There are times when things are stable, in my case, hours or days, and hey, this isn’t going to be that bad; this could last for years, hey decades if need be. Then there are the days where everything is uphill; a brutal slog in when only fixated determination and the kind of crazy you get on the down-slope of burnout keeps you going.
This week every day there has been calls to make, and appointments and calls from the medical mafia. I was unable to get prescriptions and give info to my doctor earlier this week because the clinic was closed due excessive construction noise, and this is a clinic for homeless.
Twice I picked up the phone and was simply told a time and day and where to appear, usually within two days. Yesterday afternoon I was told that there would be a meeting in MY apartment with the VIHA nurse and the care giver manager to “determine the future of my care” and that “according to my responses would dictate what care I would receive.” No, she couldn’t say anything on the phone about the specifics of the meeting except it was the result of a group meeting of all interested parties. It was? I wasn’t there? I was told my doctor was. Well, one advantage of Cool Aid is that when you call with this particular tone in your voice and say, “I NEED to talk to my doctor”, two minutes later, you are. No, he wasn’t at the meeting, he had sent my diagnosis but this was a session cooked up at VIHA. So now, the female manager of the care giving organization who called me a liar when I complained of a home worker making fun of my speech, is coming to a meeting VIHA has called at my apartment, and if I don’t host it, my care is threatened. Can you feel the love, I can?
Yesterday, I was flagging, slur-wise, which is when I ended up spending three hours on the phone until no one, even Linda could understand what I was saying. After sleeping and a few more hours staring into space, I put the gun of the BBC to my head: I had made a promise and I WOULD make that final rewrite and edit. Writing is the last thing I have where I can make a focused and crafted effort. I was, on Tuesday for example, except for the TWO appointments, sat every minute in front of the computer, writing and rewriting. And for what? In the last three days, I have had limited to no use of my right hand on two days and couldn’t speak intelligibly on one.
Wednesday, finished my piece, posted at BBC and then just stared into space.
Today, Thursday was my “nerve conduction” test which, I kid you not, is a little taser device, they put sensors on the end of your nerves and then shock you with an ever increasing voltage. I am not sure if they want to see how much of your leg, arm, body spasms, but that is part of it. Of course, at the beginning, starting on my dead(ish) foot, I asked when they were going to begin. They already had. We’ll turn it up, she said, as she applied the taser to the bone of my ankle. Yup, they just kept turning it up. The last volt might not have twitched my foot much but had me screaming. Literally. Guess applying a taser to your ankle bone hurts. Then we moved up the leg, and then up again, and then she jammed up right under the knee. “Often people find the pressure I apply to be more painful than the voltage” is what the tech said BEFORE the test. I assume this is how she likes to calm people down. The top voltage on that one hurt so bad I was actually laughing, “Do it again!” I said, as Linda tried to hold down my shoulders because I was laughing so hard. Linda explained to the tech, “She laughs when she is in extreme pain.” I am not sure how much conduction made it down to my feet but golly, volts of electricity jammed to the under-bone of my knee cap still hurts. Should I be happy?
Then we went on to the hand, was this when I screamed again? I can’t remember. I just remember she kept saying, “We don’t have to continue.” Which was very creepy as that is the phrase torturers use. I just didn’t know what I was to confess. But, I’ve been tortured by better than her. “No,” I said, “Bring it on.” My palms were sweaty. That one thing they never tell you about torture, it is, at least for me, a sweaty business. Like, in full body torture, they have to towel you down in they want to keep their grip. My torso didn’t sweat today, but then…it doesn’t.
Anyway we finished the other leg, and Linda helped me dress. The scientist part of me was hoping they were going to use this as a baseline and repeat it since how could they know how much conductivity I had before? See, all humans have variants, even between limbs, like the way two trees grow different branches in two different ways even next to each other. The non scientist part of me wanted nothing more to do with this creepy residential house perched literally on the edge of a giant cemetery where the bottom floor had been converted to conduction tests, 20 odd miles away from town (and a hospital?)
I had time to get home, gear up and head off to Triumph, for my 2:00 meeting. Anytime a meeting starts with M, my case manager saying we needed the Triumph manager in to “clarify things” I knew that wasn’t going to be fun. This is because I noticed that on meeting two or three I was given a page which said all my information I gave at Triumph was confidential and would not be passed on to government agencies. Then I noticed, in the small top print of the 14 pages of “homework” where you put down all your medical and personal info including hobbies and interests and who knows all else, it said, “All information will be forwarded to MEIA” (the Ministry of Employment and Income Assistance). I pointed out that these two statements seemed at odds in one of my first meeting with M. Today the manager came to “clarify”: that when my time with Triumph ends, my entire file, INCLUDING that homework, ALL goes to MEIA, which is subcontracting Triumph. “Ah!” I said.
“But if we don’t take notes and find out your specific needs medically and personally we can’t assist you.”
Then there was that I was looking for a government job AS WELL as working as a writer, which meant that maybe I should be kicked to some different type of Case Manager (like Job Facilitation Case Manager?), who would help me on the grant side. What? Another case manager? I pointed out I had once held five jobs WHILE I was doing my Ph.D, so doing writing and applying for a part time writing or researching job in the government didn’t seem that ODD to me. Yes, but usually they try to stop clients from pushing forward too hard and ending up putting things further back, disability wise. Me? Push too hard?
Then we get to Dragon 9. You know the whole software where I speak and it types, which considering two days with only one hand control seems useful. The problem, the tech support is a different ministry (actually paid by the secondary school system – don’t ask, it is just one of those things which happens over the years, students with disabilities go to college then the only people with tech knowledge is this sub group of the BC secondary school system), and they won’t give the software or integrate it into my machine. They WILL give me a NEW computer BUT it is a shell with MS office, Dragon and…that’s it. And I have to sign a form saying I will NOT put any other programs on this computer (and they won’t give the Dragon disc, only install it, if it crashes, I have to courier the computer to Vancouver for them to reinstall, every time). I explain that a) Any desktop is going to be my home AND work computer and have high spec requirements and programs on it for my work (like photoshop, two other photo editing programs, video editing programs, etc). B) If I can’t install dragon into my wireless laptop connected to my home router, then what use it is? When I am in a hospital bed I can speak but then I can’t do any work (no disc for dragon 9... no work)? And c) I don’t put anything on my computer (except some freeware) that I don’t have a disc of, when my computer crashes, I need it up, reinstalled and running in one day (and I pay geeks to do so).
So, they are thinking of getting Dragon Profession for me another way (as professional has all the medical speak I need for disability writing). The problem: the “official quote” they got for Dragon Professional is $1600. I was like, “What are you smoking, it is $759 on Amazon US, and with our dollar at par….?” I told them that was why I have a US PO box. Anyway, that’s as far as we got except the manager, who moved from Ontario, when I was describing some of my writing pieces and the software I use she said I reminded her of DAVE HINDSBURGER.
Talk about a freak out time, “I know Dave, he’s coming here soon.” It was small world time. What did I think of Dave, she wanted to know? I said that since he wrote recently that a piece I wrote was one of the best pieces I had ever done and my novel was a favorite of his, um, I kind liked him! She said she could see why. (hey, I’m vain, I never denied it)
Okay, you are long overdue thinking, “hey you put up, “In my Time of Dying” as a title and you are gossiping about Dave from the blog Chewing the Fat? Well, what I failed to notice when signing in was that I had very little hand control, I couldn’t sign my name in fact. Indeed, I had almost no hand control at all on either hand. Well, with the three people in one office room and my autonomic system taxed from the taser fun an hour or so before, I wheeled out, and got to the front and was going to book next appointment when my head flopped backward. Not back, but like, looking down at the pavement tipped so far backward, along with my torso and while I thought, “I probably should do something” my arms followed, tipping my chair over backward. I didn’t move my head at all, just thought as I hit, “Oh….I can close my eyes at last.”
Of course it is never that simple as that. People are shouting your name and I heard someone say, “We have to call 911!” Okay, that got my eyes open. Only I had no vocal or hand function and my frantic freaky moaning sounds sort of caused the opposite effect, they couldn’t wait to get on the phone to 911. Crap.
At this point some off duty military officer came in and took over and was the only one who recognized my gesture of putting two fingers toward the nose. “She wants oxygen.” He found my tank and got me on oxygen and got a bunch of people to put me upright so by the time ambulance arrived I was upright and able to make a cross with my two arms and a hissing sound. Well long story short: after extended time, I got some distorted speech back (enough to make the EMT’s think Triumph was a “speech therapy center” – ha!). I authorized Triumph to give the EMT’s my doctor’s summery. And they gave me cold packs and I cooled my core, which helped the blood to my brain, so I could speak. However, they keep trying to open my packs and really resisted the way I do it (I grip sides with non-functioning hands and use my teeth to pull the zipper). Anyway, I said, I am sorry, about 40 times. My God, would you want to go thinking, “I’ll get some work to get off depression” and see the entire lobby of Triumph filled up with EMT’s, gurneys and a woman slurring and drooling on herself? No, thought not!
Of course my heart felt like it was trying to implode or explode, and to every question from the EMT’s I would smile (the side of my face that did) and go, “O…KAY!” in slur speak. Like they ask, “You sure are clutching those cold packs tight, does your chest hurt?” “O…kay!” Like I am going to say my chest hurts to an EMT. I kept offering them cold packs from my chest and they kept saying, “Uh….no, I’m married.”
I got out of there and military guy walked me home (he didn’t push, I did I myself). And I pulled myself into the hospital bed and slept and slept and peed and slept and then I woke up and couldn’t move my right side again. Linda had to help me out of bed and move. My diastolic was back up at 110 (oh great, another problem) and thanks to the electricity today my resting heart rate has been 108-110. Which I think is high, but the EMT’s didn’t. 110? RESTING heart rate? Am I doing cocaine?
But the fact is I am propped up in front of the computer and it is just TOO MANY days in a row of losing speech function and hand function and body function and my vitals and to hell and gone and I am fucking exhausted. Even though I slept many, many hours as Linda says, “Well any time the EMT’s come means it is going to be a day you crash.” But didn’t I crash yesterday too? And don’t I have two MORE meetings tomorrow?
So this is what having a fairly probable terminal diagnosis is like: there are days and hours and if you are lucky weeks when you are like, “Oh, the doctors are wrong, I’m going to last for years.” And then there are days and weeks when you feel the pain and it is kinda stable and there is like one emergency a week and you think, “I could hang on a few years this way.” But in the back of your head you are thinking, “Maybe I don’t have the terminal bit and they will find a pill and this is really as bad as it will get.”
But then there are the times your system crashes not once but two or more times a day. And yeah, you use the chair and you can’t grip normal utensils but also you use more oxygen in two days than you did in two weeks and every day it is just worse and worse and you lose more and more function. You are spending more and more time in the bed and are becoming too weak to get out or in it yourself. And when you overhear the EMT’s talking about they saw a case like this on TV last week and how tragic it is, and they look at you and you try to pretend you didn’t eavesdrop and smile (only half of your face doesn’t go up). Then they get the freaky misty eyed, “plucky little trooper’ look. And at home your partner tells you than she has been so burned out from seeing how bad you are and doing care-giving this week and how she told someone she really doesn’t like at work how I was terminal just because he was standing there. And you can’t sit upright, and you just got up from many, many hours of sleep but are SO tired. That is when you feel it in your bones. I’m dying.
1 day ago