Why meetings are a problem.


I’m writing this Tuesday night, although I will probably post it Wednesday morning given how many posts I’ve made close together today. So “today” = March 28, and “tomorrow” = March 29.

I had a meeting earlier today.

As far as I can tell, I was told things like, “If you go with the fandle norblit plan, then this would galleb the noodwer sifdong in the pollafied tridge. But you’d have to do a feeping drudsy mardenforig if you want diens to rowify. And werin on zabfor invilsiddy porren the fandle norblit again so you can get the mardenforig set up.”

Of course, there were actual English words in there. I could even probably have repeated the sounds of them at the time. I could not make them lodge into anything remotely tangible in my brain. Even when I got the sounds right, they just wouldn’t touch anything. I tried banging them against my brain for awhile and gave up. The same thing happened when I tried to read the papers they had given me at the last meeting.

It’s going to be interesting when whoever is involved in this, finally notices exactly why it takes me so long to do anything official. It’s because I end up either having no clue what anyone is talking about, no clue how to talk about what I need to talk about, or both at once for even more fun. The world moves much faster than is possible to keep up with, and sometimes its regulations and such insist that I move along with it, faster than I can actually go.

Get me reading or writing about human rights, or autistic people, or certain aspects of myself, and you will find someone who is, at times, incredibly articulate and literate. Get me off of those few topics, or get me into the wrong approaches to these topics, and you’ll get someone who can’t say or understand a word.

I have a meeting tomorrow. It’s about my hands. Which are not, as far as the tests go, experiencing carpal or ulnar tunnel, or if they are, it’s too mild to show up on the tests. We’ve of course now learned that I’ve got a lot of things that would point away from carpal or ulnar tunnel as being the main cause (although I do suspect I’ve got a mild version of one or both of those in addition to whatever else is going on) of pain for me with this RSI stuff, but the hand doctor has cut me and my staff off so much that it’s impossible to get a word in edgewise. Tomorrow he is likely to make some sort of ridiculous pronouncement based on the tests.

Hands are not my best area of understanding. I am not good at communicating every little nuance of pain and other sensations, even when someone is poking at them, especially when someone is poking at them. My hand doctor is someone who believes in rushing patients through appointments so fast you barely know what hit you, and not bothering to listen to anything he doesn’t find important, as far as I can tell. Among the things he didn’t find important last time were my finger that I can’t straighten, which hurts a lot periodically, and which can’t be fixed surgically therefore it’s not even important to him to tell me why I can’t straighten it (it’s not broken or arthritic). This is probably not good for anyone, but is especially bad for an autistic person.

So tomorrow I get to go to another meeting. One in which I may or may not understand a word that’s being said. One in which I may or may not receive some of the ultimate medical insults (I always love how when something isn’t what a doctor expects, many of them blame the patient). One in which I am very likely to, unless this hand doctor changes drastically in his approach and outlook, decide to find a hand doctor willing to spend enough time to look at all possibilities. When you’re dealing medically with an autistic person, it doesn’t matter how verbal we are or seem to be, you can’t just assume that we’ll tell you the most important facts, so you have to do more work, not less. All I know is that I’m not imagining my hands hurting, and I know what my brain can and can’t generate and this version of hand pain is not in the “can” category.

But my brain is only barely even turning towards hands. For me, writing is like trying to catch a thermal: I can choose which but they have to be there. There are no thermals right now leading to the information that will help me out at an appointment with an obnoxious hand surgeon. I can’t even get myself too worried, because I can’t imagine what tomorrow will be like. I just know that with the blankness towards hands in my brain, I’m very likely to be hit out of nowhere if he decides to be too awful. And if meeting with people who wanted to take the time to communicate with me, today, was bad for comprehension…

About Mel Baggs

Hufflepuff. Came from the redwoods, which tell me who I am and where I belong in the world. I relate to objects as if they are alive, but as things with identities and properties all of their own, not as something human-like. Culturally I'm from a California Okie background. Crochet or otherwise create constantly, write poetry and paint when I can. Proud member of the developmental disability self-advocacy movement. I care a lot more about being a human being than I care about what categories I fit into.

9 responses »

  1. ….the experience of “banging the words against your brain” is something I often have difficulty in explaining to people. If you state that you can’t hear the words, that’s something that people can understand, but most people seem not to have a reference for “I can hear the words but not connect them to meaning.” In my experience, anyway. And there’s a certain group of people who, when confronted with something they have no analogue to in their personal experience, will decide anyone who talks about it is lying or ‘describing a normal thing in an unusual way.’

    This kept tripping me up in school– everyone was willing to assume I was lazy or ‘absent-minded,’ and I couldn’t find the words to refute them. I think I tried to explain to someone when I was 10 or 11 that trying to force myself into a state where I ‘listened all the time’ was physically painful. The reaction I got was, though not in these exact words, along the lines of “Ha, ha, what a dramatist you are. Everyone gets bored having to listen to lectures, and that’s all you’re describing, getting bored, so just buck up and do what everyone else is doing.”

    But there were times also when I found peace in release from the words being spoken around me having to make sense.


  2. The outcome of the appointment was kind of typical. The doctor told me all about what kind of physical therapists I’d need to see, but didn’t tell me my diagnosis until I said something, only what my diagnosis wasn’t. It wasn’t until I said “…but wait a minute, don’t I need to see a doctor who can figure these things out first before you know what kind of physical therapy I can get?” before he impatiently told me that yes I have a repetitive strain injury and it’s tendonitis. (Which is what I suspected all along, but he hadn’t uttered even the “RSI” word let alone “tendonitis” the entire time, he’d been totally focused as far as anyone knew on carpal tunnel, which I didn’t think was the main problem if it was one at all.)

    So then he did his usual enter-and-leave-before-I-can-ask-much routine, and I thought “Hey, if he diagnosed tendonitis without telling me, maybe he diagnosed the hand injury without telling me too.”

    The nurse, when I asked, kept telling me how busy he was and how they couldn’t help my finger so it didn’t matter what was wrong with it. I told her it was my finger and I deserved to know what was going on with my own finger, seeing as it’s attached and everything. She told me it moved just fine so it didn’t matter. I told her it hurt so it did matter, and besides it was my finger and nobody was telling me about it. She still took awhile to agree to ask.

    She said he’d discussed it with me before. I said “Yeah, all he told me was that it wasn’t a break or arthritis, he didn’t tell me what it was.” She said “Maybe he doesn’t know.” I said “I don’t know is at least an answer, he didn’t even give me that.”

    Eventually came back with my chart, where she tried to show me a bunch of long words that basically meant “your finger is bent 20 degrees and won’t straighten.” I said “Yes, I kind of noticed that. Does he know why?”

    She told me I wouldn’t understand part of the chart (which I did understand), and then she showed me the part where he said it was sprained. “Thank you. That’s all I had needed to know.”

    “But we can’t fix it.”

    “Really, that’s okay, I just wanted to at least know what your word for whatever went on in there was.”

    (Note that if someone hadn’t been there with me, this conversation couldn’t have happened, because it took someone getting her to shut up long enough for me to type, which she didn’t want to do. She wanted to tell me what she wanted me to know, rather than what I wanted to know, for some bizarre reason, and tried to make me feel guilty in several ways for asking questions.)

  3. And there’s a certain group of people who, when confronted with something they have no analogue to in their personal experience, will decide anyone who talks about it is lying or ‘describing a normal thing in an unusual way.’

    I’ve noticed that, and they will also tend to get offended if you say it’s not that. (I think some of them think it means we’re “trying to be unique and special” or something, not quite getting that we really do mean something different.)

    With regard to listening during lectures, I find that the more I try to listen the more likely I am to fall asleep. But it’s certainly not that I’m not trying to listen, or that I am bored. (I noticed that I cannot sit through a normal church sermon without falling asleep, but I can usually easily sit through a more “boring” (by normal standards) Quaker meeting without falling asleep, something that as far as I can tell makes more people fall asleep. And I can fall asleep during sermon or lecture no matter how interested I am in it, even if it’s on my favorite topic I will still often fall asleep.)

  4. I’m actually surprised that people don’t get the “bashing the words against your brain” thing. That makes perfect sense to me. I’ve been learning german and had an oral exam today. It took a good 15 odd tries with “geburtstag” before it made any kind of sense at all.

    “birthday” just isn’t a word I’ve needed enough to recognize easily.

    Also, I’m glad that you found out the major problem with your hands is tendonitis. I hope they heal well :D.

  5. I want to thank you for being such an articulate and prolific writer. I am the mother of an autistic child. I love him and live with him, but I do not live in his world the way he does. You give me something to think about very time I read your blog. I hope it’s an insight into his world. And I’m so grateful for any insight, any glimpse. I so desperately want to understand, support and help him in ways that are meaningful to him. Thanks again.

  6. Your experience with these doctors is completely normal even for people who do not have autism. We cannot all be experts with complex subjects like retirement funds and the stock market, and so the decisions people make are often more based on a feeling about it than any real understanding.

    Setting up an IRA or money market account is full of hard to undestand decisions, which is why most people have an expert “fund managers” at big financial companies to handle it all for them.

    Insurance is another deep rabbit hole that most people have hard time understanding. Annuities are a difficult concept.


    And this is why investment and insurance companies use slogans of stability “like a rock” and past stability, to help the uneasy confused investor to give lots of money to them.

    The job of their annual report is not just to inform the people that can understand it, but also to exude an aura of confidence for those that do not understand but are investing in the company anyway.

    For all the talk about charts and graphs, the stock market is mostly about emotion and feelings. Stock market bubbles and crashes happen because of regular people buying and selling on emotion, rather than thinking clearly about what they are doing.


    Your experience with these doctors is completely normal, though most of the “normals” around you are not willing to admit they sometimes experience the same uncertainty and anxiety that you do.

    But I can see that if you have always been told to always question your abilities, then it seems like a much bigger problem.

  7. I don’t know, maybe. Most non-disabled people I know don’t have trouble saying “It hurts when you press there” and other basics. Which isn’t an anxiety problem. Also, most non-disabled English-speaking people I know don’t have trouble comprehending random everyday English unless they’re really drunk or something.

  8. I was told by a therapist in Amsterdam to let my arms hang loosely and flap my hands as part of my treatment for RSI. I kept forgetting to do my hand-flapping, possibly because it had been drummed into me that hand-flapping is unacceptable behaviour. All the same, hand-flapping as a treatment for RSI is an interesting point to make to people who want to suppress hand-flapping as it doesn’t fit with their narrow view of what is OK.

  9. Hmm. Hand-flapping makes my RSI worse. But maybe because mine is contributed to by a loose wrist joint which probably means flapping it just aggravates it more. Cool that it helps some people though.

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