Wednesday, May 12, 2010

Breaking Point: a verbal snapshot

Extract from a letter to Linda at respite in Port Angeles.

I know you aren't going to see this until you get home, or maybe not at all.

I wonder where you went for Dinner, you wrote you were going out. I was going to get pizza but I don't have any funds, and I can't find a simple dinner that I have the hand dexterity to cook. Part of me knows that it is okay, that it does matter, that you would and will make the same opportunity for me. A Dinner out, lunch with friends, or just a get together with drinks. I know in my mind that this is what I want for you. I also feel left behind. With no food how do I have the after dinner pills? Thank goodness you put or the (care) workers put the grapes in containers and the pickles as well or I would not have had those, also the same for the grape juice. I put more of the drink containers and a cleaner tablet on the wish list - there is a cleaning unit including a pipe thing for the straw, I wonder if I should include that?

I wonder what was for lunch. I am glad that Cheryl took you in your caregiving burn out state and was there for you - a lunch ready for you, a place to eat, dinner and lots of sleep. I hope you felt special and loved, because from the description that is what Cheryl did, gave you the love and space you needed. I hope that helped. It is odd because it is like the dream day I have wanted, when I say I am suicidal, to be taken away, a 'surprise' lunch outside, or a dinner in the van stargazing, or a dinner out and drinks stargazing. I think from my health cancellations I am owed a few dinners and pubs out, but we know I won't collect. Truth be told, I just want to keep on not eating, as it makes things easier, more real. Your life in colour, and across space, time, people, and mine in a room, only seeing those who confront me…

In case you are thinking about it, I always like to hear from you, like to hear about your day, even when you are a wall away. When I don't, that means I am in pain, that I am messed up and like someone tending to a wounded animal that pulls away, the times you take that breath and help me with a pain pill, and the times you help me to bed so that I face you, and you talk to me, read to me, show me that you want to be with me are all I remember. I can't remember now exactly what we fight or get frustrated about, that only comes when that particular loop or bubble of info is opened up. I don't really like my writing to you, my desiring to talk to you being a 'by the way...' but I guess it is. For you, a sunny day, for me, sounds of hammers and saws at high pitch. You hope for sunny days and I hope for rain, because I can't go out and so I hope for what will make the noise stop. Maybe I should wheel out and wander by myself for a few hours, take the van out. I think maybe that you wouldn't like that though - a respite from dying. Returning, would there be love or cold silence and anger? Right now, I miss you, but I know you will be mad at me, I just don't know why. I always miss you. I want you to love and cuddle me - not after we say things to each other that hurt, but because you see me, and remember how much you love me. I don't know if that Linda is here - I think she is out in the sunshine, but not in the biege of plaster walls.

I hope you have a great dinner and enjoy yourself. I also hope some 'get well' cards came for Cheryl. I got up early and I am supposed to go to sleep early so I will be more in synch with the world and can let in the worker at 1:30 (I got up at 2:00 p.m. - had slight problems sleeping because my shoulder was in total spasm as it was the night before, I am slightly worried as this is what happened before I lost the use of some of my leg and feet muscles. And without the shoulder and connecting back muscles, it will mean I am down to one arm. That will make it difficult to play volleyball and learn how to dance yes?).

The muscles were still going crazy by themselves at nap time, good thing we have the medical m.

I understand now that I don't want to be dying, and I don't want to be left out of life again, but that it is my place, my destiny if you will. You have been here and been supportive (at the Y) and now they found a volunteer (to come to the Y with me) and you can go and do things with friends and go out and visit people and meet people and join groups and do things. People like you, they really do, I might be the one who goes boxing, but you are the one they talk to, even when they talk about me, they never ever talk TO me.

The fact that it is horrid and dull and dreary and it makes your life more difficult to caregive for me and you choose, maybe, to do it anyway, if that is what you choose. That is amazing. That is joy and love. Love definitely. I guess the joy takes work. I feel filthy and disgusting and I want to tell you to not come back, to stay with someone who loves you and feeds you and cares for you like you deserve. Why do you have to burden yourself with me when you have walks in the woods in sunshine? I think it has been a year since I had a wheel in the woods. And by myself, I think maybe years if ever. So why come back? Dying isn't a choice. And I would leave (my dying) if I could. Caregiving is a choice, every part of it. And there must be parts you hate, that make you sick of doing them. I just think it best if you don't tell me, because I already know you are sick of me living, that there must be a whisper thinking, "when will it be over?" Maybe I am the one giving you the benefit of having doubt when you haven't asked for it, mediating your mind, your intentions. Sigh.

You don't talk about dinner - is what happens over there, the time you had, the places you go, the things you do like counselling? It is something which I should not ask about, but just yours to share as you wish? You don't write what you think about either. Just that you miss me. I guess that means your thoughts are not mine (to share). I thought a lot about The Rose today (from the book The Little Prince), and how, maybe the snake made the same offer (as to you, the Prince). And though she (the Rose) was vain, and though she was scared and showed it by being proud, and complaining at times about the shade, that her pedals were already wilting from the heat before it came. That it was her fear shining through. And so with the Little Prince gone she realized that what life she had was not a life at all, but that the little Prince did have a life and visited all those people, and made new friends who cared about the Little Prince and as long as she lived, on this tiny planet which rotated every day with the volcanoes which needed cleaning, she wouldn't just be a prisoner, but the little Prince would as well. And that's why, the more she saw the little prince or thought of the little prince, the more she wanted the snakes' bite, so that he would always have the choice to go or stay. She could give choice back, the chance for new friendships, the chance for new opportunities. That's what I think about a lot. (a plan to take a drink of crushed barbiturates: a.k.a. the 'snakes' bite')

I know I am scared, and a coward. But I think I can be brave once, for you. I think it would be nice to see the sun before I go though. I didn't shower today because I could not stand up and breathe at the same time - first goes the standing, breathing and chewing gum and now I can't stand and breathe. So I thought I would wait until someone was here before I have a shower. I think I will have the (care) worker make me dinner for the next couple nights, and then whether she comes or not, you don't have to worry about it. I will be brave then, I think before the weekend - the going out idea wasn't for me anyway, it was for other people: you said I used to do it and people really enjoyed it - I didn't remember that but I look and see the pictures of us in the cemetery and people having fun - I don't know that girl in the cemetery, the one in the wheelchair - is she really smiling or is she just putting on a show, to keep the show going? I just can't keep the show going, but they don't have to know that, do they? They don't have to know that and can go out and celebrate. Don't tell them if I've already gone, just let them celebrate and have fun.

Love from your rose.

17 comments:

JaneB said...

(((Beth)))
(((Linda)))
Thoughts and prayers and love coming your way, for whatever good they may do you

Linda McClung said...

Dear Beth,

I love you so much. Yes, caregiving is a choice, and one I willingly make every day. I like giving you meals and all the other caregiving things, but even more I like spending time with you whether it is talking, watching tv, going for a roll, sharing a book.

I'm looking forward to seeing you in a few hours. Let me help you with that shower and maybe we can go out this evening and stargaze if the skies are clear. I can tell you about my dinner at the Mexican restaurant and the rest of my day and you can tell me about yours.

I love you.

Linda

P.S. We already have the cleaning kit - just need some more of the tablets. Thanks for thinking of putting them on the wishlist.

deadrose said...

Dear Beth - I wish I could wave a wand and magically pop from Seattle to Victoria right now. I'd love to keep you company, even on dark nights of the soul like this.

Linda *does* love you very much. I saw that at Sakura-con, in her gestures and words and looks. They were not the signs of a person who can't care any more.

We are going to make a dawn raid on the garden department at Lowe's and then I'll be able to write a proper letter.

*hugs*

FridaWrites said...

Elizabeth, I'm thinking of you. <3 <3 <3

wendryn said...

*hugs*

You are brave by existing. I don't know what to say - this made me cry and wish for joy for you.

Lene Andersen said...

That was beautiful and so sad.

How I wish I could be there and had enough physical ability to help you get respite, too.

SharonMV said...

Dear Beth,
I don't know what's going on, but it seems you are on your own & alone right now. I wish I could be there with you. I could hold your hand & talk to you, even if my care-giving abilities are limited. It is hard giving care, but also so very, very hard to need it. I love you, please don't go. I just mailed a package to you, I want you to get it, to open it & maybe smile. Please wait for it. I want to go to the ocean & smell the air - I'd love to be there during a storm. I want to walk in the shaded forest. But most important, I want to tell you about doing these things, I want you to know I have done them. That I have done them because of you. You have many friends, I am but one, one who loves you.

Sharon

PS: I am going to e-mail you my pnone number now.

dennis said...

you have no shame.

Vanessa and the Gang said...

Oh hun, I wish your weren't alone, or didn't feel alone at the very least. It's probably not much of a consolation but you are in our hearts and minds every day. There isn't a thing I do, a note to myself that I write, that I don't think of Elizabeth wishing that I could share the event.

I wish every day that I lived closer so that I could bring you meals and pictures and drinks to share. Bring a little sunshine to you in an otherwise dull and horrifying world.

{{{Much love and hugs}}}

Raccoon said...

I have no idea of what to say.

yanub said...

Interesting....

It's sort of stream of consciousness, with you revealing all the moods and thoughts that go through your mind during the day. When Linda is there, when she is not. You have a lot of confusion, and fear, and that is understandable. You also have an abiding love and appreciation for Linda, and for Cheryl.

cheryl g said...

I am not sure of a good number of things in this world but I am sure that you and Linda love each other deeply.

To dennis: You have no right to sit in judgement. If you don't like what you read you can choose to not read anymore.

Emma said...

Beth, I really don't comment enough but today I just had to tell you how much I enjoyed reading this. Your skill as a writer blows me away. As does you determination never to shy away from the difficult subjects. Much love, Emma

Baba Yaga said...

Thinking of you both.

It's such a nuisance there are no teleporters; Lida could have respite days and one of us could be with you, make sure that there's food and existence in other eyes and all that

You always exist in my eyes, even when I'm not saying so.

Elizabeth McClung said...

The ethics of publishing a letter written from one person not hanging on exactly, to another - I do not judge or blame Linda. I just wish more had read The Little Prince. Linda has her stashes of barbituates, I have mine, I hope if/when stability returns, we will remember where they are. I sharpen the knives, she hides them. Sheesh. The problem is that in order to use the opiates as a drink, I have to grind them all up. And with blue cross, if I don't die, I will have no pain control. Ha - "What exactly do you need emergency medicine for?"

Beth: "Um, I accidentally ground them all up and drank them with milk which I vomited up when unconscious."

On the other end of the phone there is silence before: "I think you better speak to my supervisor."

sigh.

I cannot live in a vortex. I was told today that as a neurodegenerative disease I just need the neogenome project (starting - the first person just was typed) - and how in Isreal they took and injury and sent tissue to Florida to be regrown - I asked why in Autralia they can get diaphram pacemakers but I can't here. And really, is BC medical going to fly my blood to Isreal, Australia and Florida for a DNA genome vaccine to be created? He said that I should keep on hope, that stem cells might be my answer. As far as I know, no stem cell curative applications are occuring in Victoria - also, ignoring the difficulty of getting my autonomic brain stem cells, how exactly do you get ones already destroyed?

I wanted people to understand the kind of wearing, the extreme exhaustion, the pain which occurs between two people who love each other in circumstances where one watches the other get tortured every day.

She said that when she walks in the forest, she will think of me, because that is where I seem the most alive.

I said I was glad. I was glad.

Dawn Allenbach said...

Dennis -- You are the one with no shame, or empathy.

Beth -- I know there's nothing I can say to help, but I do understand. I have many days when I wonder why/how my mom keeps at it, why I keep going. She had surgery on her hand yesterday, and I cried because there is no one to relieve her so she can heal without having to move me around between bed, toilet, and chair. She just wiped away my tears and said, "It's no big deal. I'm fine."

Veralidaine said...

Beth...

I understand. You know that I understand and that this breaking point is one of the few parts of your life, experience, and illness that I do understand. If you don't remember, click "sort by" in your email to find emails from me from about a year ago. You were there for me then, by some mysterious knowing of when I needed you even though I didn't reach out and tell you I needed you, you were there.

It is hard to have self worth when seeing others have experiences you can't have or enjoy. I know how it feels for every compliment to just make you angry because you can't believe it, and for every promise about the future to mean nothing because others haven't panned out. It aches to understand why it is good to feel happy for others' happiness (even if it's not happiness that you created or helped with) and yet be SO SICK of trying to feel happy for others when that happiness isn't available to you and doesn't seem like it ever will be, and maybe it won't be.

I won't tell you everything is okay, because it isn't, or that things will get better, because you have a degenerative, terminal, painful illness and "getting better" is not in the job description. But I will tell you that you mean the world to everyone who loves you and that there are many people in that category, myself included.