Linda spent two days and I spent a day getting ready to put the air conditioner in. It is defective, in that it produces a headache splitting whine and when the cool kicks in, the concentrator has a low hum stronger than the bass from a car. It literally knocks me immobile. I had felt before the pain of thyroid from Bass but nothing like this. Linda sat down for the first time today to rest at 11:00 pm.
I had gone to the video store, which took two hours of prep, and with going and coming, I did not return for another two hours. They had taken the DVD’s I wanted to return and charged me them, cleaning out my account savings. One eyelid was shut and the face slid down from the TIA I had experienced on the way back. At home, the pharmacy had lost our prescription and so as quickly as I could in my condition, we tried to go to our walk in clinic to replace them, as they would only accept the prescriptions today.
The walk in clinic, though not closed would not accept new patients. We tried another. After waiting, a doctor asked me about the medication. I had a great difficulty speaking, and to ‘How many pills?” it was “f…f…f..f…f..f.fffffffffoour!” Dosage? “Ffff..fff..f.f..fff..fff..ff….ffffff………….ffive milligrams.”
“What that four or five you want?” The doctor asked with a smile.
“Ffff.ff.f…f..f.f….f..f..f.f.four at ffff.f..fff..fff…f..f..f.f…f..f…f..ff.fffifvve
He didn’t even wait for me to finish, when with a slight chuckle, “How many was that, four a day or five?”
“Ffff….ffff…f..f..f…f.f.f..f..” My face was red and I felt like crying. He had seen me before, knows that I have a speech affected neurodegerative disease. Does he amuse himself this way? “ff…..f…four at ff……..f…f…f…f.f..f…f.ff.ive milligrams.” I said and he finally wrote it down.
Is this what Lene meant in that I did not learn how to be subservient enough? To be thankful, and meek. Or was turning speech or neurological disorders into the same game played by second to fifth grade bullies somehow acceptable if done by doctors? I was not thankful. I had humiliated myself because Linda was laid off and I could save money from a prescription lost by the pharmacy…only if I filled it today.
Linda laid me at home, angry, exhausted, nine hours into autonomic failure and difficulty speaking.
When I woke, I went to watch the overnight rental I had hired from Pic-a-Flic. It wasn’t there. Because they had incorrectly checked out movies onto my account, so goes the word of the guy on the phone from the person he was speaking to, ALL the films had to be returned and re-checked out. Linda was out doing some editing subcontract. She returned home at 11:00.
Tomorrow we start to re-replace the air conditioner. And hopefully take this one back. I did not sleep, or rest because the doctor’s records had one number, the pharmacy another, so hours lost there. The four hours, not to rent a disc, so much as exercise the one thing I do not have right now: consistency or control. The days of six hours emails and work, then sleep, blog, watch some DVD and rest Linda says haven’t happened for a week, to have two or three in a row, not for weeks and weeks. My body leaps awake in the night every two hours, three hours, not knowing if this is a nap or sleep. I cannot, with three meetings, emergencies, a day, ever rest. Linda, thinking we hit the finish line, and now we both start again plays maj-jong before bed.
The DVD is called the ‘Sleep Dealers’, it won many awards in Mexico about a future where connected by nano fibres, the US gets all the work it needs from Mexico but none of the people. The workers, like all commodities, and used and sold until dead. This is not a future for the living, as each shift steals the energy of another person, until they are used up. Four hours to get a DVD, not here to play when awake at 9:00 pm because I was told to return it….in order to have it again, but I could not return it today….if I wanted them to keep the money they admit taking incorrectly. “the computer” – yes, the computer can’t be altered, can’t be changed, and the people working proudly announce their drone status.
I used to ask people who pulled the ‘nothing I can do, though I screwed up, the computer you know….’, “Aren’t you kind of ashamed, openly admitting like that?”
They would look at me in puzzlement.
“You just announced to me and everyone that a machine built by humans with only 10 keys, is telling you, with billions of neural connections what you are mentally capable of. That would make me ashamed.” I would say that now, except a couple million of my neural connections related to speech seem damaged.
I have to go now, tomorrow I pack what I packed two days ago, to take apart the desk again. Then I will go boxing.
‘Whims’: DVD’s and manga. I think maybe people think that all I do is follow my whims and desires: DVD’s and Manga. And I want others to follow them too.
It is funny because most emails I got, “Bummer you tried to hang yourself, nothing much happening, watched some XXXXXXX”, indeed most/all communications which ever talk about a flu, or a cold or time off include sleep and watching something. Okay, you are ill, your body says sleep, and when awake it says ‘No, I can’t PLAY chess idiot or read Russian, I am SICK!’ and so people watch TV. Except I don’t have a TV. Or watch movies. Or read a book. Except I haven’t been able to get to the library (with Linda’s help) since whatever month (2/two) is like (2/14). Today was my first time out in 10 days not to a doctors.
So sit your ass down in bed, and put your books and magazines away (they are play, whims, idle), and shut off your TV, your computer for except for work, and have a flu, a real rampaging, head like a bowling ball cold full of sinus’. And then have people say ‘Oh, lucky you, able to play.’ If you have a book out, if you do rehab, if you work to keep your brain active.
How many books would you trade for your left eye? Mine stopped working in the last few months. I’ll trade you. How many DVD sets will you take for an eardrum?
I can’t feel my fingers, or the right side of my face. I found that out when I was trying to find my face to scratch it and my fingers came away with blood. Nice scar now. How much for each kiss on your cheek, I will give you two manga for each, and you can have my face, the one which doesn’t feel. How much ‘play’ or whimsy to feel your muscles in your arms die as mine have every night for the last several weeks. Or would you sometimes want, no matter what the energy cost, to do something, choose something?
There is no courage, or amazing way of dealing with things, not as a saint. There just is dealing. You might not feel anything much but pain, in fact, whatever good things you feel, or a nice smell, or DVD you watch will always, forever be overlaid with pain, because in keeping you constantly in pain, but with painkillers that kill first 90%, then 50%, then 35% of your pain, they are keeping the patches and fentynal for when things get really bad. And they know for sure you will die soon. Bad like AFTER you hang for what felt like minutes and minutes, probably two minutes and a bit more, it CAN seem an eternity when starting awake. I learned one thing, don’t put the buckle in front, it can allow a bit of blood to flow to the brain and just prolong how long it takes to pass out.
I had spent hours trying to clear an impacted intestine opening, colon and it hurt so bad. I kept thinking, “They say the body shits sometimes at death, I hope it does and then, it won’t hurt so damn much when I’m dead.”
Pain makes you a little crazy. Having no future, no stability, complete and utter dependency makes a person a little crazy. I worked and work, and worked to get that loop over the hook, at least twenty tries. Because I knew that I would never be able to take it off, not as exhausted as I was trying to put it on, my neck pulled tight to measure the distance.
These are my wishes, my idle pleasure: let me walk, let me use my hands again, let me walk out tomorrow and get a job, any job, and work it until I find another job and another. Let me work three jobs, and run from one to another. And on my days off, I’ll find another job until Linda is safe. And then, I will run to the end of the breakwater and back. Because it just feels so damn good! And I might roll down a hillside, for the same reason. Because it just feels good. When you are able in body it is easy in this country to enjoy things, even if you are in pain. I know. You can walk the town, you can hike the forests and the hills, the mountain tops, like I used to. Or walk from one end of the town to the other in 1 hour and a half, and turn around and do it again. I used to walk from one end of Victoria to another in LESS time than it takes me to get ready to leave, to prepare and rest and prepare and rest – and ‘the computer’ says, after four hours, and more hours sleeping that I need to do that all over again.
Got to go, pain pills starting to take the edge off, new ones in ‘f….f….f….f..f.f…f…f..four hours.”
How many hours was that again?
I wonder why I want to go out as much as I thought I did.
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