Alas, I have become a one armed bandit. My left arm is unable to pick up anything now, even its own weight. A single sheet of paper is too much, that lift forcing me to brace my left arm against something sturdy, usually my own belly, then sort of wiggling my way up. If my arm is not braced against my belly, it simply falls to my side, to rest on the arm of my PWC.
Oddly enough, my fingers on my left hand can type just fine. It is fortunate that keyboard technology has come so far over the years. I remember typing class in Grade 9. We had these old manual typewriters where you had to pound the keys with all your might just to get a letter from key to paper. The Grade 9 class, mostly boys, looked with envy at the girls across the hall in secretarial classes; they had electric typewriters, although many of our looks across the hall had little to do with typewriters. After all, it was 1969. In keeping with putting a man on the moon, their papers just seem to fair whip out of their machines, the automatic margins and returns knowing precisely when their transcription efforts had reached the end of a page.
I did not enjoy high school. It seemed to me just wrong that teachers focused their attention on the athletically competent while those of us with intellectual capability were simply seen as grist for the mill of lumbering senior high students. Bullying, including physical attacks in many cases, was seen as a necessary part of life, needed to toughen us up for some imaginary adult life where physical attacks took place often and were not remonstrated by laws. In one notable incident, I remember being stabbed in the leg with a #2 pencil, always those damned pencils, where the graphite snapped off in my leg, there to remain right up into my adulthood. When I complained to the teacher, he professed to see nothing, going on to say that if I could walk I was fine.
I guess now that teacher would have to concede I am not fine. I cannot walk. His measures for health and medical acumen did little for those years. It was this same teacher who came up with the game of "murder ball", where the objective was to put people out by slamming them as hard as possible with a soft play ball while running about on an open field. It was kind of like dodge-ball on steroids. Needless to say, I went out early, and often, repeat hits being a perfectly acceptable method to get you back in. The game was ultimately cancelled by the school administration after a few boys, fortunately not myself, were seriously injured.
There were others in my school who had it worse off than me, who were smaller than me, who were less capable of handling those wretched physical monsters from Grade 11 and 12. I managed to escape Mission Secondary School at the beginning of Grade 10, fleeing my father's home, another place where wanton physical strength was all that mattered. Regardless of all that, school was done for me, at least public school. I dropped out of Grade 11, never to make it to the graduation stage.
Monday, 10 September 2018
Saturday, 8 September 2018
Will You Be With Me?
Will you be with me when I die? I've been thinking about what that means, especially with the death of my friend Pat. It doesn't mean what you might think it means. It doesn't mean standing there beside my bed. It doesn't mean sitting with me holding my hand. It doesn't mean constantly caring for me. What it means is will you be aware of me, thinking of me, holding my heart with yours? Will you be aware of how my life has gone in its recent days? Will you know who to call to find out what has happened to me? Will you be wondering what I am thinking or feeling in those last minutes as I pass from this universe to the next?
I've learned a great deal about this lately, how people can be right beside you, yet not be there with you. I've seen how people from a great distance can sense the moment of death, or at least the hour of death; people who are so intimately aware of the other that separation is more of a concept than a reality. I've also learned that many of those who say they wish they could be with me really mean that as an idea, perhaps even an excuse.
There are those truly unable to be in physical touch, people like my Mom who can no longer travel. Then again there are those who talk about connection with no plan whatsoever to make that connection. I know there are people out there who's financial situation precludes any chance of physical touch. Still, the truth is that if you want to be emotionally in touch with someone, the first step is to actually be in touch with them, often, if not in person then at least in a personal way.
It's a tough thing, making some of these choices, particularly in my case, where timelines are slow and uncertain.This November 22nd will be the sixth year since my diagnosis. For at least the last three years my constant thought has been "If I am here next year..." Yet I have not died. Each year I have felt closer to death, less capable of living. Each year I have wondered if this was it. That uncertainty creates a real challenge for those who want to get in that one last visit, who want to be present with me.
Here is my advice. For those you love, treat each visit as the last visit. Treat each moment as the last moment. Treat each contact as the last contact. Leave behind no unfinished business, no cloud. If we part happily, then you will be with me in my last moments. It is my wish to take a treasure chest of love and memories with me. I save the precious moments in that chest the moment they happen. Then I am sure I will be with you, take you with me, as I draw my last breath.
I've learned a great deal about this lately, how people can be right beside you, yet not be there with you. I've seen how people from a great distance can sense the moment of death, or at least the hour of death; people who are so intimately aware of the other that separation is more of a concept than a reality. I've also learned that many of those who say they wish they could be with me really mean that as an idea, perhaps even an excuse.
There are those truly unable to be in physical touch, people like my Mom who can no longer travel. Then again there are those who talk about connection with no plan whatsoever to make that connection. I know there are people out there who's financial situation precludes any chance of physical touch. Still, the truth is that if you want to be emotionally in touch with someone, the first step is to actually be in touch with them, often, if not in person then at least in a personal way.
It's a tough thing, making some of these choices, particularly in my case, where timelines are slow and uncertain.This November 22nd will be the sixth year since my diagnosis. For at least the last three years my constant thought has been "If I am here next year..." Yet I have not died. Each year I have felt closer to death, less capable of living. Each year I have wondered if this was it. That uncertainty creates a real challenge for those who want to get in that one last visit, who want to be present with me.
Here is my advice. For those you love, treat each visit as the last visit. Treat each moment as the last moment. Treat each contact as the last contact. Leave behind no unfinished business, no cloud. If we part happily, then you will be with me in my last moments. It is my wish to take a treasure chest of love and memories with me. I save the precious moments in that chest the moment they happen. Then I am sure I will be with you, take you with me, as I draw my last breath.
Friday, 7 September 2018
Still Counting
My friend Pat died last night. She was 76 years old. She died young in a country where female life expectancy is 82, a country with excellent health care. Lung cancer took her life. Life is unfair; some get so much more. Ironically her husband, a man of 86 years, is strong and healthy, except that he has dementia, possibly Alzheimer's. Thanks to his illness, he can't remember from day to day this the woman he was with for more than 50 years is no longer here. Yet he is strong enough to get up, get about, and enjoy each day.
When I moved into this building, I didn't know I had ALS. I was diagnosed a couple of months afterwards. I didn't say much to me neighbours at first. I had enough to deal with telling my co-workers, friends, and family. It was a frightful, tearful time. It was when I brought my son to live with me for that first year that Pat asked what was going on. I told her. It was another tearful moment. Right there and then she took me under her wing, a mother hen defending her injured chick, notwithstanding that I was a grown man, or that she had three of her own.
Pat was a fearsome woman, a force of nature. She was the chairperson of our condo board, filled with activity, using her energy to defend and protect our homes from what she felt would be poor decisions by others, never mind that some of them were not. She had an idea of how things should be run, and by God we were going to run them that way.
There was, however, a frustrated side for Pat. At times, many times, she needed a sounding board, someone who could listen without judging, respond without criticising, and most importantly of all, sit and share a bottle of wine with her while she talked, or sometimes listened. She was a natural ally, even when we had the occasional fierce disagreement. Battles with her were loud, fast, and then forgotten.
The ultimate irony came on two fronts. When her husband, Paul, started to show signs of dementia a couple of years ago, it was extremely difficult for her to care for him, particularly as his condition worsened. At the same time I was needing more neighbourly help, something she was constant in providing. Then she got sick; lung cancer. She declined quickly.
We've known for some time that her cancer was terminal. That's where the irony arises. This strong, powerful woman, this mother hen, this woman who cared for me was supposed to live, while I was supposed to die. Yet here I am, almost six years past diagnosis, three years past my due date, still alive, still plugging along. She has left this earth. Her husband, no longer able to live alone, has gone to a care home where I suspect he will begin a rapid decline, not because of the home but because he will have lost his way in life. Yet here I remain, still counting my days.
When I moved into this building, I didn't know I had ALS. I was diagnosed a couple of months afterwards. I didn't say much to me neighbours at first. I had enough to deal with telling my co-workers, friends, and family. It was a frightful, tearful time. It was when I brought my son to live with me for that first year that Pat asked what was going on. I told her. It was another tearful moment. Right there and then she took me under her wing, a mother hen defending her injured chick, notwithstanding that I was a grown man, or that she had three of her own.
Pat was a fearsome woman, a force of nature. She was the chairperson of our condo board, filled with activity, using her energy to defend and protect our homes from what she felt would be poor decisions by others, never mind that some of them were not. She had an idea of how things should be run, and by God we were going to run them that way.
There was, however, a frustrated side for Pat. At times, many times, she needed a sounding board, someone who could listen without judging, respond without criticising, and most importantly of all, sit and share a bottle of wine with her while she talked, or sometimes listened. She was a natural ally, even when we had the occasional fierce disagreement. Battles with her were loud, fast, and then forgotten.
The ultimate irony came on two fronts. When her husband, Paul, started to show signs of dementia a couple of years ago, it was extremely difficult for her to care for him, particularly as his condition worsened. At the same time I was needing more neighbourly help, something she was constant in providing. Then she got sick; lung cancer. She declined quickly.
We've known for some time that her cancer was terminal. That's where the irony arises. This strong, powerful woman, this mother hen, this woman who cared for me was supposed to live, while I was supposed to die. Yet here I am, almost six years past diagnosis, three years past my due date, still alive, still plugging along. She has left this earth. Her husband, no longer able to live alone, has gone to a care home where I suspect he will begin a rapid decline, not because of the home but because he will have lost his way in life. Yet here I remain, still counting my days.
Thursday, 6 September 2018
Don't Give Me A Miracle
I don't believe in miracles. I don't believe some unseen hand in the sky will come down to cure me with a touch. There is a simple reason for this. Notwithstanding that unrealistic miracle assessment, should something such as that happen, should I suddenly be cured of ALS, that simply opens the door for something else to end my life, perhaps a heart attack, or a car accident, or cancer. To pray for a miracle cure to ALS is foolish. Perhaps one day there will be a treatment or even a cure. As for today, I will live the best life I can in my circumstances.
The previous paragraph does not mean I will passively accept all that ALS is doing and has done to me. I will continue to rage at the dying of the light, something I would do no matter how my life was coming to a close. I will continue to decry the depredations of this disease. I will continue to beg for financial support for myself, for the Alberta ALS Society, for ALS research in general. Next year, if I am still about, I will once again be at Betty's Run, once again asking for team support.
All of this rant arises from a headline in a UK paper posted on Facebook. The headline referenced praying for a miracle. While a cure for ALS will be a wonderful thing, the true miracle is that focus we put on the situation today, the ongoing funding for research, the money for people like me to keep going in the face of all odds to the contrary.
If I want a miracle, it would come in the form of a lottery win, something in the extreme less likely than getting ALS. Perhaps, more modestly, it would be nice to have enough money to go on another road trip, or maybe even a cruise. Yet here I am, living a miracle, enjoying a full life while dealing with the damage along the way. In other words, other than this one little health issue, I'm doing well, leading a fairly normal life, albeit foreshortened.
My greatest concern when it comes to ALS are those lives taken too early; people like Sarah Coglianese who lives with ALS but will leave a young daughter behind.. Yet that same concern must focus on the 21 year old who dies from cystic fibrosis, the 6 year old who dies from brain cancer, or, even more sadly, the 12 year old killed by a drunk driver. There are a great many tragic causes out there. Mine is ALS. It sucks, but then again so does cystic fibrosis, cancer and drunk drivers.
It is not that I am hardened to tragedy. It is simply that I know a "miracle cure" for anything simply replaces one form of suffering with another. If I ask for a miracle, it would be for the young, for those beginning their life's journey. I am in the range of "normal" death, just a bit early. So was the person covered by that headline. I don't need to be removed from the cold hand of death. I need help while enjoying what life I have left, short or otherwise.
The previous paragraph does not mean I will passively accept all that ALS is doing and has done to me. I will continue to rage at the dying of the light, something I would do no matter how my life was coming to a close. I will continue to decry the depredations of this disease. I will continue to beg for financial support for myself, for the Alberta ALS Society, for ALS research in general. Next year, if I am still about, I will once again be at Betty's Run, once again asking for team support.
All of this rant arises from a headline in a UK paper posted on Facebook. The headline referenced praying for a miracle. While a cure for ALS will be a wonderful thing, the true miracle is that focus we put on the situation today, the ongoing funding for research, the money for people like me to keep going in the face of all odds to the contrary.
If I want a miracle, it would come in the form of a lottery win, something in the extreme less likely than getting ALS. Perhaps, more modestly, it would be nice to have enough money to go on another road trip, or maybe even a cruise. Yet here I am, living a miracle, enjoying a full life while dealing with the damage along the way. In other words, other than this one little health issue, I'm doing well, leading a fairly normal life, albeit foreshortened.
My greatest concern when it comes to ALS are those lives taken too early; people like Sarah Coglianese who lives with ALS but will leave a young daughter behind.. Yet that same concern must focus on the 21 year old who dies from cystic fibrosis, the 6 year old who dies from brain cancer, or, even more sadly, the 12 year old killed by a drunk driver. There are a great many tragic causes out there. Mine is ALS. It sucks, but then again so does cystic fibrosis, cancer and drunk drivers.
It is not that I am hardened to tragedy. It is simply that I know a "miracle cure" for anything simply replaces one form of suffering with another. If I ask for a miracle, it would be for the young, for those beginning their life's journey. I am in the range of "normal" death, just a bit early. So was the person covered by that headline. I don't need to be removed from the cold hand of death. I need help while enjoying what life I have left, short or otherwise.
Wednesday, 5 September 2018
Eyeball Health
It's been another day of exhaustion, another day of sleeping on and off in my wheelchair, watching Fargo on Netflix, then falling asleep in the middle of an episode. I did not sleep badly last night. In fact I slept right up until the HCA arrived at 10:45 am, then dozed off while she was exercising my legs. Sandra, my morning HCA, is not a fan of these exercises, nor pobably a fan of any exercises at all. I get the feeling that she is not really a fitness driven person, so she doesn't mind if I am only half there during my exercises; that way she can skip a few without my noticing.
Of course this exhaustion is all a part of the ALS game. I actually think I do rather well these days, with about 6 to 8 hours of truly wakeful time during an average day. I also think that my exercises are counterproductive when it comes to my use of energy. Once again I have decided to move the exercises to the evenings, just before bedtime, so that I can sleep off the exhaustion while still gaining the benefits.
My day yesterday was similar, except without the exercises I found myself with sufficient energy to go across the street to the optometry clinic to see about replacing my smashed up glasses. I've now noticed that the frame is pretty twisted too, with the seating canal for the lens squished in the the lens can't rest in it.
The clinic across the street was able to twist things back into reasonable shape, flue together the broken lens, then force it all back togethers somehow. My motto with these kinds of things is "Don't ask; don't tell". They happened to have an opening with the optometrist, so we checked my eyes. Odd as it may sound, my eyes appear to be one of the more healthy parts of my body. My prescription remains unchanged. I have no illnesses associated with my eyes or my vision. I can tell from experience that my night vision is still as good as it has ever been.
How I wish that the rest of my body could take the lesson from my eyeballs. Remain unchanged over time. Don't show the illnesses of aging. Keep going while the rest of me crashes to a grinding halt. Oh well, at least I will be able to see it coming when they stick the needle in me. And yes, that's a very sick joke. I think I'm going to go shopping to buy something I don't need with money I don't have.
Of course this exhaustion is all a part of the ALS game. I actually think I do rather well these days, with about 6 to 8 hours of truly wakeful time during an average day. I also think that my exercises are counterproductive when it comes to my use of energy. Once again I have decided to move the exercises to the evenings, just before bedtime, so that I can sleep off the exhaustion while still gaining the benefits.
My day yesterday was similar, except without the exercises I found myself with sufficient energy to go across the street to the optometry clinic to see about replacing my smashed up glasses. I've now noticed that the frame is pretty twisted too, with the seating canal for the lens squished in the the lens can't rest in it.
The clinic across the street was able to twist things back into reasonable shape, flue together the broken lens, then force it all back togethers somehow. My motto with these kinds of things is "Don't ask; don't tell". They happened to have an opening with the optometrist, so we checked my eyes. Odd as it may sound, my eyes appear to be one of the more healthy parts of my body. My prescription remains unchanged. I have no illnesses associated with my eyes or my vision. I can tell from experience that my night vision is still as good as it has ever been.
How I wish that the rest of my body could take the lesson from my eyeballs. Remain unchanged over time. Don't show the illnesses of aging. Keep going while the rest of me crashes to a grinding halt. Oh well, at least I will be able to see it coming when they stick the needle in me. And yes, that's a very sick joke. I think I'm going to go shopping to buy something I don't need with money I don't have.
Monday, 3 September 2018
No Coffee So Far Today
The sound of things breaking should become the background music for my life, or perhaps the music of my theme song. This morning, another cup. Yesterday, my glasses. The day before, the mirror on my hall closet. All of that would be the melody, of course, The tune would be the everpresent baseline of walls and door frames crunching from low-speed wheelchair impact. This is why I can't have nice things anymore.
Yesterday; or was it the day before, I'm losing all sense of time and space; I dropped my glasses then drove over them as I was attempting to retreat from their potential location. It's kind of like the old days when someone dropped a contact lens, one of the old, hard types. You would scream for everyone to stand still, only to hear the crunch a couple of feet to your left. Regardless, I broke my glasses.
At first it didn't seem unlivable. I could still see through the main portion of the glasses, the glass itself seemingly still adhered to itself. The frames didn't seem too much bent out of shape. Then came the moment when I went to wipe them, to clean them with my eyeglass cloth. I discovered that what once seemed firmly in place was merely a charade, a sleight of hand, a mocking of my hopes and desires. The lens came out in two pieces.
I gathered together what craft tools I could reach, that being a glue gun. Unfortunately this glue does not seem to want to hold to glass, at least not securely, certainly not enough to repair the lens. The glue I need is up on my shelf, far too high for me to reach. It's a theme, perhaps the maudlin lyrics of my them song, that most of what I need is too high, or too low, or too far for me to reach.
This morning came. I arose with frames in one hand and lens in the other. After all my Monday routine, shorn of eyewear, I carried my poor, damaged pieces gently to the kitchen table. Sandra, my Monday HCA, made sandwiches for me, maintaining a tradition Kathy had begun many moons past. I was waiting, wanting her to finish before I attempted assembling, and potentially re-gluing my glasses.
It was coffee time. Sandra had the Keurig warmed up. She was busy with her task so I figured I would get my own coffee cup. I opened the cupboard door. Keeping cups on the counter for myself is a long lost battle with my HCA's, there having been so many new ones that telling them, then having them forget, then telling them again only to have them forget again, has worn me to a nub. The cup, in the cupboard, looked eminently reachable with my grabby stick. I grabbed, only to discover that what I thought was the handle wasn't. The cup came crashing down.
I still haven't had my coffee.
Yesterday; or was it the day before, I'm losing all sense of time and space; I dropped my glasses then drove over them as I was attempting to retreat from their potential location. It's kind of like the old days when someone dropped a contact lens, one of the old, hard types. You would scream for everyone to stand still, only to hear the crunch a couple of feet to your left. Regardless, I broke my glasses.
At first it didn't seem unlivable. I could still see through the main portion of the glasses, the glass itself seemingly still adhered to itself. The frames didn't seem too much bent out of shape. Then came the moment when I went to wipe them, to clean them with my eyeglass cloth. I discovered that what once seemed firmly in place was merely a charade, a sleight of hand, a mocking of my hopes and desires. The lens came out in two pieces.
I gathered together what craft tools I could reach, that being a glue gun. Unfortunately this glue does not seem to want to hold to glass, at least not securely, certainly not enough to repair the lens. The glue I need is up on my shelf, far too high for me to reach. It's a theme, perhaps the maudlin lyrics of my them song, that most of what I need is too high, or too low, or too far for me to reach.
This morning came. I arose with frames in one hand and lens in the other. After all my Monday routine, shorn of eyewear, I carried my poor, damaged pieces gently to the kitchen table. Sandra, my Monday HCA, made sandwiches for me, maintaining a tradition Kathy had begun many moons past. I was waiting, wanting her to finish before I attempted assembling, and potentially re-gluing my glasses.
It was coffee time. Sandra had the Keurig warmed up. She was busy with her task so I figured I would get my own coffee cup. I opened the cupboard door. Keeping cups on the counter for myself is a long lost battle with my HCA's, there having been so many new ones that telling them, then having them forget, then telling them again only to have them forget again, has worn me to a nub. The cup, in the cupboard, looked eminently reachable with my grabby stick. I grabbed, only to discover that what I thought was the handle wasn't. The cup came crashing down.
I still haven't had my coffee.
Sunday, 2 September 2018
A Pain In The Arms
And another say seamlessly and quietly melds into the day gone before, just as this one will likely meld into the day to follow. I\m losing track, spending long, wasted stretches of time idly in front of my TV, watching pointless shows on Netflix which have nothing to do with my reality, or pretty much anyone's reality who's not in the Mob or some cartel or other. I am wasting time, an odd thing to do when I have so little of it remaining.
My social life has gone all to hell. I still have people coming over, just not as often as they used to. There are those who I can count on to drop by, given a couple days advance notice. There are those who I know will drop by; I just don't know when. Some weeks are busy, mostly around dinner. Perhaps that's a good thing given that this time of days is when I seem to have my best energy, my most abundant strength.
Speaking of strength, Friday night was brutal. Not only were my arms attacked with this incredible weakness, they were also being ravaged by this severe muscle pain in the remaining muscles of my upper arms. I went to bed, hoping I could sleep it out. Only the pain got worse as night wore on. Finally, at about 2:00 am, I could find no restful position against the pervading pain. I thought to myself, "Tylenol. No; Percocet!" Then I realised I couldn't open the drawer on my night table wherein the drugs lay, let along reach it at all. Then I looked again and saw my Zopiclone right there within almost easy reach as long as I used a grabbys stick. I worked at it for a while, finally gaining success. It was now 3:00 am.
Zopiclone is risky. It has an operating window of about 8 to 10 hours on me, assuming I take one 7.5 mg pill. So taking one at 3:00 am gives me a target awakening time anywhere from 11:00 am to 1:00 pm, perhaps even 2:00 pm given my level of exhaustion. It would be tough getting up if homecare came at 10:30 am, impossible if they came 9:00 am. I was in pain. I needed to sleep. I took the pill. I remember taking the pill. I remember starting to count back from 100. I don't remember 80.
The darkness took me. It took me so strongly that I missed the call from my new HCA, Gurinder, telling me that he would be there before 11:00 am. Then I missed his call from the front door to be let in. Then I missed the call from CBI wondering if I was home and alive. As usual, this was the end of things on their end. Had I been dead it might have been a day or two before anyone noticed, not that it would have bothered me. No, I was alive and woke up shortly before noon, or rather partly woke up.
I called the CBI. After much pleading and explaining, they said they would send Gurinder back at about 1:00 pm. He came, did my morning routine, then put me in my wheelchair. He left. I rolled into the kitchen, at some watermelon, then promptly fell back to sleep. Next thing I knew it was almost 3:00 pm, and the damned Zopiclone was still hitting me. I was seeing double. I was seeing things which weren't there! I could barely hold my head up.
In response, somewhere in my addled brain I thought I might do better if I was in the living room. I rolled over there, a little to the left of my normal seating. This was to become important in a moment. I parked, and promptly fell asleep. This was, of course, before I had a chance to take my wheelchair out of gear or shut it off. I awoke a few minutes later with a start as my toes were squeezed into my patio window. I had been driving while sleeping. I backed up, turned the chair off, and was gone until 5:00 pm when Kabira came for my afternoon check.
Kabira may, or may not, have made some dinner for me. I can't remember. What I do remember is her coming back at 9:00 pm, early, to put me to bed. All in all I had been awake perhaps 2 out of 24 hours, perhaps less. Even this morning I had a bit of a Zopiclone hangover. On the plus side, my arms don't hurt.
My social life has gone all to hell. I still have people coming over, just not as often as they used to. There are those who I can count on to drop by, given a couple days advance notice. There are those who I know will drop by; I just don't know when. Some weeks are busy, mostly around dinner. Perhaps that's a good thing given that this time of days is when I seem to have my best energy, my most abundant strength.
Speaking of strength, Friday night was brutal. Not only were my arms attacked with this incredible weakness, they were also being ravaged by this severe muscle pain in the remaining muscles of my upper arms. I went to bed, hoping I could sleep it out. Only the pain got worse as night wore on. Finally, at about 2:00 am, I could find no restful position against the pervading pain. I thought to myself, "Tylenol. No; Percocet!" Then I realised I couldn't open the drawer on my night table wherein the drugs lay, let along reach it at all. Then I looked again and saw my Zopiclone right there within almost easy reach as long as I used a grabbys stick. I worked at it for a while, finally gaining success. It was now 3:00 am.
Zopiclone is risky. It has an operating window of about 8 to 10 hours on me, assuming I take one 7.5 mg pill. So taking one at 3:00 am gives me a target awakening time anywhere from 11:00 am to 1:00 pm, perhaps even 2:00 pm given my level of exhaustion. It would be tough getting up if homecare came at 10:30 am, impossible if they came 9:00 am. I was in pain. I needed to sleep. I took the pill. I remember taking the pill. I remember starting to count back from 100. I don't remember 80.
The darkness took me. It took me so strongly that I missed the call from my new HCA, Gurinder, telling me that he would be there before 11:00 am. Then I missed his call from the front door to be let in. Then I missed the call from CBI wondering if I was home and alive. As usual, this was the end of things on their end. Had I been dead it might have been a day or two before anyone noticed, not that it would have bothered me. No, I was alive and woke up shortly before noon, or rather partly woke up.
I called the CBI. After much pleading and explaining, they said they would send Gurinder back at about 1:00 pm. He came, did my morning routine, then put me in my wheelchair. He left. I rolled into the kitchen, at some watermelon, then promptly fell back to sleep. Next thing I knew it was almost 3:00 pm, and the damned Zopiclone was still hitting me. I was seeing double. I was seeing things which weren't there! I could barely hold my head up.
In response, somewhere in my addled brain I thought I might do better if I was in the living room. I rolled over there, a little to the left of my normal seating. This was to become important in a moment. I parked, and promptly fell asleep. This was, of course, before I had a chance to take my wheelchair out of gear or shut it off. I awoke a few minutes later with a start as my toes were squeezed into my patio window. I had been driving while sleeping. I backed up, turned the chair off, and was gone until 5:00 pm when Kabira came for my afternoon check.
Kabira may, or may not, have made some dinner for me. I can't remember. What I do remember is her coming back at 9:00 pm, early, to put me to bed. All in all I had been awake perhaps 2 out of 24 hours, perhaps less. Even this morning I had a bit of a Zopiclone hangover. On the plus side, my arms don't hurt.
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