Thursday, June 16, 2011

'Wish I knew you' - zombie caretaking

During part of the testing, to check my awareness, I was to list all the things starting with F in a few seconds, I started, as fast as I could with my inhibited speech: “Fabric, French, Frog, Fibernachi sequence, Filibuster..”

After the seconds, when I was blinking in frustration at not adding ‘Fermat’s Last Theorem’ or ‘Fermat’s Little Principle’ (Okay, I’m a math geek, If I had read the hobbit recently I would have said Frodo but I forgot!), the RN, a woman the same age as me or a few years younger gave me a point for the F-word, “Everyone thinks it, you didn’t say it but I will give you a point any ways.”

Then she continued, “Gee, I wish I had known you.” Which led into her knowing about Fibernachi and the 12th century man from Pisa who published Liber Abaci and introduced the idea to the world.

It stuck in my head, ‘..wish I had known you’ because I was sitting right in front of her. I was still alive (honest, no zombie caretaking here!). And I was still mentally active and aware and yet, for a person assessing the mental function of palliative individuals, I was already gone, not dead perhaps but as good as.

‘Invalid’, as a ‘client’ or ‘person under care’ I am talked about, talked over (as an EMT and Linda literally talk to each other over my head on the weekend), or tolerated but I am, for this society, functionally gone. An ‘invalid’ is a person who is sick, who needs care and disabled, but it is also a word which means void, without cogency, without substance, deficient. The word comes from the latin ‘valid’ which means strong and ‘in’ which means ‘not’ – and so from times and generations before the idea of an invalid is tied to someone who has no voice, due solely to strength. The community already accepts that there are those who are not part of society, yet who are not dead, but not heard either: they are invalid.

We all have a voice, but as the film ‘The King’s Speech’ illustrates, society is well trained to assign ‘sub-par’ to anyone who is different. How a speech impediment makes a man not worthy to be king, or to be a lesser king is an idea which has not changed in hundreds of years. Richard III isn’t shown with a hunched back because of diversity and acceptance but because the Christian misinterpretation that ‘imperfect outside means imperfect inside.’ But the difficulty doesn't diminish a person, it only allows them to show abilities in overcoming or integrating it.
With one new worker a day (including today), while two of my regulars are on holiday, I am bombarded with being laughed at, mocked, made to be a punch line or told what my reality SHOULD be. ‘Time for dinner!’ my worker says at 2:30 in the afternoon.

“No, time for breakfast, as I just got up.”

“Breakfast?!” with a peal of laughter, “Far too late for that.” She was not good in adapting herself to her client (me!). Good workers do, bad workers would have us all be disabled obedient robots, eating at the same time, having the same problems and the same solutions.

The thing my regulars know is that ‘The schedule follows the body which follows the disease.’ – and when I get up, there are things I need with my first meal, which is breakfast, whether that is as 2:00 am or 8 pm. If keeping a strict schedule of ‘wake now’, ‘eat now’, ‘go out now’ would keep me functioning better and living longer I would do it. But at a point in the disease, when ‘will power’ can’t make someone with MS not have a spasm, or someone with Parkinson’s not have fog, it can’t make me have the 9-5 life either. I follow the disease so that I can live the best quality of life while not dying. And it has kept me in the 'not permanently dead' area so far.

While I am in need of care, I am not a person who is morally weak or weak in intent or purpose. My body is not ‘failing’ any more than you are ‘failing’ by growing a day older (people have loss of function in old age too). True, it does not function anymore, and some systems are not working correctly, but I am not a disposable person, a discard. There is no need to wish you COULD HAVE known me when I am still here. A person who is unable or unwilling to give value to my words by lack of waiting to hear them due to my being speech impaired, reveals how that person judges others: superficially.

In a turn about, I woke yesterday not with ‘word salad’ (where I know what I am saying, or sometimes not, but it comes out as words that don’t connect or make sense), but where everyone else had word salad. Or more likely, where I had scrambling connecting my hearing to the language center. But to sit and hear Linda in earnest telling me ‘drub libble scan turolo blat, ver iplico snlort!” convinced me that I could likely assist her speech best by going back to sleep. Three hours later, she was cured (she claims that she was speaking normally). I nod reassuringly, as advised by all the pamphlets on ‘care’, and then converse over her head.


monnsqueak said...

Heyyy lovely! Once again you've made me teary with your insights and talent with words. I feel honoured to know you even though it's long distance. Maybe you need a tshirt with I'M STILL HERE! on it ;)

Yay for having brekky at 2:30 in the afternoon - this is something I've done plenty of times in a cafe, why not at home? Also, as a grownup, you get to eat icecream for breakfast if you want, or leftover pizza. I wouldn't recommend trying to order pizza delivered before 10am though, for some reason they just laugh at you. Sad, really. ;) xxx

wendryn said...

Your math geek comment made me laugh - Xander would agree!

It amazes me how people can say things like "I wish I had known you" without thinking about what that feels like to the person they are saying it about. There is such a basic lack of respect there!

I started thinking about the roots of "invalid" when we got a very old cookbook that had a section on invalid cookery. I read it first as not-valid cookery, which was very confusing in a cookbook, and then figured it out. My grandmother was considered an invalid for the last year of her life, but I'm sure she would have been very upset to be invalidated!

I am glad you are still here, though somewhat irritated that you have to put up with people who don't think before talking.

Cereus said...

An aside:

Richard III wasn't actually that bad of a ruler. Not amazing, none of them were, but he seems to have actually had a greater sense of just treatment than most. But he was the guy that Queen Elizabeth's family took over from, so they had to have a legitemate reason.

And art historians have x-rayed the paintings of RIchard II, and the exaggerated hunchback was added later. What great propaganda. Humped = dastardly apparently. :/

Linda McClung said...

At the assessment, I was fascinated by your word choice and the way your mind came up with responses. What was clearly evident was that you're still one very smart chick. You have amazing coping strategies - you reason out answers, you use physical tools and mental tricks to help you. Your word choices were equally interesting. Your brain taps a schema and you can come up with lots of related words - like the math ones.

I can see how "Gee, I wish I'd known you..." is degrading. You're not dead yet. And you are an amazing person, very worthy of being known.

I am so glad the regular careworkers are finishing their vacations this year. The new ones have taken so much of your energy and haven't worked with you to provide the best care for you.

I'm cured?? Hmmm... I'm glad the sleep worked out for you, er, me?

Linda McClung said...

Forgot to mention that I really liked your photos. The top one is definitely you and the middle one is definitely me. I'm always looking for things and most mornings it is my keys.

Lorna, Bob and Liam said...

Okay,instead of leaving yet another totally appreciative and sincere comment about how articulate and moving this entry is, I'll tell you a wee story.

Your description of Linda's word salad includes this phrase: "veriplico snlort" and that made me think of one of Liam's favourite kid books by Sandra Boynton "Dinos To Go", in which she describes "Snort":

a mean red dinosaur,
Always gets his way.
He told me not to tell you more.
That's all I have to say.

And as I sat there misty-eyed and nostalgic, I glanced over the review of said book, which points out that it is very appropriate for "the very small reader." And I thought "Huh. I'm a very small reader." And realised one of my favorite books EVER qualifies me to be a preschooler. *sigh*

Although I have graduated to books without pictures. Sometimes. *grin*

Love ya.

Baba Yaga said...

Um. "Had known". I understand thinking it, although even thinking it ought to cause squealing brakes and backing up to re-think, but saying it? If you said something so tactless, it'd be evidence of all sorts: apparently the impaired thinking of the Providers doesn't count.

(I was once physically chased out of a building, in extreme terror, by a psychiatric nurse, aided by the secretaries. Funny that my error in being terrified was the focus of much concern, but his impaired thinking in supposing that his was a reasonable response was never, ever mentioned.)

She was right to regard you and the contents of our mind as interesting and wonderful, o'course.

As for "too late for that" - I can hear that laughter, and it makes me shrivel inside. It connects exactly to your comments (the assumption of) moral impairment. Too much thinking in straight lines and without ever actually thinking.

Anonymous said...

I'm just glad i know you, however long distance, now.


Neil said...

I have to admit, dear, that I kinda wish I had known you when we were both able to go long-distance cycling. To be talking to you in the past tense is a little tacky, though.

I also laughed at the math geek comment, as well as your explanation that you're not permanently dead.

As for breakfast in the afternoon, your "care worker" has obviously never encountered a teenager. Or a shift worker.

I will forgive Linda for talking over your head because EMTs sometimes need information quickly, and get impatient with the patient.Since you don't indicate your level of consciousness at the time, I'll give your wonderful wife the benefit of any doubt. (We have a rule in my house: the wife is ALWAYS right. Don't know how that would translate in your situation...)

How many seconds were you given for the word test, please? Just curious, I am, but it sounds interesting, and I'd like to try it for fun with my Youngest Son.

You really need a shirt that says NOT DEAD YET!

Love and zen hugs to both of you,

Noisyworld said...

Blimey you expect the carers to talk to you not the impediment... most men haven't got the hang of talking to a face yet!

I now grovel to all the men who have gained this skill ;)

Any meal which breaks a fast is breakfast, plus my breakfast is anywhere between 10am (rare!)and 3pm (more common than it should be!)
my reason/excuse- it's quiet at night :)

I hate that people talk about you in the past tense, I have only come to follow you at a time where communication has become difficult for you- but I still think you are one of the most insightful writers out there.
If I had the spare dosh I'd buy you...,9,clothing.Not_Dead_Yet_T_Shirt___Material___100__Cotton_Knit___FREE_T_shirt.html

(fingers crossed that link works, they're always temperamental for me lol)

Raccoon said...

"I nod reassuringly... then talk over her head."

Sometimes, that's all you can do.

Hey, I'm not normally awake before 10 AM, myself. Which means breakfast at close to noon time. I have found that eating too early in the morning gives my stomach problems, too.

At least your evaluator recognized what you were saying, even if you were mumbling. Yeah, she could've been a little more tactful, but she understood the words that you were saying.

Elizabeth McClung said...

Monnsqueak: Hi! Thanks for the comment - I do need that t-shirt, indeed.

Yes, we can only have pizza at 11:00 am - I have a pizza hut which has a lunch special pizza for $2.99 starting at 11:00 am, which is 1 hill, one downhill and a steep half block uphill from the apartment. An incentive to wheel it, for breakie, supper, tea, or dinner.

Wendryn: The way the system is set up, people look to Linda as the survivor, so the 'Oh, that's awful' on hearing the diagnosis has them turning to linda going, "Are you getting counselling on your loss." and I'm thinking, "Hello, still HERE." We tend to view those who are terminal as 'beyond' and funnel assistance and care to those who are 'left behind' even if they aren't quite yet.

Invalid is still used in speech, it amazes me the amount of words we have for impairments, or illness.

Cerues: Yes, much like traditional villivication, it seems Shakespeares' portrayal has overshadowed reality, which makes him a good example. Much like Claudius (who also stammered) was considered worthless, feeble in mind and body and yet turned out to be one of the top Emperors of Rome.

Linda: I probably have more access now than before if stimulated, the more a person brings to the conversation, the more schema I can access in terms of language, memory and connections. I do want to get that game where you test your brain on listing things as fast as possible.

Yes, your word salad, along with everyone elses is cured, aren't you relieved?

Yes, you forget and I am the one with brain damage who uses systems as I can't afford to forget.

Lorna: Worry not, since I favor a 'bear of little brain' and Paddington Bear, whose understanding of things is always a bit dodgy. Also been reading Dr. Suess.

Baba Yaga: the chasing out of a building sounds like a story I would love to hear more of, but yes, when we ask a question we have 'hyper anxiety and stress' and when they do it they are 'scientific investigating' - why almost all medical persons think that we are incapable of thinking or observing for ourselves either sheds a poor light on them or on the rest of the people they see ("Gee doc, is the hachet sticking into my cranium really the cause of my headache?"). And doctors say, "Patient induced," or "requires further observation" or "Likely isn't relevant" instead of "Don't have a clue" or "ME? I do urinary tract infections mostly and sometimes a fracture, this stuff you bring I MIGHT have studied 30 years ago".

Elizabeth McClung said...

Baba Yaga II: The workers who assume I keep to a standard based on what? Railroad time? Instead of what is best for me are the ones who do the worst, because they wait for me to adapt to some image they don't share instead of wiping it out and accepting what is happening in the NOW.

Rachael: I am glad to know you in the now too - after this I recommend a Oujui Board. ha.

Neil: I think it was 30 seconds for the test, another one was the listing things with four legs (I included, 'Humans who have not yet learned to walk' - the old Sphinix riddle of 4 in morn, 2 at noon and 3 legs at night.

Sometimes Linda needs to talk in representation for me. I just have to hope she remembers she is REPRESENTING me and act as would be in my best interests instead of her concerns - yet she never asks the EMTS how soon I can race. She is always right, except when I am or we both aren't. ha.

Noisyworld: Since I need pills after food after a sleep and the food must including yougurt, it is the breaking of fast. Also the joy of prunes and grape juice.

The impairment is a delayed response and a slur due to the left side of my tongue and mouth having weak to no muscles.

Raccoon: True, I hate when people go, "What?" (I repeat), "What?" - she was trained to hear all speech. And Sometimes I need someone to speak for me, luckily I have someone I trust and who likes me.

JaneB said...

That last paragraph is hilarious - you may have a different writing style these days, but it retains its humour, punch and power. I'm proud to know you, the now you, and hopefully the future you for a long time to come!

Dawn Allenbach said...

It's funny how when people know a person is going to die, they pretty much start acting immediately as though that person already IS dead. So sad.

Neil said...

Thirty seconds to think of all the things beginning with F. Hmmm. Thanks!

How about a shirt from Monty Python and the Holy Grail, with a photo of the peasant saying, "I'm not quite dead yet? I feel fine, I think I'll go for a walk."

Love and zen hugs,

Casdok said...

The word superficial stands out for me here.

Rick said...

Nothing shocks me anymore .....

As a US citizen, I am always amazed at how language and concepts can be used to control people's thinking ...

Its not by chance .....

Rush Limbaugh calls Obama a liberal (in my opinion he would have been called a republican 15 years ago)...... in doing so he moves the meaning of the term to the right ....

These unconscious caretakers picked up there ideas and "beliefs" somewhere ........

I work for the public and have seen a greater change in people in the last decade than in 30 years before ..... there is a rudeness, self-centeredness and willful ignorance that escapes my comprehension ...

Aviatrix said...

I'm very glad to know you, and should keep my commitment to get to know you better. I tried your F-word test. I wrote them out longhand, which may have affected my total output of words, but then so does your speech difficulty, so maybe we're even. I got:

Frankfurt, frog, fashion, fame, fart, feldspar, field, fault, fixative, fjord, Finland, fate

Thirty seconds is pretty short. I don't know how anyone could decide whose list was better.

Thank you for curing Linda, too.

Kate J said...

You don't have to be ill to want breakfast at dinner time... or ice-cream at breakfast time... or whatever you want/need whenever you want or need it. Has she never heard of the 'all-day' breakfast ? Very popular over here!
My dear neighbour Eileen, who died last year at 94, liked a bit of cheese and a cracker at night but the 'carer' didn't approve, said it would give her bad dreams. So she'd sometimes wait until the carer had gone and then give me a call. And why not?
And thanks for all those 'F' words too. Is this like Sesame Street? "and today's show is brought to you by the letters F & Z and the number 3".
Hang in there, girl!
Love & peace

Lene Andersen said...

Loved how you described Linda being cured, nodding kindly and talking over her head! Wonderful turn-around and makes the point so very well.

The gall of someone saying they wish they'd known you is unbelievable. And that's someone working in palliative care! You'd figure they of all people would know better!

Neil said...

Casdok: I love your autism rap!

Beth: I hope things are getting better for you, and you can be back online soon.

Linda: thank you for staying cured. :)

Love and zen hugs to all,