Posted in Speech

Shitty speech. Kinda almost literally.

So I can get shit and shit into the shit, so I can shit the shit into the shit.

Me, just now, out loud.  I was actually trying to talk myself through taking some meds.

I said at some point I’d write more about speech.  That’s an example from a few minutes ago of using entirely cuss words and what I call “corner words”, to create a sentence that makes sense to me at least.  This isn’t fluent speech (which I have sometimes these days), this is closer to what my baseline speech has been for a couple years.

What a cussword is is self-explanatory.  Corner words are what I call words that “fill in the corners” of sentences.  I know a lot of phrases that use corner words, that I utter as whole phrases.  (Like “so I can” isn’t three words to me, it’s one word.)  This can allow for a surprising approximation of fluency under the right circumstances.

If you’re wondering, this sentence actually translates to “So I can put hydrocortisone and propranolol into the cup of meds, so I can put these meds into the feeding tube.”  It only makes sense in context, obviously.

Cusswords are not just tics for me.  I have cussing tics.  I also have spontaneous cussing (like the kind just about everyone has).  And I seem to have the use of cusswords as all-purpose placeholders. (I don’t have any of these things all the time, but when I do, that’s how it plays out.)  There’s a reason for my blog title.  Well, lots of reasons, but this is one.  I cuss a lot.  It’s my most reliable spoken words.  Sometimes my only ones.  That goes over really well.

Putting meds into my feeding tube.
Putting meds into my feeding tube.

Posted in medical, Speech

A (sorta) funny emergency speech story…

This post is part of a series of posts on the topic of speech.  Please read the first post in the series, New Blog Topic: Speech, to give you some idea of the backstory here.  99% of the time I’m completely unable to use speech as a primary mode of communication, and that is still true.  But this speech blog topic is about both my baseline level of speech these days, and an emergency speech mode that sometimes makes me fluent without any conscious control over the process. 

…well it’s funny when viewed from a certain perspective, and in hindsight mostly.  And it illustrates a serious problem of inconvenience with emergency speech.  It also happens to be the shortest period of emergency speech I’ve ever had1.

So one day I decided to go to the farmer’s market. Someone would drive me there and I’d walk home. I didn’t take a lot of mobility or communication equipment I really could’ve used.  I wasn’t expecting to need it.  Mistake.

A bunch of booths at the Burlington Farmer's Market in City Hall Park, Burlington, Vermont.
The Burlington, Vermont farmer’s market. I don’t know exactly what I was expecting. In California, farmer’s markets as I knew them were roadside stands where fresh produce was sold cheaply and mostly poor people (including the farmworkers) shopped there because it was cheaper than the grocery store. That is… so far from what a farmer’s market is around here that I found myself quite surprised by it all. I did find some amusement though — there were Anaheim sweet peppers with no spiciness to them at all, not even a tingle, labeled with a spiciness warning. And even the best hot sauce I could find wasn’t that hot. It made me realize how Californian my food tastes are.

Anyway, I tried to walk around a very long line at one of the booths, and hit a slippery patch of mud. I took one of the most spectacular falls I’ve ever taken.

I don’t know if you’ve ever seen someoone W-sit. I’m hypermobile and such a posture comes naturally to me. (It’s considered horrible for you but if your joints are loose it’s a very stabilizing sort of posture.) Normally, W-sitting looks kinda like this:


So just imagine that I’m lying flat on my back and my legs are kind of in that W-position except somehow they’re folded so they’re underneath my back, and you’ll get the general idea.  I’m at that point in excruciating pain.

So I yell — with total clarity and fluency and no trouble at all making myself understood, nor any pre-planning to what I was going to say — “WILL SOMEONE PLEASE HELP GET MY LEGS OUT FROM UNDER ME!?

And someone runs over and does it.

The sharpest of the pain vanishes instantly.

And then I can’t talk anymore.

And at that point there’s paramedics, and a lot of information I have to give them, and talking would be really convenient at that point.  But nope.  No fluent speech available.  Barely any non-fluent speech available.  And I’ve got several broken ribs and two sprained ankles.  (They concentrated so much on the ankles that none of us even noticed the ribs until later after I’d got home.  Fortunately(?) because I have osteoporosis, I’m used to broken ribs and knew what to do.)

It ended up okay, but this is a good example of the way that emergency speech is largely outside my control.  And how it doesn’t always have a lot of rhyme or reason in terms of convenience — it would’ve been nice if it stuck around for the paramedics, but it didn’t.  My brain has a mind of its own when it comes to the occasions it decides fluency is gonna happen.

I don’t remember exactly when this happened, other than that it was the same summer I was in the ICU, after my ICU-acquired emergency speech2 had gone away.  I also remember that they actualy discovered the many healed broken ribs, along with a stable stress fracture to my T12 vertebra, the December after this.  They’d been doing a lung x-ray and my lungs were fine but other things were clearly not.  So this would’ve been the summer of 2016, I just figured out by checking some records.

But… yeah.  Apparently my brain decides when fluency is medically necessary, and it doesn’t always agree with me on the matter…

1 Understand I haven’t had this happen that many times. But the amount of time I’ve had it stay on more or less consistently has ranged from seconds to a few months. Right now I’m in a very weird period where it’s trying to stay on longer than it ought to due to a huge amount of medical crap happening, and the speech trying to turn on even past the point it can sustain itself… it’s causing all kinds of mayhem in the process. And by mayhem I mean actually dangerous to me.

2 This speech had been longer-lived than just a sentence, and lasted my entire ICU stay and then a little after I got out of the hospital. It began sometime in between when I had a long series of seizures, and when I stopped breathing. The existence of speech was actually one of the factors that caused people to call 911.

Posted in Speech

New blog topic: Speech

I am going to be starting another blog topic series of posts, probably. This one is about speech. I haven’t really written a lot about my experiences of speech in recent years, but things have changed in two major ways.

One is that I’ve unintentionally developed a small amount of speech that actually works.

This is not enough for me to consider myself a speaking person. But it’s more than I’ve ever had in my life. By which I mean, even when I sounded much more fluent than I do now, I never had a consistent set of words that would communicate my thoughts. I didn’t have consistent anything. I now have kind of a consistent baseline that’s communicative. As usual with these things, I’m discussing what’s really happening for me, not what appears on the surface.

The range is very limited though. I’ll get into what it is later because I think that’s important information for other people with speech problems. But for instance, it started out with just cuss words and words that were highly emotive. That’s still my strongest set of speech. Also things you would say to a cat. And what I call ‘corner words’, which will probably require a lot of explanation. But this is all highly limited and narrow areas with high walls around them. This is not something where I can substitute it for typing and have it work. Instead it sort of enhances the typing.

Most people I know who type to communicate and are considered non-speaking actually have some amount of this kind of speech, by the way. It’s just not enough to use as your main way of communicating. Very few people are 100% speaking or 100% nonspeaking, and which one you’re considered seems to vary a lot. And depend on far more than what speech you have.

So… the other thing that’s happened, and that I’m more interested in discussing in some ways, is what I call emergency speech.

It is not voluntary. I can’t turn it on and off at will. It is not frequent. It has happened a handful of times in the huge amount of years I’ve spent not speaking. It does not always happen even when it could be very useful or even life-saving. But it does happen sometimes.

And that is where i gain fluent speech for anything from seconds to weeks, always in the context of a medical emergency of some kind.

Again I can’t emphasize enough, this has happened a handful of times. This is not something I can turn on and off at will. And it doesn’t even happen every time it’d be useful.

And it does something horrible to my brain — well lots of horrible things — that I really want to discuss, because it’s clear that fluency of that level only happens by cannibalizing large parts of my brain functioning. In ways that are spectacular and potentially dangerous.

And I think that’s important to document.

I think it’s important to show what happens when someone’s brain forces the issue of doing something that it really has no business doing.

Because it’s ugly as fuck.

I used to just go with it and figure my instincts knew best, but at this point I am doing my best to shut it down whenever it happens, because the results are pretty terrifying.

And I think that’s important for people to know.

Also, this is not an unheard-of phenomenon. I have spoken to researchers about it. And I’ve noticed it in both official literature, and in accounts by parents.

One of the most terrifying — especially now that I know the consequences of emergency speech long-term, but even before that its as terrifying — is these parents who’ve discovered that their children who can’t normally speak, speak more fluently and are more social when they have high fevers.

What’s terrifying is that given the world of disability parenting and autism parenting in particular, instead of seeing this for what it is, there’s a group of parents who see this emergency functioning mode as a good thing. And therefore attempt to do things to give their children high fevers.

Like. Not only is that abusive and unethical and medically dangerous. But also forcing a child to function in emergency mode — especially while sick — will do terrible things to them, especially over the long term. And nobody will connect the dots because nobody really gives a shit about the effects of overtaxing people’s limits. And emergency mode is all about going beyond your limits for a short time — like a mother lifting a car off a child despite not normally having the strength. You couldn’t and shouldn’t do things like that every day, they happen only in emergencies for a reason.

Anyway I have a lot to say about speech. And I haven’t really written a lot on the topic and on the changes I’ve been through in recent years with baseline speech. And I haven’t written about emergency speech either. So these are both broad topics that I want out there mostly for the benefit of other people experiencing them. I’ve always benefited from other people describing their experiences of things, so my intent in writing about this is to possibly benefit other people in this same way. And also to warn people of the dangers, because there are actual dangers here. I didn’t realize how dangerous emergency speech is until I got stuck in a cycle where it kept popping up long after it was sustainable to continue.