Saturday, December 03, 2011

Beth's World: broken-ness

‘When holding a knife to your throat, it is hard to wash behind the knees while showering.’ Safety message from the brain (it thinks there isn’t enough humor blogged).

I shower because it is what I love, and cannot do. I overheat. I love hot showers.

It has been two years since limbo. And I’ve fought every day. The hero’s path in wars against the mind is murky, always silent, never mentioned but one endless battle. I only want to write the story of my life, the life of silent wars into my skin, through my throat.
Being bipolar and depression don’t disappear. They rely on medications rejected by a melting brain. The erosion of the frontal lobe barriers makes me feel like a pichinko machine with a couple dozen steel balls rattling down me. My body shakes. That is probably from my heart, the upper chambers overcompensating, but I can’t make it stop anymore than I can make the whine of steel grinding on steel wheels that shrieks in my brain stop. Linda avoids talking about travel for work, which she has to do weekly, not because I am not calm and reasonable, but because while the words my mouth speak say calm I can’t STOP my face from showing hurt, loss and most of all jealousy. Outside.

This is Pounce, my number 2 friend. In four or five days I might see Linda, and that is all for humans. The workers are all new. They avoid me.

I lost a friend last week. They don’t want to come here because I bleed when I exercise. I fall, and I bleed and I pass out. It makes her ‘uncomfortable’. The red block on the bottom is a chemical burn, and the rest are bruises from a single fall of that day. I have six or seven chemical burns, until we pull off the Fentanyl tonight, then I’ll have more. GP doubled the breakthrough pill. If I want to live, I have to go on, alone. It makes me ‘uncomfortable’ too.

Other times my mind’s emotions are like a big ole’ pinball slamming a hit on panels, knocking them down, BAM, BAM, BAM. Now, like a prism, a word can reverberate until that is all I hear, and my emotions are projected, expanded. I stare at the hole the weeping sorrow bore through me. I know that I can’t control my emotional reactions but I keep trying. I tell myself, when she reacts back, that it isn’t anyone’s fault. Is that what she tells herself too, or did she forget that I'm in here fighting and frightened? I try, for years, to not cut this story into me, when I ache for it. This time when I fall, can I stay down?

So I took a bunch of dilaudid and drank booze from the bottle. I try to put it down, but can’t. Just drop it and take the knife into the shower.

How, after two years of trying to make a string too short meet, could it not be uncomfortable? I want to talk to my grandfather. How do I catch Linda from falling? How do I stop her from being too hard, and me from being too selfish? I did what I must to get to the next week or two and it cost me my last friend. When did my body stop being my friend? Now it makes me so alien that I hallucinate from the pain: waterfalls and horses are popular, but so are auditory hallucinations of two people having a conversation (the more exhausted I am, the more these two keep me awake). How tired do I have to be to sleep through a radio only I can hear?

I stagger in the shower, Linda says she see the broken-ness.

Just because I know where everyone WANTS me to go doesn’t mean I don’t feel lost too. I am supposed to be in free fall with a SPLAT ending but it isn’t like that. It is more like being guided along ramps until, I hope, there is a kill blow up ahead. But no, it is just more paperwork.

God, wouldn't a donut be sufficient about now? Succulant? Sugar. suitable? No, just satisfying.


Baba Yaga said...

Oh my, I'm sorry. Sorry, as always, about both (all) sorts of pain. Sorry about lost friends.

Sorry it's so hard for you and Linda. 'Carer' and 'spouse' aren't roles which should belong to the same person, not at the intensity your illness imposes on you both.

It should be easier for outsiders to cope with the changes dementia brings. But your care-workers avoid you? I'm not surprised any longer, by now I'd be surprised to hear any of them did anything which resembled 'care' in any of its meanings, I just can't quite work out how that circle is squared in their minds. Perhaps they don't even notice that there is geometry involved .8-p

I'm sorry, Beth. I'd like to give you warmth (sans too much heat, of course) and comfort and time when slicing truth into the skin seemed alien, rather than necessary. Or at the very, very least, bandage your wounds up gently.

Tina Russell said...

My beloved first cat was named Pounce. He has such a special place in my heart, he was always so dignified and regal while also being so gentle and affectionate.

I’m sorry things have been so hard for you! Love and support, as always. It must be hard to have to lean on your lover and caretaker so much that you feel like she might break. I’m glad you’re getting your feelings out.

(sigh) I love hot showers too, it must suck not to have them. (hugs)

wendryn said...

I'm sorry it's so hard, and that you've lost a friend.

I don't understand why the care workers aren't trained better. That is very frustrating. I suppose it's partly because I have done care work and we had to be well trained and do whatever was needed. It makes me angry to see people not doing what they are supposed to and hurting you in the process.

I hope something eases, even if it's only for a few minutes of peace. *HUGS*

Linda McClung said...

Wow Beth. You are such a great writer - with every word you use and for all you say without using words at all. 'This is Pounce, my number 2 friend' makes me feel loneliness for you.

I was shocked and disappointed when the last person left. She had seen you every week for years and now she won't be back. It is hard for me, but so much harder for you I think. She was one of the stable things in your life. Suck!

Your metaphors of pichinko and pinball machines are so illustrative of how words and emotions affect you. Thanks for explaining it. For the most part I know you are frightened and fighting inside when I say things. But sometimes, I am ashamed to say, when I am overreacting I don't see the inside, I just see the outside and here the words.

Your shower, alcohol and pills have done a real number on your body. I was really worried about you and will be here to help you get stronger so you can do the things you want to do.

cheryl g said...

I am glad I am your friend. I wish I could be here moreso you weren't so lonely. Your description using the pachinko and pinball examples is really evocative and helps me understand better how it is for you. I love you and I am not going away.

GirlWithTheCane said...


I am worried. I wish there was something I could do.


Elizabeth McClung said...

Baba Yaga: Went into shock after sleeping, in and out of it. I don't know the day, I don't know who comes, just know that I am to pick up the wheelbarrow, always heavier than the day before. I struggle, not because I wait for a cure, or treatment - they have given up on me - but I haven't. I can't afford to walk away from my own life.

I don't want to carry it alone anymore. Never.

Tina: I have had five caregivers who were friends. All have left for various reasons. I don't even have regular workers anymore, just 'fill ins' much less someone I can go to the Y with, who will roll me over when I pass out during push-ups. The ones who have come sit as far as they can, a whole room away if possible, and the next day the agency says they ask not to come again ever. They see me in the night, in a seizure, or crying because my entire lower body has extreme frost bite that takes 90 minutes to bring back circulation - and they don't show up again. I am dying, visably, painfully and there isn't anyone who will hold my hand during the pain, just dozens who say they don't want to see it ever again.

That's just what happens. As we all die, I would hope for cancer. Not something both fast and slow like this.

Elizabeth McClung said...

Wendryn: I've lost I dunno, over a dozen friends in flesh, all family and in-laws, and most non location/internet friends. It is the ones who would get it, that I miss the most, but almost all are dead or scraping as much life as possible, because they know how valuable that is.

Linda: It is the silence, the emptiness that is the worst. I would understand if they would tell me or indicate that it is professional not personal, but they don't. All there is left is silence and wondering, "What was it? What did I do?"

I thought she cared, I thought the last one did too, and the first onne who said she would visit and never has. I believe them all, but the emptiness says otherwise.

Cheryl: I am glad you are not going away, though there must be pressure to do so. I don't know why or what it is that makes it so that no one can stay. I am as I was, only with limits that can't be solved by medication - physically, mentally, emotionally. I'm not allow to have a break down, not allowed to be depressed, not able to just say 'stop' for a while, and yet I must, I will. Except the pain, the liver, the body won't let me. My heart beats painfully, and thrusts me into consciousness.

GirlwithCane: me too.

Kita said...

oh Beth, I am so sorry for your pain your aloneness. I wish I could hold your hand, be there with you as you face your dying. I wish that aloneness would bugger off from you. You of all people do not deserve it. I know aloneness and I would not wish it on anyone.
It must be terrible for you to have a friend walk out and not return. I'm so sorry this has happened.
Much love to you and Linda. I wish I had more to give.<3

Raccoon said...

I've never thought of a donut as being "succulent."

I'm going to agree with Baba Yaga here. SO's should not be the primary caregiver. It's too easy for things to go wrong and feelings to get hurt.

Unfortunately, you have Beacon.

Enough said on that.

Kate J said...

Beth, I'm hoping this comment will actually post on to your blog... the last several I've sent have just generated 'error' messages.
It just seems to get worse and worse for you... I'm so very sorry. And to lose a friend or regular carer must make things so much worse, I know. And I do know because I used to be a regular carer and 'buddy' for someone, one of about 7 or 8, and ended up as one of only two when he died. I saw how he felt as each one left. Mostly they didn't even say they were going just didn't turn up.
I've finally got some part-time and minimum wage work... sent you an Amazon e-voucher, a small one, hope it reached you OK.
Still here...
love and peace

canada coupons said...

Look on the bright side. You have us :)

Lorna, Bob and Liam said...

Oh, Beth. All I can do at the moment is read, and listen, and care.

Much love,

Lorna, Bob and Liam

SharonMV said...

Dear Beth,
I'm sorry that another friend left you. Who knows, maybe it is the ones who stay a while & then leave because they have come to care about you & it becomes too much for them. It may be true, but I say F*ck them! Suck it up & be a true friend, surely what is happening hurts the sick person more than it does you. They don't know what the loneliness & isolation are like, not to mention all the other pain & sickness. And not being able to take care of one's own needs and to be left alone - how difficult that must be. I love you Beth, I wish i could be there & hold your hand.
I am so lucky because my number 2 friend is Chloe, my cat. I see Dennis every day. I don't see anyone else ( except medical personel) for months at a time. I see my PCP doc every month or 2, so I guess she's my number 3 person,.
I must go now, cause it's getting dark & we have run out of light bulbs , so the bulb in theis room has been pillaged for my room.

Love to you & Linda

PS Cheryll, I am thankful for you, you are one of my heroes.


Neil said...

Hello Pounce; nice to meet you. Please hug Beth for me.

Beth, your description of what the care workers see sounds like a horror movie; but when you go ('cause I won't) to a horror movie, you know it's not real. And your horror IS real - far, FAR too real. I can understand some people not being able to handle your daily reality. However, what DO they expect when they go to work for Beacon? Some "little old lady" making tea for them as they arrive, and pleasant chat about the patient's recent visit to grandchildren in the Netherlands?

I'm so sorry that I cannot be there in person for you, my dears; but that lottery ticket just hasn't paid off yet, and work is about as productive as Linda's. So depressing...

Love and zen hugs to you, Linda and the hero Cheryl,