Sunday, July 31, 2011

Beth Re-animated

Tip for the day: Black pee is bad.

To check my health today (like the weather), click HERE

A trip to the doctors and my pain meds are now almost double what they were three weeks ago, plus a referral for catheters. You may be wondering what death with dignity has to do with indwelling catheters when you are too weak to be able to transfer to get to the toilet. Not much.

I spin like the flower, slowly wind-stripped of petals, far, far below what I imagined and was informed the minimum of life would be. Even reading how patients with autonomic failure die only gave head knowledge, not ‘heart’ or gut-knowledge. First it was leaning that something like that could happen, suffocating to death, then it mentally understanding it was possible, then realizing exactly how it would unfold, as the individual parts already had, just had not all come together. Finally, with the diaphragm failing, and communication limited to half a word spoken in a pressure-less exhale, dying like that becomes one of the things to work against, to ward against.

Last night, after a tense influx of breath, forgotten, left me seeing spots and the feeling of drowning deep down in the black water, I reminded myself again, “Do not hold breath….as you are too weak to regain the oxygen, or the breathing.”

The heat and fatigue brought by circulation, breathing, sustaining a body brings about micro strokes. I am still prone to talk too much, though it often results in me face down (a photo book: 101 pictures of Beth face-down in interesting locations and foods).

Thank you for the encouraging messages. Less so the 'please send one last postcard now!', as I think you might have missed the point of the previous blogs from Cheryl and Linda and the Postcard Project.

Now that I am to the point where it looks like I might last the week, the complications of that crashes down upon me, in library late fees to regret at not getting a giant garage sale sorted while I still had the energy. I have over 50 postcards still to finish decorating, to write and send out. I have to try and see around the floaties in the eye from the starbursts of high blood pressure and dying capillaries, hoping the body will absorb them somehow and sight will be returned. The collection of eyeball blood bursts: ‘eye of a H junkie run out of places to shoot up’ is a bit ‘ick’. That and the worry I may be taken for a wheelchair zombie.

There is a Terry Moore ‘Brazil’ style organization surrealism as people openly talk about the days or weeks I might have. “Think I can make it until Thursday?”

“Not if you keep losing that much blood, and if the weather gets cooler.”

Reports go up and back as agencies try play ‘pass the parcel’, where Beacon, running out of workers who can get the concept that I am not 80, not bedbound, not apartment bound (all times), yet I am often more ill and more fragile than clients who are in bed 24/7. Also, in a given week, I may be in bed, asleep or just barely conscious for two to four days. Palliative organization says I am registered but not in my last three weeks (though different managers try to convince them otherwise), so no mysterious Black Van to come and collect me. Yet I am woken by EMT’s as a phone jostled by a worker sets off a ‘disconnect’ on my lifeline and being a high risk, EMT’s are sent.

In the horde of zombie fiction Rot & Ruinlurches ahead of the pack. Timely and apt this week in reading, it envisions a world of grief, where death hangs over the remaining people and culture like the Great War did. Benny ends up in ‘The Family Business’, which he enters at 15, in a world of small enclaves and the great vast land of Rot and Ruin, 300 million zom’s. His brother is a ‘closure specialist’ who, unlike the majority of bounty hunters out there is not racking up the kills for profit but finds individual for family members who want closure. Much as we try to remove the idea of death and us, people fear ‘zoms’ not just because a bite means becoming one but because it opens up a whole Pandora’s box of pain and loss in remembering the First Night, and that brothers, sisters, parents, children all remain out there, undead and unliving both.

I will try to find a posting schedule that works, twice a week, I hope, as I have a dozen posts written but for illustrations or rewrites. And I plan, if I can get some bleeding and body parts back under control, or working again, to get a bearable life, and a shareable life working too.

To finish here is an apt minute and 50 seconds, Into the Dark, illustrated by parts of the film 5 cm per second (the time it takes a cherry blossom to fall), recommend high resolution if possible.
Click HERE

21 comments:

Tina Russell said...

YAAAAAAAAAYYY (huggles)!! I’m always happy to have the wonderful Beth back. Wow, you die hard. It’s so soothing to read your words and know you’re still out there. I know it’s hard to know how much longer you’ll be with us, but I’m happy for every moment of it. Beth, you are great!

SharonMV said...

Dear Beth,
It is wonderful to read your words again. I have missed you, worried about you, cried over you. And now I hear again your voice, for I have always heard it in the cadences of your words. I wish you had breath to speak more than half words aloud. It must be so hard to experience & feel what you only knew before.
I hope you can get back to a posting schedule and have time & energy to spend with Linda. Hope the pain meds are enough.

Love,
Sharon

Baba Yaga said...

Well, it's good to see you post. Rotten that you have such horrors (really, I don't wonder that you feel like a zombie) to post about.

Can't help thinking that the simultaneous astonishing strength and frailty of the human body (combined with the astounding force of your will) adds up to a complete bastard. Each new manifestation of your illness seems to stretch what the human organism can possibly endure a bit further beyond the conceivable, let alone merely bearable...

Wish I could relieve that for you, and know that wishes are futile things.

"One last postcard now" - oh, my. You really do inhabit a world of surreality, don't you? The cruel thing is that the message of that and the un-care you receive in the place of basic decency is that *your* humanity is somehow not quite complete and worthy of respect; where really, it's the people disregarding you who are a bit lacking in that quality...

'Puter troubles mean I can't, alas, see your film. If I make it to the library this week (my period of relative balance between ability to do and requirements for doing has come to an abrupt end, so it's not at all guaranteed), I'll see whether their computers allow it.

JaneB said...

Glad to hear from you - even if it is with such a catalogue of the extremes of human life... much love and well-wishes coming your way.

vanesssa and gang said...

I'm so glad to see you post. :)I was very worried.

Noisyworld said...

he he he he he
I'm not at all surprised mine tasted a bit funny lol
Fab, I'm glad your sense of humour's still fighting like the rest of you :)

Lene Andersen said...

SO glad to see you post, to hear your voice come through this clearly. It never ceases to amaze me how you can be so very much YOU while being so sick. Dying isn't pretty. Thanks for being an antidote to the fuzzy loveliness you see in movies. Because of you, there's a chance more people will be able to still see that there's a real person within the one who's dying. If that makes any sense.

One last postcard? Seriously?? Being your friend has been an education, mostly in good things, but also in learning just how callous people can be (Beacon) and how clueless (postcard).

wendryn said...

I'm glad to see you writing again. We were worried.

I suppose I shouldn't be surprised that someone asked for one more postcard, but I still end up shocked and angry at the insensitivity of some people.

I hope you stabilize enough to do what you love. *hugs*

Anonymous said...

Thank you Beth for loving and caring and teaching me more than you'll ever know.. Id send a hug if I thought it wouldnt cause you pain.. and a hug for Linda and cheryl too

cheryl g said...

I love the link to zombie Beth! It was just the laugh I needed. I suspected my brain was spicy so I hope it doesn’t give you indigestion.

I am glad to see you posting but please allow yourself time to rest and recover. I wish the PTB weren’t playing pass the parcel with you. I wish you were able to have better care and I hope the increase in pain meds gives you respite from the pain.

Thanks for the review of Rot and Ruin. It sounds like a good read and I will be looking for it.

Raccoon said...

Yes, black pee is bad. Really bad. That's a kidney thing.

I don't think you should worry about library books or yard sales now. Not reading the books, and not going to yard sales, that's worth worrying about.

I'm not surprised at Beacon trying to play "hot potato." They've been trying to do that for the last four years with you. Now, hospice is a different matter. My question is, how is hospice able to determine that you're not in your last three weeks? Have they got everything down so that they can predict when your final day is?

Rot & Ruin sounds interesting. I've never heard of the author before, but it seems like he's got a lot of books out. And most of the customer reviews seem real positive.

Still here, and you are NDY. Which is good.

Kate J said...

So, SO glad to see you're still there! Just imagine that chain of friends around the world, all thinking about you, willing you to keep strong.
I just had a 2-hour hike to an internet cafe to see your blog and post this comment, as I'm currently away for 2 weeks volunteering on RSPB reserve at South Stack, Anglesey - no internet here, so I came into Holyhead to buy some essential supplies and catch up with you! I'm off to buy and send you a postcard now... thinking of you as ever. I'm heading back over the mountain now!
NDY
Love & peace :)
ps thanks to Linda and Cheryl for keeping us posted about your health...

Elizabeth McClung said...

Off to see the specialist. This is the 'last chance' for any treatment which might slow or change the disease. Have lost equilibrium and dizzy all the time, which makes it hard to stay on the toilet to be honest. Also, I turn my head and fall out of bed, bit distracting that. I hope you are all doing better than I.

Kita said...

Beth, its good to see you posting again. I ~(we all!) worry about you - you are on my mind all the time. I love you, I love your style of writing, I love your EFM way of things. I wish I could be there to help you in any way possible.
You are taking your dying with grace and honour. I hope, when my time comes, I would have the same grace as you have shown. I feel though I will be screaming and kicking until the very end!

Anyway, lots of love and warrior strength to you. xx

Anonymous said...

I love my post card, the zombie said my brain was nutritious! must be all that studying :-)nicci xx

Hot Pink Femme said...

*hugs*

SharonMV said...

Good Luck at the doctor appointment.

Sharon

Miyet said...

Beth,
I stumbled across your blog the other day by chance (I was googling anime images, one happened to link here) and I have been reading it since.
I created an account specifically so I could comment, actually.
I just wanted to say that I think you're a very strong individual. Your drive and compassion is inspiring. You seem to counter the worlds odds with a smile on your face and love in your heart.
From your words alone, I feel I've derived that you are indeed a very beautiful, wonderful individual.
Just reading what you've written has given me such hope.
Thankyou for being you.
*Wishing you hugs, love and all the best*
~Miyet

Baba Yaga said...

Specialist: best of British. That should be best of Canadian, shouldn't it? Best, anyway, just for once, is what I'm hoping for.

Neil said...

How the Hqiz does a person know when someone is in the last three weeks of life? It sounds like Monty Python's "not quite dear yet" scene!

"Oh! You're due to die tomorrow, so please make payment for the television you've been renting." The hospice employs clairvoyants, right? So they can tell when your number's up. Or do they just throw you to the zombies? :)

Lorna, Bob and Liam said...

Is it wrong that I peed, just a little, when I clicked through to the zombie page?

I know I cried, just a little, reading your words about this part of your journey.

Hugs and blessings,

Lorna