Wednesday, October 12, 2011

Why is my 'dying' different THIS time: catching up on a life striving, alone

I’d say I’ve been ill, but like flavors of coffees served in deluxe coffee houses, there are thousands of ways to be ill. The human body is a miracle in fluid biotics, and I’m running out of systems or organs that work. I could not be woken, and so I sailed on. And by the time I woke, I could not move. How I can have the pain to make have moons with close cut fingernails while sleeping but paralyzed enough to take 30 minutes to simply sit up is perplexing. A couple hours later and with a couple tonic clonic seizures, and localized ones I am paralyzed again. I would love to say that I am patient and it is not tedious. The only advantage is the worker putting the eyepatch on me, propping me upright so I can drool and skip ‘Shiver me timbers’ to “Arrrrr!” (That sounds erotic: “Shiver me timbers”, perhaps a new pick-up line?)

Without enough food mass with morning pills I have an absorption reaction. It feels that the Arch-Angel Michael has seized my heart and squeezing it for his morning juice drink. At the same time, my forehead is popping, by body shivering and the blood pressure spikes are so high that my body shakes uncontrollably. Those are just the overbeats and erratics of my heart playing it as they try to jam eight lanes of blood traffic into a B road over the Dartmoor at 100 mph. The reaction continues for 20 minutes and unlike that infamous memo, this IS torture because it does inflict organ damage to liver and kidney.

So, I hate it when I take the pills before I eat, just because of a distraction. But the pain I experience hourly allows me to keep on until I can’t stay upright.


Recently, with ups and downs of energy and sleep I think I am simply disabled: a nice chronic disability, or cheerful degenerative disability. 2010 seems like paradise, the days when it was LIKE a bad disability, which is driving a body like a beat up VW: one which needs a host of brake, oil and other fluids added, plus needs friends to get out and jog along while it goes up hills. For me, I don’t even get to pretend I’m co-pilot or navigator, particularly when Linda, trying in her silent way to help, shoves me aside to dump a lot of expectations on my lap. Like arranging a meeting for me, and letting me know with less than an hour to go that I am supposed to eat, dress myself, do hair, get wheelchair ready and wheel .5 miles to meet someone I don’t know.

“Oh, I guess I should have told you about that, right?” she says, as her expectations end up throwing me into the back as she tries to manipulate my body without bothering to pick up any data (like driving with the windows and windshield blacked out)…until the body crashes.. That’s when she turns around and effectively asks, “This is a rental, right?”

The three hours of exercise last week worked (except for not sleeping for a day), so I did another two hours on Saturday. So Linda decided we should go picnic 12 hours later plus do postcards and that non-sleep, fatigue caught up.

I was mentally revved up doing some academic sub-contract work until I had spent a couple hours plus interpreting a 1986 Anti-USSR pro-marxist LONG academic paper from a misogynist attempting to appear a feminist. ‘pink collar workers’: have you heard that phrase in a while? No, me either. I took that as a sign that culturally we HAVE advanced! Of course, nothing harder than trying to explain offensive horse shit in a public environment, like how women’s ‘feminist dilemma ’ is our yearning for the freedom we enjoyed under the patriarchal framework, where men are always in charge from home to workplace, that firm hand so ‘natural’. Then there was how we (women) are failing civilization by attempting to teach outside our gender context (big brain subjects like all sciences), which has lead to the ‘new math’ and ‘new science’, threatening global security as we lapse behind the USSR. Yes, our statistic problems with parallel parking destroyed the world, despite the fact that with 25 years of debate, the US Shuttle is grounded, and the Soviets are keeping humans on the international space station.

An interlude here to let you know that I wanted to do a space update based on previous research soon. In the last 2-3 years, Japan has created not just 1 but TWO space engines which surpass all current tech elsewhere like a Warp 9 being launched the same time as a Warp 2 (one ship went to the same planet as a US probe, returned in a few months, all while the US probe was still on the way back, and not due to arrive for two years more). Nasa’s annual symposium managed to claim credit for it (they tried and failed with the engine couple decades ago).

Back to how women shouldn’t teach or do things outside of ‘pink collar jobs’ due to a) the need for a stable nurturing figure for young elementary school students and b) All women live in a Zero Sum Gain paradox: we cannot fully be there for ‘our man’ AND function as anything other than a drone at work. Sorry, we are not management material. All of this was hidden, like the bulk of bad writing and weak premises passing itself as academia under the Wittgenstein escape (from a misused idea out of Philosophical Investigations where words of vague usage and meaning may be more flexible). While reality is if you spot three big words in the first paragraph that have no fixed meaning and you can’t tell WHAT the writer means….’yes Capt’n, the crap detector is off the charts’.

I solved his problem the same way Linda and I did: alternative family units, like same sex couples. So lets beam up to a Star Trek spinoff, warp into a sun/black hole/etc and travel back in time to get this guy some man love, or a triad.
Oh, and Starbucks to celebrate Ontario’s 7th anniversary on the legislation to make all of the province barrier free by 2025, took out the wheelchair/disability table in the village to put in a ‘standing bar.’

I used up most of yesterday’s energy talking to the Canadian 2012 coach for paralympic swimming to find out how the reclassification of autonomic failure or dysfunction in wheelchairs as ‘doping’ and ‘cheating’ would affect me in a sports ranking. You know, to get that Boston Marathon qualification. This turned into them wanting to know why I can’t afford to get my wheelchair repaired at the shop and why didn’t Linda get her job back.

Besides that the job, and department doesn’t exist anymore, in an economy where the main employer is one form of government or another and you live on an island, and several TENS OF THOUSANDS of people are let go to try and deal with overspending on the winter Olympics, this question isn’t worth answering. I will say that her mentor, with 18 years in government as a high end manager managed to get a job after a while helping process drivers’ license (a job Linda didn’t get short listed on).

They don’t see any hurry for wheelchair repairs, so the one with the seat, cushion, arm, back and neck/head support wrong is over a month just to be examined. “So what if you are dying, the doctors always think you are dying, what’s different about that?” They say.

This shows both a common bias but a good questions based from ignorant premises.

The Bias is this: if you have a rapid disease, and you aren’t dead, then it wasn’t really that RAPID was it. Right? Okay, it has been 4+ years and I have heart lung, diaphram, failure even while sleeping, but I can’t be THAT bad. And if you happen to be one of the only people with this disease variant who are alive this long if not THE only one, then again, what indicates you are going to die any time soon. It is like having to run the ‘fitness test’ for 12 minutes as hard as you can, and then if you don’t vomit, “You must not have been trying,” and are sent to run it again. And when you come in and vomit the second time, you are told, “Vomiting often shows who the slackers are.” And are sent to run it again.


I can understand that when I was out and slim and fit and ‘doing’ by boxing, badminton, tennis, and taking on the establishment with additional time to go wheeling for photo taking, then it was fun. I blogged daily for over a year in 2008-2009 so why not NOW? Well, when it became clear I wasn’t disabled, but dying, I lost a lot of readers/commentors. Then when I didn’t die within a specific time, I lost more. When, with me screwed and Linda unemployed and our lives on hold for over a year and a half, I lost more. Why check by daily, even though that is how often I write. It just takes days to get the a post done. And without a flow of free postcards going out, even more left.

I keep thinking about Sara, and how her fun and funny cooking and living blog about amputation living became about cancer again and her brain tumor. Then it was about post-surgery and recovery. And then there were infrequent posts, some trying to be like the posts of past, others short updates. Her emails dropped off, as the cancer spread everywhere and her husband/partner worked and cared while for 8 months she degenerated and spent the time getting from the start of the day to the end. There might not have been hope, but there was at least some point in going to the hospital in emergencies. Was Sara of Moving Right Along any less worth knowing? No. Indeed, I tried to email her regularly knowing I would not get a reply, but I did not do it enough. My ‘Family’, my co-exchange individuals, met online have been silenced one by one. That is a choice. Sucks for me, but then, I can’t BE the Beth with Energy levels of 2009, or 2010.
So go get me some individuals with stage 4 lung cancer who start berating someone who has cancer in the brain, the heart, the lungs and lymph nodes on surviving another year and then there is something to talk about. Take the miracles when they come and as they come. So: Why am I dying ‘this time’

1) The two doctors of the palliative unit going to bat, overturning VIHA by emphasizing that I clearly have less than six months (that was over 3 months ago).

2) The emergency response team from palliative department show up in the living room.

3) Having internal bleeding all the time

4) Having the bleeding increase 20% in the last month.

5) Having organ and internal trauma now exceed that of full time athlete and tri-atheletes.

6) Inability to go without absorbing nutrients for more than 14 hours before going into shock.

7) Inability to go without medication for 24 hours without pain increasing to the point of being held down and screaming until the voice is gone.

8) Failure of heart, lung, diaphram, liver, circulatory system.

9) Heart is in a state of continual heart failure, which would lead to death, except the thousand fold increase in erratics which tells the body the heart is shutting down is electrical. But also because the heart uses only the aurota’s, and the ventricles not consistantly.

10) Failure of the diaphram causing stopped breathing and crushing of the lungs. Over 1 week of having to have someone operate the lungs for me. Now, even that fails as it goes into the stomach and prolongs the lack of oxygen.

11) Having to triple the stimulants to keep the heart beating fast enough to allow me to be conscious (often caffine).
12) Requirement to exercise with extreme blood pressure and heartbeat for over an hour in order to sweat, and do that each week. When I fail to exercise, the edema takes over and the vascular degeneration accelerates. So no matter how hard a week, or sick, I have to go up and work out. Then not sleep the following night from muscle pain.

13) Acquired muscle and connective tissue degeneration and tearing.

My body is a very delicate balance where IF I do over a dozen things all within exacting perimeters, I do not die right away. If I fail to do any of these, or let any of the secondary dozens of things I have to do to manually compensate for every body function from my intestines, to temperature control, to blood flow regulation, to actually being able to generate body heat (which I can’t do if I miss eating for just 25 hours). And if any of the extra stressors are not fixed, and all of this is maintained then RIGHT NOW, I won’t go into the ‘death cascade’ or organ failure.
To do all that used to take 5-10% of energy a year or two ago, now it takes 60%+ So, if I have an appointment and lose 2 hours, I am behind on doing the things to keep me alive. I can still have, due to becoming too weak heart failure, lung failure, diaphram failure or circulatory failure including pressure spikes producing a massive stroke. The TIA (micro strokes) are back all the time now. That takes a whole 2 days of dedicated effort to go, to sweat, to shower, to dress and then to recover enough to sleep without stopping breathing. And now, before flu shot, with the blood test showing I have no resistance at all, any infection from a tickle of a sore throat of a worker that I catch WILL turn into pneumonia. And yet, every week my pain increases, and I weaken. There is a limit, fairly soon, of how much more pain med I can have, and then I just won’t be able to sleep. Or my liver will give out.

Perhaps that will give you a clearer idea of why I am dying soon.

I am still working hard to be a better writer, witty and interesting, engaging even in dying.

In between the hard times, I keep yearning for that better life. I want Linda to sleep. I hope that if she does, she will be less cruel. And when she is angry with workers, she won’t take it out on me as much. The workers, coming and coming, ‘a sea of blue’ (blue are ad hoc workers, and black are regular) the night RN says looking at the last three weeks. She sounds appalled. I sound desperate.

I haven’t had but one trim to my hair in 2 years (it is a mare’s nest of tangles). The needs I have are specific but also small and large. I haven’t been able to service my computer in six years. The van needs a tune up. I have no place to wheel to as my Starbucks card was used up several months ago treating Linda to a strawberry drink. Knowing I have $15 to get something at Starbucks makes a difference. Choices make a difference.

The money I have for my emergency funds to get back from the hospital (if I am out and collapse and end up in hospital, I have to pay to get home), that was used to pay for parking. During the summer, I watched TV series because the heat make my health brittle and the pain throb like bass speakers on a tweaked out car. Even as I sell them back quickly I lose funds each transaction. The $10, and $15 and $10 all add up. I’ve been selling books and DVD’s. I saved some funds. Linda kept telling me she needed a large fleece blanket for the winter. I gave her one last week, it took the rest of my savings, that and some more presents for people. I buy items and forget that they haven’t contacted me in months. I will save to send them out, I guess.

I have now seven full boxes of presents. I am working to send them out. The problem is that many of the people, during the summer having gone away and not returned, I don’t even know if the address is current. I don’t know if they remember me.

They left before I could thank them for being a good friend. Before I could show them that I loved them, as they had shown they loved me. Linda’s lack of sleep affects her, it changes her.

She forgets I am fragile. She forgets that I only remember the terror after the incident is gone.

I want to have a better life. I want to go on respite, and I need to save for it. Whether I go to a motel or the hospital, it costs. I want to live.

The disease doesn’t care what I want. And I am running out of time.

If you asked me the one thing I learned in dying this way: fast but still slow and hard. I would tell you that it is to die comforted, to die knowing that you are with the person you love who also loves you. This is what Jesus screamed in an emotional pain greater than the physical pain of dying. When we die, let it be craded in love.
I think the hardest thing is to die alone.


Baba Yaga said...

Yes, I believe the hardest thing is to die alone. Possibly next to living alone. You're doing a lot of both.

I'm sorry I've been so out of touch.

Penelope said...

I'm a bad commenter here because I just generally don't comment on blogs (even though I read quite a few).

But I do check here daily and have done so for years. It's one of my first things I do in the morning, even before I get out of bed. So I just wanted to let you know there is someone out there who is still reading and still listening. I wish I could do more.

Thank you for continuing to write. I dread the day when you stop.

SharonMV said...

Dear Beth,
I don't want you to die alone. I don't want you to be in such pain and the awful pain of loneliness. I am sick every day - people don't understand that. But I'm still have days when I can work on my crafts, Dennis gets a day off now & again.
I wish you could have some days where you didn't have an emergency situation or extra illness. I wish I could be there to get you some breakfast before all the pills ( I don't even make breakfast for myself, but I'm sure I could do it for you. Wish I could be holding your hand.

I'm sorry that so many of your friends went away. But some of are still here.

Love, Sharon

Selene said...

I'm here, reading and witnessing. Love your writing and insights, always. Wish there was something that in a small comment could make any of this better. xo

Michelle said...

I am still reading. Still listening.

Noisyworld said...

Still checking, still reading, still thinking you're bloody amazing- sorry, couldn't resist the terrible pun XD
Wish I could fix anything helpful, even telling that mysogynistic academic where to stuff their pink-collar :(

Kita said...

I'm still here, Beth. Still holding your hand from across the water. Still listening, still caring. You are not alone, sweetie. <3

Anonymous said...

I dunno if it helps but Im still here and I still love and pray for you both,,

cheryl g said...

The word ill doesn’t really begin to encompass what you have been going through lately. I see you weekly and have noted a continual weakening. I want to hope for SakuraCon 2012 but I wonder more and more often whether you will be alive in April. It seems like more and more systems are failing or weakening more rapidly so what was possible weeks ago in terms of energy and activities is no longer possible now, or it comes with a much higher cost.

The one thing I wish I could do for you now is provide a large sum of money so you could have better care and more comfort. So Linda could not work and worry but concentrate on spending as much time as possible holding and loving you and being there so you aren’t alone.

Lorna, Bob and Liam said...

As long as you keep breathing, there is life and hope.

I'm sorry you're feeling lonely; I can't imagine how either you or Linda weather the pressure on your loving relationship. You both need time and space to just be, something that seems impossibly scarce.

Still listening, for what that's worth. Still caring, for all that does.

Courage and strength to you both.

Lorna, Bob and Liam

wendryn said...

I'm sorry it's so bad. I'm still listening, reading, trying to be there for you as much as I can. *hugs* I'm glad you are still writing, even though I have some small idea of how much it takes out of you.

Genevieve said...

Hi Beth,
I am one of your silent readers. I have read your blog off and on for a long time - since before you were diagnosed. One of the things that has always impressed me is that you and Linda have stayed so strong for each other and it saddens me to think that this bastard of a disease is damaging your relationship.
Platitudes suck, being sick sucks, and dying sucks for you and all the people who care about you - including the silent readers like me.

Lene Andersen said...

I'm still here, still reading. Sometimes it takes me a while, but I get here.

Thank you for sharing your reality. It can be hard to read, but hell... it's harder to live through, so read on! I think a lot of people want to stick their heads in the sand, though. We'd all prefer if dying was as peaceful and composed (and pretty) as it is in movies, but real life and real death just aren't. And it's scary. Knowing why some people leave doesn't make you feel any less alone, though.

One of the things I love most about your writing (and there are many) is your fearless honesty. for as long as I've known you, you have challenged preconceptions and the status quo and I hope you don't ever start to edit yourself. The truth is hard, death is hard, but dressing it up and making it pretty would be a lie. Am I making sense?

I'm here.

Neil said...

Still here, even if the computer won't let me comment (as it wouldn't yesterday). Still caring about both of you. Still loving you both.
And still wishing I could help you both financially. And I'll be here until you tell me to go away.

Thanks for the blog, dear, and for being so honest.

Love and zen hugs,

Elizabeth McClung said...

Penelope, Selene, Michelle, Kita, Genevieve: Thanks for raising a hand and letting me know I'm not alone with my too wide stare and the sign: "The end of the this space"

Off for sleep, another appointment, even on a saturday.

Vanessa and Gang said...

Sick again but still reading.

Ty for the postcard. :D

Bonnie said...

Still here, still reading.

Kathz said...

Still here, still reading, still caring - and still aware of how very little I do. Sending love.

jesse-the-k said...

Still reading.

Read ZED and loved it.

Best wishes.

Elizabeth McClung said...

Jesse - thanks. I still hope to write more, but it is odd how the road can turn left when I thought it looked like straight sailing ahead.

profacero said...

I'm glad I found your blog (well, really you found mine, but I'm glad I followed the link to yours) !!!