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:

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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 medical, Problems and solutions

I definitely stand with the local nurses union.

Mel wearing a button put out by the nurse's union at UVM Medical Center. It reads, "Put Patients First!" and in small print, "Vermont Federation of Nurses & Other Health Professionals AFT-VT".
Mel wearing a button put out by the nurse’s union at UVM Medical Center. It reads, “Put Patients First!” and in small print, Vermont Federation of Nurses & Other Health Professionals AFT-VT.

I was in the hospital for a month recently.  I was able to see the conditions that nurses were working under.  It was bad.  I am 100% behind their efforts to fight for their rights, which were gearing up even while I was hospitalized:  Nurses were carrying signs through the halls, going places with them, wearing buttons, talking about things.  This has been prolonged and their signs are now all over town.

Earlier this month, Seven Days VT published an article called Nurses, UVM Medical Center Remain At Odds Over Contract which said:

Amidst a tense contract bargaining negotiation, nurses at the University of Vermont Medical Center announced at a press conference Friday morning that they had filed a complaint against the hospital with the National Labor Relations Board. The nurses allege twenty labor violations, including unlawful unilateral changes to staffing grids and unlawful ordering of employees to remove union buttons.

[…]

Julie MacMillan, a registered nurse and the union’s lead negotiator, said the nurses feel the community should be aware of the problems at the hospital. She said in past negotiation cycles, when the hospital was not in as good financial standing, nurses took cost of living adjustments so that they could keep serving the community. But now, as the hospital reaps enormous contract margins, she said the nurses have had enough. MacMillan said the union has been inspired by the successes of other labor movements across the country.

I hope they meet all of their goals.  The conditions they’re expected to work under are ridiculous.  They are right:  This is a safety issue, both for nurses and for patients.  I constantly saw nurses having to fight just to do their jobs under the amount of work they were expected to do.  All the ones I saw were trying very hard to help all their patients, and couldn’t.  One said she spends half her time on the job not doing nursing care, but ironing out problems caused by the hospital bureaucracy.  Watching her, I believe it.

And the conditions really are dangerous to patients — I was frequently in danger not because of malice or indifference, but because they were having to spread themselves too thin.  Which results in things like not noticing I take seizure medications.  Or one situation where I could no longer perform a small but vitally important medical task I normally do for myself, a nurse offered to do it for me, and I had to explain to her that I greatly appreciated the offer but that there was no way she had the time or resources necessary to do it.  Most of the dangers I faced from the hospital this time were tied in some way to short staffing, not to anything malicious on the part of the staff.  Who went out of their way to help as many patients as they could as thoroughly as they could, but nobody’s superhuman, and the long hours and lack of sufficient staffing take a serious toll.  Nonetheless, people were being their own small, quiet versions of Vasili Arkhopov every day — following their consciences even when it might be easier not to, and profoundly affecting, even saving, lives as a result.

Which is why there are signs everywhere that read NURSES FOR SAFE STAFFING and the like.

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Nurses carrying signs, one reads “Safe staffing saves lives!”

Safe, if you’re wondering, means patients don’t risk death or serious harm from the lack of adequate staffing.  The nurses I met this stay were almost all amazing, dedicated, and trying their hardest.  But without enough of them, without the resources to do their jobs, that’s just not enough.

I really, really hope their negotiations succeed.