Posting delay due to a series of seizures, and an all around shit day.
So here is the question that has been haunting me recently, a question I thought I left behind once finding Linda: Am I human?
Surely I can’t be the only person who looks at the elaborate preparations for a simple thing like a trip a mile away and the enormous cost afterward. Look at that and then being surrounded by a world in which the greatest worry seems to be what fashion faux pas was committed by which celeb and the newest trend and wonder. Why am I so different? Why am I so separated from them? Am I even human?
Growing up I knew I wasn’t fully human. There was some complex formula which required the human spirit (Which seemed to exist more in men for reasons still too confused for this non-human), the divine spirit and the holy spirit and of course only “True Believers” go the last one. The rest were subhumans. And only adults got the last one, so as a teen, you were a proto-human, but not yet fulfilled to potential.
For the last few weeks, I have been fighting every day with various agencies: Beacon, VIHA, my GP, my landlord, Blue Cross and while many of them have demands I must do for them, none of has to do with me. It has to do with them, their liability, their caseload, their risk level, their desire for their own way, their desire to save money. That I have at least three or four agencies which pester me mercilessly including two directly involved with my care-giving and yet no one person there yet cares about what happens to ME. In VIHA, I had Edriss, who refused to do a home assessment under any reason; she was removed weeks ago by the nursing supervisor. We explained that because of my condition we needed a nurse who could respond and direct care due to those changes and so I got…..no nurse, and no nurse visit. I have a case manager who passes along the many instructions of what Beacon wants me to do THIS week, or complaints, like that a worker reported they had to wash dishes (actually a duty they are tasked for!).
Karen at Beacon has said she does not WANT a GP to list my medical conditions. Yet, due to my “change” or other language for deterioration, she wants all new policies put into place, one each week. Yet policies not determined or even seen by my GP (because Beacon can’t do email, or regular mail), as a care plan. Plus, after returning from the hospital in a mentally confused state Karen called and after being told that I was confused, mentally damaged and that Linda was my contact and held medical power of attorney, Karen, head of Victoria area of Beacon did not hang up to call Linda but remained on the line. And in a voice one uses to talk down to children (which is what made me suspicious of her and write everything down) she told me she was my friend and that she was coming on Thursday as Linda had already agreed, along with many other statements. I called Linda and asked if Karen had called her? No. I asked if she agreed to a Thursday meeting to put Karen’s NEW care plan in my care sheet? No. What do you call someone who knowing tries to bully and trick someone who is mentally confused? Who has been told repeatedly that LINDA is the person with medical power of attorney? Yet they call, these groups, every day. For liability reasons.
I told one manager today that I had put up the Epilepsy Poster from the Canadian Epilepsy Alliance for NON-medical personnel (as per a previous agreement). I told them it listed how to treat a person in a seizure. They wanted to know if it was in complete compliance with what Beacon wanted. I said, I didn’t know but it was according to the Canadian medical standards of treatment of Epilepsy, which I thought was more important than what Beacon might or might not want. Apparently not. They stopped just short of asking me to TAKE IT DOWN…..until it was reviewed. When the Epilepsy Society found out that caregivers were allowed refuse to go back to be simply because I had epilepsy they said they were contacting Beacon for “training issues.” My case manager couldn’t understand, as “the workers have a RIGHT to refuse to treat you.” I said, “And if they came back and said that they didn’t want to come back because I was black?” She said that was different because that was DISCRIMINATION. I asked if one of her co-workers had a seizure and another co-worker went to the boss and asked the person to be moved because she felt ‘uncomfortable’ being around epileptics would that happen. The manager responded, “Of course not.” I said, “According to Triumph, this is MY workplace, and according to Beacon who is allowing people to not return because I am epileptic, this is THEIR workspace, for which I am liable.”
By the end of the day I realized that I had 8 specialists, my GP, different agencies all wanting things from me except one thing: For me to have a better quality of life. Did Beacon care about my degenerating condition because they were going to volunteer extra care? No, because they want to put in a care plan that has not been vetted by either a Health Authority Nurse or my family physician. They called today to initiate a task two, saying that none of my workers could touch my medications. Except that only the doctor of a patient can initiate a task two? And they don’t want any doctors involved.
To cut all this short, I sat in the bathroom with a knife, and realized that whatever my presentation, I was “other”, I was “thing”, I was “it”, I was the client, the patient, the thing no one wanted to deal with. Linda’s work has been pressuring her again. She is not to be with me. I am a drag to her. I am quite clearly not an interest to VIHA, as I have no nurse, no dietician (though requested), and they are quick to comply with requests of an agency operating illegally (unless they have done those spot inspections they are required to do to be paid – which they haven’t for a year). Managed by a woman who bullies patients after six consecutive seizures, who lies to confused people, and refuses not only to put anything in writing but to give her last name. She wants me to get a DNR, wants me to get a doctors instruction of care, wants me to allow her to put in a care plan in MY house which I am not allowed to see, and yet, I don’t know her last name.
So I started cutting. Turns out that I was correct, the right arm has no pain sensation, it does has some pressure sensation left. I was, even though the forearm was in Reynaud’s to dig down to the blood, seven bleeders. And three on my left forearm, though not as deep, it has diminished sensation but it is still there. It was the most ‘normal’ thing my body did in the last few days; bleed from cuts (it won’t do that on my hands). It was me, and it was not my internal voices, it was all my external voices too; all these groups with “Health” or “Care” in their names who really don’t know or care about my condition.
Am I the only one who feels this way, that I have tried to be good, I have tried to do all they asked, I have tried to comply with all they want. Only now, I am tired, I am exhausted and they continue to harass me, not for my health, not to set up a safety net for ME; but to prepare and set up legal and liability safety nets for THEM, for when I die. I feel alone. I feel that there is nothing that could happen to me, and nothing I could do to myself, which would cause these very important and very busy people to give a damn. And I don’t know why that is. But even Linda can’t find amongst them, anyone other than her who cares. Or cares beyond making sure that when I choke to death due to a seizure, I am the one legally liable.
I do not know why I will not be cutting tomorrow. At least then I am on the winning side; I am back doing what I used to do when I was able bodied, and I am on the side of people who don’t give a fuck about Elizabeth McClung. Which in Victoria medical establishment is a VERY high number, even when most of them seem to draw at least part of their salary due to my existence. But as Adam Smith predicted, I am a surplus commodity, they can get many less time intensive gimps in the same area and meeting the same minimum requirements than deal with me. I am the White Elephant, I am the thing, the it. I say that because I still believe that if people really identified me as a person equal to them, they would not sit by or be distracted so easily. Only a non-human is that easy to cast aside.
I write upon my body what has already been written upon me.
1 day ago