Salon thread 2: Making dealing with the world easier

[jenett]

Welcome to our second salon discussion thread. Wander in, invite a friend along, and chat! (Not sure what's going on? Here, have a brief FAQ.) The first one went swimmingly! People! Talking! About awesome stuff! Feel free to talk about anything: my topic of the day is just to get us started.

Some of the comments in last week's thread got me thinking about the little stuff we do to make dealing with the world easier for us (lifehacks). And then why. Some stuff I do (briefly, on the theory it might encourage conversation)

1) I am very boring about my clothing. (basically, a black skirt and coloured knit top, or a coloured skirt and a black knit top.) Except for special occasion clothing, it is all cotton, it all goes in the wash together, and I basically only have to think about it when I want to. When I want to be fancier, that's what jewelry is for.

2) I do not have glasses in my house. I have pottery mugs. I am less likely to drop them (yay, handles) and if I do, they break into bigger and much less transparent pieces. (I am not as clumsy as I was during the worst of the medical foo, but, y'know. It's still useful.)

3) I have no idea what I did before a smartphone, which for me is less phone, and more "thing that fills at least a dozen other needs, but is only one thing to keep track of, plus more than enough books to keep even *me* occupied for a while, and oh, yeah, occasionally it makes phone calls.")

4) I periodically write up a document called "The care and feeding of Jenetts (or at least this one)" designed to help people navigate spending time with me. I had hoped to have a sample here but a) the week got away from me a bit and there was other stuff that had to take priority and b) some bits of it need to go under access lock. (For those who can see my locked posts, I expect to finish it by the end of the week.)

Anyway, this includes things like methods of communication, privacy notes, basic health stuff, more in-depth health stuff (with a focus on "Here's what you need to know so we can enjoy time together."), things I like as presents, things I'm really bad at doing, foods I eat and don't eat (and a brief "why" so people can figure out which bits really apply in a given setting), and stuff people should know if they want to visit me.

What stuff do you do? I'm especially curious about anything where you do it and other people look at you and blink and then go "Oh, that's an awesome idea!" (I've had that with my mugs, for example.)

(A word on advice: please don't give it in this discussion unless someone asks for it. A bunch of people I know will read this have Complicated Stuff, and I trust that they have found solutions that work for them for reasons that work for them. That said, if you'd like advice, go ahead and ask for it!)

Music in the background: Last week's salon had a lot to say about the topic of music, and it got me thinking about listening to the stuff that connects us to the universe. So, on my playlist for this week's salon are "One Voice" by the Wailin' Jennys, "All Will Be Well" by Meg Barnhouse, "Brave" by Sarah Bareilles, "Allegria" by Cirque du Soleil and "Give us room to roar" from Ruth Mackenzie's Kalevala: Dream of the Salmon Maiden.

A quick reminder
As noted, the basic thing here is 'leave the conversation better than you found it, or at least not worse'. The FAQ has more help with your choices for comment (DW account, OpenID account, or anonymously) if you need a hand. Or ask, and someone (likely me, but maybe not) will be along to help. We'll work everything else out as we go.

Comments

[jenett]

I use the care and feeding posts partly as a way to remind myself, and partly because there are some weird quirks.

Here, let me quote the beginning of the health stuff, to give an idea.

What does this mean for you?
- I sometimes need to cancel plans (even ones I want very much to do) - especially if they involve me driving. Usually, I know that I will need to a couple of days in advance, or at least have suspicions.

- If you ask me to add something new to my life, I will have to do a lot of poking before I say yes or no. (this can, I understand, look a little odd from the outside.)

- How far or how fast I can walk varies a lot based on several factors. At the moment, I can rely on doing half a mile at a time, am generally managing a mile at once, but more than that is a lot more iffy.

- Travel - and changes in routine in general - wipe me out for at least a week afterwards, and often two or three.

- Jenetts do not work, think, or otherwise function well in temperatures over about 85F. If it is currently over that, the amount of stuff that can reasonably get done in a day is at least half what it would normally be. There are reasons I live in Maine.

The short version of the health stuff:
- I fundamentally don’t trust that my body is going to do what I tell it much of the time. Which sucks, but is a thing. (Most notably my lungs and my stamina, but also focus, executive function, and whether or not I have any interest in eating or food.)

- My lungs are seriously flaky and hyperreactive at times. Breathing is sort of fundamental, but I can’t ever take it for granted.

- My stamina varies a lot, and my life is a constant balancing equation of “If I do X, can I also do Y?”

- I have days where my brain just entirely refuses to function or focus. This is deeply annoying. (I also have the occasional day when retreating to bed is the only thing one can do.)

- There’s a bunch of food things (discussed in ‘food’) that mostly boil down to “I can eat in most restaurants just fine, but if you’re cooking for me, or I’m having more than two meals in a row with you, we should talk about a few things”

[batrachian]

Sitting here trying to poke at my resistance to writing a c&f (or a profile bio, or anything that requires summary, really) and the objections are falling into two broad categories.

First: It's...difficult...for me to make the necessary viewpoint shift to see what is worth writing about. (And now my brain has sidetracked to a clip from The Prince of Egypt, potentially useful, it ties in somehow, not sure how yet. Maybe I'll come back to that.) The 'weird quirks', as you put it; I don't know what is genuinely weird, what's normal variation, and what's stunningly mundane. And I really don't want to waste time talking about the obvious, which leads into

Second: I get...twitchy...about being perceived as not carrying my share of the weight, being a slacker, making other people do the work. C&F post feels like a notice to the world of 'here are the things I expect you to change to accommodate me.' And that just feels...arrogant and an imposition; it's my quirks, not yours, what makes me think I have the right to dictate how the social interactions need to go.

[jenett]

Oooh. All excellent things to think about, but hard, yeah. There's a couple of things that helped me get around it, and in no particular order:

1) Enough people have told me that having the info (and especially somewhere they can poke at it without having to ask me directly) is really helpful to them, because they can think it over in private without it being a big conversation first.

We often do end up talking about it too, but it means they know what stuff I might really care about, or that's more fraught for me, or can think about what's more complicate for them.

2) There are some things in my life where I just can't budge: my lungs *are* hyperreactive to some things, and I can't change that.

But I also assume that if people want to be around me, they would like me to continue breathing, and are okay with some limits on what they do (or where we are) that help that. We might negotiate on the specifics (and depending on how I'm doing in general, there can be quite a lot of leeway) but there are limits on what I can do, and we'd rather talk about them than have me turn blue.

(I like blue as a colour, but not for my skin.)

3) For the stuff where there's more flexibility, it helps me remember what works when I'm distracted or brain fried or whatever else.

The one that springs to mind was arranging to meet friends for brunch-like food recently, while I was in Boston, and one of them proposed a vegetarian place. And I looked at it, and after a few minutes went "Y'know, are there other suggestions?" Because, in the scope of that particular weekend, I suspected I'd want more protein that meal, and I don't do soy protein at all, and I'm trying to be less grain based. Which limits one's options at a vegetarian place for breakfast.

And - in part because she knew there's Food Stuff - it wasn't a big fraught conversation at all, just a "Ok, right, what else works?" And that was about 30 minutes less Complicated in my life, and that was very handy. (And then we ended up going somewhere she could be introduced to the wonders of the lime rickey, and all was good with the world.)

[batrachian]

Taking points in order.

1) I...haven't heard this from anybody. Jury's out on whether that means they didn't ask, or if I'm not listening.

2) I suppose that I'm lucky here, then; there is only one thing coming to mind that is an Absolute Hard Limit (serious food allergy), and it...doesn't actually come up very often, for various reasons.

3) Potentially useful, but only if one actually refers back to it. Given my spectacular track record with journals, calendars, notebooks, and external brains of any kind, this is actually a fairly big hurdle.

[elisem]

Your last paragraph reminds me of ... well, a lot of things I've dealt with.

I was really startled by something when I stopped wearing hearing aids and started having to tell people how much I was lipreading and how that could work. There were some friends whose reaction was dismay that I hadn't told them before how hard it was so that they could help. It turned out that my default assumptions about people not wanting to be bothered were not always so. (Sometimes they have been. But finding out how much some people really are glad to work together on stuff was revelatory.) But I might never have done it if I hadn't needed to stop wearing the hearing aids for other medical reasons.

It's still tricky.

:offers solidarity on the twitchy stuff:

[batrachian]

Hugs? Are hugs okay?

This...helps. it's not just the 'are they willing to accomodate', there's a nest of 'can I admit I need the help/accomodations/etc'. Which is pretty much entirely in my brain, and I'm working on making it less...defensive.

It's good to have concrete proof I can use to fight back the brainweasels, though. Thanks. :)

[elisem]

Electronic hugs are just fine right now, and thank you.

Glad the thing I said can be useful. Useful is a high virtue of my people. :-)

My brainweasels, in tandem with my Defensive!Brain, have been known to tell me all sorts of things that my friends later patiently and lovingly disagree with. My Defensive!Brain has very inventive notions of how to protect me, and every now and then I have to sit down with it and explain that eliminating all those interactions with real live human people might look like a sensible precaution, but there turn out to be major downsides, O Defensive!Brain. Then it looks sad, and I make it some cocoa or something and thank it for trying to take care of me, even if the implementation details went awry.

(As the joke goes, I do try not to anthropomorphize everything, because some things don't like it.)

[batrachian]

Check the model number on your Defensive!Brain? I think we might have the same one. ;)

And yes. Implementation details are tricky, and fuzzy, and not black-and-white digital logic. It makes my compsci/engineering modality very nervous.

[zhelana]

I have some hearing loss, but not enough to justify a hearing aid. Just enough to make it hard to understand small children and some women, but I can read lips well enough that most people don't even know this. The problem comes in processing speed, I will often say "what?" and then my brain catches up and I answer before they finish repeating themselves.

People might think it a little odd, but no one has really given me a difficult time about it.

[jenett]

My voice range is in *exactly* the wrong place for elisem's hearing loss. Plus, my natural speed of speech is "extremely fast".

My take - as I've said to her before - is that I enjoy talking to her a very very great deal, and I will put up with any amount of "Hey, can you say that again?" to do so. (I am also well trained now not to cover my mouth, and to repeat things she didn't catch the first time using the same words, not rephrasing.)

Anyway: she has long been one of my models for how to share the stuff that lets us spend awesome time together in a way that lets us spend awesome time together, and I'd much rather *know* the stuff that makes friends have an easier time.

If I can't adapt, well, okay, maybe I can't.

And really, training myself to not cover my mouth, or to repeat exactly what I said took a little time, but was not that hard for me to do. (Training myself to reliably speak more slowly is probably a lost cause, though, so I am glad we have protocols to deal with it when it gets especially much of a muchness.)

[zhelana]

I wish I could teach even my mother to look at me when she's speaking and not into her phone or something. lol. This is apparently a lot more difficult than one would think, and I think it's getting worse as time goes by, whether it is my hearing getting progressively worse, or technology making us look away from each other more often I'm not sure.

[finch]

The "processing speed" issue is one I have as well - a combination of processing difficulties and tinnitus can make it very hard for me to understand what someone is saying, but often I'll figure it out right after I say "what?" People I hang out with often know that "what?" means "working on it" as often as not and don't mind when I interrupt.

The problem I run into outside of Known People is that people will interpret "what?" as not understanding instead of not parsing what was said, and they'll launch into an unnecessarily explanation which (a) makes it harder for my brain to catch up to what they said before because now it's trying to parse New Info and (b) results in them thinking I'm rude when I cut them off with an answer. Have you had any luck dealing with it in those kinds of situations, or does it not usually interact that way for you?

[zhelana]

Sometimes I'll touch my ear when I say, "what?" to try to indicate it's hearing not comprehending. That usually works, but sometimes not.

[finch]

That's a good idea. I'll have to try to do that and see if I can make it a habit. :) Thanks.

[elisem]

Zhelana's idea is a useful one, I think.

The problem I run into outside of Known People is a little different: some people interpret "What?" as "I disagree with what you said! How could you say such a thing? Are you a fool?" or something like that. And that does not lead to easy conversation.

[finch]

Oh wow, yeah, I can see how that would turn into an unpleasant conversation very quickly. I wonder if that's a regional thing, and maybe a different word choice like "excuse me?" would help?

[elisem]

The same thing happened with "Excuse me" except then they assumed they had offended me. However, it turned out that switching to "Say what?" or "Say what, sorry?" worked pretty good, so I go with that if there starts to be trouble with the other ones. Just plain "Sorry?" works pretty well too.

Keeping a nice neutral tone, a sort of "brisk and worn-by-repetition-to-mechanicalness" tone, helped too, I think.

[kyrielle]

...I was going to say everything I could think of could be misinterpreted that same way, and I came back to find you had given one that I don't think can. ROCK. Because I somewhat need this too. It is very frustrating to be missing one (critical!) word and say "What?" and get an expanation. Or worse, CONTEXT.

"Blah blah blah blah." "What?" "Well, you know, because of the farm visit this weekend...."

Me: "..."

[mrissa]

I have had this experience with Other Monkeys also. It's quite bad enough without a hearing loss, and I think with one it would be far, far worse.

Other Monkeys are pretty poor stuff sometimes.

[elisem]

Oh, the Other Monkeys. So very yes.

What worries me sometimes is that I just know I'm being somebody else's Other Monkey.

[mrissa]

Yeah, I know. We just have to do the best we can with that one, I guess. My brain wanted to write a thing called "Everybody's Someone Else's Monkey," but that different, and putting "Other" in there tips the scansion off.

If I had a nickel for every time I said, "Scansion is a harsh mistress...."

[kiya]

... I am now mildly earwormed with "Everybody's Got Something To Hide 'Cept For Me And My Monkey"...

[kyrielle]

"Everybody's Someone's Other Monkey"? ;)

[adrian_turtle]

In the last 6 months or so, I've become a lot more aware of how much I rely on lip reading to assist my hearing. I don't think it's a coincidence that I started using reading glasses 7 months ago. It's nice to go to synagogue and change glasses and have the prayerbook pop right into focus. And obviously it's more important to see the prayerbook than to see the person leading services. It was kind of shocking to realize there was a tradeoff between me being able to see the book in my lap and being able to hear the person 20 feet away. (In the sense that "hearing" means parsing spoken language. Audiologists have told me there's nothing at all wrong with my ability to hear simple isolated sounds.)

Like several other commenters, I find it very difficult to ask for accommodations around this. That I have so much experience asking for help in other dimensions doesn't help much, and sometimes even makes it harder (will this be the last straw, that makes them think I'm "too difficult?") Something that does help is seeing that I'm in a community that quietly, without any fuss, tries to accommodate other people's needs. Even where it isn't possible, trying matters. Taking requests seriously matters.