Friday, June 20, 2008

Why to choose "Cripple" with your guidance counselor, some gifts, my day!

What is true love? True love is when your partner returns on a harbour plane from a secret government meeting yet still had time to find you jangly and complete skeleton earrings as a present! Ha, now I don't need to keep trying to find the Book and Bone Faire in this city. Here is what love looks like in our family.
Today was my, “I am in control and going to be a good person day!” The basis of that was that I like many of my friends was/am BURNED OUT. Why, becuase I keep pushing the envelope every day (push! push! push!) and not only does this result maybe in TIA’s (HIGHLY LIKELY) but also I can’t seem to wake up from my EARLY afternoon nap until 8:00 pm (or later). Now, when your partner starts to go to bed at 10:00 pm, that really sucks. See the original PLAN was to sleep 3:30-4:00. But there is always another phone call or thing to do, or just one more postcard, until it is 5:30 or 6:00. But today, today was DIFFERENT. For example, I went to bed only 30 minutes later than I planned on going to bed, the SECOND plan which said 4:30 (see there IS a PLAN, which says that if I sleep the same time every night and every afternoon I won’t need sleep aids or valium because I will grow naturally sleepy. If I ever kept to those times, I am sure the PLAN would work great).

I just woke up, 20 minutes ago with the right of my body frozen/paralyzed which means I had some sort of seizure while I was asleep and a tiny problem with my voice (slurry with a bit of Charlie Brown "Wa wawa wa WA WA!"). But you know, even though I had four DIFFERENT emergencies I did still go to bed a little after 5:00 today and woke up… ten minutes to eight. ARG!!!!

So just for the MANY poeople in high school who are contemplating putting “disabled” or “cripple” for their aspiration as a second choice after "beauty nail consultant" or "televangelist" on those “What do you want to do with your life?” high school guidance counselor forms (at our cult religious school they filled them in for you and THEN gave them to you), I just want to point out there ARE down sides. The major down side is Control.

You do not control the vertical or the horizontal and I’m not talking about the TV. Having a complex not-always-stable disability like me for instance which includes hyper-somnia, can mean while you go to bed, one day, because they shot a lot of electricity through you, and even if you are DEAD TIRED you can only sleep maybe 80 minutes, and that is with sedatives. While another day, unknown to yourself, because you are in extreme pain from doing your 30 minutes of boxing from yesterday, your body has created its OWN PLAN, which involves putting me in a near coma state to recover from…well, I guess ripping all those muscles. And maybe while sleeping I got hot and my neurons don’t fire or fire too much and so I sleep and sleep and then wake up paralyzed and MY plan of doing 4 postcards, and then some packing as well as blogging is in need of adjustment. See, my body doesn’t have email, or even post-it notes. I WISH it would leave a note on the bathroom mirror saying, “Hey Beth, you might feel a little punky now but tomorrow I thought I would take a 'fatigue day’ so don’t expect to like, MOVE tomorrow, and wait for your homecare to put you in The Chair”. Or another note saying, “Yeah, those endorphins feel good but I’m bored so I might decide to just crank the nerve ending stereo tonight because I’m having a party; hope the mind blowing pain for the next 18 hours doesn’t bother you too much!”

There are up sides. You get to meet cool people. And the computer becomes your friend, your VERY GOOD friend, well except today which was a ‘Bad Day’ due to small stoke earlier this week and I could not remember how to do certain things and kept thinking the ‘print’ button was the ‘save file’ button. Actually it might be a really bad day because after doing that twice I still DID’T get it. Just repeated incidents of hearing the printer warm up and suck in the paper and me going, “Fuck, NO! Fuck! Why do you keep doing this!?! Oh how do I stop you?”

Also I was unable to answer the question, “What would you like with your sandwich?” because it was ABSTRACT and there was no list, so I had to imagine what there would be (which is something post stroke that I can't do, not on BAD days), and I sat there for two minutes going, “Ah…..Ah……Ah……” while the Care worker is going, “That’s okay honey, having a hard day speaking are we.” When what I needed was her to bring things from the fridge until I could point at them because my brain would say, “We recognize this!” That’s really irritating too, when your care worker assumes you have one completely fucked up problem (like not being able to SPEAK), while you really have another completely fucked up problem, (like not being able to imagine abstract things, like what might be in a fridge, and what in this imaginary fridge would go well with a sandwich). Only since the response for both is to stare out and keep TRYING and going “Ahhh……AAAAAHHH…….ah………AAAHHH!” On a positive note I think of it as sort of disability minimalist theatre or my OWN version of Waiting for Godot, where I have reduced the dialogue even further!

Of course part of being late was a phone call from Beacon, my care giving staff, and this was an RN calling who is also the team administrator. Beacon has decided instead of using RN’s to assess the level of knowledge of the staff or to answer questions or do medical training, to use them as administrative managers instead. Anyway, she was getting back to me about a woman I sent home it seems on the 9th of June, which I told the scheduler I did on the 10th, and she reported that I had flagged this woman as a “do not send” (as in do not send back!), which was created on the 11th, so this RN wanted to know, what did I find that wasn’t satisfactory in the care of the person from the 11th? Now, the problem is that I cannot count sequentially or do time, like in the past. The day to me are like those bags you have for scrabble and you just put your hand in and pick out something. So most of today I thought was Wed. (which it turns out it isn’t). And people, like care givers say, “See you next week!” which to me sounds like, “Gorp do gobble de gorp, I AM GOING TO EAT YOUR CHILDREN, gorp de gobble gobble!” Okay I know they aren’t going to eat my children but they are going to get really peeved when I don’t expect them again or I go, “You’re here, already?”

So I am supposed to know about the 11th, or the 10th or 9th, except I don’t have any idea what day it is NOW. And I ask the RN what day it is and she assumes I am being cheeky and says, “This IS Elizabeth McClung isn’t it.” And I say, “I believe so.” And she wants to know what the DNS was (DNS turns out to be a “do not send” designation). So I still have no idea what day it is now, but I explain that they keep sending people over for overnighters who, while my file is very clear about the complexity of my condition, seem unable to understand that I have such a range of possible conditions and what they might do. So I repeated a whole conversation where the woman’s solution to my NOT BREATHING was to give me oxygen and when I made it clear that I was PASSED OUT and thus, not breathing at all, she asked “Give more oxygen?” like this was a game 20 questions: the home medical version. I told this RN, that I have an hour to assess if the person can read (twice they could not) since I have many powerful pills and if they can’t read, and I can’t speak…. (I was assured with the NEW training they were giving on ‘medication’ that they should soon identify their workers who can’t read). Or to give them my different conditions and some reactions and see if they have an idea of what to do. By the way, the answer to NOT BREATHING is “Call for assistance” or “Call 911” And I said I cannot GO to sleep if I do not get a clear rapport with the worker that they will be able to respond to my issues because when I signal for them it will be because a) I am in incredible pain, b) Some or part of my body is paralyzed, c) I am having a TIA, stoke, cannot breathe and/or need the bed raised or d) having something that I feel needs immediate transport to the hospital. So I asked if she could please, as TEAM LEAD, and the person following up the DNS, try to find people who would fit this criteria at which she immediately barked in a “Don’t make me discipline YOU!” voice that such was only taken care of by Scheduling. Well that is SUPER, because Scheduling don’t KNOW these people except to say, “They haven’t been fired or under police report for at least a year.” Which is why so many end up as DNS.

Maybe I am optimistic but I really hope they are not, for example sending someone who is doing overnighters for a senior with a touch of dementia and then after they do that a couple months the send them to care for someone with AIDS in their final stages. I HOPE they don’t do that, because you can see, one involves cocoa and saying “This way dear” and the other involves lots of meds and a host of other issues which may include respiration. But from the people who show up and say I am the youngest 'client' they have by 40 years, that it seems likely.

Anyway, that was one of the reasons I was late to bed today. And tomorrow, which from how Linda talks seems soon, we are going to AMERICA, the land of indefinite internment, monitoring by the government and interviews by many, many security forces before entering (and after entering)….Whoops, I meant to say the land of FREEDOM! So I will post a few postcards from the US tomorrow.

I just realized there is an added benefit of disability, for your guidance counselor: while everyone it is “say No to drugs!” and “War on Drugs!” Disability land is “Say YES to drugs!” True they don’t always get you high (unless you live in Canada), and cause all sorts of side effects, but yeah, big old YES to drugs. Which is why when you have a drug by your bed where you are taking a couple hundred milligrams of straight tramadol (synthetic opiate) having a caregiver who can READ and tell the difference between your muscle relaxant and an opiate overdose is a good thing.

Before I leave for tonight I wanted to say a) The going to the USA is part of a very crazy plan which may involve coming back on a stretcher and being met by an ambulance since I will be leaving ere morn and returning AFTER 11 pm. So, likely no blog tomorrow and likely, I will be in the land of “ALL FUCKED UP” on Sunday. But I will have an adventure to tell everyone about so it will be worth it!

And b) Linda has gotten me some gifts, because my earrings keep dying on me so here I have the three gifts of Linda (she gives a gift a day, while at the same time cutting off my manga and postcard money - hint! hint!). So there is first the Starbucks gift of summer. Which I guess means I can either go out alone or use it to treat people who come to visit me (hint! Hint!)
After that she got me the cool skeleton earring you saw up top, part medical school and part New Orleans (Two of my favorite places! Both encourage drinking!).

And finally the Gothic bat earrings. So I am all gothed up earring wise and ready to Starbucks? Well at least they are accesssible and you can use their cards world wide. Which is sort of creepy when I used the same $20 card to get a drink in Canada, then in Seattle, then Japan, then finish the total back in Port Townsend or Port Angeles. It really is the Bank of Starbucks!

Have a good weekend all – as for me, I plan to play so I will have to pay. Now I am finishing this off, packing and I hope doing a couple post cards!

Remember this weekend, “Do what Beth would do….only with less power tools!”


cheryl g said...

Hey Sis

I am really looking forward to seeing you tomorrow. Part of the plan is to closely monitor you so we don't have to have the ferry met by an ambulance when you return to Canada. Bring the vest and a neck cooler.

Cool earrings!

yanub said...

Oh, I hope you have a good time in the US, doing whatever nefarious thing you and Linda have planned to do.

I love your earrings, and I love that Linda surprises you every day. Eeeeeeeeeeee! You two are such a sweet couple! Eeeeeeeeee! I love happy couples; it's like puppies, kittens, and rainbows all rolled into one. But with less pee on the carpet.

I do not know how you handle needing to schedule personal care and futz with service providers of various types. I mean, I can barely manage to set up my medical appointments, and I know that not everyone does ever learn to manage all that crap, that too many people suffer and collapse under the weight of the managerial talent needed. (Who knew that the "career" of cripple requires an MBA?) It seems like most people have to fight to get proper assistance and medical care. Why is this? It doesn't seem to matter if it's a welfare state or Randian dystopia, no insurance or personal health insurance or national health plan. Everywhere, it seems that people with disabilities are in some sort of sick behavioralist experiment involving wire mothers.

Neil said...

VERY cool earrings!! I'd wear the bats, when appropriate (but when is it appropriate for a guy to wear bat earrings, other than to a batman movie?? ALWAYS!!!)

And what's wrong with it being Wednesday? Was it last Wednesday, or next Wednesday? I spent half the day at work thinking it was Monday the 23rd, and I don't have your excuse.

May you sleep well, play safe tomorrow and come home in good shape.

Yes, take the cooling goodies. What Cheryl says!

Hugs to all,

Judith said...

I am so intrigued! What are you up to? Hope it's fun and crazy and an adventure but that it doesn't mess you up.

Judith said...

Oh yes! What Cheyrl says!!

SharonMV said...

Have a good trip Beth & mail lots of postcards. Listen to Cheryl & try to take it easy.


shiva said...

"Also I was unable to answer the question, “What would you like with your sandwich?” because it was ABSTRACT and there was no list, so I had to imagine what there would be (which is something post stroke that I can't do, not on BAD days), and I sat there for two minutes going, “Ah…..Ah……Ah……” while the Care worker is going, “That’s okay honey, having a hard day speaking are we.” When what I needed was her to bring things from the fridge until I could point at them because my brain would say, “We recognize this!” That’s really irritating too, when your care worker assumes you have one completely fucked up problem (like not being able to SPEAK), while you really have another completely fucked up problem, (like not being able to imagine abstract things, like what might be in a fridge, and what in this imaginary fridge would go well with a sandwich). Only since the response for both is to stare out and keep TRYING and going “Ahhh……AAAAAHHH…….ah………AAAHHH!” On a positive note I think of it as sort of disability minimalist theatre or my OWN version of Waiting for Godot, where I have reduced the dialogue even further!"

This reminded me massively of Amanda Baggs's recent post here: ... in fact, of a lot of her posts regarding communication difficulties. You might be able to pick up some useful tips from her...

And again: your last few posts were incredible, powerful and moving to read, but i didn't comment because i couldn't summon up the words to respond adequately to them.

Hope you enjoy your trip...

Gaina said...

I am sorry, I laughed my ass off at this blog, but particularly at the notes you'd like from your brain and the printer thing (mainly because the printer thing has happened to me too with various other gadgets - my voice recognition software has learned to swear very quickly).

Yes, the skeleton earrings definitely say 'I love you'.

Enjoy American and I hope you don't spend too long in 'The United States of All Fucked Up'.


Perpetual Beginner said...

Hey, don't underestimate the difficulties of caring for slightly demented seniors at night! The term isn't "sundowning" for no reason.

The first dude I ever did night care for proceded to strip and waggle his penis at me chanting "Karl, ich liebe des madchens alle!" (Karl, he loves ALL the girls!)

Which was a distinctly better than my second visit where he decided I was a Nazi and tried to strangle me. Of course, since he was frail and used a walker, he had to let go to strangle me, which left me in the ludicrous position of holding the guy up so that he could try to kill me.

It was a good deal different than trying to decide where the communication gap is coming from, though. It was pretty clear where the disconnect was. There just wasn't much to be done about it. I'm puzzled by your aide's choices though. Wouldn't the logical response to a failure of words be the same as for the failure of the abstract? I.e. present you with the physical choices so you can point?

Have a grand time in the US! Do lots of things I wouldn't do (I'm a wuss and way oversocialized.)!

JaneB said...

YES, I wish my system would leave little post-it notes too. Things like 'you feel great now but HA watch out for the moment you get into your favourite book store I'm going to set off a panic attack just for fun' or 'tonight you need 12 hours sleep so go to bed early or you will be very late for work tomorrow AND grumpy and sleep deprived'. Or am I hoping a bit much, like that the info would be HELPFUL??

Have a wonderful time in the US - and remember to take the sassy earrings just for looking good on the stretcher (I have one student who collects all sorts of strange arty things to decorate her nipple rings with (yuck! The very idea makes me shudder! And why would students TELL THEIR TUTORS these things anyway? I don't even have pierced ears!) partly because she has has a heart condition and a student lifestyle which regularly delivers her to the emergency room or at least to the mercy of an ambulance crew, and she likes to make sure they realise she's an individual even if her heart is doing stupid things - apparently arty nipple rings say 'I'm an individual!' Er... yeah... each to their own. At least she's never offered to show me said rings).

Dawn Allenbach said...

Those earrings ARE New Orleans! In regards to your trip, as they say in my second home, "Laissez bon temps roullez!"

Tammy said...

Love the earrings. What a very cool way for Linda to say "I love you". I never got to post yesterday about how much I love her framed work. It looks awesome, and the frame is perfect. She has fabulous taste.

I hope you are having a great time here in the states. A great time, yet a safe time. Just have fun.

Elizabeth McClung said...

Cheryl: It turned out that heat wasn't the problem...I was. SUCK! At least I got to wear the skeleton earrings.

Yanub: We are sort of an exhausted couple...but we try! Linda liked your comment about needing an MBA to manage everything, because that is how we feel many days when so many agencies have STAFF to book us up or do this or that and WE don't, or can't say, "I am sorry, you are speaking to Elizabeth, I am not the booking department, you will need to call back between 2 and 4 on Tuesdays and Saturdays to do that."

Neil: Exactly, bats are cool anytime (except when wrapped in fear around your face), Wow, you thought it was monday and it was friday, did you get up early to go to work on Saturday? You must love your work, or your coworkers must think you very odd saying, "Gosh, I hate mondays" to them. This is what I would do anyway, and then people would say, "She creative!" which means, "I haven't gotten a friggen clue what she is going to say next."

Judith: we were going the rain forest but went to see a hurricane instead and sadly it did mess me up, or I messed myself up. Ack!

SharonMV: postcards mailed! Advice taken, still, no risk no gain.

Shiva: I appreciate your linking to ballastexistenz post, however, what she is talking about is processing time or the way she processes information in a time format compared to societal expectation and the frustration that results, I did like one of the commentors who said, "Wait 20 seconds is the first thing I learned". However, what I described is brain damage of the left hemisphere of my brain, which affects my linear progressive thinking and present and past time, as well as the ability to construct abstract based on experience.

I didn't know postcards were so incredible and powerful, but thanks!

I personally don't feel comfortable linking strokes to autism spectrum disorder because one (ASD) is about the way a brain processes things differently and the other is about brain damage, post birth which may or may not ever find a solution. Like for example, I could say that the inability of some people with ASD to recognize facial expressions or the impact of what they say socially is very much like someone who has goes into a coma because of a head injury and wakes up with frontal lobe damage and no impulse control (and thus swears and uses racial slurs becuase there is no ability to stop the first thought coming out as speech). While both can be misunerstood by others, I think they come from radically different places, and thus would probably offend just about everyone with ASD. But thanks for the link.

Gaina: Thank you, I wanted people to laugh, so it was good to hear that it happened. Yes, not a good day, but even a not good day can be funny.....LATER! And I definately think the skeletons say I love you.

Perpetual Beginner: I had totally forgotten about sundown syndrome, sorry about that. Your story about Karl, while a nightmare at the TIME, does seem very funny now!

I think the aide was trying to be "Supportive" and forgetting the purpose (having me eat stuff) and thinking I would be able to speak eventually - people often do this, particularly care givers, you lose an ability and they just assume you still have it, so you have to EXPLAIN in DETAIL (if you can speak) that you need the drop proof mug because you drop things all the time and please stop bringing the glassware.

JaneB: I am beginning to wish my body would leave post it notes for the next few hours even. But yes, I don't know why it decides out of the blue to knock me down and then kick me while I am there, I would like an explaination but my body stays silent on this.

Dawn: the second thing I thought of was wearing them in N.O. -the first was "cool, skeletons!"

Tammy: Thanks, Linda is really thoughtful with her gifts and I like the frame too, it is great when it turns out as good or better than you hoped for.

The US didn't quite work out as planned but that's why we try again!

Neil said...

Hello Beth:

I DO like my work; it's an interesting job, with wonderful coworkers and supervisor, a very cool building architecturally, and only a couple of clients annually who are grumpy. Plus there's' an art gallery in the building, and I get to see some pretty incredible art up close, from artists such as Zhong-Ru Huang (stunning oils), Elsbeth Coop (jaw-dropping acrylics), Megan Hazel (silver and gold jewellery), Brian Gladwell (furniture as art, or vice versa?), just to name the first four I think of...

Yeah, Beth, I like my job. But on Friday, I was taking down posters for things that are happening on the 23rd "because that's tonight and we need more bulletin board space," and several times during the day I had to consciously think of what day it was. I didn't actually say anything stupid, but I sure thought it!

Shiva: Thanks for the link to Ballastexistenz. It may not be the same as Beth's difficulty, but it did lead to another blog which helped me with my little advanced-reading turkey. He often can't tell us which of two cereals he'd prefer; I'll try to be more patient with him.

Awww: My Beloved wife just gave ME a present: a package of Duct Tape adhesive bandages. The Society for Creative Anachronism uses huge amounts of duct tape on the weapons - it's sometimes called "the holy ribbon of St. Tenacious." Duct tape bandaids will be fun to put on the fighters' small cuts.