I put two fingers on my chest, “oaffarrs”
Linda was leaning over me, as I was struggling to breath, “Two offers?”
I nodded, “Exxx!”
“Sex?” Linda asked in a “what the?” voice.
I grinned and nodded my head.
My care worker, H., who was currently holding my body so that I could take in air, said in a ‘I’m going to kill you later’ voice, “Only you!” before laughing. She had previously told me that she would get me breathing again and then, MAYBE, I would be allowed back in my chair and if I didn’t come to go to sleep when she told me, she would throw me over her shoulder and carry me off to bed. Sounded like a pretty darn exciting offer to me. So I was giving my, “What can you do to the cripple?” grin as H. (VERY heterosexual) was explaining this (with dagger looks at me) to Linda. Sex tends to be a common conversation in our late night sleepovers for some reason; her and her romances with tall broad shoulder men and me showing her the manga porn girls that my publisher had sent me as a “get well present” (more on that tomorrow).
Linda meanwhile told how coming back from boxing, she had a mix-up of words and offering to push me through our horrid hallway carpet we call “the quicksand” she looked back to me and ask, “Should I do you?”
I paused the half second for it to sink in and then started nodding eagerly. Linda was, “You know what I mean?”
“No I don’t,” I protested, “There haven’t been enough offers like that recently.”
Anyway, being thrown over my night care workers shoulder and carried off to bed competing with Linda wanting to “do me!” was sounding pretty darn good. If you can’t make sex jokes while unable to breathe, well, I guess you’re not me.
Lots of problems breathing last night and this morning I was woken by the phone ringing and ringing (you know those ones where after 20 rings you think maybe they ARE important). “Heeeeeello?”
There was a crisp voice on the other end, “This is the MRI department; do you have any shards of metal in your eyes.” God, this is why I struggled to get the phone? Why do medical departments call so early?
I was in slo-mo today, getting up late and by the time my home care worker came, I was still working on contacts, brushing hair, getting dressed etc. My regular wasn’t there and there was a woman from several months ago who excelled in what we in the medical home-care industry call: being lazy.
First she came into the bathroom to ask me, “Where is your dishwasher?” I rolled my eyes and prepared to laugh until I realized she was serious. “There is a tub under the sink.”
Well, once I got dressed and in the wheelchair it was, “You have some sort of party? What are ALL these dishes?” I also found out that she was there because my Home care agency is closing in Feb., so everyone is calling in sick, including my evening worker from yesterday (who called in sick, a replacement was assigned who never showed). When this worker, K. found that my regular overnight worker was there last night, she got really angry. “How come she be here so many hours and not do the dishes!”
I told her that my overnight worker, H.’s job last night was to keep me breathing, and that she couldn’t do that AND do dishes. “She should do them later!” K. stated.
“It was after 11:00 p.m., my partner was asleep.” I told her.
“Should have done them anyway. I would have.”
“Well, doing the cutlery at 11:30 p.m. next to someone sleeping, must be a delight.” I said. Sorry, but when the woman who has kept me from going to the hospital at LEAST six times gets slammed because keeping me breathing for two hours when I couldn’t do it on my own seemed more important than doing dishes, I get a bit stroppy.
The care worker couldn’t find anything for me to eat so I got my gatorade and then after being there 30 minutes (she is supposed to be there an hour), she started heating up her OWN lunch in our microwave, while telling me how much weight I had lost since she had seen me last. “Yes, I keep losing weight.” I said. And she told me to make sure not to lose any more, took her warmed up meal and then left. Okay. That was surreal.
I had to back to Triumph for my interview with M. my “employment case manager.” The first words I told her were, “I want to leave here with Dragonvoice 9” (where you speak and it types it for you, slurring or not). She had told me should/could get me DragonVoice the first day. That was all I was coming in for. Well, it turns out not to be that easy. She needs to call some government department, (EES?) and I have to be assigned a case manager there. We are hoping for Bruce, but I get Lynne, who it seems won’t do anything unless ALL the paperwork is done perfectly. Lynne talks to us but says she will call next week “once she has the paperwork” and then we will see. M. tells me I have to call Lynne every day. I tell there is usually a list of people I spend most of my day calling to try to move things along and Triumph is one of those places. She goes off to fax the paperwork and I notice there are pictures of M. with a baby, then a little girl. So when she returns I blurt out, “You progenitated?”
There is some nervous laughter about yes, I guess she did. I just think about how I am mucking about in this medical stuff and how Linda and I talked about it last year and here she was replicating herself. Before you classify me in the weird grouping, she looked at my birthday on the chart and laughed and said, “A typical Taurus.” Eh?
Anyway, after an hour my feeling is that like every OTHER group to do with government, I go to meetings, M. is paid to do the meetings but is paid nothing to do work for me in other capacities while I am away. So I am the one who leaves being told to “write a letter to the Rick Hanson Foundation for a grant” after being asked, “Why not write pamphlets for new Neuro wheelchair users?” So, I have another octopus: I have to do all this work while they get to assess if I have done enough. Crap on that. I HAVE a damn good resume and would have a $45,000 job if I decided to “settle” and just take something like clerking if I wasn’t, you know, disabled (and unable to work full time). And the corporation who is paid to help me get employed needs to understand that I don’t need help with a resume/CV (I gave them one of mine today). What I need is someone who can go out there and sell me in a marketplace and country which not only doesn’t seem to like part time employment but actively discriminates against disabled employees (legally!). That is the ‘accommodation’ I need because if I was NOT disabled, if I was strong enough to spend hours a day searching this, then I wouldn’t need them, I would HAVE a research or teaching job. I was infuriated that I had been sucked into at least four meetings on the promise of individual advocacy for my by a pro WHILE I was sleeping and getting medical tests so I could work when I was not. And instead I get told to go cap in hand myself.
By the way, the reason I told her I am not doing pamplets is that I have as much impact as I can hope or desire in the now with my blog but that in a short time, I will be gone, and the blog will wash away with the tide of internet time. I want a book so that the next person, so every person who cares can know what it is like emotionally and socially to be in a wheelchair and the medical system during the first year. The year you think “this isn’t me” and “Who am I now” and “Am I sort of pretending, I’m not a spinal cord injury and I’m not really THAT sick yet” and “I’m sure this next test will show what the problem is, and I won’t be using this, I’m not like those people who are ‘wheelchair users’” and “For gosh sakes, it has been over 100 tests so far, when are they going to find something, or when are the doctors going to start agreeing?”
So, it was all, “It is 3:00 on Friday, you need to try again Monday” because apparently being degenerative only occurs on weekdays for diseases? You may guess that I am not amused. I’m not: I was stopped from entering a disability advocacy office because I was told, “We’re closing.”
I looked at my watch. “At 3:30”
“We close at 4:00 but we like to leave early on Friday.”
“Of course you do.”
I really wanted to believe for once that you could go into a government or subcontract government building and walk out with a disc instead of TWO case managers, a prospective phone interview, and two more appointment times to meet with M. M, who has not asked for my writing portfolio or anything and I think has no real contacts with employers but like the people there who do 1 hour sessions on “Writing a Resume” at the end of the day it is all up to me. Well if so, why didn’t they say so up front and I could have been spending all that time…I dunno, FINDING a JOB instead of trusting that these people would make reasonable accommodation to help me in finding one. I have the energy to go out 2 to 3 times a week by myself in the wheelchair: this week 2 of those were to Triumph. Was that a good investment in mobility?
Well, that was one long whinge wasn’t it? I just don’t know what to do, I mean, besides having to be monitored by the freaking minute on breathing last night, I STILL made my deadline only to find out this morning that my editor is on vacation until next week. Just wondering, do disabilities get vacations, or only when you get a job? Sorry, it is just that I literally worked myself until another attack, then slept, then got up, explained to the person making $20 a hour that we don’t have a dishwasher. Then went to be told that I have to have another interview and more appointments and I have no disc, no software, no computer (much less leads on work or inquires on my behalf with local papers or magazines). It is just that I don’t know if I have enough endurance or energy to fulfill all the demands on being disabled until something finally happens.
I am so fucking tired of able bodied people putting me in disability time.
I think I really do need that sex. Pretty badly.
16 hours ago