McDonald

    scintor@aol.com

    1. Yes, the feeling of helplessness–of not being able TO DO SOMETHING about this is infuriating. And I have asked myself many of those scary questions. This whole situation is making me question if there really is a social model of disability or if some things are disabling no matter what.

      I hope you’re able to find some peace with your difficulties. Aging is hard as it, but throw in disabilities and neurodivergence and it’s a crapshoot for sure. Again and again I see people talking about how their coping strategies become less useful with age and it feels a bit like a race to the finish. Okay, I’ve taken your depressing and pushed it over into grim. :-/

  11. This sounds very worrying. Could it be burnout? It is good to hear that you are going to see a doctor, and I hope it isn’t something serious (the symptoms are serious enough of course, but what I mean is that I hope it is temporary)

    1. It might be burnout. It’s hard to tell because I’ve worked more hours, longer days, harder, etc. But I was younger and not dealing with the hormonal loopiness that I am now. So that’s definitely a possibility.

      1. Just looking at all the activity you’ve put in here on this blog, it has been intensive through a long period of time. I haven’t encountered any other blogger that get that many comments who replies to every one of them – geuninely, thoughtfully and elaborate, coming back and discussing further when there are new replies e.tc. That is fantastic, it is extraordinaire… but also over-human. And that’s just one aspect of your activities with book writing, articles and probably moreor less constant (or at least frequent) research and ruminating about your topics of interest. Perhaps the problem is your strength: strong focus, conscentiousness and tenacity around this special interest, (autism/the blog) combined with ongoing encouragement from so many people, that inspires you to keep going and give just a bit more where you otherwise would have let go … and then perhaps also combined with a poor ability to identify your mind and body’s need for rest and recovery. It is possible that you’ve used your mental and physical resources up and been running on “the reserve battery” for long period of time, and has hitthe limit a while ago but kept trying to go on, and now your body is being serious with you as a matter of self-preservation. The breaks and accomodations here and there may merely protect against a complete break-down but not be enouugh to replenish the energy.

        This kind of activity/communication (like this blog) is ongoing, there is no final end product where you can say “I’m done, I have created this Thing and it now lives it own life which I can’t control”, and then let go mentally and rest “indefinetely” ~ as long as it takes, with no pressure. And later move onto another project (or the same one) perhaps at some point in the future, but not until letting completely go.

        That’s of course just a psychological angle… it could be something entirely different.

        1. This is true. 🙂

          It is a lot, but I keep coming back to the fact that I’ve done more in the past (worked two jobs for many years, worked 7 days a week for entire seasons, went to school full time while working full time). But maybe it’s all cumulative. Then again, I never feel like blogging is a chore. I’ve been especially careful lately to only give it the amount of attention I can comfortably manage, which is why I’m replying to this a day and half later (and only posting once a week, etc.).

          I never really thought of it as something that is never finished, which is an interesting way of looking at it. To me, everything I’ve written in the past is done and more or less forgotten. I’m routinely surprised when someone comments excitedly on an old post because I completely forget that I wrote so much of what’s here. Mostly I think of this space in a day-to-day or week-to-week sense.

          I guess I could try taking off a longer period of time to see if it helps, but I think I’d just miss blogging too much at this point. It’s something that I really do enjoy, even though it can be a lot of work at times. And literally right after I read this comment yesterday morning I accepted an invitation to write a chapter for a book and it’s due in two weeks and I’m really excited about it, even though I know it will cause me all sorts of frustration.

          This whole thing is causing me a lot of mixed feelings. Maybe I’m just dangerously stubborn or have a special interest that isn’t good for me at the moment but I can’t let it go. It’s certainly food for thought. I’m glad you brought it up because I need to consider every possibility.

          1. (Arh…. I thought I had already replied!:-) Anyway I don’t have anything specific to say, other than thanks for your reply. I am very happy to hear about your passion for writing, because it is a great joy to read what you write:-)

  12. I have experienced something similar… I honestly can’t say if it’s autism related, or related to one of my other “issues,” like POTS/NCS or migraines. I have been leaning toward the latter, but who can really say? Since you mentioned headaches and woozy feeling though, I thought I’d throw those terms out there for research. It’s my belief that in me, the migraines and POTS issues are strongly tied together, as my brain gets oxygen deprived. Some days are worse than others, in terms of being able to speak or read or comprehend. I still have an easier time writing than reading aloud or speaking at these times, but even then I will sometimes look back and what I’ve written and be puzzled at the strangest kind of mistakes. Not my “normal” mistakes. The inability to process language, or speak in the normal way/remember words for things, or read aloud, is definitely tied to migraine prodromes or worsening POTS symptoms for me. When I was younger, I seriously considered if I was developing some early form of Alzheimer’s, but with the other conditions I shifted to thinking it was the brain fog that is associated with those. I don’t talk to people much about it anymore, though I see their confusion, and so they just add it to the pile of weird things I do. I get the impression that when I talk about my struggles I come off as a hypochondriac, when really, I just want answers, and it feels scary and disorienting when processes that used to work go “wrong.” Not just in language, but also in “forgetting” or not being able to understand how to do simple things that I can usually do, when my symptoms are bad.

    1. I Google POTS/NCS and looked at the symptoms but neither than nor migraines seems to fit for me. I can see how oxygen deprivation could cause some serious cognitive symptoms though. It’s a bit scary to wonder if early dementia is setting in, isn’t it? Around that point, it really pays to walk away from Google and just think happy thoughts. 🙂

      Your difficulties sound really hard on a day-to-day and I totally get what you mean about not talking too much about it. It doesn’t seem half as fascinating to others as it does to me. I hope you’re able to find some more of the answers you’re seeking and also ways of dealing with the loss of skills that happens when your symptoms are bad. It’s so frustrating to have that sense of “but I should be able to do this.” :-/

  13. Thank you so much for writing this. I’m going through something similar right now, I think. And it’s comforting to know I’m not alone in what I’m experiencing, and a relief, almost, that someone’s been able to put into words what I’ve been struggling to hard to articulate for myself.

  14. I’m so sorry to hear these problems are getting worse for you.

    Some time ago I stumbled upon an article that always come to mind when you mention the difficulties you’ve been having. It’s not really a solution, maybe just a clue or data point that might be useful to you. I’m not sure I can do justice to a summary, so this is a quote from the introduction:

    “When reading text or listening to someone speak, we construct rich mental models that allow us to draw conclusions about other people, objects, actions, events, mental states and contexts. This ability to understand written or spoken language, called “discourse comprehension,” is a hallmark of the human mind and central to everyday social life.“

    I’d always assumed this was part of the ability to process language. According to this research, however, discourse comprehension isn’t even linked to the regions in the brain that are associated with that function. It arises from the network that’s responsible for our old friend, Executive Function, and it actually allows us to integrate incoming language with past knowledge and experience.

    This is the link to full article:
    http://www.brainmysteries.com/research/Researchers_map_brain_areas_vital_to_understanding_language.asp

    1. That article is really interesting and potentially explains allot. The higher my anxiety the shoddier my EF the more down the tubes my communication goes. Last night I couldn’t string words together properly and at one point asked my husband, “Is dinner’s leftovers for lunch tomorrow alright?” I spoke like that all evening and had to get my husband to check my emails to make sure they made sense. But My Executive Function is awful right now too.

          1. I have a sibling who creates interesting sentences often. So maybe I’m just used to parsing eccentric sentence structures 😉 (And accents. Do you ever do accents when you’re stressed? I’ve know a bunch of people, self included, who break out in random accents under stress.)

            Ignore me if I’m derailing too hard.

            1. I accidentally imitate accents when I speak to people with accents and because I like in Vancouver and only ever hear certain words spoken in a Chinese accent, well …

                1. No worries! I didn’t realize Vancouver had a sizable Chinese population. I should have guessed that. If you only hear words said one way, it’s hard to say them other ways. It makes sense to pick that up.

      1. That sentence made perfect sense to me, Beth, even in writing, which is the harder test than speaking – lots of things don’t cross over too well from speech to print. Anyway, there’s lots of research about mindfulness activities enhancing executive function – in my case, meditation specifically has been a help to me.

        1. I know that the sentence makes reasonable sense but a more functional me would have said, “Are the dinner leftovers alright for your lunch tomorrow?”

          Also I’ve read many times about mindfulness meditation being helpful for many issues but the trouble I always have is in implementation. My husband practices but I am always so scattered. I am also nearly narcoleptic in the evening when my husband gets his time in, so joining him is out. It is on my list of things to implement after we move in two weeks. Sometimes for me a new location helps, and if I can implement it with the kids involved then it is one less thing that I am trying to work in for just me.

      2. hehe… talking like that is a good day for me (although it’s confusing to read… but I don’t necessarily talk like I write). The other day I said “I have to go to the pee” as an explanation for why I paused a movie. And not long before that I passed my son in the room, and he said “hi mommy” and I replied “meow” by accident, even though I knew perfectly well he wasn’t one of the cats (which I routinely speak to in this way), I just got signals crossed. This sounds a lot nuttier when I write it down :P.

        1. Those are classic examples of the things that I do too 🙂 I also reverse letters in curious ways. During the last move I lost the ability to say paint cans. Cant pains, Pant cains. Caint pans. It lasted for two weeks. I once called my husband by the cat’s name (speaking of “Meow”) in the middle of an argument. My point was not taken seriously. Also I know that my question about leftovers looks okay when you can see the words lined up, but my delivery was totally weird. It actually made less sense spoken.

    2. Interesting article! I guess it kind of ties in with the verbal reasoning component of EF to some degree. I hadn’t thought of the receptive language issues as potentially being linked to EF so that gives me an interesting line of thought to pursue.

  15. As I was reading reading your post I found myself recognising many of the symptoms you describe and thinking this is so typical of what we migraineurs go through. Then it struck me. I wasn’t reading a migraine blog, I was reading an autism blog! Believe it or not, what you describe is typical for many migraineurs. I have often wondered if there is any relationship between migraines and autism. Certainly, sensory overload is common for both.

    I’m reasonably good at faking allism when I’m not stressed, but that fall apart when a migraine occurs. To those who don’t know me well, I become a different person.

    Migraines can cause the strangest of symptoms. One peculiar one that I have is that if I handwrite while having a severe migraine, I write alternate lines in alternate directions and not realise I’m doing it. I’ll write the first line left to right, and instead of moving to the beginning of the next line, I start writing immediately below the end of the line just finished, and proceed to the left end of the new line in mirror format. When I reach the left end of that line, I drop down to the next line and start writing from the left. I am able to read what I have written and not notice anything strange. However when the migraine passes, I can’t read the passage without the aid of a mirror. Go figure.

    You may be interested to read the blog I posted today (http://anotherspectrum.wordpress.com/2014/06/10/if-i-was-you-i-would-kill-myself/) as it touches on this subject.

    1. Thank you for the link. (What a horrible counselor!)

      Migraines sound awful and seem to be linked closely with being on the spectrum. But I don’t think I experience them–my headaches seem pretty run-of-the-mill in comparison to the severe symptoms you describe. Also, the writing backwards is fascinating. Amazing what our brains can do when something goes slightly off the rails.

      1. Apart from that one comment she was really helpful. She opened my eyes to many things I wasn’t aware of. She was also one of two people who independently identified me as being on the autism spectrum.

        I’m not saying that you do have migraines, but the symptoms you describe are very migraine-like. The thing is that migraines not only very so much between individuals, but also between attacks in a individual. In my case a migraine attack may be accompanied by severe or mild headache, or no headache at all. Some days it’s motor skills that are affected, other days it’s cognitive skills. Some days it’s both. Yesterday I didn’t know which way to turn the lid of a coffee jar to open it. Today it’s no problem.

        If the problems you described in your post come and go over a matter of days or weeks, it’s worth adding migraines to your list of possible causes. I’m not into hugs or touches (virtual or otherwise) but I wish you well in finding a resolution in whatever form that may take.

        1. It’s a good point… my migraines used to be mainly of the “excruciating pain lasting for days” type with little to no prodrome, but over time and treatment of other conditions, they’ve morphed into more often being “silent” migraines, with extensive prodromes including weird (but classic) mental, visual, and/or physical effects, sometimes over the course of days, followed by comparatively mild or no headache. I actually prefer these to the intense pain ones because I can still sort of function, though poorly… the extensive pain ones were the sort where I couldn’t do much at all except attempt to block out all light and sound and movement and nothing touched the pain.

  16. I lost speech, motor control, even (feels like) IQ points due to hemiplegic migraines. What you describes sounds very similar to how I was functioning for awhile before getting them more under control. Perhaps reining in your daily headaches will ease the rest of your problems. I still have issues sometimes, but I’m much better these days than I was.

  17. “you’re not alone. And neither am I.”
    I just want to emphasise the “you’re not alone”, and thank you for writing this because it is reassuring to know ones experiences aren’t isolated, or isolating.

    I understand completely what you’re saying. I have experienced a different set of changes but the effect, feelings, and attempts to manage it are all extremely familiar. Your description is very good, including the missing verb. I’m sure that unknown is part of the difficulty.

    I explore things I can find satisfying and can feel freedom in, eg music, animals, plants, craft. But I always have a line that crosses into disappointment that I can’t do more so must be aware of that and stay in the “happy place”. Mindfulness practice helps a lot when I do it enough. I’m working on establishing a daily practice.

    I’m not quite sure how to say this, I hope it doesn’t sound patronising; You writing about your language and writing difficulties, from those difficulties, is valuable to readers. It’s real and important to a lot of people, and probably quite often a hidden difficulty for obvious reasons. So don’t feel you aren’t doing a good job on the blog, it’s just as good and useful as ever.

    1. Thank you for the reassurance and encouragement. This has definitely begun to feel isolating and blogging is one of the few connections I have left to the online world. So positive comments like this are really uplifting.

      But I always have a line that crosses into disappointment that I can’t do more so must be aware of that and stay in the “happy place”.

      Yes! I’m doing my best to keep a sense of humor and focus on the positive, but it can be hard when the problem is very “in your face” and affects something that was previously enjoyable and an important part of your life. I can’t offer any help, but I totally understand what you’re saying here and sympathize.

      I definitely think mindfulness is helpful. By daily practice do you mean meditation?

      1. Sorry its taken me so long to reply. I wanted to think about the answer then other things got in the way!
        What I mean by daily mindfulness practice:

        I try to keep mindful awareness throughout the day, but find that I need to do a “formal” meditation session every day, or at least 5/6 days a week, to be able to do this. Ideally I aim for 45 minutes a day of meditation but even 10 minutes is better than none. Once I am doing this formal practice I start to find it much easier to notice things like how I feel, what I’m thinking, reactions to things that happen around me. I struggle a lot with understanding how and what I feel both physically and emotionally and tend to get surprised by strong feelings without noticing a build up or warning signs. Mindfulness helps see things coming and also helps to be able to decide what to do. Its like having a bit more space around you while at the same time feeling more connected to the environment. Does that sound weird? Its hard to describe. It isn’t magic and doesn’t “cure” those difficulties, but it helps a lot. It takes me quite a long time of good daily meditation practice to get to a point where I feel the benefits throughout the day. It takes very little time for me to lose that ability if I skip a few practices.

        Sometimes I like to read mindfulness books and re-visit notes from the courses I did. They can be useful but aren’t a substitute for getting my butt on that bench for 45 minutes a day. Sometimes (actually more often than I care to admit) it really is a case of holding myself there as I wriggle and flap and my mind bounces allover the place, but if I can remember what I’m doing a couple of times its worth it. I think I regain in useful effective activity more than the time I spend on doing it so its worth the time investment for me.

        I hope this answers your question. Its got rather long – sorry. I would normally edit the content but I don’t think I’ll get this done unless I just post it as is. I can recommend books if your interested.

        1. Seconding this comment. I had a suicidal breakdown in February, got introduced to mindfulness and meditation in a (fantastic) partial hospitalization program, and have slowly succeeding in making it a daily requirement that I meditate at least 10 minutes a day, in the evening (I’m trying to train myself to do 10 in the morning, too). It has made an immense difference. It’s like it gives my mind ‘permission’ to notice more around me and within me. And I’ve also noticed that if I don’t do it for a few days, the benefits drain fast.

          Most mindfulness books are divided up into small pieces, so I usually read a section of a mindfulness book before I meditate.

            1. Thank you! I’m glad I came through, too 😉 It was, strangely enough, a good experience in the end. Hitting bottom gave me the internal ‘excuse’ to finally pay proper attention to my depression (which has run in cycles throughout my life) and the way my mind and body work, as opposed to the way I felt they *should* work. And I was lucky enough to also discover a lot of support resources through the experience; I think, honestly, that’s what I wanted all along. Suicidal ideation/thoughts were me saying, “I admit I don’t have the tools to cope any longer. Can someone show me some tools? Can I stop pretending I have them when I don’t?” So far, I am very happy I finally broke down. And glad I found what I needed when I needed it! (To anyone reading this, suicide or crisis hotlines, the ER, and partial hospitalization programs are your friend if you’re suicidal. Honestly. Don’t feel bad about using them, even if you’re thinking, “Well, maybe I’m not suicidal *enough,* maybe I’m just faking it, maybe I just want attention.” Yes, you do want attention. For a good reason. You need help! Go get it! Take that first step in realizing wanting attention when you’re desperately hurting is *exactly* the right thing to want. Though if you go with a PHP, take a look at online reviews first. Some of them aren’t very good.)

              And that’s a lot of going a bit off-topic. (Also, I’d be happy to talk about my experiences with mindfulness to you. I am currently very enthusiastic and peppy about mindfulness.)

                1. Thank you 🙂 I was lucky. So many people don’t realize that it’s okay to respect depression as much as someone might respect, say, internal bleeding. You might look okay, but you aren’t, and acting to get help is very, very wise, not weak or needy! (I say, to my past self.)

              1. Otterknot, if you’d like to consider contributing to my “mindfulness in education” blog, you can email me at presentmomentlearning@gmail.com. I’m particularly interested in the a) what mindfulness in the school setting did mean (if they experienced it) or could’ve meant to kids, and/or b) the value of mindfulness from an ASD perspective.

        2. JK, I’m starting a blog for educators, support persons, and others, that’s largely about the value of mindfulness for kids, although I want to include other topics in support of kids’ learning and growing. Realizing that you’re not a kid (!), please let me know if you’d be willing to share, interview- or essay-style, thoughts about how mindfulness is helpful to you within your life, or if you have thoughts about how other kinds of mindfulness activities might have helped you as a child – whether in relation to autism or not. (Otterknot, that goes for you, too, if you see this!) Let me know, and we can work something out! If you’d rather wait till it’s up and running to see what it’s like, fair enough, you can let me know that, too, and I can update you as things progress. Thanks for sharing this post – I’m always so happy to see mindfulness meditation working for people!

          1. Sorry this has taken me so long to reply. Yes I’d be happy to answer questions about mindfulness and how I think it would have helped as a child. Its a subject I’m very interested in right now. I’m not sue how best to get in touch for it, I don’t want to post my email address here. Please let me know what to do if you still want to discuss it.

        3. That definitely answers my question, yes! I’m always curious about how people approach mindfulness since the word seems to have different meanings for different people. For me it’s more about being in the moment as much as possible day-to-day rather than formal practice, though there was a time when I regularly practiced meditation and sometimes I think it would be nice to go back to that.

  18. I feel that I must share this with you at this time; you have saved my life with your words. My state of mind was in a very bad place, a place that felt like the only way I would find peace would be to die. I discovered your blog while wandering through the internet looking for help and found there a voice that spoke to me so eloquently, so soothingly, so informatively. I know it all sounds very dramatic and over the top but within the time it took me to read most of your entries I knew that I had found a way to be in the world again, accept my limitations and most importantly, to celebrate my strengths. It is because you spoke to me that when my mind goes to that scary place I know I’m going to be okay, that I’ll find my way even if it’s a path I’ve never been on because that is one of the things I am really good at. After all, we autistics have been doing it all our lives.

  19. Yeah, I know about brain/body glitches, too. Not fun. My worst time was when I was about 30 y.o. when I suffered a serious head injury. I lost my ability to understand speech and could not understand my own speech when I tried to speak. Very surreal and bizarre, as I was aware of my dysfunction. I could not read nor write. I lost everything. I had been on the dean’s list at university. Reading and doing research had been my favorite past-times. I taught myself how to read again using my son’s Donald Duck comics. (They have pictures, don’t you know, to help give meaning to the words on the page. 😉 ) Anyhow, there were other things, too. You know what kept me going? I kept saying to myself, “hmmm… this is interesting. Pay attention to this Self, you may end up writing about it someday.”

    A wise teacher once said that when you get so discouraged that you can’t go forward anymore, “Encourage others.”

    I agree with JK above. And thanks again, Cynthia, for writing about something that really is difficult to put into words.

    1. Thank you. ❤ I think you mentioned this before and I appreciate your wisdom. In the reading I've done about language problems, most often they seem to come on suddenly (head injury, stroke) and then either improve or don't from there.

      A wise teacher once said that when you get so discouraged that you can’t go forward anymore, “Encourage others.”

      This is a great quote and one I hadn’t heard before. Thank you for sharing it – I’m going to keep it in mind when things are looking bleak.

  20. I keep reading this and scrolling down to the ‘Share Your Thoughts’ box.

    I have many big, thick, heavy feelings around much of what you are saying here and I can’t really articulate them properly. They are too thick and too enmeshed in my current state of limbo and anxiety and fear. I keep telling myself that someday I *will* be myself again, but I’m not sure if I know who that is. So I tell myself that I will know myself when I see me. Does this make sense?

    Will send you good thoughts.

  21. I feel for you. I used to be able to put words down with ease. Then a couple of years ago I developed an anxiety disorder that sneaks up behind me and grabs my word. Some days are better than others, but it feels like a betrayal.

  22. This is a great, thought provoking post. I love that you said “the Scientist is on to me” as if you were going undercover.

    “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.”
    Yeah, I find myself doing that too unless I really have to go out and talk to people for work, school, etc. I’m writing and reading more and walking every day.

    Speaking of uncooperative bodies……..I recently noticed that I can’t for the life of me walk in a straight line; walking that way is not natural for me at all. Focusing on walking in a straight line is like making myself write with my left hand when I’m naturally right handed.

    1. Ha! I often do feel like I’m undercover, especially when I’m trying to prevent someone from noticing something like how much I’m struggling with a task. 🙂

      I’m been thinking a lot about whether there’s an “autistic walk” lately. When you say that you don’t walk in a straight line, do you mean that you kind of meander in an irregular forward line or something else? I’ve noticed that I’m sometimes a foot dragger or a shuffler and when I’m not walking somewhere in a hurry, I meander a lot.

      1. Yep! I meander in an irregular forward line; it feels like I’m having an adventure (heh, it’s the little things for me) even though I’m still going in the same direction. I shuffled a lot until I joined marching band.

  23. Sorry to hear that you are still having these problems, and glad that you are seeing a doctor about it.

    I do have language issues, which have cropped up in in these perimenopausal years, and I’d always been great before with words, spoken and written. It’s mostly when I’m stressed, excited, overtaxed, or didn’t get enough sleep. I did get hemiplegic migraines when I was a kid, but this feels different and much, much milder.

    I hope that you are able to get some answers.

    Sending good vibes your way…

    1. Thank you for the good wishes. I’m a little nervous about actually starting the process of seeing professionals because it feels like such an odd problem to have and one that I’ve only heard other autistic people talk about. Hopefully I’ll be able to get some sort of conclusive answer and take some steps to make things better. Fingers crossed.

  24. I’m sorry to hear you’ve had such a tough time, and I hope you get through this and find some peace, in whatever form that takes. It seems like it happens a lot, so I hope you’ll find a way to improve/fix the problem. I’m not sure how you feel about the writing you put up here, but it’s consistently wonderful and thoughtful and full of amazing reflective ideas, and beautifully written, so from an outsider’s perspective, you’re still a great writer and just as captivating as when I first started reading a year ago!

    1. Thank you for the good wishes and kind words. It’s been a rough couple of weeks with a lot of ups and downs. I have trouble knowing what my writing is like anymore so I mostly post and hope I haven’t said anything horribly awfully wrong. 🙂

  25. I am new to the Aspie world but at the same time not. I have had these most of the picture perfect descriptions of Aspergers symptoms my enitre life and just recently discovered that is actually a condition. . . [I just thought it was just me so did/does every body else].
    If there is one I have learned from these experiences, it is that stress and anxiety agravate and/or bring out symptoms that may not always be there. . . like putting sentences improperly together or using the wrong verbs, or not being able to find the right word, It seems to be that if you get rid of stress you, silence the symptoms. I dont like to presume but based of my experiences and research I would logicaly conclude that your are likely stressed/anxious/ or feeling down/ aka glass half full mode. If this the case it may be your answer as to why. This brings out these symptoms that you so perfectly describe.
    Im not sure if its related, but it is interestingly intriguing but My grandfather recently had a stroke and lost all communication ability, but still has all of his knowledge of his life and memories, he just has no words to communicate with, I found this very intriguing because if your memories are thoughts , than how can your thoughts not have words. I started researching and discovered that THOUGHTS ARE NOT WORDS, [which brings up the question what are thoughts?] From what i researched it goes some like this: you have thought, and then brain searches through your vocabulary to find the words needed, and then organizes these words into a working sentence. It seems that the issue is some where in these three steps. As I have had the same issue that you have described[ sorrey for any typos}. It seems to go something like this: I/You have the Thought which is usually clear as day in our own minds , but when the brain goes to find the words it either finds the wrong words[usually something that has been on your mind] Or it structures the sentence improperly, and this completly occurs subconsiously . . . Im not sure if this will help, but hope it does . . . it always seems to be reassuring if I could find out why things occur because, if we than make effort to fix them.
    I must Say I love your website and it has been a great aid in my discovery of why i have had these issues I have had through out my life. And your a big inspiration to Many[including me] as it is apparent from the comments. My prayers Go out to you. . . and again thank for sharing your experiences it truly gratifing to us Aspies, esepecialy for those who are discovering this for the first time.
    May God Bless You,
    HalleluJAH
    { Hallelujah is a hebrew word meaning “praise JAH ” aka Jehovah/Yahweh}

    1. I can’t totally rule out stress, but honestly it’s been so steadily deteriorating over the past 18 months regardless of whether I’m happy, sad, stressed, busy, on vacation, relaxing, anxious, at peace, sleeping well, not sleeping well, etc. It’s been a pretty constant downward track, which makes it hard to attribute to a single mental/emotional state.

      I can definitely relate to your grandfather’s predicament. My thoughts seem to be in words but not actually in words. Like the concept of words in my head isn’t precisely the same as the concept of words that are written or spoken. Since I started experiencing these difficulties, I’ve realized that I do a lot of intensive translating from what’s in my head to a form that is understandable by others. Perhaps it’s that translating that’s gotten harder.

      Thank you for the kind words and the suggestions. I’ll keep them in mind as I work through this and really appreciate your good wishes. 🙂

  26. The word that springs to mind for me is ‘corralling’. I am picturing horse riders working together to drive an unruly herd towards a goal. Whatever it is, it sounds incredibly frustrating. x

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