Lying takes less energy than telling the truth. The truth was that I should have died, not that I could have, but should have for three weeks, I did the things needed to function, but to do anything from drink to transfer required assistance. Then, for no reason, I stabilized again. It is easier to tell people I went to the hospital and cover the thousands of minutes of pain and coughing, seizures, brain damage, blood for eleven days, coming out of me, then pools of blood on the floor, a cup, a half cup of blood a day. This is what dying is, it isn’t having the big showdown, Clint Eastwood Style. Sometimes, I remember why I fight, sometimes I just fight to keep going because it is a habit, and sometimes I beg for it to end.
I’ve asked Linda to implode my death. Let there be no tears, no crying, no eulogy, no talk of what I did. I died alone, gasping, screaming inside my brain. That is how it will be, how it has to be. The closer it comes, the more I live in it, the more I can’t imagine a life with me now up at university, Linda and I on hikes, travels – that other life. Dying is a lot harder than living, and living while you die is harder than both. But a person never knows that unless they see it every day or they live it. I think of those who are so busy, and they can barely get in a movie, and I think of the day I wasn’t breathing into my lungs, or only one lung, and I drowned for two days and more. It doesn’t it make me any different to anyone else dying, I just don’t have the aspects of joking, only lying and spending the energy to keep me conscious – the last blog I slept 17 hours after writing. It was all to say, ‘don’t worry’ everything is okay. But of course it isn’t – somehow I’ve been co-opted in the social lying and hiding how bad it is.
How bad it is: dislocations aren't unique, but then try juggling with them, while you have a 103+ fever and that is what it takes to drink, eat and shit, oh and breath regularly - beyond that, having blood pour off of me, or falling over unconscious isn't unusual, or even annoying, it just is - the cost of moving from here to there. The worry is to get the blood before it causes marks.
Saturday, March 19, 2011
Tuesday, March 8, 2011
Burn it down
My heart was erratic for five of the eight hours I was up. I slept 5 hours with a 80 minute nap yesterday and pushed myself for 12 hours without rest. After just under seven hours, my body is shaking, hands unable to grab or hold onto things. I end up, due to waking in a house with a worker who doesn’t know me and is bored, plus phone calls, talk for almost three hours before I can eat. I need days of absolute rest, but that is unlikely to happen tomorrow, and the next day is a specialist, then boxing, then probably a follow-up GP visit on the specialist report, which will say I have less eyesight than before, but that there is nothing they can do.
No matter what disease they want to classify me in, there are all listed as ‘no current treatment’. My pain meds have been doubled twice in 12 weeks, which puts me in the bracket where if they do that again, I will be out of the limits of Fentynal Patches and the breakthrough drugs, though I am in pain every day, I have yet to see. But then, since L. told me 4 days ago that we would not have fresh food, or milk, bread for the last seven days until the UI, just have to learn to ‘deal’.
This isn’t about quality of life anymore, but sort of gambling: can a job be found before we can’t afford the rent? Can I handle going from care, to having no care, and no stability after I have tried to kill myself for unknown number of weeks, where not one single day is the same, or yet at rest. I literally do not have the capacity as yet to lie down and have a bed day, as between messages, emergencies, phone calls to deal with (it could be a shortlisting, I can’t afford NOT to pick it up), I am pushed to a point beyond which I have been pushed to before, and my body is starting to show signs of that. Incontinence, that was just the first sign it seems, locked-in syndrome, TIA’s, and pain.
Today the worker (or the person here, since mostly I entertained them) wanted to know why a broad channel in the T region indicates nerve function loss. I said that as the arms move and lose signals they have to send more and more, and that makes the spine itself hot. I said she could put her hand on my spine and see. She took her knuckles and pushed and dug into my spine, which if I had not had experience with overwhelming pain, would have made me scream. As it was, I couldn’t see, and blinked tears and then suggested, as she continued to root into my spine that she ‘FEEL’ it and see if it was hotter.
“Gee, that’s amazing.” She told me, finally stopping her assault on me like some hyperactive four year old. Yes, glad my neural destruction is able to be used as party tricks.
No matter what disease they want to classify me in, there are all listed as ‘no current treatment’. My pain meds have been doubled twice in 12 weeks, which puts me in the bracket where if they do that again, I will be out of the limits of Fentynal Patches and the breakthrough drugs, though I am in pain every day, I have yet to see. But then, since L. told me 4 days ago that we would not have fresh food, or milk, bread for the last seven days until the UI, just have to learn to ‘deal’.
This isn’t about quality of life anymore, but sort of gambling: can a job be found before we can’t afford the rent? Can I handle going from care, to having no care, and no stability after I have tried to kill myself for unknown number of weeks, where not one single day is the same, or yet at rest. I literally do not have the capacity as yet to lie down and have a bed day, as between messages, emergencies, phone calls to deal with (it could be a shortlisting, I can’t afford NOT to pick it up), I am pushed to a point beyond which I have been pushed to before, and my body is starting to show signs of that. Incontinence, that was just the first sign it seems, locked-in syndrome, TIA’s, and pain.
Today the worker (or the person here, since mostly I entertained them) wanted to know why a broad channel in the T region indicates nerve function loss. I said that as the arms move and lose signals they have to send more and more, and that makes the spine itself hot. I said she could put her hand on my spine and see. She took her knuckles and pushed and dug into my spine, which if I had not had experience with overwhelming pain, would have made me scream. As it was, I couldn’t see, and blinked tears and then suggested, as she continued to root into my spine that she ‘FEEL’ it and see if it was hotter.
“Gee, that’s amazing.” She told me, finally stopping her assault on me like some hyperactive four year old. Yes, glad my neural destruction is able to be used as party tricks.
Thursday, February 24, 2011
Changes
My left lung is now compromised. We have spirometer – which you put your mouth around and blow as hard and sharp as you can. I should be about 580-600. With both lungs I am 340-360. However, without warning, my left lung will simply stop, the stethoscope hears breathing going in and out of the right lung, but silence on the left. The spirometer yesterday read 140-160 on 4 tries.
It feels like drowning. I woke up two nights ago from lack of oxygen, and I felt like I was under the ice, I was trying so hard to breathe, and yet, I was so weak I couldn’t move, I wanted to breath in water or whatever there was, I didn’t care. Each second felt like a little bomb creating an explosion inside my ribs, there was a high pitched whine in my mind, as my lungs wanted to erupt out of my chest. Linda heard something, and raised the bed with the electric controls, and I could breath with one lung. I could see red out of my one eye, gasping, gulping, starving still for air, for breathing.
I have now no function for over a week from my left eye. Also, my left leg, the quad has a giant depression in it where another muscle has died and withered. I guess it was doing it this week but I hadn’t noticed, until it wasn’t there. I have had a nose bleed for seven days now.
The GP wouldn’t listen to the lungs, but he increased the pain patches, doubled them and gave me a new higher drug as a breakthrough drug. The GP has doubled my pain killers every 6-7 weeks, but tells me I am not palliative. He deals with cancer patients. I am not his type of palliative, and I don’t know what that means – as it seems to mean 3 weeks to 3 months here. On some days, when I shivered and had to have a blanket at night, being in shock for two days, unable to speak during the day for hours, passing out and having 5-10 seizures a day, a blood burst in my right eye, the one I can see out of (Linda and Cheryl noticed it), a high pressure blood burst in the eye, the other eye not functional, and so many changes, my lung gone, then back again after three days, then gone again off and on. I haven’t had a blood pressure reading that is ‘normal’ for my abnormal reading of normal in over two weeks – my veins are not opening. One day recently my RESTING heart rate was 112-123 beats per minute for the entire day. My body shook, hour after hour, while I took heart pills which did nothing, slowed nothing. Ande most days my diastolic and systolic are so close, I wonder how much I am bruising and bursting inside. The next day, my resting heart rate was 60 for the day, which now is so low, I lost consciousness for several hours, and stopped breathing. Linda had to breath for me with the ambi-bag for three straight days, and for an extended time. Then caffine, and artificial heart stimulants to keep me conscious.
Linda said to the doctor Tuesday that when she breathed for me, it was like the diaphragm couldn’t push the lungs anymore. She was trying to get it to reset. Also, while unconscious, I wasn’t always exhaling, so she almost caused a burst in my lungs. We are going to go to a respirologist but worried that I will get a b-pap for sleeping. “What is the lesser evil?” Linda asks. “That it might keep you going while your lung quits or that it could rupture your lungs if it doesn’t have a pressure reader for the air already in there, as you don’t breath out?”
She says what I think and worry about but don't say. When all this happens within a week or two, it seems like so much lost, so much deline so quickly. But is it? I can’t tell time well. For living, it is hard to think of a being here a year, much less two. Linda, who said at Xmas that she was planning for me to live until June/July and hoping for longer, now says she hopes for April. And the GP doesn’t want to talk about it, because he doesn’t know what to do or who to refer me to. He is sending me to another neuro eye doctor who will tell me what the other two eye doctors told me – your eye is slow on the left side, it is sending garbage, there is nothing we can do to stop this. For the rest, he ignores and gives pain meds. Ironically the pain meds have a warning saying they can depress lung function.
I got frostbite on my hands, inside our apartment. We are back to living inside the fortress of life, trying to stay alive. Linda is heroic, but she needs to find a job, as Unemployment is running out – yet she is depending on being able to hear me if I have problems breathing – can she do this, all the care she gives at night and day and work full time too? In order to stay, there is no other option.
Doctors are still stuck on a diagnosis. We don’t want a diagnosis, as Linda says, we want a PROGNOSIS, and some pallative help, which would be nurses along with care givers, respites for Linda. I want her to live a life she can live. The other day, we talked and went out on an impromptu date. It was ‘a good time’ – we know there isn’t much time. Maybe more if that happens, it will mean more dates, but each time we can talk, it is precious.
Yesterday we went over post death, memorial services or not (NOT), and how to deal with things, where exactly to bury my ashes. I want her to be with family, to go back home for a while, after this, then come back new. The government, if she gets a government job allows a single day for grief of a spouse. A single day off if you are a manager – 24 hours and then back to work. They might, due to our lesbian relationship be a ‘close but not blood relative’- which only gets a half day.
I am losing so much so quickly. My arm, trying to use my mouse, I strained my shoulder, almost dislocating my shoulder and scapula, just from the weight of my arm. The whole shoulder and back, is bruised and sore.
I am out of ideas on how to get things back to what they were.
I still want to do a 5K race, but it is snowing.
It feels like drowning. I woke up two nights ago from lack of oxygen, and I felt like I was under the ice, I was trying so hard to breathe, and yet, I was so weak I couldn’t move, I wanted to breath in water or whatever there was, I didn’t care. Each second felt like a little bomb creating an explosion inside my ribs, there was a high pitched whine in my mind, as my lungs wanted to erupt out of my chest. Linda heard something, and raised the bed with the electric controls, and I could breath with one lung. I could see red out of my one eye, gasping, gulping, starving still for air, for breathing.
I have now no function for over a week from my left eye. Also, my left leg, the quad has a giant depression in it where another muscle has died and withered. I guess it was doing it this week but I hadn’t noticed, until it wasn’t there. I have had a nose bleed for seven days now.
The GP wouldn’t listen to the lungs, but he increased the pain patches, doubled them and gave me a new higher drug as a breakthrough drug. The GP has doubled my pain killers every 6-7 weeks, but tells me I am not palliative. He deals with cancer patients. I am not his type of palliative, and I don’t know what that means – as it seems to mean 3 weeks to 3 months here. On some days, when I shivered and had to have a blanket at night, being in shock for two days, unable to speak during the day for hours, passing out and having 5-10 seizures a day, a blood burst in my right eye, the one I can see out of (Linda and Cheryl noticed it), a high pressure blood burst in the eye, the other eye not functional, and so many changes, my lung gone, then back again after three days, then gone again off and on. I haven’t had a blood pressure reading that is ‘normal’ for my abnormal reading of normal in over two weeks – my veins are not opening. One day recently my RESTING heart rate was 112-123 beats per minute for the entire day. My body shook, hour after hour, while I took heart pills which did nothing, slowed nothing. Ande most days my diastolic and systolic are so close, I wonder how much I am bruising and bursting inside. The next day, my resting heart rate was 60 for the day, which now is so low, I lost consciousness for several hours, and stopped breathing. Linda had to breath for me with the ambi-bag for three straight days, and for an extended time. Then caffine, and artificial heart stimulants to keep me conscious.
Linda said to the doctor Tuesday that when she breathed for me, it was like the diaphragm couldn’t push the lungs anymore. She was trying to get it to reset. Also, while unconscious, I wasn’t always exhaling, so she almost caused a burst in my lungs. We are going to go to a respirologist but worried that I will get a b-pap for sleeping. “What is the lesser evil?” Linda asks. “That it might keep you going while your lung quits or that it could rupture your lungs if it doesn’t have a pressure reader for the air already in there, as you don’t breath out?”
She says what I think and worry about but don't say. When all this happens within a week or two, it seems like so much lost, so much deline so quickly. But is it? I can’t tell time well. For living, it is hard to think of a being here a year, much less two. Linda, who said at Xmas that she was planning for me to live until June/July and hoping for longer, now says she hopes for April. And the GP doesn’t want to talk about it, because he doesn’t know what to do or who to refer me to. He is sending me to another neuro eye doctor who will tell me what the other two eye doctors told me – your eye is slow on the left side, it is sending garbage, there is nothing we can do to stop this. For the rest, he ignores and gives pain meds. Ironically the pain meds have a warning saying they can depress lung function.
I got frostbite on my hands, inside our apartment. We are back to living inside the fortress of life, trying to stay alive. Linda is heroic, but she needs to find a job, as Unemployment is running out – yet she is depending on being able to hear me if I have problems breathing – can she do this, all the care she gives at night and day and work full time too? In order to stay, there is no other option.
Doctors are still stuck on a diagnosis. We don’t want a diagnosis, as Linda says, we want a PROGNOSIS, and some pallative help, which would be nurses along with care givers, respites for Linda. I want her to live a life she can live. The other day, we talked and went out on an impromptu date. It was ‘a good time’ – we know there isn’t much time. Maybe more if that happens, it will mean more dates, but each time we can talk, it is precious.
Yesterday we went over post death, memorial services or not (NOT), and how to deal with things, where exactly to bury my ashes. I want her to be with family, to go back home for a while, after this, then come back new. The government, if she gets a government job allows a single day for grief of a spouse. A single day off if you are a manager – 24 hours and then back to work. They might, due to our lesbian relationship be a ‘close but not blood relative’- which only gets a half day.
I am losing so much so quickly. My arm, trying to use my mouse, I strained my shoulder, almost dislocating my shoulder and scapula, just from the weight of my arm. The whole shoulder and back, is bruised and sore.
I am out of ideas on how to get things back to what they were.
I still want to do a 5K race, but it is snowing.
Wednesday, February 16, 2011
Why I can't blog here, and haven't been, or anywhere
A hellish two days, but no possibility of talking about it. I don’t know how to make this a safe space, I don’t know what people will do to get that I happen to know around 400 people and so when I talk about people leaving or people hurting me, I am NOT talking about them. And I can’t send them the emails I get because of confidentiality, of course, I could just name the people, or say like G_____ did this or R_____ did this (now people with letters G and R are going to commment here).
So, do we have comments from people about mortality, or sharing personal experiences of themseleves. No! And why should they when they see the hammering I get, how it is about the experiencing of someone having body system failure at fairly rapid speed accompanied with pain and yet no one can think of anyone in their life who had died, at all – amazing, all the people and not a single death in the family, not a single person with a life shortening disease. Because there IS no support group for saying the kind of things that need to be said, how you hang between the two demands, one where you are evaluated on how your disease is affecting you (of course, why involve you in this, you wouldn’t have any idea, right?) and the second is demanding that you keep up your tasks which you have asked for months/years to be taken off of you because you recognize that the disease is making it hard to impossible to be responsible for it. So blamed for one, blamed for the other and involved in neither, oh what a joy.
Right, I pissed, I’m angry. Of course being in huge pain doesn’t help that, but then someone will say ‘It’s the pain talking’ – no idiot, it isn’t, because pain doesn’t talk, humans do, pain just happens to turn an irritation into a flaming rant.
Read the rules on comments, and when you feel like doing the ‘don’t’ section, slap yourself and ask, “How are people going to view this comment in a year? Is it going to help someone else who is dying? Or is it going to make them think, geez, she can’t say anything without getting someone on her back, why the hell would I even try?
So, do we have comments from people about mortality, or sharing personal experiences of themseleves. No! And why should they when they see the hammering I get, how it is about the experiencing of someone having body system failure at fairly rapid speed accompanied with pain and yet no one can think of anyone in their life who had died, at all – amazing, all the people and not a single death in the family, not a single person with a life shortening disease. Because there IS no support group for saying the kind of things that need to be said, how you hang between the two demands, one where you are evaluated on how your disease is affecting you (of course, why involve you in this, you wouldn’t have any idea, right?) and the second is demanding that you keep up your tasks which you have asked for months/years to be taken off of you because you recognize that the disease is making it hard to impossible to be responsible for it. So blamed for one, blamed for the other and involved in neither, oh what a joy.
Right, I pissed, I’m angry. Of course being in huge pain doesn’t help that, but then someone will say ‘It’s the pain talking’ – no idiot, it isn’t, because pain doesn’t talk, humans do, pain just happens to turn an irritation into a flaming rant.
Read the rules on comments, and when you feel like doing the ‘don’t’ section, slap yourself and ask, “How are people going to view this comment in a year? Is it going to help someone else who is dying? Or is it going to make them think, geez, she can’t say anything without getting someone on her back, why the hell would I even try?
Sunday, February 13, 2011
Who waits for thee
Who is left waiting for this this gal? People like a winner, or an against the odds, and I was funny and informative and so disability girl was okay, and so was ‘action’ girl who had a bunch of knitter fans and went places and took pictures, learning about knitting though my hands were destroyed. Because they were my friends, and that is what friends do, learn about what the other person likes. I liked taking pictures of local fairs, and hoped that the people at the local fairs did better because I told people they did jelly for diabetics.
Now I am dying girl. Linda says it, Cheryl too. Mostly, it is different, and while we got to know each other in ‘doing’, I can’t be that person, and don’t remember some of what we did. So now it is just ‘being’. I don't have a lot of knitting friends or action friends, or 'being' people. Luckily survival keeps me busy.
I am showered and ready to sleep, to get up in the morning and take off and see something. Three days of planning (and 51 postcards done) to get outside. Now, every trip and adventure means I could end up in the hospital. I told Linda that I didn’t understand why, when I worked and worked until I passed out at boxing, I didn’t wake up in the hospital.
“Because I was over you and I told them not to.” She breathed for me, she told them not to, and so, by the time I awoke, it was empty. As a caretaker said, “Hospitals are for dying in.”
But that is the risk for seeing fairs, and going on outing now. I know that, I mean I pass out several times a day. Plus I have spinal pain that is increasing and increasing. That will be addressed soon.
Still, going out tomorrow! I will take pictures.
Now I am dying girl. Linda says it, Cheryl too. Mostly, it is different, and while we got to know each other in ‘doing’, I can’t be that person, and don’t remember some of what we did. So now it is just ‘being’. I don't have a lot of knitting friends or action friends, or 'being' people. Luckily survival keeps me busy.
I am showered and ready to sleep, to get up in the morning and take off and see something. Three days of planning (and 51 postcards done) to get outside. Now, every trip and adventure means I could end up in the hospital. I told Linda that I didn’t understand why, when I worked and worked until I passed out at boxing, I didn’t wake up in the hospital.
“Because I was over you and I told them not to.” She breathed for me, she told them not to, and so, by the time I awoke, it was empty. As a caretaker said, “Hospitals are for dying in.”
But that is the risk for seeing fairs, and going on outing now. I know that, I mean I pass out several times a day. Plus I have spinal pain that is increasing and increasing. That will be addressed soon.
Still, going out tomorrow! I will take pictures.
Thursday, February 10, 2011
Lung issues and dreams of maggots
There was an accident with the ambi-bag today. I have been finding it harder and harder to expel air, with the diaphragm, now so much that I cannot brush my teeth, which I did holding my breath, but must take two to three gasping breaks. When I passed out, Linda wasn’t letting the air out enough before pushing more air in, causing huge inflation of the lungs, so much that it was rather painful to breath the rest of the day. I guess just something to note down to remember.
How do I feel about it? I realize that now, having added four more routines to my day, and having got the edema under control, that there will always be something going. Today, my heart went into a lurch then flutter pattern which was so painful I grabbed around for the ambulance emergency button. I could not find it and after a few minutes I was able to breathe enough to groan. I worry about when I will not be able to do the routines added to keep the: heart, lungs, diaphragm, vascular external system, oxygenation, heat control, vascular core system, cellular edema, oxygen conversion, and blood to surface return system going with the efforts I do, the physical, pills and exercises to keep the large and small intestine, colon, and the urine from going backward into the kidney. To lie in bed would make this all end, and thus, I think the end would come soon.
I have odd nightmares, only odd because they could happen but thankfully haven’t. The most common is having an egg sack laid into my skin or vaginal area, where the skin is dead to act as food, or where maggots are already feeding are parts of me, like the feet but yet I can’t feel it. I am aware of the circle of life things and ‘food for the worms’, I just prefer that it be when I am actually dead.
How do I feel about it? I realize that now, having added four more routines to my day, and having got the edema under control, that there will always be something going. Today, my heart went into a lurch then flutter pattern which was so painful I grabbed around for the ambulance emergency button. I could not find it and after a few minutes I was able to breathe enough to groan. I worry about when I will not be able to do the routines added to keep the: heart, lungs, diaphragm, vascular external system, oxygenation, heat control, vascular core system, cellular edema, oxygen conversion, and blood to surface return system going with the efforts I do, the physical, pills and exercises to keep the large and small intestine, colon, and the urine from going backward into the kidney. To lie in bed would make this all end, and thus, I think the end would come soon.
I have odd nightmares, only odd because they could happen but thankfully haven’t. The most common is having an egg sack laid into my skin or vaginal area, where the skin is dead to act as food, or where maggots are already feeding are parts of me, like the feet but yet I can’t feel it. I am aware of the circle of life things and ‘food for the worms’, I just prefer that it be when I am actually dead.
Tuesday, February 8, 2011
Because living is hard
After a year, the horrible aspects of this disease and the progression started to become clear. I had done some research and had doctors emailing me about specific problems and also progressions and how they talked to colleagues and all decided that all the diseases, this was the cruelest they knew. It had, over time the most pain, loss of function, my body an alien to me, it and I would become a horror as it dehumanized me. Not Lou Gerieg/A.L.S. or Hungtingtons, but they specifically said this is the disease which they had nightmares about getting. And so, soon, the emails came from the doctors that as much as they were fond of me, they couldn’t watch anymore what they knew would happen.
Others left for similar reasons, or stayed silent, or away, scared not of me, but of their own capacity for caring and how it would hurt them, getting close to me. And the longer I lived, the more I hid, the more I don’t talk on screw bronze about what goes on. I found that person after person who I had grown to be close with online thought I must have been doing some elaborate fiction because it was somehow easier for them to believe that I would not take a university lecturing position, and an offered book contract in order to create fiction showing me in a wheelchair. It was easier to believe that than to accept that a person whose life and day seemed to have parts out of horror films could exist, and still be a not so bad gal.
In Pop, a book about dementia, the family hides that the father, a hard working football player, had dementia, only the teen he was teaching in the park gets to really ‘know’ him by listening to him, by looking past the odd behavior. ‘Pop’ was to be inducted into the football hall of fame, and his family didn’t want him to go, kept him under lock and key, all for the best, they told themselves. But the teen got him out, got him a ‘good day’ where he was triggered by familiar things, and then, a week later, ‘Pop’, knowing his present and seeing the home where they are going to put him, ‘all for the best’, of course, jumps to his death.
Pop’s level of dementia and mine are the same, that’s not me talking that’s L. and the Alzheimer’s society, and four DVD of caring for a patient with dementia and the literature. The advantage of the internet is that I write every day, and I only need maybe one good hour after a long nap, or after a couple days of rest to make it seem okay. But it isn’t and there is acid burning in my mind.
I thought about killing myself. I think, with an incurable, untreatable condition, that it is unavoidable. First they wouldn’t believe me, and said it was PTSD, or something my brain or my anxiety or stress was creating. And now, they see the results and they admit them, and they admit that it is beyond what they know how to treat. Which means the treatment is the same. What people get after they have wisdom teeth extracted is a mild form of my ‘low pain drug’ which Linda uses when I have maxed out what my liver can handle of the higher drugs, atop the Fentynal, and the maximum nerve pain medication just so I can sleep for 8 hours. So when the really hard core ends, she gives me this ‘getting by’ stuff, that doctors used to get worried about, and had to get special permission from the clinic owner to prescribe, only now, Linda picks it up in the hundreds, and I use a pill to get me over the ‘hump’ of the last 2 hours. Last night it didn’t work, and I had my teeth so tight all night, grinding, and my body, when I could move it, after 10 minutes of trying, was in so much pain, different parts would go into spasm.
And it will get worse. I write every day so that though I can’t feel my fingers, they know where to go. So that I am used to writing and know how to make a word document. And the pain of talking now, is such that the pain and exertion of talking for 30 minutes makes me pass out. What scares me about the other day is I have no idea what I was doing before I woke with a mask on my nose and mouth and Linda squeezing air down into my lungs and then having it dribble out. I have no memory, I just woke. And I can’t help but wonder, what if I didn’t or don’t next time?
So why? Why keep going? Why not go out with some quality of life, when I was close enough to the cusp of things going good, and winning awards that I would be remembered as more than just a girl in a wheelchair, in a hospital bed, the ‘articulator-of-pain’, so I am called by Goldfish. What a title to give a human being.
I decided, in the same way I decided to fence until I dropped and then, still hoped, still argued my case, from my back, when I could breathe, and when they officially dropped me from the quarterfinals: then I cried. I could chose pride and accomplishments which might mean something to others, but what does it mean to a dead woman? Or I could start again, and again, with nothing. We had moved in a car, to Victoria, and I hustled on the street for food money and rent. We had the money for tuition but that’s all in Cardiff, so Linda biked miles, and I biked miles because I found that planes and trains let you take your bike for free, and I went to the market with 10 pounds, and bought books and walked four miles, carrying them to sell them for 14 pounds, and I walked the 1.5 miles home with enough money to keep my 10 pounds and now 4 pounds meant I could eat for 4-6 days. I slept without a blanket on a floor, with no heat or electricity, and it wasn’t the first or second or third time, I lived like that.
If I chose to take the easy way and avoid suffering or hardship by taking death, I would be dead long ago. I knew that I would experience degradation, and the need to start again, from nothing, to take who I was and rip it up and make it new, and then depending on how far the disease advanced, do it again. Some days, it hurts to try and breathe, some days, I just hang on as my heart fails to beat, or my veins don’t dilate open, or hey open too far, and I can’t stay conscious. There are 15 breaths in a minute, sometimes 11 if it hurts bad, and 680 in a hour. So when each breath is a conscious act of will and breathing through the pain, to expand the chest, I know each breath, each minute, each hour, each six hours I have until I can’t speak or see, and it feels like my body is melting from an acid in my cells, it hurts that much.
I knew that I couldn’t see ahead, but I would have to choose living with humiliation and fear and pain and the only good things were those that I and L. and others fought for. Or I could die. Dying is easy, it isn’t planning how to work with what limited resources, financially, mentally, physically that I have to keep going, to make a difference. There is no great funeral for me, no service, I asked L. to burn and burn again, and spread the ashes so that no one could ever say, “She was here.” – that any think I do, let in be in life and living, because that is what is hard, for others, and for me. The further I fall behind, the harder it is, to find a moment, a time, a kiss on L. hand, a joke.
In court and hospitals they decide on children and seniors based on if it is terminal, how long, the level of suffering, and how quickly they would die without care. Hospitals and governments don’t want to force what most would consider far below and acceptable quality of life: constant pain, heart attacks daily, lung deneration, liver and kidney degeneration, blood anemia and not being created, the skin, hair, fingernails literally falling off. Sores appearing from underneath, bruising at the bone, permanent damage due to lack of oxygen and blood to parts of the body, this is my life. But it is MY life. I said to the care worker today, as she says, when my eyes start ‘rolling’, when I can’t control the movement of my eyes, that I have talked too long, am too weak to maintain body function and will soon stop breathing. A sentence takes four or five gasps of air to try and push through the voice box by then, and I told her. “I talk (gasp) because (gasp) I fight (gasp) for all (gasp) of my ….I try to say the word but have to breathe several times, and can’t see by now, ‘humanity’, ‘my humanity’ I repeat, trying to get her to understand: Don’t ignore me, don’t decide to stop even the 15 minutes I can talk about philosophy or history each day because ‘it is all for the best, for her health’ and it is, they decided, as it is in my care plan.
I don’t surrender any part of my life willingly, and each loss, each function or speech problem, each limitation of movement or being able to do or remember or know where I am, it all has grief and sorrow. And if I only saw that, the way those who care do, who caregive, then maybe I would be cautious. But I see what I have left, what part of my being human I have, and I will not let one go without a fight, and I work always to try and win some of those lost back. What are 100 or 150 or 200 sit-ups after squeezing my diaphragm for an hour, until it decides to work again? I box, I exercise, I can’t sleep that night, due to pain, or the next day, or the next night, but it makes my smile less crooked, and my foot less bloated, and my circulation better, and ….
Living is hard, and it always will be, that is the path I chose, because to be honest, there is still so much more to see and learn and read, and watch on TV, and hear from people and if I decide out of vanity or selfishness that I would rather people remember me as a person who walks or as an athlete or as a professional writer, or an academic then I lose that chance forever, the moment I die. I lose L. and C. and all those who write or know me, R. and J. and so many. I want to find out what happens to Diago. I want to feel the joy of writing something well. I want to smell the blackberries in the sunshine and the smell of fur trees and pine cones.
Getting to see that has a cost of pain, suffering, dementia, and hardship. People fight wars to maintain a place they can call home, and the experiences I want to have. Well, this is my war. And I already know one day I’ll lose, but until then, I fight and I enjoy even the small things, like the sky being blue, or a good read.
This is my war. And it goes on, as long as I live.
Others left for similar reasons, or stayed silent, or away, scared not of me, but of their own capacity for caring and how it would hurt them, getting close to me. And the longer I lived, the more I hid, the more I don’t talk on screw bronze about what goes on. I found that person after person who I had grown to be close with online thought I must have been doing some elaborate fiction because it was somehow easier for them to believe that I would not take a university lecturing position, and an offered book contract in order to create fiction showing me in a wheelchair. It was easier to believe that than to accept that a person whose life and day seemed to have parts out of horror films could exist, and still be a not so bad gal.
In Pop, a book about dementia, the family hides that the father, a hard working football player, had dementia, only the teen he was teaching in the park gets to really ‘know’ him by listening to him, by looking past the odd behavior. ‘Pop’ was to be inducted into the football hall of fame, and his family didn’t want him to go, kept him under lock and key, all for the best, they told themselves. But the teen got him out, got him a ‘good day’ where he was triggered by familiar things, and then, a week later, ‘Pop’, knowing his present and seeing the home where they are going to put him, ‘all for the best’, of course, jumps to his death.
Pop’s level of dementia and mine are the same, that’s not me talking that’s L. and the Alzheimer’s society, and four DVD of caring for a patient with dementia and the literature. The advantage of the internet is that I write every day, and I only need maybe one good hour after a long nap, or after a couple days of rest to make it seem okay. But it isn’t and there is acid burning in my mind.
I thought about killing myself. I think, with an incurable, untreatable condition, that it is unavoidable. First they wouldn’t believe me, and said it was PTSD, or something my brain or my anxiety or stress was creating. And now, they see the results and they admit them, and they admit that it is beyond what they know how to treat. Which means the treatment is the same. What people get after they have wisdom teeth extracted is a mild form of my ‘low pain drug’ which Linda uses when I have maxed out what my liver can handle of the higher drugs, atop the Fentynal, and the maximum nerve pain medication just so I can sleep for 8 hours. So when the really hard core ends, she gives me this ‘getting by’ stuff, that doctors used to get worried about, and had to get special permission from the clinic owner to prescribe, only now, Linda picks it up in the hundreds, and I use a pill to get me over the ‘hump’ of the last 2 hours. Last night it didn’t work, and I had my teeth so tight all night, grinding, and my body, when I could move it, after 10 minutes of trying, was in so much pain, different parts would go into spasm.
And it will get worse. I write every day so that though I can’t feel my fingers, they know where to go. So that I am used to writing and know how to make a word document. And the pain of talking now, is such that the pain and exertion of talking for 30 minutes makes me pass out. What scares me about the other day is I have no idea what I was doing before I woke with a mask on my nose and mouth and Linda squeezing air down into my lungs and then having it dribble out. I have no memory, I just woke. And I can’t help but wonder, what if I didn’t or don’t next time?
So why? Why keep going? Why not go out with some quality of life, when I was close enough to the cusp of things going good, and winning awards that I would be remembered as more than just a girl in a wheelchair, in a hospital bed, the ‘articulator-of-pain’, so I am called by Goldfish. What a title to give a human being.
I decided, in the same way I decided to fence until I dropped and then, still hoped, still argued my case, from my back, when I could breathe, and when they officially dropped me from the quarterfinals: then I cried. I could chose pride and accomplishments which might mean something to others, but what does it mean to a dead woman? Or I could start again, and again, with nothing. We had moved in a car, to Victoria, and I hustled on the street for food money and rent. We had the money for tuition but that’s all in Cardiff, so Linda biked miles, and I biked miles because I found that planes and trains let you take your bike for free, and I went to the market with 10 pounds, and bought books and walked four miles, carrying them to sell them for 14 pounds, and I walked the 1.5 miles home with enough money to keep my 10 pounds and now 4 pounds meant I could eat for 4-6 days. I slept without a blanket on a floor, with no heat or electricity, and it wasn’t the first or second or third time, I lived like that.
If I chose to take the easy way and avoid suffering or hardship by taking death, I would be dead long ago. I knew that I would experience degradation, and the need to start again, from nothing, to take who I was and rip it up and make it new, and then depending on how far the disease advanced, do it again. Some days, it hurts to try and breathe, some days, I just hang on as my heart fails to beat, or my veins don’t dilate open, or hey open too far, and I can’t stay conscious. There are 15 breaths in a minute, sometimes 11 if it hurts bad, and 680 in a hour. So when each breath is a conscious act of will and breathing through the pain, to expand the chest, I know each breath, each minute, each hour, each six hours I have until I can’t speak or see, and it feels like my body is melting from an acid in my cells, it hurts that much.
I knew that I couldn’t see ahead, but I would have to choose living with humiliation and fear and pain and the only good things were those that I and L. and others fought for. Or I could die. Dying is easy, it isn’t planning how to work with what limited resources, financially, mentally, physically that I have to keep going, to make a difference. There is no great funeral for me, no service, I asked L. to burn and burn again, and spread the ashes so that no one could ever say, “She was here.” – that any think I do, let in be in life and living, because that is what is hard, for others, and for me. The further I fall behind, the harder it is, to find a moment, a time, a kiss on L. hand, a joke.
In court and hospitals they decide on children and seniors based on if it is terminal, how long, the level of suffering, and how quickly they would die without care. Hospitals and governments don’t want to force what most would consider far below and acceptable quality of life: constant pain, heart attacks daily, lung deneration, liver and kidney degeneration, blood anemia and not being created, the skin, hair, fingernails literally falling off. Sores appearing from underneath, bruising at the bone, permanent damage due to lack of oxygen and blood to parts of the body, this is my life. But it is MY life. I said to the care worker today, as she says, when my eyes start ‘rolling’, when I can’t control the movement of my eyes, that I have talked too long, am too weak to maintain body function and will soon stop breathing. A sentence takes four or five gasps of air to try and push through the voice box by then, and I told her. “I talk (gasp) because (gasp) I fight (gasp) for all (gasp) of my ….I try to say the word but have to breathe several times, and can’t see by now, ‘humanity’, ‘my humanity’ I repeat, trying to get her to understand: Don’t ignore me, don’t decide to stop even the 15 minutes I can talk about philosophy or history each day because ‘it is all for the best, for her health’ and it is, they decided, as it is in my care plan.
I don’t surrender any part of my life willingly, and each loss, each function or speech problem, each limitation of movement or being able to do or remember or know where I am, it all has grief and sorrow. And if I only saw that, the way those who care do, who caregive, then maybe I would be cautious. But I see what I have left, what part of my being human I have, and I will not let one go without a fight, and I work always to try and win some of those lost back. What are 100 or 150 or 200 sit-ups after squeezing my diaphragm for an hour, until it decides to work again? I box, I exercise, I can’t sleep that night, due to pain, or the next day, or the next night, but it makes my smile less crooked, and my foot less bloated, and my circulation better, and ….
Living is hard, and it always will be, that is the path I chose, because to be honest, there is still so much more to see and learn and read, and watch on TV, and hear from people and if I decide out of vanity or selfishness that I would rather people remember me as a person who walks or as an athlete or as a professional writer, or an academic then I lose that chance forever, the moment I die. I lose L. and C. and all those who write or know me, R. and J. and so many. I want to find out what happens to Diago. I want to feel the joy of writing something well. I want to smell the blackberries in the sunshine and the smell of fur trees and pine cones.
Getting to see that has a cost of pain, suffering, dementia, and hardship. People fight wars to maintain a place they can call home, and the experiences I want to have. Well, this is my war. And I already know one day I’ll lose, but until then, I fight and I enjoy even the small things, like the sky being blue, or a good read.
This is my war. And it goes on, as long as I live.
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