Friday, December 16, 2011

come out of the morgue

After two days of not being able to get up for more than an hour or two or to be up, to wake at all, Elizabeth asked Linda to contact the palliative unit to come get her. But, as Elizabeth was told on Monday she would hear from them, and did not until Thursday, when she was unconscious and too weak for a call…it seems even in going down, there are bloody delays. Even when it takes the will to get up, to eat so that the organs of the body, the liver, the bladder, start working again, it is not enough.

When will I get the time to write again? Does a picture of me lying unconscious show you something, even after 17 hours a day of it, or 22, day after day of unconscious and pee that is pure white, with no protein at all because everything is shut down. A picture of five layers of quilts atop me, because my body cannot heat me anymore, does not have the energy or the capacity. Or the bleeding, from the nose, and the ear, and the anus, all the time. IS that what there should be pictures of?

I watched this the other day and I realize that maybe people don’t know what to say and yet, since I have no knowledge of anyone saying or thinking anything except Linda who talks less and less on the basis if you can’t say anything nice don’t say anything at all.

I have been worried that every month I live, which seems to burn years out of my body, it makes my organs not useful for donation. That was the one blessing of dying early, was the gift of life to someone else. Only it seems this disease destroys everything. You were right, you roller skating peds palliative doctor. You were right when you told me you wouldn’t watch this happen to me, that it is a cruelty beyond viewing. Come back to the living, and out of the morgue. For I will soon be gone.


Anonymous said...

you have my love and my prayers for peace and relief. naught else I can offer will belp

Tina Russell said...

(hugs) If it helps any, Beth, I still think you’re beautiful, no matter how mostly-dead your body is. Even if you can barely get time to write from all the fighting your body you have to do, you’re always in my thoughts and my heart. You matter to me and you’re a great presence in my life.

Linda McClung said...

I'm disappointed with the hospice response unit as well. Just didn't get the support we needed.

I have been worrying about the amount of sleep you have been needing, your inability to maintain your core temperature, and the shutting down of organs. All impact your ability to enjoy living - doing things you want to do.

Kate J said...

Once again you seem to have been let down by the very people who should be there to help, the palliative care people I mean. What are they there for, if not to help people in your situation? No wonder you sound to be in despair. Thinking of you... for all the good it can do.
Love & peace

Elizabeth McClung said...

I am terrified of going to sleep. I went to sleep on Tuesday and now it is Friday. I want to die looking straight ahead. And I want to have the smallest control which is denied me: Knowing I will awaken, and when.

It helps, in this odd closet I live in, have fevers and delerium in, and will die in, to know that I fight with the strength of those who wish that I win. That I can make a schedule and wake to it, and Linda gets a job with sick days and dental and we are able to pay for batteries, toothpaste, paper towels and all.

A friend I thought was a soul mate, someone who I sent postcards, letters, emails, presents and took the joy of knowing our lives were intertwined as we used each others gifts of love. And then, being a doctor, a palliative doctor, once she knew what I had, she wrote. She quit her job. She worked in the morgue, so not to have to care about the living, and wrote no more. But I think of her every day. I keep sending emails and postcards, just like I do to the person who stood up as my cousin, but then, simply stopped.

How can it not hurt when a friend tells me that they choose not to care anymore, because what will happen to me is too hard to watch happening to someone they care about. And so have my parents, my brother, and many of my friends, those who for years were there, were always there, and now they are there no more. And I live it, and in my delierium dreams I see them walking away.

Is wanting a hand to hold at the end too selfish? Thank you for being, for saying...because your presence even online is a comfort.

cheryl g said...

To be absolutely blunt, hospice in Victoria seems to be as F***ed up as the rest of the medical system. The hospice response unit is apparently misnamed as they certainly don’t respond.

No, wanting a hand to hold is not selfish at all. I love you and I am staying.

Lorna, Bob and Liam said...

Beth... even as we write these comments, we have no way of knowing how long you'll be able to read them, let alone respond.

This is what you MUST KNOW: that we are all still here. We still love you. We still witness. Even as you may drift further into your "odd closet", and may lose this means of contact... the contact will not end.

Because you remain in our hearts. And our hearts will be with you, even when you can't remember us, or talk to us, or know we are there.

Such is faith... please have faith that we do still love you.

Blessings to you and Linda both... we'll hold you close in spirit.

Lorna, Bob and Liam

Raccoon said...

Your first paragraph had me thinking it was Cheryl writing.

I think that, unfortunately, hospice is part of the medical establishment. And, unfortunately, we've seen how the Canadian medical system has treated you.




In other news, I got a Christmasy postcard and a package today. Thank you!

I'm still here.

SharonMV said...

Dear Beth,
I'm still here, still love you always, my beautiful friend. Yes, it hurts to care, to know what you are going through. I feel a closeness to you - I wouldn't want to give that up. And at least I have love and attention i can give you. Wish it could be more. I am glad of the people here who stay & those who write you. Sorry that the palliative care people did not respond and give you support.

Love to you & Linda

Anonymous said...

Here at GCN we are praying , loving and caring.

GirlWithTheCane said...

Beth, I know that we haven't known each other long, but you are someone that I hold close in my heart. I wish that there was some way that I could give you some comfort or peace. I think that you're beautiful, and I'm keeping you in my thoughts and my heart...Sarah

Anonymous said...

I am holding your hand, my sister, across the miles.
Nicci xxxx

Baba Yaga said...

I'm sure I heard someone extolling the Canadian hospice system not that long ago... I must have been dreaming. It doesn't sound like a hospice system in any respect that I understand the idea.

No, one never knows what to say. Apart from anything else, 'saying' doesn't change the things which ought to be changed. That's boring old reality. And with luck, one somehow says something anyway, and with even greater luck, it changes the loneliness just a fraction.

I wish there were more to do than that.

I've not been saying so much recently. I'll probably be saying less over that lonely holiday period, for I rather expect to be mostly out of computer contact. (Yikes! Will I survive?) I'll be thinking of you, though. I always do, even in the silent spells.