Thursday, May 27, 2010

And then there was today. Little things to AB's, like speech.

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.


SharonMV said...

Dear Beth,
I'm so sorry for all the hard days. for the air conditioner that's so loud. I hope the replacement will be easy to put in & is very quiet. keeping all my prescriptions filled takes a lot of time & energy for me and Dennis. When something's messed up at the pharmacy,it can be a minor annoyance or a big problem. I can't believe that cruel & juvenile doctor!. He had no right to treat you like that.

To be denied your little pleasures - the things that can keep you going & help to occupy your mind when you're awake & ill - that is bad. Sometimes that's all you have to hold on to. Especially without TV, having DVDs to watch would be essential. And having books. I wish you could have a never-ending supply of manga too.

I hope you will be able to get some rest from the appointments & some real sleep. I will be thinking of you tonight, hoping you are sleeping.


Baba Yaga said...

I'm not processing fully, for which I apologise.

One thing I do know, in extremis, following one's whims and desires is *not* optional. It's absolutely necessity. The freedom to follow things which are more than whims and desires is luxury.

Pain makes you a little crazy? Sometimes more than a little. The isolation and carelessness - oh, far more than a little.

I'm listening.

FridaWrites said...

Sometimes for me it is worth it to do something despite the cost--I don't know if I would if it were vision, but this week I am paying dearly for us being out, had difficulty even getting a frozen pizza in the oven for us; couldn't manage a second one. With my husband not here this week, it's been hard, despite him leaving food in the freezer. My daughter is very tired out from helping me get dressed and from helping a lot this weekend, doing laundry, etc.

Why are doctors sometimes so masochistic? I don't do well at subservience either, though I've had to before. It's awful. My mother spared me a lot of that when I was young by staying with me in the hospital 100% of the time and speaking for me (and with my sister, when she was ill).

I am familiar with that misery you describe, either being unable to type or the computer not working and not being able to watch anything because the computer won't work or I can't use the TV or angle myself to watch.

With suicide attempts or feelings, I don't know how best to respond other than to ask how I should help. I am afraid that mentioning my own feelings/actions in empathy will trigger you or me again (or someone else if it's on the blog). I have been there, though, even a few weeks ago, and my heart is with you. It's rather difficult to get counseling when I have transportation issues. Suicide rates are higher among people with disabilities--the stresses on us aren't just from the disability itself, but socially, financially, relationships, employment, etc. Everything, really.

Sleep Dealers--I will have to check that out, along with other movies/shows you are mentioning. Sounds very Matrix-y.

wendryn said...

The doctor is an ass. I wish you didn't have to deal with people like that.

Your idle pleasures don't sound so idle to me. They sound like desperate, intense wishes.

I wish I could send you experiences and memories that don't hurt.

Lorna, Bob and Liam said...

Oh. Oh. I'm so sorry I've been absent for the past few days. I'm so sorry it's all been so fucked up for you.

Please, please forgive me if this is a stupid or uninformed or insensitive question, but... are you eligible for any form of palliative care? Would that address any of the issues around care (physical, emotional, etc.) and/or funding and/or pain meds? Is there anything I can do from Nanaimo to help with any of this?

We're sending you all the virtual hugs you can stand, and a few more...

Lorna, Bob and Liam

yanub said...

People really think you are relaxing or enjoying yourself? Damn it, you people who think this way, have you never needed to distract yourself from pain, or distract someone else from theirs?

About the air conditioner--y'all had to replace one because you need to run it all the time? Was it very old? I ask because my Texas brain assumes air conditioners are made to run all the time always, except for the sporadic handful of days during the winter when the heater has to go on. And this new one was bad right out of the box. Do they not have decent ACs in Canada? ACs are a matter of life and death. A new one should work well and for many years of nigh-unto-continuous use. Shame on whoever is selling substandard equipment.

I hope Linda finds work soon, and that it is not in Victoria. It would be lovely if you could be in some city where the doctors don't make malpractice such a pivotal part of their daily routine.

cheryl g said...

Damn! I was hoping the new air conditioner would work and provide better relief from the heat. I will talk to Linda about exchanging it and help research for one that would be effective and quiet. I am sorry you spent so much energy preparing only to have it not work.

A pox on the unhelpful staff at Pic A Flic. They need to learn how to say, “We made a mistake and we will fix it immediately.”

As for the so called doctor who obviously graduated with honors from the “Dr. Mengele Academy of Compassionate Medicine”, I am so angry and disgusted I feel sick. I would like to report him to the college of physicians and have him reprimanded. Is there some secret force field that repels caring and compassionate doctors from Victoria leaving only bullies with god complexes?

DVD’s and manga aren’t whims. They are necessities. When I write that I wish I could grant your every whim I am thinking in the context of deciding to go to New Orleans and making it happen within the week. Deciding that you want to soak in an Onsen so I make it happen. I am not thinking of the dvd’s, manga, games, pocky, soda or other things that I consider necessities for you.

I am saddened that the pain is so bad. I would take some of the pain and burden from you if I could. I would take it all if I could.

Lene Andersen said...

You have a better video store than I do - I couldn't even find The Sleep Dealers on the Canadian version of Netflix!

Second, if they know there's a mistake, they ought to give you a free rental - haven't they heard of customer service?

And third. No, that's not what I meant about learning the Good Cripple role. That man is an abusive, power hungry asshole and ought to have his license yanked.

And more importantly... your list of wishes is a heartfelt call for understanding, ringing with truth. I used to get so tired of people telling how nice it must be to nap every day - yes, maybe. If it was a choice instead of a pain management essential. So I renamed them Mandatory Rest periods instead. It doesn't mean I know how you're feeling, just that it's my way in to try to begin to understand your reality. I wish so deeply this wasn't so for you.

Veralidaine said...

I may not understand all of disability life even with the problems I've had lately, but this bit I have some understanding of--speaking and eating have been difficult for me for three months since I can only open my mouth about half an inch, it is as if my jaw has permanently wired itself shut, and the dentist is NO help... time for second and third opinions, but TIME is the operative word, as in I have none of it! Or money, having just paid $700 for M-cat's dental work...

Anyway, yes, I understand it being worth it... it is a question every day for me, "eat soup and no pain, or eat solid food and have a sore jaw that hurts when I talk for the rest of the day?" Mostly I eat solid food now. I got really tired of soup and smoothies! A sore locked jaw isn't a disability compared to anything you're going through, but I now at least have a frame of reference to understand the choices you make. And I can't fit bagels in my mouth, so of course the ONE thing I really want is a bagel! That and a steak, which I can't chew.

I'm sorry about the rude doctor. I wish I could give him your speaking difficulties for a few weeks and see how HE liked being taunted and forced to use extra spoons so someone else could get another laugh. Of course there are only two choices in life, eventually acquire a disability or don't live long enough to acquire a disability, so if he doesn't die young eventually he will understand. Maybe understand is too strong a word, since he probably still will make no connection between his past behavior and that of anyone who mocks him as an old man shuffling along with a walker...

I hope a new air conditioner comes soon for relief from the lack of rest. Would a service like be a good alternative to the video store for you now? I know you like to go out, but perhaps if they are going to start giving you even MORE trouble than usual it would be good to go with an online rental service instead and save the outing spoons for things that aren't as frustrating.

Crossing fingers that you can get better rest soon...

JaneB said...


stupid defective aircon!

Survival means eating and shitting, but for HUMANS it also means keeping the spirit alive and actively being human. In the death camps, in the labour camps, in the under the most appalling conditions of torture where the guards deliberately tried to dehumanise their captives, people organised choirs and philosophy classes and wrote poetry, they fought to do little human acts of kindness to each other, to see a flower and appreciate its colour and beauty even if it was a weed, to look at the stars. Because THOSE are the things that keep you human.

deadrose said...

As I've gone through this migraine (or cluster headache) cycle, I've had a lot of time to think of you. Not much else I *could* do but sleep and lie around in a dark room.

I'm really sorry that it's been so bad lately. Do you think a soundmasking program would help? I'm trying one out for us, and if it seems to work, I'd gladly pay for a copy for you, too.

I sure wish there was more I could do from here, like smack some sense into that condescending doctor and the video store clerks.

Oddly, people find me far less threatening as a dumpy little grey-haired woman in bifocals, compared to my previous appearances. The white rage just doesn't work as well as when I was a spikey-haired punk with big boots.