Vulnerability

I have been in burn out for a long time (months); I recognize the signs because I have tried to support others who are or were burnt out. I made up five official stages so people could recognize how far they felt they were. But the truth is there are seven, it is just no one at seven lives very long. I am at stage seven.

During burn-out if you are daily abused from various sources, like I am, if you are in pain constantly, unending pain in every part of your body then after months of six, you enter stage seven. At seven, unlike leaving a situation, if you cannot, if you have tried to be ‘good’ and gotten even more abuse and pain then there is only insanity, death or both. I took a call earlier from my VIHA official nurse. She wanted to know the results from the hospital visit. When I told her I was terminal, she laughed and made a joke.

That is the sole nurse in charge of all of my care, my care plans, including if I get palliative care.
Today my Grandmother was interned. It hurt inside more than I anticipated. First because I did not remember what day it was: Linda came home in a suit and I asked her what client she had and she said she had come from the service. She had gone into able bodied mode, with no time for someone whose memory might only be a day or two at best, left without telling me, ‘stay up or be left behind’.

I had decided not to go, earlier, due to the hatred of that clan of four children; one of which had refused to be family recently (my father). But I still would have liked to know and was waiting to hear if the memorial was wheelchair accessible. Linda told me at the service another of the four children approached her, with tears, told her that she read my blog and loved me…..but that she couldn’t do ‘family’ now, and thus couldn’t see me, call me, contact me, email me (ah, yes, this ‘love’ I know about). Read my blog but couldn’t email me, as none of my family (all living here) have, or contacted me for the years since I came out.

I did not go because then the focus would not be on my grandmother, but on me, as one uncle said he would walk out of anything I attended. But she was MY grandmother too. My memories and my relationship with her too. She was a hard Matriarch, and had to be to feed four children from the 40’s onward, in the 50’s when her husband left her. One of the earliest stories my father told, or rather tried to fool me with at an early age of four or five was how he mowed the lawn for the promise of a new drink, “Adam’s Aid” and in the end, he was given a glass of water. There wasn’t a follow up of a treat, just that she had gotten him to do chores for water. Linda said that was Nanna all over. She was abrupt, and showed her love in unusual ways, like pretending that she had baked cookies for herself and was just giving some to you. She also would greet you with a note of chores in the mail box and a locked door, with the knowledge that once the chores were done, the door would open. They were things she was too short or weak to do, and she was too proud to have to ask around for help. She was tough and so her family is cold and tough and only had a memorial service because she had paid for it in advance.

But I wasn’t there. I saw my grandmother and talked to her shortly before she died; she was still full of a yearning for travel. Every time I see a National Geographic or a board game about obscure information, that is where you will be; reading every little card set up in a museum (it would take hours to do two rooms!). You were hard, and scared me a little as a child, but I love you. Goodbye.
I have spent the lasts few nights at home talking about not being able to take the pain anymore. I cannot cope with the levels of physical pain. And in level seven of burn out, if you only EVER get abusive and painful responses regardless if you are assertive, compliant, or say nothing at all, then eventually you believe that every single thing you do will only cause you more pain. And that was where I was, day after day of abusive phone calls. Nights of moans and sleep between hours of being awake praying for pain pills to work. We wonder now if that is the half digested stuff along with food that comes out in my feces….the pain pills.
Today I found out that my walk-in clinic, my so called GP, had cancelled the waiting list spot I had for the pain clinic two weeks ago. I had been waiting, gritting my teeth through each day for nothing. The recommendation to the specialist had been cancelled and now, until I get a new GP, there is no way to get another recommendation. There is just the pain.

I was also told my entire medical records were there, boxed and I was supposed to pick them up by day’s end. That while it was now a walk-in clinic that did specialist referrals, tests, MRI referrals and other things for every other person: for me, the only treatment I was allowed was pill renewals. That is it. Official sub-human. And this was decided when I wasn’t even there – maybe when my ER results had gone there? Gosh, even more complicated….dump her.

So when Linda came home, her AB speed and very abusive. She spend another day taking pains to correct me, to read my personal email over my shoulder and correcting my mistakes. So much did her mother verbally abuse her that perhaps she can’t stand the feeling of NOT being right anymore, so she shows me, since then, every little time I am wrong (and thus makes me feel that hated feeling she is trying to escape). She had been sent pictures of my grandmothers funeral already by my parents. I had not. It was a slap on the face, so I gave myself one. She corrected me, told me I did it wrong, so I gave another. It turned into a flurry of verbal and physical abuse, her holding and restraining me while shouting that she would do my worst fear because she felt out of control and needed to control….she MUST control, things must be in CONTROL!!!

And for me, after she scratched me, without remorse; I knew that even to share as I did the night before the ways during the day I had been dreaming, fantasizing of dying to which she told me to be quiet and count so she could sleep, that she did not WANT to hear me. She did not see me as a partner, as an equal. So I wanted to show her how that felt. How I felt when even the partner I thought I had used the information of burn-out to abuse me. It isn’t easy to make both arms bleed freely when you don’t have much more than an 1/8 th of an inch of nails or less but if you are insane and in a frenzy and don’t mind losing a nail, you can do it. I can. I did.

Then I started screaming, because the emotional pain inside was so much.

I am better now. She is better.
I asked her if she wanted to be with me now. 'Yes,' she said, 'I want to go to Hawaii with you and ....'

I cut her off. “No, now. Do you want the me of now? Are you proud of the me of now?”

She was confused.

I took her hand. “Linda Joy, do you take me as your wife?”

Finally, for the first time, she cried. She got down on one knee. “Elizabeth Katherine, do you take me as YOUR wife.”

“I do,” I said, “In sickness and in health.”

“Yes!” she said and buried her head in my lap. I stroked her hair..
“For better or for worse.” I said and she nodded yes and I held her, and slowly stoked her. If we had the now, if we were a couple, not just a caregiver/carer then we could sort the rest out. Maybe heal the wounds we gouged in each other, and ourselves.
The pain in the body goes on, and it will go on, until I can get a doctor to help me, or buy drugs on the street corner. The doctor who would work to find a solution was at the walk-in clinic, so that seems no more options. Cheryl is coming tomorrow and says she has some Manga, which right now is all I have for pain control. That and art books from Akadot. I like to look at the pictures. I like the warm feeling Manga brings.

I have been in pain for so long I can’t remember what it is like without it. Linda is going on respite for a week. I think she is burnt out as a carer. Or needs to recover from HER mother’s mind fuck in the prairies. I want to know when I get a respite, when I will stop thinking of pouring boiling water over me just to see what happens, if anything. Or throwing myself out of the fourth floor window to see if I get treatment for that, or if they tell me to see a GP. Or if I die. Cut it, smash it, break it: limbs, fingers, my body...what difference will it make. I want to live, but I am so tired of the pain. One person today, from VIHA, as I made a complaint against the RN who laughed at my being terminal, she said, “It sounds like you need someone who actually cares about your care.”

Yeah. Plus the head of the US specialist clinic said I needed better pain control then, and soon. That was five months ago.