epiphany
I just had an epiphany on social media.
I've got cancer. We get that. I didn't know I had it this time last year, although I was by then pretty sure. After all the scans and such and my research, I'm prepared to assert that it back way back in the late 90s, 15 years or more ago. Goodness, it could be 20 years now! I got dismissed by doctor after doctor no matter what symptoms I took to them. They just kept insisting I didn't deserve anything but a pap test (always they want the pap test) and that I was hypochondriac. So I went without medical diagnosis or care till finally I got good and sick.
If I'd been examined and found holding cancer, perhaps in say 2005, they'd have used 2005 medicines, tools, and methods. The surgery I got was published in 2008. The medicine released in 2012, the radiation therapy only two years ago. I would have died, just as my uncle did, as my father in law did. I would have died "too young" but good and dead from the treatment as much as from the cancer. The surgery, for instance, removed too much material and they didn't know yet how to rebuild the pelvic void. Complications from that and complications from chemo and radiation most often killed patients then, not the actual cancer.
Instead what happened is I ramped up my self care and intensified my resolve and efforts at self care. I was sick and trying to heal myself. If I wasn't sick, or if I had competent medical care, perhaps I'd have been less focused on self care, or even abusive with my body. I sure was in my earlier years, if not as much as my peers.
So all these years I've struggled with resentment and anger over being dismissed so much by medical staff. But had they not done that, they'd have killed me. I instinctively believed they were more likely to kill me than help me, I suppose it was true. Finally the science got far enough along just in time for me, as the cancer was at last large enough to directly threaten my life.
The weird thing is, I have never really wanted to live. I have only wanted that life to be strong and independant if I must live it. Well, not even independant, just strong. The independance is caused by my inability to hold people to me. I'm often left stunned by how much others can rely on their community for even the smallest tasks and needs, even when these others may be stingy ungenerous persons treating others abusively.
Since I do not sup at the buffet of human helpfulness to such a degree, independance is vital. If I can't pick up a frying pan I can't use one. If I can't use a frying pan, I don't eat fried eggs. Likewise with pretty much all the food, if I can't prepare it, I can't eat. If I don't clean my home, I live in filth. If I don't change my sheets, they get grey and smelly. Nobody does these things for me. Nobody ever did. Nobody comes by and says "hey let's go to ___" and takes me off for a day of fun. Nor am I free to do that with anyone else that I know of. I've tried, actually, now and then. I get nothing but reasons why not. There's always some reason.
I see other people doing these things so I do not believe it's the society. I mean, there's those women with 2" long plastic fingernails covered in sparkly decorations and paint. They pay a fortune for those things, or spend entire days making them with expensive materials. So there they are living a week at a time in those dumb nails and where are they getting their food? How are they getting dressed? Tying their shoes? Scratching an itch? Who changes the tire on their car or checks the oil or fills the tank or belts the seatbelt? Who does the dishes? Scrubs the floor? changes the sheets? Some of these things I believe she could do with those nails on but not all, not without breaking them. This proves to me that she has people doing things for her. There's someone in the background. She can pass a jar to that person for opening. Ask for help with a zipper. Get something done for her. Damned if I know how.
So me, I've got Dan. Mostly he's got me, it seems, but he steps up and does things if I'm very careful how I ask. I'm as likely to be scowled at and refused but if I'm careful and stick to the right categories of requests I can turn to him. When he's home. When he isn't, then what? I need to be able to do it. Pick it up, open it, carry it, force it, fix it, figure it out.
So for me, longevity is secondary to quality. I'd rather be dead than spend another year sitting idle watching videos with a remote in my hand waiting for someone to bring me some food or water. If I had known it was permanent, like how I know my colostomy is permanent, I don't know how I'd stay sane. I was going to say "live with it" but I must remember that one doesn't simply die for wanting to. I sure cried a lot when I was forced to live like that.
I've got cancer. We get that. I didn't know I had it this time last year, although I was by then pretty sure. After all the scans and such and my research, I'm prepared to assert that it back way back in the late 90s, 15 years or more ago. Goodness, it could be 20 years now! I got dismissed by doctor after doctor no matter what symptoms I took to them. They just kept insisting I didn't deserve anything but a pap test (always they want the pap test) and that I was hypochondriac. So I went without medical diagnosis or care till finally I got good and sick.
If I'd been examined and found holding cancer, perhaps in say 2005, they'd have used 2005 medicines, tools, and methods. The surgery I got was published in 2008. The medicine released in 2012, the radiation therapy only two years ago. I would have died, just as my uncle did, as my father in law did. I would have died "too young" but good and dead from the treatment as much as from the cancer. The surgery, for instance, removed too much material and they didn't know yet how to rebuild the pelvic void. Complications from that and complications from chemo and radiation most often killed patients then, not the actual cancer.
Instead what happened is I ramped up my self care and intensified my resolve and efforts at self care. I was sick and trying to heal myself. If I wasn't sick, or if I had competent medical care, perhaps I'd have been less focused on self care, or even abusive with my body. I sure was in my earlier years, if not as much as my peers.
So all these years I've struggled with resentment and anger over being dismissed so much by medical staff. But had they not done that, they'd have killed me. I instinctively believed they were more likely to kill me than help me, I suppose it was true. Finally the science got far enough along just in time for me, as the cancer was at last large enough to directly threaten my life.
The weird thing is, I have never really wanted to live. I have only wanted that life to be strong and independant if I must live it. Well, not even independant, just strong. The independance is caused by my inability to hold people to me. I'm often left stunned by how much others can rely on their community for even the smallest tasks and needs, even when these others may be stingy ungenerous persons treating others abusively.
Since I do not sup at the buffet of human helpfulness to such a degree, independance is vital. If I can't pick up a frying pan I can't use one. If I can't use a frying pan, I don't eat fried eggs. Likewise with pretty much all the food, if I can't prepare it, I can't eat. If I don't clean my home, I live in filth. If I don't change my sheets, they get grey and smelly. Nobody does these things for me. Nobody ever did. Nobody comes by and says "hey let's go to ___" and takes me off for a day of fun. Nor am I free to do that with anyone else that I know of. I've tried, actually, now and then. I get nothing but reasons why not. There's always some reason.
I see other people doing these things so I do not believe it's the society. I mean, there's those women with 2" long plastic fingernails covered in sparkly decorations and paint. They pay a fortune for those things, or spend entire days making them with expensive materials. So there they are living a week at a time in those dumb nails and where are they getting their food? How are they getting dressed? Tying their shoes? Scratching an itch? Who changes the tire on their car or checks the oil or fills the tank or belts the seatbelt? Who does the dishes? Scrubs the floor? changes the sheets? Some of these things I believe she could do with those nails on but not all, not without breaking them. This proves to me that she has people doing things for her. There's someone in the background. She can pass a jar to that person for opening. Ask for help with a zipper. Get something done for her. Damned if I know how.
So me, I've got Dan. Mostly he's got me, it seems, but he steps up and does things if I'm very careful how I ask. I'm as likely to be scowled at and refused but if I'm careful and stick to the right categories of requests I can turn to him. When he's home. When he isn't, then what? I need to be able to do it. Pick it up, open it, carry it, force it, fix it, figure it out.
So for me, longevity is secondary to quality. I'd rather be dead than spend another year sitting idle watching videos with a remote in my hand waiting for someone to bring me some food or water. If I had known it was permanent, like how I know my colostomy is permanent, I don't know how I'd stay sane. I was going to say "live with it" but I must remember that one doesn't simply die for wanting to. I sure cried a lot when I was forced to live like that.