I ate breakfast today, poached eggs on toast with a bit of cheese and tomato along with a pan-fried chicken leg nicely spiced. It was a good breakfast, and it was the first time I've felt really hungry in a few days, the first time I've actually felt like eating, seeing it as a pleasure rather than as a requirement.
You see, I've been battling this low grade bladder infection for a few days know. Yesterday it started to heat up, the night before being one where I was up every hour to go pee, plus I soiled another pair of pants by peeing in my sleep. This excessive urination is a sure sign of a mild bladder infection. Along with excess urination, I was tired, more than normally tired, even after a full day in bed. Then, yesterday afternoon, I started to develop a fever. This one was going to be a problem.
I'm very good at diagnosing these bladder infections myself; I've had enough of them. Quite possibly it could be one of these nasty bugs that takes me out in the end. For now, I have something called "Monurol". It's actually fosfomycin tromethamine, a synthetic, broad spectrum, bactericidal antibiotic. I mix a pouch of this stuff up, which they have kindly flavoured orange, and drink it down in a half cup of water. Then, in a matter of hours, it starts killing off the nasty bugs.
Last night I slept well. I was not up every hour to go pee. I did not soil the bed or myself. This morning I woke up actually feeling like I might get out of bed. I wanted breakfast. I am still hungry after a very good breakfast. I will likely eat more of that fried chicken today. So, I would say the Monurol did its job.
Now, if only the rest of my medications worked as rapidly and as well. Maybe my body would start to get better. I know. I'm only dreaming. It's the drugs, man.
Friday, 8 September 2017
Thursday, 7 September 2017
I Can Still Breathe
I slept yesterday, all day. I got up in the morning to go to the bathroom. I took my pills. My HCA dressed me. Then I went back into bed and stayed there until just a few minutes ago. Yet here I am, still sleepy. It seems that sleep is my greatest need these days. I didn't eat yesterday, and didn't mind it. I didn't have anything to drink yesterday, yet I still peed about 2 litres. I did no exercises, no movements, nothing. So why am I tired right now?
Maybe I am fighting an infection. Maybe this is just ALS having its way with me. I can't tell. Nobody can tell for sure. I can get tested for an infection but often the tests don't pick up the minor infections that can make me feel like this. It has to get serious enough to where I have a fever before it really shows up in blood and urine tests. Then again, the weakness that I feel is another part of the disease, so maybe that's it.
The problem here is the minor nature of change with ALS. This can happen, then sort of settle down, then happen a bit more, and so on and so on, until a significant event happens to prove the process. For example, I noticed yesterday that my arm seemed heavy, that lifting a pillow across the bed was very difficult. I've noticed the creeping weakness in my arms for a while, a couple of years really, and now it is truly noticeable.
So when I say I notice that I am having jaw issues, this is not a simple perception. I noticed on Monday that I had trouble opening my mouth wide enough to eat a sandwich. It was not a particularly large sandwich. My jaw just isn't as strong as it used to be. Lots of people might dismiss this, saying I always bite off too much, or maybe I was just tired, or that happens to all of us once in a while. What doesn't happen to all of us is the daily incrementalism of ALS. Soon my mouth won't open wide enough for food, my arms won't be strong enough to life themselves let alone a fork full of food or a pillow. Soon I will lose the ability to drink a sip of water.
Until then, I will eat what I can, drink what I can, and hope this exhaustion passes at some point today. That's as good as it gets. At least I can still breathe.
Maybe I am fighting an infection. Maybe this is just ALS having its way with me. I can't tell. Nobody can tell for sure. I can get tested for an infection but often the tests don't pick up the minor infections that can make me feel like this. It has to get serious enough to where I have a fever before it really shows up in blood and urine tests. Then again, the weakness that I feel is another part of the disease, so maybe that's it.
The problem here is the minor nature of change with ALS. This can happen, then sort of settle down, then happen a bit more, and so on and so on, until a significant event happens to prove the process. For example, I noticed yesterday that my arm seemed heavy, that lifting a pillow across the bed was very difficult. I've noticed the creeping weakness in my arms for a while, a couple of years really, and now it is truly noticeable.
So when I say I notice that I am having jaw issues, this is not a simple perception. I noticed on Monday that I had trouble opening my mouth wide enough to eat a sandwich. It was not a particularly large sandwich. My jaw just isn't as strong as it used to be. Lots of people might dismiss this, saying I always bite off too much, or maybe I was just tired, or that happens to all of us once in a while. What doesn't happen to all of us is the daily incrementalism of ALS. Soon my mouth won't open wide enough for food, my arms won't be strong enough to life themselves let alone a fork full of food or a pillow. Soon I will lose the ability to drink a sip of water.
Until then, I will eat what I can, drink what I can, and hope this exhaustion passes at some point today. That's as good as it gets. At least I can still breathe.
Tuesday, 5 September 2017
Alfred Hitchcock
Terror is often accompanied by suspense in the unfolding of a thrilling narrative - or, to put it another way, a story which gives the reader a feeling of terror necessarily contains a certain measure of suspense. Alfred Hitchcock
Alfred Hitchcock knew how to scare people. The famous movie and TV director knew what it took to get people sufficiently engaged in a story, how to twist that engagement into fear and even terror at times. He admitted himself that this was forte, telling Newsweek back in 1956, "If I made Cinderella, the audience would immediately be looking for a body in the coach."
The way he famously built terror and fear into his movies was to build suspension, tension between a known, terrible outcome and the time left to prevent it. He knew that the ticking of the time bomb, the knowledge of where the knife was hidden, or the man behind the door were all more frightening if you could build suspense and fear.
What was not frightening, after the initial event and certainly not over time, was the even itself. The bomb goes boom. The knife slashes. The killer pounces. All of those things happen quickly, and only once. However the clock, the knife, the killer, all these things held as a threat, as a future possibility, as an intended outcome, all build fear and suspense until the climax. He himself once said, "There is no terror in the bang, only in the anticipation of it."
I am, more and more these days, anticipating the end of my life. There is no terror in death, only in the anticipation of it. I am not afraid of being dead. It's the slow, agonizing process taking bits and bits more each day that is truly frightening. It's inside my head now, constantly, that one of these days the losses will reach a point where I simply cannot survive them. The question that drives the terror is "How long?" and, perhaps more importantly, "What will I go through to get there?"
This is not just fear. Living like this is its own horror film, it's own suspense, it's own kind of terror. I'm feeling like my life is directed by Alfred Hitchcock, that he is making each downward change in my body a kind of link in the chain, a link inevitably leading to death. I am not sure what is worse, the destination or the journey. Personally, I don't like this movie. I'd like to leave the theatre but I can't. I am the star of the show.
Alfred Hitchcock knew how to scare people. The famous movie and TV director knew what it took to get people sufficiently engaged in a story, how to twist that engagement into fear and even terror at times. He admitted himself that this was forte, telling Newsweek back in 1956, "If I made Cinderella, the audience would immediately be looking for a body in the coach."
The way he famously built terror and fear into his movies was to build suspension, tension between a known, terrible outcome and the time left to prevent it. He knew that the ticking of the time bomb, the knowledge of where the knife was hidden, or the man behind the door were all more frightening if you could build suspense and fear.
What was not frightening, after the initial event and certainly not over time, was the even itself. The bomb goes boom. The knife slashes. The killer pounces. All of those things happen quickly, and only once. However the clock, the knife, the killer, all these things held as a threat, as a future possibility, as an intended outcome, all build fear and suspense until the climax. He himself once said, "There is no terror in the bang, only in the anticipation of it."
I am, more and more these days, anticipating the end of my life. There is no terror in death, only in the anticipation of it. I am not afraid of being dead. It's the slow, agonizing process taking bits and bits more each day that is truly frightening. It's inside my head now, constantly, that one of these days the losses will reach a point where I simply cannot survive them. The question that drives the terror is "How long?" and, perhaps more importantly, "What will I go through to get there?"
This is not just fear. Living like this is its own horror film, it's own suspense, it's own kind of terror. I'm feeling like my life is directed by Alfred Hitchcock, that he is making each downward change in my body a kind of link in the chain, a link inevitably leading to death. I am not sure what is worse, the destination or the journey. Personally, I don't like this movie. I'd like to leave the theatre but I can't. I am the star of the show.
Monday, 4 September 2017
Quietude
Peter is gone. Kathy, my HCA, is finished and gone. It sure is quiet around here when everyone is gone, except me. I'm not sure I like that quiet. I like the sound of people around me. I like the feel of others sharing my space and home. It feels safe, like a comforter wrapped round me on a cold day. It feels warm, even though the temperature is unchanged in any way. I like having someone near me.
Of course the downside to all this extroversion and requirement for people is that my life doesn't work that way these days. I am alone most of the time. Sure, there are frequently guests in my home. Sure, I have Home Care every morning. It's the gaps in between, and there are many of them, where the quiet solitude becomes truly apparent.
I admit there are days when I like this, when I need a rest from the commotion of day to day livng. Today is not one of those days. Fortunately Todd and Jessica will be here shortly, helping me fix my Kuerig problem. They are bring theirs over and swapping it with mine. Todd thinks he can fix it. That would be good. What's better is that they will come and visit. They will spend time with me. They will help with things around my apartment. It will be noisy again.
They will leave after they are done. The quietude will once again descend. I will be alone. Again. I can live with this, on occasion even enjoy it. In the end, however, I like people. I like having them here. Especially when there is a close bond, like my bond with Peter, like my bond with my good friends. After they leave, I will probably sleep. That's what life is like now.
It's getting more difficult for me these days, tougher to keep going, more challenging to get out of bed and stay up for the day. I am getting more difficult, too. I have less strength, less energy, less will to do things. I have a shorter string, an earlier snapping point, a greater emotional response to things which truly mean nothing. It's all of apiece, this disease, this need for help, this want of companionship. I wish it wasn't this way. But it is.
Of course the downside to all this extroversion and requirement for people is that my life doesn't work that way these days. I am alone most of the time. Sure, there are frequently guests in my home. Sure, I have Home Care every morning. It's the gaps in between, and there are many of them, where the quiet solitude becomes truly apparent.
I admit there are days when I like this, when I need a rest from the commotion of day to day livng. Today is not one of those days. Fortunately Todd and Jessica will be here shortly, helping me fix my Kuerig problem. They are bring theirs over and swapping it with mine. Todd thinks he can fix it. That would be good. What's better is that they will come and visit. They will spend time with me. They will help with things around my apartment. It will be noisy again.
They will leave after they are done. The quietude will once again descend. I will be alone. Again. I can live with this, on occasion even enjoy it. In the end, however, I like people. I like having them here. Especially when there is a close bond, like my bond with Peter, like my bond with my good friends. After they leave, I will probably sleep. That's what life is like now.
It's getting more difficult for me these days, tougher to keep going, more challenging to get out of bed and stay up for the day. I am getting more difficult, too. I have less strength, less energy, less will to do things. I have a shorter string, an earlier snapping point, a greater emotional response to things which truly mean nothing. It's all of apiece, this disease, this need for help, this want of companionship. I wish it wasn't this way. But it is.
Sunday, 3 September 2017
Nightmare Nap
Zopliclone makes for nightmares. It's one of the known effects of the drug. It can also cause an intense, deep sleep, so dense that you don't wake up even for the most common of things, like going pee. This all becomes more powerful when your body is tired while your mind is not ready to sleep yet, like last night.
I went to be at around 9:30 PM, and couldn't sleep. I was exhausted from drink and lack of sleep on Friday night. Yet there was no rest for the wicked. So I tooke the pill. It took about an hour to cut in. From then on I knew of nothing, no dreams, no nightmares, nothing, until about 10:45 AM on Saturday morning.
Fortunatel Home Care was a bit late, so I was awake when Edith got here. I was also wet. I had slept right through going pee at some point in the night. Fortunately I take precautions for this. The damage was limited; a wet towel and a little dampness on my sheets. I can always wash the sheets and towels, so no worries.
Edith arrived, got me up, toileted, and dressed. Peter made breakfast. I enjoyed. But by 2:00 PM I was tired again. So off I went for a nap. This is when the nightmares came in. They were both very frightening, involving life and death, mostly my death. There is kind of a theme in all my dreams and nightmares these days, a theme where I am at risk of dying. Sometimes I wake up just as death arrives.
When I did wake up, at about 4:30 PM, I came out to Peter having a great time watching "Big Trouble In Little China", an absolute classic, with Kurt Russell talking like John Wayne, and tons of Chinese stereotyping. The first thing he said to me was "You were having yourself quite the nightmare." Apparently I was calling out in my sleep.
Needless to say, the nap was not highly effective. I slept, such as it was. But I am still very tired. Tonight will be another early night. It takes so much these days to recover from exertion. It's a combination of age and ALS, plus perhaps the odd nightmare.
I went to be at around 9:30 PM, and couldn't sleep. I was exhausted from drink and lack of sleep on Friday night. Yet there was no rest for the wicked. So I tooke the pill. It took about an hour to cut in. From then on I knew of nothing, no dreams, no nightmares, nothing, until about 10:45 AM on Saturday morning.
Fortunatel Home Care was a bit late, so I was awake when Edith got here. I was also wet. I had slept right through going pee at some point in the night. Fortunately I take precautions for this. The damage was limited; a wet towel and a little dampness on my sheets. I can always wash the sheets and towels, so no worries.
Edith arrived, got me up, toileted, and dressed. Peter made breakfast. I enjoyed. But by 2:00 PM I was tired again. So off I went for a nap. This is when the nightmares came in. They were both very frightening, involving life and death, mostly my death. There is kind of a theme in all my dreams and nightmares these days, a theme where I am at risk of dying. Sometimes I wake up just as death arrives.
When I did wake up, at about 4:30 PM, I came out to Peter having a great time watching "Big Trouble In Little China", an absolute classic, with Kurt Russell talking like John Wayne, and tons of Chinese stereotyping. The first thing he said to me was "You were having yourself quite the nightmare." Apparently I was calling out in my sleep.
Needless to say, the nap was not highly effective. I slept, such as it was. But I am still very tired. Tonight will be another early night. It takes so much these days to recover from exertion. It's a combination of age and ALS, plus perhaps the odd nightmare.
Saturday, 2 September 2017
Memories
So, my brother Peter is here this weekend. I know this because there is an empty bottle of 12 year old Bowmore Single Malt Scotch Whisky sitting in front of me. Oh, and also because I am in a very good mood today. I get that way when my brothers are around. I love having them visit.
I am very fortunate to have a tremendous group of people around me these days, brothers included. I have them, my friends, over to visit, to share meals, to share wine, all the time. But there is nothing quite like the history, the shared experiences, the shared misery of our younger years. I simply need to whisper about chickens and Peter shivers as I do. We can talk about life experiences, like travel or adventure, and know, understand, feel the same things in different ways.
It's true that I have had a terrific few years. Thanks to David, Cheryl, Katherine, Ricky, Mike, and so many others, I have had adventures galore. Most recently it was Ireland and Scotland. Before that it was down to my brother Adam's place. Last year it was road tripping with Katherine. And so on. But the best times are when my brothers come to visit me. I'm not sure what it is, but it makes me happy.
Even better, my brother Jim is on his way here today. He will stay the night; at least I hope he will. We'll talk, remember our childhood, think about where we came from, about where we are now. Perhaps Pete and Jim will go out to Karaoke. I will not. These days going out is too much of a hassle for me. I'll stay home, awaiting their return. I don't mind. I am happy that they get time together too.
Then, suddenly, it will be tomorrow. Today will have gone, leaving only the memory. This is how life works. You live. You experience. Time passes. you remember. In the end, that is all we have, today and memories.Not a bad deal when you think about it. Today is as good as we make it. Memories are that way too, as good as we make them.
I am very fortunate to have a tremendous group of people around me these days, brothers included. I have them, my friends, over to visit, to share meals, to share wine, all the time. But there is nothing quite like the history, the shared experiences, the shared misery of our younger years. I simply need to whisper about chickens and Peter shivers as I do. We can talk about life experiences, like travel or adventure, and know, understand, feel the same things in different ways.
It's true that I have had a terrific few years. Thanks to David, Cheryl, Katherine, Ricky, Mike, and so many others, I have had adventures galore. Most recently it was Ireland and Scotland. Before that it was down to my brother Adam's place. Last year it was road tripping with Katherine. And so on. But the best times are when my brothers come to visit me. I'm not sure what it is, but it makes me happy.
Even better, my brother Jim is on his way here today. He will stay the night; at least I hope he will. We'll talk, remember our childhood, think about where we came from, about where we are now. Perhaps Pete and Jim will go out to Karaoke. I will not. These days going out is too much of a hassle for me. I'll stay home, awaiting their return. I don't mind. I am happy that they get time together too.
Then, suddenly, it will be tomorrow. Today will have gone, leaving only the memory. This is how life works. You live. You experience. Time passes. you remember. In the end, that is all we have, today and memories.Not a bad deal when you think about it. Today is as good as we make it. Memories are that way too, as good as we make them.
Friday, 1 September 2017
I Am A Mutant
Okay, I've been writing a lot of dark stuff lately. So how about this instead?
I was thinking about myself. I know. How rare is that? I was thinking about what I am. I am a mutant. Or at least I have a mutant gene. That's the focus of much of the research in ALS. Gene therapy, stem cells, genetic regeneration; lots of it. So, if ALS has a genetic component, and I have the mutant gene that triggers ALS, then I must be a mutant.
Then I began thinking about other mutants, the whole X-Men thing. I got one of the useless mutations. I bet there are all kinds of nonX-Men with useless mutations. So what if I grow an extra set of teeth? Who cares if my lungs cystify and kill me? Oh, and what about ALS? What good is this as a mutation? Why couldn't I get a mutation like super strength, or the ability to levitate?
Anyways... Here I am thinking about the Marvel Universe and the X-Men. Then I think to myself, how sexist is this!! X-MEN! When one of the original five was female, and now all those mutants are out there who are female. Can they ever be X-MEN? No!! That is so sexist, so unfair!
What we need to do is rise up, as one body, and demand that Marvel change the name of that whole thing to something more genderly inclusive. Maybe something like X-People, or maybe even Mutant-X. Sure it's been used, but it could probably be purchased as intellectual property for a bargain basement price.
Oh, then we could go after them about their stupid diminutive naming for so many of their female characters! For example, in the origin story about X-Men, there were Angel, Beast, Cyclops, Iceman, and Marvel Girl. Really! The first four sound dangerous, sketchy, out there. Then we have this little girl tagging up the team. Jean Grey is really radical, so much more powerful that any of those animalistic men.
Super Girl! Where the heck is Superwoman? At best she is the anti-hero of Wonder Woman living in a parallel universe. At worst, one of many comic characters who assumed that title, mostly for nefarious purposes. You see, it's not just Marvel, it's DC too, doing it at their best, or second best as it may be.
It's time for feminism to strike at the heart of all 10 year old boys, or those who have the passions of 10 year old boys! It's time to equalize presentation of women as heroes. It's time to eliminate the de-humanized, terror stricken look normally portrayed by frightened women in the comics! It's time to stop using boobs as the main attraction of female characters!
I was thinking about myself. I know. How rare is that? I was thinking about what I am. I am a mutant. Or at least I have a mutant gene. That's the focus of much of the research in ALS. Gene therapy, stem cells, genetic regeneration; lots of it. So, if ALS has a genetic component, and I have the mutant gene that triggers ALS, then I must be a mutant.
Then I began thinking about other mutants, the whole X-Men thing. I got one of the useless mutations. I bet there are all kinds of nonX-Men with useless mutations. So what if I grow an extra set of teeth? Who cares if my lungs cystify and kill me? Oh, and what about ALS? What good is this as a mutation? Why couldn't I get a mutation like super strength, or the ability to levitate?
Anyways... Here I am thinking about the Marvel Universe and the X-Men. Then I think to myself, how sexist is this!! X-MEN! When one of the original five was female, and now all those mutants are out there who are female. Can they ever be X-MEN? No!! That is so sexist, so unfair!
What we need to do is rise up, as one body, and demand that Marvel change the name of that whole thing to something more genderly inclusive. Maybe something like X-People, or maybe even Mutant-X. Sure it's been used, but it could probably be purchased as intellectual property for a bargain basement price.
Oh, then we could go after them about their stupid diminutive naming for so many of their female characters! For example, in the origin story about X-Men, there were Angel, Beast, Cyclops, Iceman, and Marvel Girl. Really! The first four sound dangerous, sketchy, out there. Then we have this little girl tagging up the team. Jean Grey is really radical, so much more powerful that any of those animalistic men.
Super Girl! Where the heck is Superwoman? At best she is the anti-hero of Wonder Woman living in a parallel universe. At worst, one of many comic characters who assumed that title, mostly for nefarious purposes. You see, it's not just Marvel, it's DC too, doing it at their best, or second best as it may be.
It's time for feminism to strike at the heart of all 10 year old boys, or those who have the passions of 10 year old boys! It's time to equalize presentation of women as heroes. It's time to eliminate the de-humanized, terror stricken look normally portrayed by frightened women in the comics! It's time to stop using boobs as the main attraction of female characters!
EQUALITY NOW FOR ALL COMIC BOOK CHARACTERS!
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