Don’t just hand me things.


This post has to do with the same topic as my old post Safety Hazards. By the way, the Foradil is no longer a problem for two reasons. One, I had a routine set up so that a staff person would hand me the inhaler with the capsule already inside and punctured. Two, insurance quit covering Foradil and gave me Serevent instead, which is a discus not a capsule.

And now I am typing around the body of a cat who timed her snuggle so that it came after the sound of the nebulizer shut off.

Some background: Now that they know the breathing trouble was bronchiectasis, not asthma and not me just being a pest, I have a treatment routine that makes the “breathing takes effort” thing and the “coughing only brings up phlegm the size of a pinhead” thing far less of a problem. I take two nebulizer treatments a day, each with a vial of 7% saline. But it’s really important to use my inhaler first or else the saline can do terrifying things to my airways that at best take eight puffs of my inhaler to keep me out of the ER.

So the usual routine is someone hands me my inhaler. I take two puffs. Someone hands me a nebulizer mask. I put it on. Depending on my position either I or the other person connect it to the tube and turn on the nebulizer.

So today someone walked into the room, handed me the nebulizer mask, and made a bunch of clanking sounds as well as a small sound like cuujooholdhis. So of course I put the mask on and things could have gone very badly.

The other thing is that I usually have to make an effort for words to be words and not random noise. It’s not just an auditory processing thing, it’s a cognitive/language processing thing where I spend most of my time in a default state where words haven’t even been thought of yet. And even when I concentrate I sort of phase out into that state a lot. So to me, most of my interactions on a typical day involve seeing patterns of movement, hearing patterns of step and tone and stuff, and mostly interacting by the process of being handed something, and then doing whatever I usually do with that object.

Which means “could you hold this?” is just a set of quiet sounds with an offhand, casual feel to them.

And handing me an object you don’t want me to immediately use can be a dangerous idea, depending on what you’re handing me.

About Mel Baggs

I am a highly sensing person. I am a child of earth and water, I was born into a redwood forest and I left the forest but it never left me. I'm 34 as I wrote this. If I had an alignment like in role-playing games and MUDs, I'd be chaotic good all the way: I don't think it's possible to fill ethics into a moral code, the world is far too complex for that. I let the world be complex and chaotic and try to respond situation by situation from a small number of principles of right and wrong. My responses may seem to contradict each other, but that will be because either the situation has changed, or I have changed. I am a poet who is trying to practice more every day, hence the poetry blog. I am a cat lover and live with a wonderful elderly cat. I am a painter when I have the time, energy, and resources. I have multiple cognitive, physical, developmental, and psychiatric disabilities, and my health is not usually stable. Put all together, I'd be considered severely disabled. I get a lot of assistance throughout the day. I am a real living cyborg, part human part machine: I have a GJ feeding tube to feed me through one tube and drain my stomach through the other,, an InterStim implant for urinary retention, and a port (a permanent central IV line). I love life. I think Love (not the sentimental emotion, but the property of the world) is the most important thing that human beings can offer each other. Being near death enough times has taught me that, and has also taught me that I have no time for bullies or pettiness. I'm involved in disabilty rights and other causes that people these days would call 'social justice', but I don't consider myself part of the 'SJ community' or the 'anti-SJ community' because of that thing I said about pettiness -- they're more about one-upmanship than fixing the world. I wish they had not taken over the words 'social justice', which used to mean something else. I love talking to just ordinary people about fixing the world, they have far more realistic ideas and more likelihood of putting them into practice. I'm a Hufflepuff to the core, with some Gryffindor tendencies and even a little bit of Ravenclaw. I admire some Slytherins but I don't have much ambition or cunning at all. I still think the Slytherin common room is second best, with Hufflepuff coming first. My favorite color is brown, especially when combined with a bit of yellow or blue. My favorite music is country, and my favorite country artists are Kathy Mattea, Lacy J. Dalton, Kris Kristofferson and Rita Coolidge, Merle Haggard, and Loretta Lynn. I don't like most new country but i occasionally hear something on the radio I like. At an early age, my family listened to country almost exclusively to the point where I thought all the different types of country were all the different types of music! I couldn't put Lacy J. Dalton, Buffy Sainte-Marie, Dolly Parton, Merle Haggard, and Kris Kristofferson in the same category. Although now that I've grown up I can hear that they are all country, but as a kid my ear was trained more for minute differences in country styles, than for recognizing country from other types of music. Country isn't all I like. Some other bands and artists I like: The Cocteau Twins, Dead Can Dance, Rasputina, Jefferson Airplane, The Beatles, Rich Mullins (I'm not Christian but some Christian music is amazing), ), The Raventones/T.R. Kelley, Planet P Project/Tony Carey, Sinead Lohan, Donna Williams, Suzanne Vega, Phideaux, and Jethro Tull, to name a few. I love the Cocteau Twins in particular because they are everything being sensing is about: Words are chosen for their sound, not their meaning, the voice becomes yet another instrument rather than a conveyor of words, raw emotion pours out of them, there are layers upon layers, and they were around for long enough there's lots of their music in a variety of different styles -- including their later stuff where the words have more meaning than just sounds. Each period in their music has its benefits and drawbacks but I love them all, or nearly so. Their music comes as close as any music can come to conveying how I experience the world, as what Donna Williams calls 'pattern, form, and feel'. And Elizabeth Fraser has a beautiful voice, I once had a teenage crush on her. As I type this, I have a cat sitting on my shoulder, cheek to cheek with me, peering around and occasionally rubbing me. My relationship to her goes back 15 years to when she was six months old, and we've rarely been parted since. It's been an honor to watch her grow into a wise but crotchety old lady cat. She knows she's technically older than me and tells me so sometimes, especially during arguments. She has trouble with the fact that there are parts of the human world I know better than she does. She sees me as her big, dumb kitten who needs protecting, and is beside herself with worry if I end up in the hospital (which seems to happen frequently these days). I don't experience myself as having a gender identity, I call it being genderless. You'll sometimes see the pronouns sie and hir in my work, they are gender-neutral pronouns pronounced 'see' and 'hear'. I was raised female, which gives me both disadvantages (outside the trans community) and advantages (inside the trans community). You don't have to remember my pronouns, lots of people have trouble with gender-neutral pronouns. I won't be upset with you. People make mistakes, and some people just can't get the hang of new words, and that's okay. I have vocabulary problems myself (mostly comprehension), I'm not going to penalize other people for having vocabulary problems of their own. Right now my father is dying of cancer that's metastatized so many places they can't figure out where it started, my mother has severe myasthenia gravis that can land her in the ICU (and she's my father's primary caretaker), my "second mother" (who took over when I grew up and my family didn't know how to prepare me for the world) has endometrial cancer, and my cat is getting old. All of this is bringing death to the forefront of my mind and my poetry. In fact I think I've been able to write more poetry because of all the feelings about so many people dying or with precarious health. It was easier to handle when it was me that was going to die (averted by diagnosis and treatment of severe adrenal insufficiency that'd been going on for years). It's harder when it's someone else, someone you love. My other hobby is crocheting, and a lot of the time if I'm not writing, it'll be hard to find me without a crochet hook or occasional knitting needles in my hands. I love to be able to make things. I have been making hats and scarves with spare yarn (which I have a lot of), and putting them in City Hall Park wrapped in plastic, with notes saying "If you're cold, take this." I know what it's like to be cold in the winter, and if anyone takes them and stays warm I'd be overjoyed. You may have noticed I'm long-winded. This is actually the result of a language disability that makes it difficult for me to leave out details, to see two almost-identical things as perhaps something that doesn't need repeating, and to summarize or condense down my writing. I know this is a flaw in my writing, and it even prevents me from reading it sometimes, but I've found no solutions. Sometimes on my longer posts I'll put a "TL;DR" ("too long; didn''t read") summary at the end in bold letters for people to skip down to.. But even those don't feel adequate, even when I can do theme, which is not always. I think I'm getting better though. Learning haiku and other short poetry forms helps me condense my words better. Anyway, I hope that gives you enough idea of who I am. At my most basic, I care about Love more than anything (whenever I come near enough to death, I feel like I get asked the question "Did you Love, and did you express that Love properly?"), but like everyone I get sidetracked into things that are much less important. I try to make my writing an expression of Love. Sometimes I succeed.

6 responses »

  1. Amanda:

    1. Which “mindspace” do you like more/feel better functioning in? The no-language pattern thing, or the language thing? Presumably, since you said it takes more effort to “be” in the language-use mindspace than the other one, it’s easier to do the other one?

    2. Is auditory language use a different “thing” from writing, for you? If so, is it more “available” more often?
    Maybe you could set up a system where people either write notes to you, or type stuff on your keyboard/voice-synth device? Maybe you’ll connect with it more easily, and not have stuff go bad.

    To be honest, since I’m not autistic (at any rate, never been dx’ed as it) — my primary thing is the visual impairment, like I’ve mentioned before — it’s really difficult for me to relate to your experiences, and stuff.

  2. Maybe you could ask them to do something like mark your inhaler with 1, and mark the nebulizer machine with 2. So this way people who are new to the procedure know what they’re supposed to do.

  3. Something I’ve experienced a lot that seems like it might be related to this is, when doing something with an object (or set of objects), often I find it impossible to stop completing the process of whatever I’m doing in the middle and do something else. It’s more than just being “annoyed” with being interrupted, it’s like physically being locked into actions sometimes. E.g., if I am helping Matt with dinner, and I’m chopping a carrot (for instance), I will just chop until I run out of carrot even if someone is telling me to do something else. So I try to be very sure when I do something that there’s not going to be any need for me to be “on call” to do other stuff. That isn’t always feasible, though.

  4. VioletYoshi,

    If I understand Amanda’s description of events correctly, I think the person did understand that Amanda needed to do one before the other. The difficulty is not “failure to understand the procedure” the difficulty seems to be that the person responsible for ensuring that Amanda does what she needs to do to care for her breathing every day didn’t fully grasp that asking Amanda to simply hold something without using it is an action that Amanda can’t do. Based on some things she has explained in other blog posts about how her brain is wired and how her body works, taking something she is accustomed to using tends to immediately trigger her to actually use it. It happens so automatically and so fast there’s no time for her conscious brain to interfere and decide, “wait, I need to just sit here holding this until after I can receive the other thing I need to use first.” She also has language processing issues that means someone telling her “could you please just hold this for a minute” may not necessarily register right away. And even if it did, it still wouldn’t be enough to override her automatic response to holding the concrete object in her hand.

    What the workers need to do is NOT HAND HER THINGS until it is safe for Amanda to immediately USE the things they are handing her.

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