Want to hear a good joke?
My medications cost more than we earn. We don’t quite earn enough for rent and food. Because we are 58% below the poverty line instead of 60% I cannot get welfare. I don’t want welfare, I NEED disability assistance. But I can only apply for disability assistance once I am approved for welfare. I waited for two weeks to get a phone call which told me I could not get welfare however in two more weeks I am, on special grounds, allowed to SEE a welfare officer.
If I HAD disability assistance, our income would be more than it is now. But I can’t get disability assistance because I have to be on welfare, and if you have the amount people on disability assistance get, you can’t GET welfare.
My parents went on a cruise last week while this was going on. It is their 28th vacation in the last three years. No, not retired. Just inheritance, which bought a $500,000 condo, split level for them to live in.
In two weeks, I will try to apply for disability assistance but that will take……eight weeks to process. I don’t have that many pills. I don’t have that many pain pills. But then, since the medication to keep my heart beating, the medication to keep my TIA’s minimized, my seizures to 10 a week or less. So I have to choose between housing or screaming.
Linda talked to the Welfare officer. If I am placed in a full care home, that qualifies as ‘involuntary separation’ which would nullify our marriage for welfare terms and then, once I am on the machines and getting 24 hour care…..I could get that appointment in two weeks to show up at THEIR office to fill out the forms for disability. Of course, the way that ALL disabilities are treated the same, from extreme ones in hospital to homebound mental illness, fibro, terminal illness, Lupus, lower back pain – it is actually discrimination and against the British Columbia law and human rights code.
I tried to explain the problems with this inflexibility to a supervising manager but, having been to a specialist that day, I was tired and my slurring was significant. I simply could not make myself understood. The disability section of the office has no way to be contacted except through welfare, and they have to call YOU. So if you can’t use a phone or they can’t understand you – as was in this case, I was left trying over and over to say my name, “Hello, this is Elizabeth McClung” until 4:30 came and they hung up on me, because it was time to go home.
The day before I found from Linda, who had been invited out to lunch with my biological parents, who use the phrase ‘dead to her’ when talking about me. It turns out that my parents have left town, they bought a water front condo in another city, and sold the other one, which is why they wouldn’t leave us the key to it when they went on vacations. Why? Well, they bought it months ago. Like the new van.
Linda meets once a month with the other excluded managers who were terminated as soon as they handed in year end paperwork and one, my only other relative who speaks to me, got a job far in the interior. It was his goodbye. I was too ill to be moved. He didn’t come by. But now, not a single person left besides Linda in this town (of about 35 relatives) who will speak to me, who would care if I live or died.
My VIHA manager doesn’t want me in a care home. She wants a doctor to declare me palliative and there have been meetings with VIHA, and others I did not know about and the consensus was…I was going to die in 1-4 months. With Palliative I get to stay married, until I die, we just have no medicine or food. I found this out on Thursday. Linda however says that she believes that I will make it for 6 months: she is an optimist.
I would not be the first person to die 'for Canada', first every hemophiliac and blood transfusion/plasma need up to 1989 was infected with HIV/Hep C, B and died. They all died because Canada bought plasma from a few prisons which were condemned by the Center of disease control in the USA and mixed it with ALL the plasma in Canada. Then all the patients with Lymes disease died until 2004 or so because there IS no Lymes disease in Canada. Now patients with rare diseases and those needing IVIG, transplants or any operation costing...well, money, since post Olympics, this province doesn't have any. I would have a better and longer chance of living in the US (oh hell would I have bills, but I would have a doctor for more than a year out of three!), UK, EU, Cuba, and many other countries. Canada is very good at throwing bodies under the wheels of 'the common good' and I think I may be used as traction soon.
My boxing coach asked Linda to let him know once I go into hospital. No one told him, he just can see the changes ‘they are too fast’ or as the specialist said today, “the kind you see with congestive heart failure” before telling me he wasn’t going to treat me as I don’t fit his parameters.
My mother approached Linda with a box of my early writing, and other mementos, they have already given away or sold most gifts I gave them, and they offered to sell (we don’t ‘get’ furniture from my parents we pay for it, like $450 for a table, etc, the same way they can charge a child rent and did). I realized that my parents were starting over. One of the first memories of arriving was Linda and I sitting behind my parents and a woman coming up to my mother from her church and saying, “Was that your daughter Elizabeth McClung I read about in the Globe and Mail? (Canada’s National Paper) Her book looked really good.”
My mother said, with me sitting behind her, “No, no, I think you are mistaken, that isn’t my daughter, that’s probably another Elizabeth McClung altogether….” The woman insisted she was sure it was, well, ME, but no, no no, my mother insisted, and she never praised the book or read it.
I realized that by the time I die, there will be no evidence that I lived at all, at least, not at my parents. They attended no games of mine in high school, my first degree I had posted to me, my last, the doctorate, I sat alone on the floor, with Linda watching. My mother had come over for Linda’s graduation earlier. No pictures of us over the last few years, no meeting after our trip to Japan, or Hawaii. Invitations to come over once a week turned down, to meet at restaurants once a month always cancelled. No pictures of me fencing, never went to a single competition. No picture of me performing, don't have the album I am on, never went to an single orchestra performace I gave.
No one, no earthly power, can stop MY love. I realized people can TRY to crush love, but they can only refuse to accept it. I love my parents. I love my relatives. They can move away, they can stay away, or act like odd rogue KGB agents. Their actions can be hurtful. Their actions can be hateful. “I hope everyone has a friend like you,” my mother told me, “so they can experience how painful it is.” But I love them, and sure it hurts when they say and do what they do, but I love them. I love my whole family.
“Don’t you get it” the specialist said, “if you have a disease of the central autonomic system, you’d be dead.”
I worry that I won’t be able to get enough postcards out to everyone before I go.
I cry every day, and have since Wednesday. As Sister Rosette (a fighting nun exorcist!) from the series Chrono Crusade who bound her soul to another so that they might live, at the end of final battle, the clock that holds her life is broken. They don’t tell her that it could be a day or a couple months. She is in bed, and says, “I spent my life running, fighting, now I am still but I fight, I fight dying.”
Whatever time a person has isn’t really enough, and to end in pain, the pain, oh, the things that can be borne, must be borne. No, I never really had support, as my father said to me as a teen, “You could have had a college fund, but we traveled instead.” It was his decision and why I worked full time and lived on yougert (because it cost .35 cents) and slept on concrete. My intellect scared/scares most and so almost every university advisor was glad not to see my questions anymore; though a few professors missed me – the ones who liked a challenge. I wish I could see them again.
I may not have been the child my parents wanted, the unplanned child, the ‘extra’ child, but I was still here. And my grandfather became my father to me; the one who loved me, who listened, who accepted my fears without commanding me to dispell them as Satan in my mind. His last words to me were words of love. I only had one grandfather, but he taught me how to use a chainsaw, start fires and steal government equipment while still a ‘tween’ – that’s cool. And how to live with the woods, to see the wildlife, the trees, the paths of people before. But also I think he taught me that love means that you accept the limitations a person has: I sent him books, as he loved books. Books on cruise ships, then as his eyes went, books on pictures from his home, pictures of cruise ships, of boats, of the history of BC. Of whatever would make him happy, even if it was for a second, postcards of cruise ships he had traveled on. I don’t know if he ever said anything about the books, or the postcards, but when you love someone, that doesn’t matter. Just knowing that he would be somewhere turning the pages and humming that odd tuneless song he hummed when happy was enough. He died humming, after humming his way in a coma. Whether he was watching ships, or watching fires, or setting them, or setting me to chop wood, or turning hanging a picture into a 5 hour job with his hunting though jars of screws collected over the years, I don’t know, but he was happy.
So I all I need is to find a GP who will sign me off for palliative care, and the VIHA and care people are behind it. It seems everyone agrees it is time for me to go except me.
Yeah, it might hurt to breath most days, lying on the bed, sucking air at the end of the day, trying to get the strength for one more heave of the ribs. I lived life, traveled a lot of continents (4 at least), and asked directions in at least 25 languages (15 verbs, 30 nouns and a lot of hand guestures!), I’ve been homeless at least three times I can remember, a vagabond twice, stayed in picker shacks twice, got degrees and classes and qualifications and awards in a lot of things. I always tried my hardest, I didn’t lie and I didn’t allow bullies….to bully people when I was there. I used to be sad because I had almost finished my ‘great work’ which would change the way people see themselves, the meta-popular culture which transcends different cultures (why I always worked on islands, to study how culture is when unchanging), though books.
But right now, Linda is hurting, Linda is worried about taking care of me, and keeping us housed and I am the person to make sure Linda does not hurt. And I can’t. I don’t care about the meta project. I hurt when people are mean, and with email, people can be mean almost every day. And no, maybe it isn’t the life I imagined, and yes, maybe I would have made a great mother, but that just isn’t what is. Struggling to breathe, to move, to talk at times, that is what is. Finding out we will be alone, that Linda will have to take care of me alone unless I move into a bed where I will shortly die (my grandmother moved into a home with care and died in under two weeks, not a single time was her oxygen connected correctly or the bed inclined so she could breathe: she was incompetently cared….to death), or maybe if I have one last burst to find a doctor who can say, “Yes, she will die in a few months.”
It has been a long day. Maybe a few days, but they all seem long too.
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