Katherine wants me to lose 15 pounds, an amount gained on our road trip last year, an amount of weight which she feels, if I lost it, would make a real difference in my ability to transfer out of my wheelchair. Would that this were so; I am not sure I agree with her. Besides my fear of losing weight in general, I'm fairly certain my loss in this case would not make a big difference in my ability to transfer.
Then there is the whole process of how to lose weight. With no working legs, I certainly can't walk it off. With the severe limitations I have in terms of physical energy, doing aerobic exercises or heavy arm exercises will only make my situation worse, wearing me out without causing any appreciable change in my weight. The only real way to lose weight is for me to reduce my calorie intake. The nutritionist at the ALS clinic, a woman whose fate, if left in my hands, would include an eternity on a "prunes only" diet, suggested that perhaps I should cut out my "non-nutritional" calories. This means cut out things like wine, beer and scotch. Katherine loves this idea.
As you might guess, this is a major stress point for me. I have lost a lot to ALS. I've lost my ability to stand, to walk, to stroll through the park with my grandchildren. I've lost the ability to have sex, to go sailing, to crash through the bush while hunting, to stand in the river and catch a salmon. I've lost so much. Now, the two things I love the most are at risk; eating and drinking.
There are so many PALS who envy that I can still chow down on a steak and swig back a nice cold beer. So many of them have lost this, the ability to chew, to swallow, to drink. So many of them can no longer consume calories except through a feeding tube or a straw. While I can still do this, I want to do it as much as I can. Soon enough I will lose these last two things in my physical self.
So I prevaricate, I cajole, I sidestep. I simply don't want to stop enjoying my wine and beer and scotch. I simply will not reduce my food intake; it's already dangerously low at times. I know it upsets Katherine to see all this weight on me. It upsets me to think that, soon enough, I won't be able to drink my wine, except possible through a straw. That will come all too soon.
For those of you who would suggest that I simply reduce my non-nutritional calorie intake, I ask you to try the following. Think about the something in your life you enjoy a great deal; I'm sure you can think of something. Now think about how you would feel if you were told you will only be able to do that for another 12 months, then never again. And then, finally, ask yourself how you might respond if someone said that you should do less of it, with little potential benefit, only for the possibility that you might, maybe, possibly be able to do something you can't do much of anyways.
It's a complicated thought process, filled with rationalizations, but try it. Try and see how I feel.
Thursday, 31 March 2016
Wednesday, 30 March 2016
Motivation And Energy
My total dietary intake yesterday consisted of a large piece of Carrot Cake, an orange, six pitted prunes, and two cups of coffee. By the time I finally got out of bed yesterday, it was past dinnertime. I didn't really feel like preparing any food, a situation I find myself in quite often when I am alone. It takes energy to prepare a proper meal, energy which must come from somewhere.
I usually have about 6 good hours in a typical day. By "good hours", I mean hours in which I have both the motivation and energy to do something. After that, I need to rest, sometimes for the rest of the day, other times only for an hour or so. It depends on the activity level of the day. If I am doing something intense, like going through a museum or making a big dinner, I need more rest. If I am doing light duty activity, like driving my truck, I can go for longer and rest a bit less.
Today is a good example of how all of this works. This morning I was awake at 10:30 AM; Home Care was here to help me with my shower and to do my Range of Motion Exercises, typically finishing at about 12:30 or so. This two hour window is half consumed by my getting up, going to the bathroom, having a shower, and getting dressed. This is a high energy use time for me; it takes a lot out of me. The other half is my exercises, a sort of combination low intensity and high intensity set of exercise. What this means is that by the time I am done, I've used at least one of my good hours.
Then there is breakfast, a low energy process in most cases, as I avoid cooking in this process. Cooking takes a lot out of me, so I save it for when I really want to do it. By the time I am done breakfast, and writing, it's usually about 2:00 PM or so. In my usual day, this means I have about 4 hours where I will be active enough, with enough energy, to get something done.
Let's say I have laundry to do. That takes at least a couple of hours, but it's not all energy consuming. Then there is grocery shopping. That takes a few hours, and consumes a lot of energy. So on a typical day if I go shopping then come home and do laundry, I am exhausted by 6:00 PM. I need dinner and a nap.
At that point, I'll transfer to the couch, often falling asleep for an hour or two. When I wake up, I don't want to transfer off of the couch. That takes energy, and my well is nearly dry. I need a few hours of rest before I really feel I can move. If I have to, I will, but my preference at this point is to stay put. I just sit there, like a lump, and watch TV until I finally get up enough energy to make the transfer to my wheelchair and go to bed.
I sleep. I wake up the next day. I start all over again, only with ever so slightly less energy than yesterday. Every few days I need an exhaustion day, whether or not I am active in between. It all just wears me out. It takes a lot of motivation and energy to keep going. Yet I seem to be doing it.
I usually have about 6 good hours in a typical day. By "good hours", I mean hours in which I have both the motivation and energy to do something. After that, I need to rest, sometimes for the rest of the day, other times only for an hour or so. It depends on the activity level of the day. If I am doing something intense, like going through a museum or making a big dinner, I need more rest. If I am doing light duty activity, like driving my truck, I can go for longer and rest a bit less.
Today is a good example of how all of this works. This morning I was awake at 10:30 AM; Home Care was here to help me with my shower and to do my Range of Motion Exercises, typically finishing at about 12:30 or so. This two hour window is half consumed by my getting up, going to the bathroom, having a shower, and getting dressed. This is a high energy use time for me; it takes a lot out of me. The other half is my exercises, a sort of combination low intensity and high intensity set of exercise. What this means is that by the time I am done, I've used at least one of my good hours.
Then there is breakfast, a low energy process in most cases, as I avoid cooking in this process. Cooking takes a lot out of me, so I save it for when I really want to do it. By the time I am done breakfast, and writing, it's usually about 2:00 PM or so. In my usual day, this means I have about 4 hours where I will be active enough, with enough energy, to get something done.
Let's say I have laundry to do. That takes at least a couple of hours, but it's not all energy consuming. Then there is grocery shopping. That takes a few hours, and consumes a lot of energy. So on a typical day if I go shopping then come home and do laundry, I am exhausted by 6:00 PM. I need dinner and a nap.
At that point, I'll transfer to the couch, often falling asleep for an hour or two. When I wake up, I don't want to transfer off of the couch. That takes energy, and my well is nearly dry. I need a few hours of rest before I really feel I can move. If I have to, I will, but my preference at this point is to stay put. I just sit there, like a lump, and watch TV until I finally get up enough energy to make the transfer to my wheelchair and go to bed.
I sleep. I wake up the next day. I start all over again, only with ever so slightly less energy than yesterday. Every few days I need an exhaustion day, whether or not I am active in between. It all just wears me out. It takes a lot of motivation and energy to keep going. Yet I seem to be doing it.
Tuesday, 29 March 2016
Exhaustion Day
It's just after 5:30 PM, and I'm finally out of bed for the day. I didn't stay up particularly late yesterday; I was home and in bed by 12:30 AM. It's a bit late, but definitely not beyond the Pale, nor past a typical Netflix binge time. I was asleep soon after my head hit the pillow, to waken only when the Home Care Physiotherapist came by at 11:30 AM to do an assessment of the swelling in my feet and lower legs. Her only requirement for the assessment was that I not get out of bed before she arrived, so my legs would have remained level and supported all night.
Her assessment required that I do nothing, a role I fulfilled happily, and that I not move my legs. Given my particular condition, the lack of movement was an easy task. Yet by the time the Physiotherapist was done with me, I was, or rather, I was still, exhausted. Even as she was poking, pinching, lifting, and prodding my feet and legs, I almost drifted off. When she was done with me, she headed into the other room to use the dining table as a paperwork completion zone.
By the time she came back into my bedroom, I had already fallen back into slumber. It was 1:00 PM. I dozed on and off for the rest of the afternoon, periodically waking sufficiently to go pee into my jug, but at no time waking sufficiently to feel that I could get out of bed. Finally, at around 5:00 PM, I began to seriously think about the bathroom, and thus compelled my body to do its duty.
I have days like this on an irregular basis, days where the exhaustion gets to me, days where I feel like I can sleep forever. These kinds of days have no pattern; sometimes it happens at times when I get enough sleep and sometimes when I don't, sometimes it happens after a period of busy days and sometimes it happens when I have done little or nothing. They just seem to happen.
But I am up now, having coffee, eating a piece of carrot cake. I'll be up until later this evening, when I will head back to bed, this time more than likely unable to get to sleep at all. That's the irony of this disease. When you want to, you can't. When you don't want to, you can.
Monday, 28 March 2016
Springtime Calls
It's springtime. The air warms up nicely each day. Billowing clouds of white drift their way across the horizon, wandering eastward and south, away from the Rockies, across the wide prairie. The birds chatter and chirp in my tree, battling for a mate, squabbling over territory, poking away at the pine cones hung thick and ponderous from needled branches. It's almost an obscenity, all the creatures of the field seeking mating partners; it's like on big giant animal orgy.
Road trip season is almost upon us. I think about it, about heading off in my truck, about wandering the roads of northern Saskatchewan and Manitoba, making the high trek to Flin Flon and Thompson over roads rarely traveled by any but the most hardy. There's nothing much up there but moose and mosquitoes. Yet that very wilderness appeals to me, the fact that so few go there is enticing.
Alas, while my intellectual self dreams of this adventure, my body is failing me. I think about the road trip, but my emotional and physical state are fighting me. I cannot get excited for the idea. Even the excitement takes too much out of me. I want to go, but I don't want the difficulty that comes along with the idea. I don't want the exhaustion of transfers, the fight for motel rooms that work with a wheelchair, the struggle to do something as simple as putting gas in my truck.
It's not fair. Once, just a few short months ago, I could do these things easily. Just a couple of years back, I not only had the ability, I had the money too. Before that, I had the strength, the money, and, thanks to some very fortunate career choices, the time. Now I have none of this. I think I can still travel alone; I want to try it while Katherine is in Hong Kong, to see what I can handle. But the excitement, the desire, the thrill, it all seems to be leaving me.
I'm reaching the end of this part of my life, or perhaps I've reached it already, my body willing to give it up but my spirit still fighting, my mind unwilling to accept this new reality of being home-bound. I don't want to be here. I still want to go, to see, to explore. I'm not ready to give up, to die. I want to see the open road once more, to see the distant mountains reaching before me, to smell the scents and hear the sounds of the forest, the prairie, the hills.
I want to go on the road. I don't want it to be so hard. It's calling me, like a forbidden lover, promising so much, taking so much for the promise. It calls me, demanding that I try, punishing me for the attempt. It calls me, bringing me joy, causing me pain. It calls me, costing all that I have, returning only memories, radiant, resplendent, visceral, vibrant. It calls me. Can I go?
Road trip season is almost upon us. I think about it, about heading off in my truck, about wandering the roads of northern Saskatchewan and Manitoba, making the high trek to Flin Flon and Thompson over roads rarely traveled by any but the most hardy. There's nothing much up there but moose and mosquitoes. Yet that very wilderness appeals to me, the fact that so few go there is enticing.
Alas, while my intellectual self dreams of this adventure, my body is failing me. I think about the road trip, but my emotional and physical state are fighting me. I cannot get excited for the idea. Even the excitement takes too much out of me. I want to go, but I don't want the difficulty that comes along with the idea. I don't want the exhaustion of transfers, the fight for motel rooms that work with a wheelchair, the struggle to do something as simple as putting gas in my truck.
It's not fair. Once, just a few short months ago, I could do these things easily. Just a couple of years back, I not only had the ability, I had the money too. Before that, I had the strength, the money, and, thanks to some very fortunate career choices, the time. Now I have none of this. I think I can still travel alone; I want to try it while Katherine is in Hong Kong, to see what I can handle. But the excitement, the desire, the thrill, it all seems to be leaving me.
I'm reaching the end of this part of my life, or perhaps I've reached it already, my body willing to give it up but my spirit still fighting, my mind unwilling to accept this new reality of being home-bound. I don't want to be here. I still want to go, to see, to explore. I'm not ready to give up, to die. I want to see the open road once more, to see the distant mountains reaching before me, to smell the scents and hear the sounds of the forest, the prairie, the hills.
I want to go on the road. I don't want it to be so hard. It's calling me, like a forbidden lover, promising so much, taking so much for the promise. It calls me, demanding that I try, punishing me for the attempt. It calls me, bringing me joy, causing me pain. It calls me, costing all that I have, returning only memories, radiant, resplendent, visceral, vibrant. It calls me. Can I go?
Sunday, 27 March 2016
Lahore
I try very hard not to use this blog as a political speaker's box. This blog is about my journey with ALS. It is not about the political world, the global impact of terrorism, the hypocrisy of people in power, the potential outcome of electoral processes seemingly gone wild in so many countries of the world. This blog is about my journey. Today, not so much.
Today my journey takes me through the Easter holiday. The term "holiday" is correct here. This word derives from the old English expression "holy day". It's easy to see. Back in days past, there were specific, consecrated religious days. On these days, work was not permitted. The day was set aside for celebration of a holy event. Today, Christians everywhere celebrate the Easter holy day.
Unfortunately, today is not a celebration everywhere. This day of peace for Christians is just another day for Muslim extremists in Lahore, Pakistan. These Muslim believers in violence chose this day to attack Christians in Lahore, and to specifically target women and children in their attack. They've claimed credit for it in the international press, declaring their specific intent to attack Christians on Easter.
This whole thing, this whole world that fights over religion, a battle which simply declares that my God is better than your God, leaves me continually sad. There are so many worthwhile things which we as humans can do, yet hatred, pure hatred, with no reason or judgement, seems to be one of the things which we, as a species, do so well. It is this pointless hatred which leads to massacres like Lahore.
There will be many who will declare the need for revenge, forgetting that Christ himself eschewed revenge, declaring that we should respond in peace by turning the other cheek. There will be many who will see this as another reason to fight another war. And there will be many more who will just ignore this atrocity, simply because it is in a place far away, committed against people who speak another language, whose skin is another colour, who live in a different culture.
Sadness. this is what I really feel. There are so many things in life which will cause its end; diseases, accidents, or just getting older. Violence from another human should not be one of them. Yet it continues to be that which we do best. It might be good to think about this for a moment today, as you remember the sacrifice of Christ, should that be what you do. Regardless, the only way through this mess is peace. More killing only leads to more killing. And that makes me so sad.
Today my journey takes me through the Easter holiday. The term "holiday" is correct here. This word derives from the old English expression "holy day". It's easy to see. Back in days past, there were specific, consecrated religious days. On these days, work was not permitted. The day was set aside for celebration of a holy event. Today, Christians everywhere celebrate the Easter holy day.
Unfortunately, today is not a celebration everywhere. This day of peace for Christians is just another day for Muslim extremists in Lahore, Pakistan. These Muslim believers in violence chose this day to attack Christians in Lahore, and to specifically target women and children in their attack. They've claimed credit for it in the international press, declaring their specific intent to attack Christians on Easter.
This whole thing, this whole world that fights over religion, a battle which simply declares that my God is better than your God, leaves me continually sad. There are so many worthwhile things which we as humans can do, yet hatred, pure hatred, with no reason or judgement, seems to be one of the things which we, as a species, do so well. It is this pointless hatred which leads to massacres like Lahore.
There will be many who will declare the need for revenge, forgetting that Christ himself eschewed revenge, declaring that we should respond in peace by turning the other cheek. There will be many who will see this as another reason to fight another war. And there will be many more who will just ignore this atrocity, simply because it is in a place far away, committed against people who speak another language, whose skin is another colour, who live in a different culture.
Sadness. this is what I really feel. There are so many things in life which will cause its end; diseases, accidents, or just getting older. Violence from another human should not be one of them. Yet it continues to be that which we do best. It might be good to think about this for a moment today, as you remember the sacrifice of Christ, should that be what you do. Regardless, the only way through this mess is peace. More killing only leads to more killing. And that makes me so sad.
Saturday, 26 March 2016
Grumpy, That's Me
I woke up this morning feeling generally unhappy; angry at life, the world, the whole damn thing. I have a bit of a reputation for being curmudgeonly on occasion, and this morning I would have lived up to it completely. So I stayed in bed for a while, a long while, just dozing, ignoring the world around me, trying hard not to think about things.
It was birthdays that got to me. Today is my daughter's birthday; I am so happy for her, and happy that she is my daughter. I won't be there for her birthday today and I regret that. But I will see her soon.
In a few days my ex-wife will turn 60; all of my children are making the trip to Abbotsford to spend this special day with her. Two of them have no travel; they live in the same house. One will make the trip from Victoria, and Kate will drive down from Calgary. I am jealous; only Kate made it to my 60th birthday. The others couldn't afford the trip from the coast to Calgary. But then again, I am not there for Meaghan's birthday today, and her mother is. And I almost certainly will not be able to make it to Mary or Rick's birthdays this fall. Time and money will get in the way.
The woman who used to be my Mother-In-Law turns 91 a few days after that, about 10 days from now. I congratulate her. Despite numerous health issues and physical problems, she just keeps plugging along. I, on the other hand, will, if I am lucky, turn 61 this year, a full 30 years younger. It is unlikely I will be plugging along much after that. I will never see anything close to 91.
On the happy side, my Mom will turn 84 on April 7th. It is wonderful to see her still making her way in life, getting out daily, spending time with Ray. Notwithstanding her recent diagnosis as being in the early stages of Alzheimer's, she is cheerful and laughs easily. Her happiness is what makes her a great treasure for me.
These markers of the passage of time kind of get to me. I have been marking my passage too; there was the day I could no longer walk, the day I could no longer stand, the day I could no longer make the transfer into my truck, and many other marker days. But I get upset when I think about birthdays. I don't have a lot left.
It was birthdays that got to me. Today is my daughter's birthday; I am so happy for her, and happy that she is my daughter. I won't be there for her birthday today and I regret that. But I will see her soon.
In a few days my ex-wife will turn 60; all of my children are making the trip to Abbotsford to spend this special day with her. Two of them have no travel; they live in the same house. One will make the trip from Victoria, and Kate will drive down from Calgary. I am jealous; only Kate made it to my 60th birthday. The others couldn't afford the trip from the coast to Calgary. But then again, I am not there for Meaghan's birthday today, and her mother is. And I almost certainly will not be able to make it to Mary or Rick's birthdays this fall. Time and money will get in the way.
The woman who used to be my Mother-In-Law turns 91 a few days after that, about 10 days from now. I congratulate her. Despite numerous health issues and physical problems, she just keeps plugging along. I, on the other hand, will, if I am lucky, turn 61 this year, a full 30 years younger. It is unlikely I will be plugging along much after that. I will never see anything close to 91.
On the happy side, my Mom will turn 84 on April 7th. It is wonderful to see her still making her way in life, getting out daily, spending time with Ray. Notwithstanding her recent diagnosis as being in the early stages of Alzheimer's, she is cheerful and laughs easily. Her happiness is what makes her a great treasure for me.
These markers of the passage of time kind of get to me. I have been marking my passage too; there was the day I could no longer walk, the day I could no longer stand, the day I could no longer make the transfer into my truck, and many other marker days. But I get upset when I think about birthdays. I don't have a lot left.
Friday, 25 March 2016
Why Is It "Good" Friday?
Good Friday. The day when Christians celebrate, with some solemnity, the crucifixion of Christ. Given the sorrows and pain of this even, it is a wonder that it is called Good Friday. The only real good of this painful day was that, as Christians believe, it lead to the resurrection of Christ the following Sunday.
It is another of the oddities of English which brings us to call this Good Friday. It is not known similarly in other languages. The French call it Sacred Friday. The Germans call it Sorrowful Friday. The Russians call it Passion Friday. So why do we English take such a sacred day, celebrated with such solemnity and seriousness, and call it "good"?
One might think it comes from the slow conversion of God to Good, as is thought to have happened with God Be With Ye, which, over the course of hundreds of years, became Good Bye. Would that this were true; it would help us understand such an anomaly. Unfortunately that doesn't explain all the other languages which came up with completely different terms, nor does it reflect that this day isn't dedicated to God, but to Jesus.
More likely the term "Good Friday" arose from the old English definition of the word "Good". There was a time in our linguistic history, a time nested deep in antiquity, when "good" meant "holy". For English speaking Christians, this was a good day, a holy day, a day to remember the struggles and trials of Christ as the was dragged, pushed, pulled, and even carried, along the Via Dolorosa to Calvary, there to be crucified. There was nothing good in this for Christ. Yet for Christians it remains one of the holiest days of their year, followed closely by Resurrection Sunday.
All I ask of each of you is this. Whether you are Christian, Muslim, Jew, Atheist, or whatever, please take a moment to reflect on the struggles that each of us bears, the difficulties that life gives to us all. Please take a moment to share one another's burden and remember the precariousness of life.
And please, don't ask me why it's called Easter, at least in English.
It is another of the oddities of English which brings us to call this Good Friday. It is not known similarly in other languages. The French call it Sacred Friday. The Germans call it Sorrowful Friday. The Russians call it Passion Friday. So why do we English take such a sacred day, celebrated with such solemnity and seriousness, and call it "good"?
One might think it comes from the slow conversion of God to Good, as is thought to have happened with God Be With Ye, which, over the course of hundreds of years, became Good Bye. Would that this were true; it would help us understand such an anomaly. Unfortunately that doesn't explain all the other languages which came up with completely different terms, nor does it reflect that this day isn't dedicated to God, but to Jesus.
More likely the term "Good Friday" arose from the old English definition of the word "Good". There was a time in our linguistic history, a time nested deep in antiquity, when "good" meant "holy". For English speaking Christians, this was a good day, a holy day, a day to remember the struggles and trials of Christ as the was dragged, pushed, pulled, and even carried, along the Via Dolorosa to Calvary, there to be crucified. There was nothing good in this for Christ. Yet for Christians it remains one of the holiest days of their year, followed closely by Resurrection Sunday.
All I ask of each of you is this. Whether you are Christian, Muslim, Jew, Atheist, or whatever, please take a moment to reflect on the struggles that each of us bears, the difficulties that life gives to us all. Please take a moment to share one another's burden and remember the precariousness of life.
And please, don't ask me why it's called Easter, at least in English.
Thursday, 24 March 2016
Another ALS Lesson
Many years ago I was told by a counselor that when my then wife talked to me about an issue or a problem, she didn't necessarily want me to jump up and fix it. She just wanted to talk about it. Over the years I have found this to be generally true, except in the cases where my ex-wife was complaining about me. She definitely always wanted me to fix myself in alignment with her expectations. I was such a disappointment to her.
These days, with my blog, I understand more about that feeling, about expressing something without wanting someone to fix it. This blog started out as therapy for me, a way of sharing my feelings and experiences as I moved through the various things which make up the ALS disease process. It was a way of venting, a way of letting go of things. In many cases, not only was I not looking for a solution, I most likely already had one underway.
This morning is a good example. I was going to write about my kitchen being messy. The mess was not the complaint, nor in particular a serious problem. It was the positive residue of a terrific dinner last night where some friends came over and let me cook for them. There are dishes cleaned in the rack, dishes cleaned in the dishwasher, all of which need to be put away. There are counters and the stove top which need to be wiped down. There are odds and ends which need clearing off.
I can do all of this, with the possible exception of emptying out the last of the dishwasher. What I wanted to write about was the fact that these simple tasks, easy enough to do, would take me longer and take more out of me that they would for anyone without ALS. It would, in no way or manner, be a complaint. I am terrified that if I complain, friends will stop coming to see me. I would hate that. Nor would it be a request for help. I have Home Care coming tomorrow; the HCA will empty the dishwasher, and probably just hand wash the few remaining dishes.
This untidy kitchen is not something I am asking for help with, nor solutions for. I have them in hand. My kitchen will be tidy and neat by tomorrow at lunch, either at my hands or with help from Home Care. What I really wanted to do was share the conflict of emotions, the feeling of joy I get from having people over, and the feelings when I realize it takes so much more these days to get things done. It's another reminder of my living motto, "Nothing is easy; nothing is fast."
To my friends, please, I beg of you, keep coming to visit. Let me cook. Help me make wine. Don't worry about the mess. You already do so much cleaning up after meals that there is often nothing left for me to do. I'm definitely not complaining. To people who want to suggest a solution, I have that in hand already. To those who want to know what they can do, you already know. When I need something, I ask for it. That's another lesson I have learned from ALS.
These days, with my blog, I understand more about that feeling, about expressing something without wanting someone to fix it. This blog started out as therapy for me, a way of sharing my feelings and experiences as I moved through the various things which make up the ALS disease process. It was a way of venting, a way of letting go of things. In many cases, not only was I not looking for a solution, I most likely already had one underway.
This morning is a good example. I was going to write about my kitchen being messy. The mess was not the complaint, nor in particular a serious problem. It was the positive residue of a terrific dinner last night where some friends came over and let me cook for them. There are dishes cleaned in the rack, dishes cleaned in the dishwasher, all of which need to be put away. There are counters and the stove top which need to be wiped down. There are odds and ends which need clearing off.
I can do all of this, with the possible exception of emptying out the last of the dishwasher. What I wanted to write about was the fact that these simple tasks, easy enough to do, would take me longer and take more out of me that they would for anyone without ALS. It would, in no way or manner, be a complaint. I am terrified that if I complain, friends will stop coming to see me. I would hate that. Nor would it be a request for help. I have Home Care coming tomorrow; the HCA will empty the dishwasher, and probably just hand wash the few remaining dishes.
This untidy kitchen is not something I am asking for help with, nor solutions for. I have them in hand. My kitchen will be tidy and neat by tomorrow at lunch, either at my hands or with help from Home Care. What I really wanted to do was share the conflict of emotions, the feeling of joy I get from having people over, and the feelings when I realize it takes so much more these days to get things done. It's another reminder of my living motto, "Nothing is easy; nothing is fast."
To my friends, please, I beg of you, keep coming to visit. Let me cook. Help me make wine. Don't worry about the mess. You already do so much cleaning up after meals that there is often nothing left for me to do. I'm definitely not complaining. To people who want to suggest a solution, I have that in hand already. To those who want to know what they can do, you already know. When I need something, I ask for it. That's another lesson I have learned from ALS.
Wednesday, 23 March 2016
Parking Video On YouTube
I've been looking at the YouTube video of a woman in Toronto hurtling coffee at a person after he confronted her about parking in a handicapped spot when she had no handicapped parking tag, and apparently had no handicap, other than her atrocious attitude and inability to understand why handicapped parking spots exist.
The video originally appeared on YouTube, but has subsequently been reposted on news sites and blogs around the world. The original poster, after seeing threats of violence and rape against the young woman decided to try to remove the video. He pulled it from his YouTube site but has been unable to pull it from the thousands of sites reposting it. This is the way of the Internet; once it's out there, it never goes away.
There are a number of things which could be said of this woman, many of them unkind. However she was just unfortunate enough to be caught on video, and to have behaved badly when caught. I've had to deal with this kind of thing myself, people parked illegally in handicapped spots responding poorly when confronted. That's why I don't do it anymore. I am simply not strong enough to react to a physical confrontation with someone unencumbered by a handicap.
I've had people threaten me with violence, swear at me, and just plain ignore me when asked why they parked in a handicap spot without a tag. I've heard every excuse you can imagine, from "I left the card at home" to "I'll only be a minute" to "What fucking business is it of yours". I used to have the energy to respond; not any more. It's just not worth the hassle.
I really appreciate what this young man did. He confronted someone on my behalf, on behalf of all of us who struggle with this inconsiderate illegality. Make no mistake about it; she broke the law. It may not seem like a big deal to you, but it sure is to me. I see it all the time, and I am really tired of it all.
The thing which annoys me most of all about this is that the police merely gave her a warning. She did not get a ticket. She did not get a fine. She received no actual punishment other than the temporary notoriety of public exposure, the short term impact of public shaming in a world where this kind of thing passes within a day or so. She will do this again, I guarantee it. It costs her nothing in real terms, just some embarrassment, something she will easily be able to blame on the young man who took the video. With no consequences, she has no need to change. And she won't,
The video originally appeared on YouTube, but has subsequently been reposted on news sites and blogs around the world. The original poster, after seeing threats of violence and rape against the young woman decided to try to remove the video. He pulled it from his YouTube site but has been unable to pull it from the thousands of sites reposting it. This is the way of the Internet; once it's out there, it never goes away.
There are a number of things which could be said of this woman, many of them unkind. However she was just unfortunate enough to be caught on video, and to have behaved badly when caught. I've had to deal with this kind of thing myself, people parked illegally in handicapped spots responding poorly when confronted. That's why I don't do it anymore. I am simply not strong enough to react to a physical confrontation with someone unencumbered by a handicap.
I've had people threaten me with violence, swear at me, and just plain ignore me when asked why they parked in a handicap spot without a tag. I've heard every excuse you can imagine, from "I left the card at home" to "I'll only be a minute" to "What fucking business is it of yours". I used to have the energy to respond; not any more. It's just not worth the hassle.
I really appreciate what this young man did. He confronted someone on my behalf, on behalf of all of us who struggle with this inconsiderate illegality. Make no mistake about it; she broke the law. It may not seem like a big deal to you, but it sure is to me. I see it all the time, and I am really tired of it all.
The thing which annoys me most of all about this is that the police merely gave her a warning. She did not get a ticket. She did not get a fine. She received no actual punishment other than the temporary notoriety of public exposure, the short term impact of public shaming in a world where this kind of thing passes within a day or so. She will do this again, I guarantee it. It costs her nothing in real terms, just some embarrassment, something she will easily be able to blame on the young man who took the video. With no consequences, she has no need to change. And she won't,
Tuesday, 22 March 2016
Brussels
Brussels has long been one of my favourite cities in Europe. I've had the pleasure of spending many hours wandering about the old centre of the city, exploring the shops and parks, driving around the ring one way, yet ending up going another while still finding my way back to my hotel. I've also spent many hours in the Brussels Airport, and at the train station, either catching the train to Ghent or Antwerp, and once to Paris. I've stood where the bombs went off today; I recognize places in the pictures.
Today is another one of many sad days in our history where people who seek to damage and control others use religion as their excuse. It's not just religion, however. Others have brought misery with them in their quest to destroy the capitalist system, the communist system, the democratic system, the dictatorial system. It doesn't matter the reason, the system, the time, the place; throughout human history, people have used terror to get what they wanted.
With today's example of man's inhumanity to man, there are once again calls to root out the trouble makers, to take potential terrorists, or people who look like they might be terrorists, or people of Islam because it's the cause of all this problem. Yet those very calls ignore the most simple issue in all of this. Terrorists blend in. They look like you and me. They might be your neighbour, your teacher, your bus driver, your doctor. You can't tell by looking at someone if they are a terrorist.
Nor can you tell by their religion if they are terrorists. By this measure, all Irish Catholics should have gone to prison during the 1970's. Religion doesn't turn someone into a terrorist; it simply gives someone with a desire to stamp their views on all of us a reason, a casus belli, a rationale for their violence. You can't identify a terrorist by their colour, their race, their mode of dress, their language or any other external element. You can only determine a terrorist by their actions, often too late to stop them.
So what do we do? We demonstrate peace, tolerance, understanding. We show freedom, opportunity, a reason to live in peace. We deal with these crimes as just that, criminal acts. We find those who did them, those who helped do them, those who plan to do them, and we prove these crimes in a public court of law. We do what a responsible society does. We will not vilify, or demonize. We will not sow hatred. We will get back to the business of life, of living, and honour the victims by not letting fear drive us to return terror with terror.
Today is another one of many sad days in our history where people who seek to damage and control others use religion as their excuse. It's not just religion, however. Others have brought misery with them in their quest to destroy the capitalist system, the communist system, the democratic system, the dictatorial system. It doesn't matter the reason, the system, the time, the place; throughout human history, people have used terror to get what they wanted.
With today's example of man's inhumanity to man, there are once again calls to root out the trouble makers, to take potential terrorists, or people who look like they might be terrorists, or people of Islam because it's the cause of all this problem. Yet those very calls ignore the most simple issue in all of this. Terrorists blend in. They look like you and me. They might be your neighbour, your teacher, your bus driver, your doctor. You can't tell by looking at someone if they are a terrorist.
Nor can you tell by their religion if they are terrorists. By this measure, all Irish Catholics should have gone to prison during the 1970's. Religion doesn't turn someone into a terrorist; it simply gives someone with a desire to stamp their views on all of us a reason, a casus belli, a rationale for their violence. You can't identify a terrorist by their colour, their race, their mode of dress, their language or any other external element. You can only determine a terrorist by their actions, often too late to stop them.
So what do we do? We demonstrate peace, tolerance, understanding. We show freedom, opportunity, a reason to live in peace. We deal with these crimes as just that, criminal acts. We find those who did them, those who helped do them, those who plan to do them, and we prove these crimes in a public court of law. We do what a responsible society does. We will not vilify, or demonize. We will not sow hatred. We will get back to the business of life, of living, and honour the victims by not letting fear drive us to return terror with terror.
Monday, 21 March 2016
Science Fiction Future
I am a follower of a number of scientific trends and patterns, mostly in the areas of exo-skeletal function and robotics. The whole exo-skeletal device arena, or even thought control prosthetics, offers people like me, people with failed muscles, people with paralysis, people with body form and function issues, a tool to support themselves physically until science finds a way to restore full functionality to our failed bodies.
Exo-skeletal function would be things like clamp on machine leg devices which could be actuated by brain waves, allowing me, for example, to stand, walk, and perhaps even run. These devices would supplant my dead muscles with machinery which responds to the cues of my thoughts, or perhaps even my base reflexive actions. This same technology could be used to allow people with upper body paralysis to have use of their arms, and perhaps, one day, even allow them machine assisted fine motor coordination in their hands and fingers. There could, quite possibly, even be "replacement muscles", where these machines are directly interconnected with our bodies, a bionic muscle system of sorts.
Of course it would be better if we could just find a way to defeat ALS. Medication for muscular restoration beats artificial synthesis any day, assuming that medication doesn't have a world of outrageous side effects. And even though we seem to be getting closer and closer to treatment, if not a cure, it could still be a long way off. Plus, exo-skeletal devices offer opportunities in a great many other areas, including robotics, aeronautics, space exploration, deep sea exploration; the list goes on and on.
Robotics offers someone like me a whole different approach to dealing with my illness. My life would be so much easier if I had a robot to drive my truck, or perhaps even a self-driving truck; so much easier if I had a machine to put away my groceries and get them out when I needed them; a robot to cook, assuming it could deal with my tendency to micro-manage things. That's what I really need; a robot to do the things I can no longer do. That way I wouldn't be a burden on other people. I don't mind the idea of being a burden on a robot, but I hate it when other people have to do all those things I cannot.
Today all of this is just far enough away that I will never see it. Today, it sounds like science fiction, but then again, only a few years ago the whole idea of a single hand held device which could provide communications, translation, access to global information, and even entertainment was all science fiction. Now we call it a smart phone. The future is not that far away. I'm sorry I will miss it.
Exo-skeletal function would be things like clamp on machine leg devices which could be actuated by brain waves, allowing me, for example, to stand, walk, and perhaps even run. These devices would supplant my dead muscles with machinery which responds to the cues of my thoughts, or perhaps even my base reflexive actions. This same technology could be used to allow people with upper body paralysis to have use of their arms, and perhaps, one day, even allow them machine assisted fine motor coordination in their hands and fingers. There could, quite possibly, even be "replacement muscles", where these machines are directly interconnected with our bodies, a bionic muscle system of sorts.
Of course it would be better if we could just find a way to defeat ALS. Medication for muscular restoration beats artificial synthesis any day, assuming that medication doesn't have a world of outrageous side effects. And even though we seem to be getting closer and closer to treatment, if not a cure, it could still be a long way off. Plus, exo-skeletal devices offer opportunities in a great many other areas, including robotics, aeronautics, space exploration, deep sea exploration; the list goes on and on.
Robotics offers someone like me a whole different approach to dealing with my illness. My life would be so much easier if I had a robot to drive my truck, or perhaps even a self-driving truck; so much easier if I had a machine to put away my groceries and get them out when I needed them; a robot to cook, assuming it could deal with my tendency to micro-manage things. That's what I really need; a robot to do the things I can no longer do. That way I wouldn't be a burden on other people. I don't mind the idea of being a burden on a robot, but I hate it when other people have to do all those things I cannot.
Today all of this is just far enough away that I will never see it. Today, it sounds like science fiction, but then again, only a few years ago the whole idea of a single hand held device which could provide communications, translation, access to global information, and even entertainment was all science fiction. Now we call it a smart phone. The future is not that far away. I'm sorry I will miss it.
Sunday, 20 March 2016
If, When
When I was first diagnosed with ALS, I had all kinds of "what if" questions. What if I lose this ability or that ability? What if I don't have enough money? What if I can't take care of myself? What will I do if this or that happens to me? All of these questions were based on the assumption that some things would happen with ALS, and other things might not happen.
What I didn't realize then, but certainly realize now, is that everything possible will happen with ALS, eventually, unless you are lucky enough to die sooner. The question I have learned to ask is "what happens when", not "if". What happens when I lose my ability to pick up a glass of water? What happens when I lose my ability to transfer to the toilet seat? What happens when I can't drive anymore?
The last three years have taught me that ALS takes everything, absolutely everything, leaving nothing behind but an empty shell of a body, unfortunately with a fully functioning mind. If I were one of those people who could live inside my own head, that might not be a bad thing. Look at Stephen Hawking; he has lost everything but the twitch below his left eye, and yet he writes these amazing books about the formation of the universe and regularly comments on the condition of our planet and humankind.
I have now come to realize that almost anything is possible, even with ALS. it is possible that I can live for a long time, far longer than I expected. It is possible that I will be able to communicate, both in writing and through a synthetic voice, long after I lose my ability to speak. It is possible that I will love and be loved, even when trapped inside this failed shell that houses my brain.
The real question is what I will do when I get there. It's not an"if"; it's a "when". I will almost certainly get there, to the place where I can no longer hold up a wine glass, cut up a steak, swallow my own food, speak, or even write with my own hands. There are devices to make my life work, when I get there. That's when I get to the really tough question. What will I do when I get there? That's a hard thing to contemplate.
That's why I have to spend more time living in the present, not in the future. It's so much better to think about what I am going to make for dinner tonight, or tomorrow night, rather than what I might do at some potentially distant point in the future when I can no longer eat. I still have a short horizon, but I don't even think about that much these days. "When", just like "if", will take care of itself.
What I didn't realize then, but certainly realize now, is that everything possible will happen with ALS, eventually, unless you are lucky enough to die sooner. The question I have learned to ask is "what happens when", not "if". What happens when I lose my ability to pick up a glass of water? What happens when I lose my ability to transfer to the toilet seat? What happens when I can't drive anymore?
The last three years have taught me that ALS takes everything, absolutely everything, leaving nothing behind but an empty shell of a body, unfortunately with a fully functioning mind. If I were one of those people who could live inside my own head, that might not be a bad thing. Look at Stephen Hawking; he has lost everything but the twitch below his left eye, and yet he writes these amazing books about the formation of the universe and regularly comments on the condition of our planet and humankind.
I have now come to realize that almost anything is possible, even with ALS. it is possible that I can live for a long time, far longer than I expected. It is possible that I will be able to communicate, both in writing and through a synthetic voice, long after I lose my ability to speak. It is possible that I will love and be loved, even when trapped inside this failed shell that houses my brain.
The real question is what I will do when I get there. It's not an"if"; it's a "when". I will almost certainly get there, to the place where I can no longer hold up a wine glass, cut up a steak, swallow my own food, speak, or even write with my own hands. There are devices to make my life work, when I get there. That's when I get to the really tough question. What will I do when I get there? That's a hard thing to contemplate.
That's why I have to spend more time living in the present, not in the future. It's so much better to think about what I am going to make for dinner tonight, or tomorrow night, rather than what I might do at some potentially distant point in the future when I can no longer eat. I still have a short horizon, but I don't even think about that much these days. "When", just like "if", will take care of itself.
Saturday, 19 March 2016
Staying Home
I've been noticing for a while a change in me, a slow steady change which has nothing to do with losses in my body, but everything to do with ALS. I am becoming less and less of a social animal. It used to be that I was busy all the time, going here and going there, doing this and doing that. Now, given the choice between going out to some social activity or staying home to watch Season 2 of Daredevil on Netflix, the television wins.
It's not that I don't want to be with people. I am as I ever was in this regard, a person who comes to life in the company of others. It has to do with my tiredness and my willingness to expend energy. If I look at what it takes to get out, to go out; if I look at the work effort of putting on shoes, transferring to the truck, driving; if I look at what it costs to do some of these social activities; I end up deciding to stay at home.
I'm sad to say that, for so many things, the work effort is not worth the social outcome. As I recede further and further into ALS, I find I am also receding from view socially, particularly when it comes to how people respond to seeing me in the wheelchair. With my friends of long standing, they can remember, most of them, what I was like before the disease, before the chair, before the weakness. Many people in many of these social settings have no idea of who and what I once was. All they see is the crippled guy in the wheelchair.
So today, while I sit here at home alone, looking out my window at the sun, I will stay indoors. Today, I will look at the comic book lives on a TV show, rather than go out and participate in the real life which surrounds me. Today, even with a full afternoon and evening where Katherine is not with me, I will transfer from my wheelchair to my couch, and stay there, transferring back only to get dinner, and perhaps a bottle of wine.
I hate this part of ALS, but it is to be expected. Eventually I will run out of energy completely. For now, it's just getting hard to get out and have fun.
It's not that I don't want to be with people. I am as I ever was in this regard, a person who comes to life in the company of others. It has to do with my tiredness and my willingness to expend energy. If I look at what it takes to get out, to go out; if I look at the work effort of putting on shoes, transferring to the truck, driving; if I look at what it costs to do some of these social activities; I end up deciding to stay at home.
I'm sad to say that, for so many things, the work effort is not worth the social outcome. As I recede further and further into ALS, I find I am also receding from view socially, particularly when it comes to how people respond to seeing me in the wheelchair. With my friends of long standing, they can remember, most of them, what I was like before the disease, before the chair, before the weakness. Many people in many of these social settings have no idea of who and what I once was. All they see is the crippled guy in the wheelchair.
So today, while I sit here at home alone, looking out my window at the sun, I will stay indoors. Today, I will look at the comic book lives on a TV show, rather than go out and participate in the real life which surrounds me. Today, even with a full afternoon and evening where Katherine is not with me, I will transfer from my wheelchair to my couch, and stay there, transferring back only to get dinner, and perhaps a bottle of wine.
I hate this part of ALS, but it is to be expected. Eventually I will run out of energy completely. For now, it's just getting hard to get out and have fun.
Friday, 18 March 2016
More Fun With Home Care Aides
I had another bad morning with one of my Home Care Aides. Now, let me make this perfectly clear. I have, and have had, some very good HCA's. I've also had some truly bad ones. Then there are the ones in the middle, the ones who can do their job but don't really want to do the hard work, the ones who will do their best to get by with just doing enough, and no more. That's what I was dealing with this morning.
It reminds me of a line George Carlin used to use in his comedy routine. "Think of how stupid the average person is, and then realize half of them are stupider than that!" I have kind of a similar problem with care aides. It's not that they are bad people. They either cannot maintain the focus and attention to do their job properly, or they simply don't want to do it properly. Today I think I saw a bit of both.
Consider that this particular HCA comes every week. This week she has been here twice. Yet every time she comes here, I have to remind her of the routine, including asking her for a towel when I am sitting in the shower all wet. I have to explain each step of my exercises every time, even though they are the same every time. And whenever she leaves whatever room I am in, I can hear her playing on her phone.
Then there is her inability to count. My exercises require that muscles be held in position for 30 seconds in some exercises, and a minute in other exercise. This HCA seem pathologically incapable of counting consistently to 30. Sometimes it's a mad dash to the finish line, other times its a long wander through the forest. And most times she is looking off out the window, focused on anything but what she is supposed to be doing.
There are other things, like her inability to make the bed properly. You have to put the sheets on differently for a quadriplegic; they have to be loose, since I cannot use my legs to lift them. She forgets, each and every time she is here, to take out the garbage, even though it is right there in the hallway beside her when she leaves. She never tidies the kitchen, even though my care plan explicitly says this needs to be done.
So today Katherine was here, ostensibly to show her how to make the bed properly. With Katherine here, I am more willing to confront other things, knowing that I have backup if needed. So I focused on teaching her to count, and reminded her to keep her attention on the task at hand, not on whatever she was seeing out the window.
All of this upset the HCA. That's understandable, I suppose. None of us likes to be challenged directly like that, especially when we don't want to do what the challenge demands of us. So when she was finished, she called the office and asked for a supervisor to come and talk to me. That should be an interesting discussion. I can hardly wait. I hope Katherine is here for that one too. She's a ninja!
It reminds me of a line George Carlin used to use in his comedy routine. "Think of how stupid the average person is, and then realize half of them are stupider than that!" I have kind of a similar problem with care aides. It's not that they are bad people. They either cannot maintain the focus and attention to do their job properly, or they simply don't want to do it properly. Today I think I saw a bit of both.
Consider that this particular HCA comes every week. This week she has been here twice. Yet every time she comes here, I have to remind her of the routine, including asking her for a towel when I am sitting in the shower all wet. I have to explain each step of my exercises every time, even though they are the same every time. And whenever she leaves whatever room I am in, I can hear her playing on her phone.
Then there is her inability to count. My exercises require that muscles be held in position for 30 seconds in some exercises, and a minute in other exercise. This HCA seem pathologically incapable of counting consistently to 30. Sometimes it's a mad dash to the finish line, other times its a long wander through the forest. And most times she is looking off out the window, focused on anything but what she is supposed to be doing.
There are other things, like her inability to make the bed properly. You have to put the sheets on differently for a quadriplegic; they have to be loose, since I cannot use my legs to lift them. She forgets, each and every time she is here, to take out the garbage, even though it is right there in the hallway beside her when she leaves. She never tidies the kitchen, even though my care plan explicitly says this needs to be done.
So today Katherine was here, ostensibly to show her how to make the bed properly. With Katherine here, I am more willing to confront other things, knowing that I have backup if needed. So I focused on teaching her to count, and reminded her to keep her attention on the task at hand, not on whatever she was seeing out the window.
All of this upset the HCA. That's understandable, I suppose. None of us likes to be challenged directly like that, especially when we don't want to do what the challenge demands of us. So when she was finished, she called the office and asked for a supervisor to come and talk to me. That should be an interesting discussion. I can hardly wait. I hope Katherine is here for that one too. She's a ninja!
Thursday, 17 March 2016
Alzheimer's
My Mom has been diagnosed with Alzheimer's. It's early stage; so far she is exhibiting only short term forgetfulness, not memory loss per se. Once she is reminded of something, she often recalls it completely. It just slips away in the moment. Other times it doesn't come back, it's gone and truly forgotten.
Yesterday was a great example of where she is at. When she went to the neurologist on Tuesday, she and I had a talk afterwards. We discussed the diagnosis and she assured me she was happy and not overly concerned about things. She even laughed as we made a couple of rather tasteless Alzheimer jokes. Then she called me again on Wednesday, completely forgetting that she had told me about her diagnosis on Tuesday. When I reminded her, she laughed and said "I'm going to have a lot of fun with this."
In that moment, with that statement and laugh, I realized how fortunate I have been to have my Mom. It is from her I learned to find humour in life, to see things as they are and laugh at them. It is from her I learned how to move past things, move onward, move forward, regardless of what is going one around you. It is from her that I learned how to live with ALS.
I won't leave my Dad out of this either. He was a determined man, unwilling to give up in life. I get it from both sides. The difference is that my Dad saw the irony and cruelty in things. My Mom sees the oddity and humour in things. I seem to have learned from both of them. I am able to see the irony in life, but I prefer to see the humour.
My Mom will have a good time with this. For as long as she can, she will laugh and see how funny life is, how situations that could be taken with sadness can also be seen lightheartedly, how it is better to keep going with a laugh than to give up in tears. It's not that either of us is immune to the sadness. It's just that I, from my Mom, have learned how to keep it in perspective.
Yesterday was a great example of where she is at. When she went to the neurologist on Tuesday, she and I had a talk afterwards. We discussed the diagnosis and she assured me she was happy and not overly concerned about things. She even laughed as we made a couple of rather tasteless Alzheimer jokes. Then she called me again on Wednesday, completely forgetting that she had told me about her diagnosis on Tuesday. When I reminded her, she laughed and said "I'm going to have a lot of fun with this."
In that moment, with that statement and laugh, I realized how fortunate I have been to have my Mom. It is from her I learned to find humour in life, to see things as they are and laugh at them. It is from her I learned how to move past things, move onward, move forward, regardless of what is going one around you. It is from her that I learned how to live with ALS.
I won't leave my Dad out of this either. He was a determined man, unwilling to give up in life. I get it from both sides. The difference is that my Dad saw the irony and cruelty in things. My Mom sees the oddity and humour in things. I seem to have learned from both of them. I am able to see the irony in life, but I prefer to see the humour.
My Mom will have a good time with this. For as long as she can, she will laugh and see how funny life is, how situations that could be taken with sadness can also be seen lightheartedly, how it is better to keep going with a laugh than to give up in tears. It's not that either of us is immune to the sadness. It's just that I, from my Mom, have learned how to keep it in perspective.
Wednesday, 16 March 2016
Fighting The Exhaustion.
I'm really tired today. I don't really know why I am so tired. I got plenty of sleep last night. I have been getting plenty of sleep overall lately. I haven't been pushing myself to hard, not at all. The roughest things I have done lately have been making wine and my Range of Motion exercises. Yet right now I feel like I could fall asleep, and stay that way for hours.
Of course I know what it is. It's ALS. It makes me tired, all the time, sometimes worse that others. Today is a tired day. That's all there is to it. I try hard to ignore these feelings of exhaustion. I try very hard to work through them, knowing full well that they will happen regardless of what I do. I can be up and about, feeling tired, or I can take a nap and wake up in a couple of hours, feeling tired.
This kind of denial, this ignoring of the fact, is one of the ways I defeat ALS. I cannot stop the disease, but I can fight like hell to stop it from destroying every facet of my life. I'm going to be tired. That's just the way it is. I'm going to be weak. That's just the way it is. If I ignore these elements, from a psychological perspective as much as I can, if I keep going and keep trying regardless of the exhaustion, the I am the master of my life, not this damnable disease.
Most likely what I will do is take a nap or watch some TV. No matter how hard I try, eventually I have to admit reality. It doesn't mean I will stop trying. Nor does it mean I expect anything miraculous because of my efforts. I just know that when I give something up, I will likely never do it again. And when I give up trying, that will be the worst loss of all.
Of course I know what it is. It's ALS. It makes me tired, all the time, sometimes worse that others. Today is a tired day. That's all there is to it. I try hard to ignore these feelings of exhaustion. I try very hard to work through them, knowing full well that they will happen regardless of what I do. I can be up and about, feeling tired, or I can take a nap and wake up in a couple of hours, feeling tired.
This kind of denial, this ignoring of the fact, is one of the ways I defeat ALS. I cannot stop the disease, but I can fight like hell to stop it from destroying every facet of my life. I'm going to be tired. That's just the way it is. I'm going to be weak. That's just the way it is. If I ignore these elements, from a psychological perspective as much as I can, if I keep going and keep trying regardless of the exhaustion, the I am the master of my life, not this damnable disease.
Most likely what I will do is take a nap or watch some TV. No matter how hard I try, eventually I have to admit reality. It doesn't mean I will stop trying. Nor does it mean I expect anything miraculous because of my efforts. I just know that when I give something up, I will likely never do it again. And when I give up trying, that will be the worst loss of all.
Tuesday, 15 March 2016
I Can't Do Sit-Ups
It's a dull day outside, dreary grey clouds passing in a sheet across the landscape, blotting the sun, leaving dampness and chill all round. It's raining. The rain here in southern Alberta is not like the rain in other places. Here the flat-bottomed cloud drift in their ever eastward and southward dance, splish splashing rain mixed with a few snowflakes, some here, some there, wandering on their way like a drunken waitress in a two bit prairie cafe, spilling beer with each turn and twist.
It's a lazy kind of a day, so lazy that when Katherine got here at 2:30 PM I was still laying in bed, reading the news on my phone, drifting in and out of sleep as the moment chose. Even Katherine struggled to rouse me from indolence; it was a full hour before she finally convinced me to get up and get dressed. When finally induced to arise, I found I could not sit up, at least not without using my M-rail.
This is happening more and more of late, where I am laying down on my bed and find myself completely unable to move into a seated position without first rolling on my side and then using something, or someone, to pull myself upwards. The other day I was putting on my compression socks when my hand lost it's grip. In the ensuing counterbalance, I fell backwards onto the bed. There, I tried to sit up, like a normal person would try. I'm not talking about a full blown exercise-worthy sit-up. I mean just sitting up, using whatever muscles I had available. I could not do it.
Instead I rolled over onto my side, reached out for my M-rail, and pulled myself sort of vertical after a couple of tries. I wanted to do something similar after exercises yesterday, but found myself unable to reach the M-rail. So I used the edge of the mattress as a grab point, rolled myself on my side, and finally managed to get to a position where I was near sitting then once again used my M-rail to complete the transition from flopping whale to sitting orangutan. These are my new ALS Yoga poses.
It's clear I can no longer sit up on my own any more. This has been a long time coming. I have already found alternative methods and there will be more to come. It's all a part of this horrible process. But at least I am sitting up now. Oh, and I am having coffee with Bailey's. It's not all bad.
It's a lazy kind of a day, so lazy that when Katherine got here at 2:30 PM I was still laying in bed, reading the news on my phone, drifting in and out of sleep as the moment chose. Even Katherine struggled to rouse me from indolence; it was a full hour before she finally convinced me to get up and get dressed. When finally induced to arise, I found I could not sit up, at least not without using my M-rail.
This is happening more and more of late, where I am laying down on my bed and find myself completely unable to move into a seated position without first rolling on my side and then using something, or someone, to pull myself upwards. The other day I was putting on my compression socks when my hand lost it's grip. In the ensuing counterbalance, I fell backwards onto the bed. There, I tried to sit up, like a normal person would try. I'm not talking about a full blown exercise-worthy sit-up. I mean just sitting up, using whatever muscles I had available. I could not do it.
Instead I rolled over onto my side, reached out for my M-rail, and pulled myself sort of vertical after a couple of tries. I wanted to do something similar after exercises yesterday, but found myself unable to reach the M-rail. So I used the edge of the mattress as a grab point, rolled myself on my side, and finally managed to get to a position where I was near sitting then once again used my M-rail to complete the transition from flopping whale to sitting orangutan. These are my new ALS Yoga poses.
It's clear I can no longer sit up on my own any more. This has been a long time coming. I have already found alternative methods and there will be more to come. It's all a part of this horrible process. But at least I am sitting up now. Oh, and I am having coffee with Bailey's. It's not all bad.
Monday, 14 March 2016
Tray Time
I go into the kitchen to get myself a cup of coffee, an orange, some prosciutto, and some Swiss cheese. I make the coffee, and open the fridge to get milk. With the door of the fridge open, I pour a bit of milk into my coffee as it sits there on the counter. I grab the prosciutto, cheese and an orange, and put them on the counter next to my coffee cup, after which I close the fridge door.
At this point I gather up my things in both hands and all of a sudden remember that I need at least one hand for the wheelchair. So I put down my coffee and wheel over to the table with my breakfast. I go back to the kitchen and get my coffee, then bring it to the table too. Two trips instead of one. Twice I wheel into and out of my kitchen. Twice I make the rotation.
This is a big part of the reason why nothing is fast, and nothing is easy. You might suggest I get a tray that can attach to my wheelchair. Sorry. Tried that. There is no tray which attaches to the arms I have on this wheelchair. I've ordered new wheelchair arms recently. A tray might attach to them, but that means putting the tray on and off. Another stage in a never ending process.
You might suggest that I just put a tray on my lap. I do that sometimes, if I can remember to find the tray and bring it into the kitchen. It always seems to end up in the living room, put aside to keep it out of the way. So I get it, put it on my lap, and roll into the kitchen. It's here that I notice even more the slope of my lap, falling away from me as atrophied muscles grow flatter and flabbier. The tray slides off my lap, so I have to be very careful, go very slow, holding the tray while I wheel the chair.
I have a pillow that goes under the tray. It can be squished into a shape which makes the tray slope inwards, so that it doesn't fall off my lap. So now I get the pillow, try to shape it so that it holds the tray, get the tray and set it up just so on the pillow, go into the kitchen and get my stuff, then, once delivery is complete, I put the tray and pillow back into the living room, out of the way.
It's easier to just make two trips. It's not easy, it's just easier than the other way. It's not fast, it's just faster than the other way.
At this point I gather up my things in both hands and all of a sudden remember that I need at least one hand for the wheelchair. So I put down my coffee and wheel over to the table with my breakfast. I go back to the kitchen and get my coffee, then bring it to the table too. Two trips instead of one. Twice I wheel into and out of my kitchen. Twice I make the rotation.
This is a big part of the reason why nothing is fast, and nothing is easy. You might suggest I get a tray that can attach to my wheelchair. Sorry. Tried that. There is no tray which attaches to the arms I have on this wheelchair. I've ordered new wheelchair arms recently. A tray might attach to them, but that means putting the tray on and off. Another stage in a never ending process.
You might suggest that I just put a tray on my lap. I do that sometimes, if I can remember to find the tray and bring it into the kitchen. It always seems to end up in the living room, put aside to keep it out of the way. So I get it, put it on my lap, and roll into the kitchen. It's here that I notice even more the slope of my lap, falling away from me as atrophied muscles grow flatter and flabbier. The tray slides off my lap, so I have to be very careful, go very slow, holding the tray while I wheel the chair.
I have a pillow that goes under the tray. It can be squished into a shape which makes the tray slope inwards, so that it doesn't fall off my lap. So now I get the pillow, try to shape it so that it holds the tray, get the tray and set it up just so on the pillow, go into the kitchen and get my stuff, then, once delivery is complete, I put the tray and pillow back into the living room, out of the way.
It's easier to just make two trips. It's not easy, it's just easier than the other way. It's not fast, it's just faster than the other way.
Sunday, 13 March 2016
Awareness, Sadness, Loss
ALS has been in the news here in Canada for the last couple of weeks, or at least stories related to people with ALS. This last week, it was Maruil Belanger taking up the post as Honorary Speaker of the House, in the Canadian House of Parliament. It's been difficult to watch his progression. He first noticed a problem with his speech last October during the Canadian Election campaign.
His progression has been swift, as it is with most bulbar onset PALS. By November he was having a serious problem speaking, and went to see his doctors. They gave him that dreaded diagnosis, which he shared with Parliament while withdrawing his nomination for Speaker. In the last few months he has completely lost his ability to speak, lost much of the use of his hands and arms, and is well into the throws of losing the use of his legs. In just a couple of months he went from walking to needing a walking, from striding to shuffling. Yet he walked to the Speaker's Chair wearing the Speakers gown, fulfilling his dream of being Speaker, if only for a day.
The week before that, Canadian news was filled with the story of an Calgary woman who received a court order permitting a doctor assisted death. It's a quirk of Canadian law that people in Quebec have had this dispensation without recourse to the courts since last December. In that province there have been about 20 assisted deaths since implementation on December 15, 2015. The rest of Canada is waiting for a ruling from the Supreme Court, allowing only exemptions to those who apply to the courts for permission.
This brave Calgary woman had ALS. She was diagnosed in April 2013, just a few months after I was diagnosed. Her progression was similar to mine, but more rapid, or shall I say more typical. By the time she chose to end her life, she was fully paralyzed with the exception of a small bit of movement in her left hand. She could not speak, but was able to communicate by typing.
She was granted the personal exemption from the courts to allow a physician assisted death on February 29. On March 1 she followed through with the process, having a doctor assist her with the process of dying with dignity, leaving behind a life torn from her by ALS.
It's been an interesting couple of weeks for PALS all over Canada. This increasing awareness of the disease, with the Prime Minister calling for increased research for a cure, the increasing awareness of how our lives end, with the courts recognizing the pain and suffering endured by PALS; these moments of heightened awareness are rare, here in Canada or anywhere else. My wish is that we never have them again, that ALS be eradicated from the earth, that nobody ever again be placed in the position of having to choose to die because of what this disease does to them. Yet while we are still here, still in this fight, still struggling to defeat this monster, we need them. I hate this disease.
His progression has been swift, as it is with most bulbar onset PALS. By November he was having a serious problem speaking, and went to see his doctors. They gave him that dreaded diagnosis, which he shared with Parliament while withdrawing his nomination for Speaker. In the last few months he has completely lost his ability to speak, lost much of the use of his hands and arms, and is well into the throws of losing the use of his legs. In just a couple of months he went from walking to needing a walking, from striding to shuffling. Yet he walked to the Speaker's Chair wearing the Speakers gown, fulfilling his dream of being Speaker, if only for a day.
The week before that, Canadian news was filled with the story of an Calgary woman who received a court order permitting a doctor assisted death. It's a quirk of Canadian law that people in Quebec have had this dispensation without recourse to the courts since last December. In that province there have been about 20 assisted deaths since implementation on December 15, 2015. The rest of Canada is waiting for a ruling from the Supreme Court, allowing only exemptions to those who apply to the courts for permission.
This brave Calgary woman had ALS. She was diagnosed in April 2013, just a few months after I was diagnosed. Her progression was similar to mine, but more rapid, or shall I say more typical. By the time she chose to end her life, she was fully paralyzed with the exception of a small bit of movement in her left hand. She could not speak, but was able to communicate by typing.
She was granted the personal exemption from the courts to allow a physician assisted death on February 29. On March 1 she followed through with the process, having a doctor assist her with the process of dying with dignity, leaving behind a life torn from her by ALS.
It's been an interesting couple of weeks for PALS all over Canada. This increasing awareness of the disease, with the Prime Minister calling for increased research for a cure, the increasing awareness of how our lives end, with the courts recognizing the pain and suffering endured by PALS; these moments of heightened awareness are rare, here in Canada or anywhere else. My wish is that we never have them again, that ALS be eradicated from the earth, that nobody ever again be placed in the position of having to choose to die because of what this disease does to them. Yet while we are still here, still in this fight, still struggling to defeat this monster, we need them. I hate this disease.
Saturday, 12 March 2016
It's Just A Matter Of Time
I was thinking this morning, as I got ready to get up and our of bed, how much this process has changed for me over the last few years, and at the same time, how little. Getting up is much the same as it has always been. I wake up, slowly sit up, then swing my legs over the side of the bed. It has ever been thus, but this is where the similarity ends.
In the past, I would stand and walk to the bathroom. Now, I transfer to a wheelchair and wheel to the bathroom. Bathroom has almost always immediately followed getting out of bed. That has not changed. How I get there has changed dramatically, and how I engage the process of morning ablutions has also changed dramatically. Different, but the same.
Dressing myself is where the real dramatic change has taken place. The only thing which even vaguely resembles how it was in the past is the fact that I sit down to put on my socks. And even that process has changed, with the addition of compression socks into my life. You put them on in a way that hardly resembles the past process of socking up.
It night, when I go to bed, is when I notice these changes most clearly. Four years ago, I would take off my jeans and pull off my shirt while standing, then sit on the edge of bed to take my socks off. Three years ago, I would pull myself vertical out of my wheelchair, sit on the bed, slide off my jeans, pull off my shirt, and take of my socks.
Two years ago, I could no longer stand, so I did a lift and pivot transfer from my wheelchair on the the edge of my bed. Because I could no longer lift my legs at all, I would wiggle out of my jeans, then fight to haul off my compression socks, the latest addition to my ALS wardrobe. Then my shirt, after which I would lift and drag my legs from the seated position onto my bed.
A year ago I discovered I could no longer do the lift and pivot transfer. It was either the sling, or a transfer board. So I began to use the transfer board to get onto the bed. Then it was a full scale fight to wiggle out of jeans and socks. The easy part was, as it still is, pulling off my shirt. After disrobing, I still had to drag my legs up and onto the bed.
Of late I have noticed something perhaps a bit more disturbing. The transfer board is becoming increasingly difficult. The uphill pull of perhaps 24 inches, dragging my body out of the wheelchair and onto the bed, is becoming an ever building challenge. I'm not sure how long I will be able to do this, to make the transfer with the transfer board, never mind the fight for getting dressed.
One day, sooner or later, the sling will be my only option. Initially I will be able to do it on my own, but not for long. Eventually I will need help, getting into and out of bed. getting dressed or undressed. Eventually I will lose all the strength in my arms, leaving me completely unable to care for myself. Someone else will lift and drag my legs, position my feet, adjust my head on my pillow. It's just a matter of time.
In the past, I would stand and walk to the bathroom. Now, I transfer to a wheelchair and wheel to the bathroom. Bathroom has almost always immediately followed getting out of bed. That has not changed. How I get there has changed dramatically, and how I engage the process of morning ablutions has also changed dramatically. Different, but the same.
Dressing myself is where the real dramatic change has taken place. The only thing which even vaguely resembles how it was in the past is the fact that I sit down to put on my socks. And even that process has changed, with the addition of compression socks into my life. You put them on in a way that hardly resembles the past process of socking up.
It night, when I go to bed, is when I notice these changes most clearly. Four years ago, I would take off my jeans and pull off my shirt while standing, then sit on the edge of bed to take my socks off. Three years ago, I would pull myself vertical out of my wheelchair, sit on the bed, slide off my jeans, pull off my shirt, and take of my socks.
Two years ago, I could no longer stand, so I did a lift and pivot transfer from my wheelchair on the the edge of my bed. Because I could no longer lift my legs at all, I would wiggle out of my jeans, then fight to haul off my compression socks, the latest addition to my ALS wardrobe. Then my shirt, after which I would lift and drag my legs from the seated position onto my bed.
A year ago I discovered I could no longer do the lift and pivot transfer. It was either the sling, or a transfer board. So I began to use the transfer board to get onto the bed. Then it was a full scale fight to wiggle out of jeans and socks. The easy part was, as it still is, pulling off my shirt. After disrobing, I still had to drag my legs up and onto the bed.
Of late I have noticed something perhaps a bit more disturbing. The transfer board is becoming increasingly difficult. The uphill pull of perhaps 24 inches, dragging my body out of the wheelchair and onto the bed, is becoming an ever building challenge. I'm not sure how long I will be able to do this, to make the transfer with the transfer board, never mind the fight for getting dressed.
One day, sooner or later, the sling will be my only option. Initially I will be able to do it on my own, but not for long. Eventually I will need help, getting into and out of bed. getting dressed or undressed. Eventually I will lose all the strength in my arms, leaving me completely unable to care for myself. Someone else will lift and drag my legs, position my feet, adjust my head on my pillow. It's just a matter of time.
Friday, 11 March 2016
Good Fingers
I've been having a lot of trouble with my left arm and shoulder over the last couple of days. It all started sometime last Monday, where my whole left side simply refused to function properly. I could move my arms and shoulder, but it was slow, lagging, uncoordinated. It got better on Tuesday and Wednesday, but last night it started to be troublesome again, and this morning while doing Range of Motion exercises, I was very stiff on my left side.
This is the way with ALS in my version. Failure of the muscles doesn't happen suddenly, or in a straight line. It starts with stiffness, clumsiness. Then it progresses to weakness and loss of ability. Then end result of the progressive weakness is total failure. For me, it has consistently started on my left side, then progressed to the same muscles on my right side. My right arm is stiff and clumsy these days, and painful too. My right side is officially joining my left in the ALS dance.
The odd thing is that even with complete failure in my legs, I can still move my toes in both my feet. Admittedly that movement is getting weaker and weaker, but it's still there. I can't explain why all the other muscles in my legs are finished, yet the one small muscle set which moves my toes in a scrunching motion is still functioning, better on the right than on the left. It's just the way it is with this odd illness.
In my arms, I am hoping that the whole "toe" thing happens with my fingers. Even though they shake, even though they may be weak, I am hoping they will type until the very end. As my speech weakens, I will find more of my voice in the keyboard. For now, I am good enough. I want to be that way for a long time to come.
This is the way with ALS in my version. Failure of the muscles doesn't happen suddenly, or in a straight line. It starts with stiffness, clumsiness. Then it progresses to weakness and loss of ability. Then end result of the progressive weakness is total failure. For me, it has consistently started on my left side, then progressed to the same muscles on my right side. My right arm is stiff and clumsy these days, and painful too. My right side is officially joining my left in the ALS dance.
The odd thing is that even with complete failure in my legs, I can still move my toes in both my feet. Admittedly that movement is getting weaker and weaker, but it's still there. I can't explain why all the other muscles in my legs are finished, yet the one small muscle set which moves my toes in a scrunching motion is still functioning, better on the right than on the left. It's just the way it is with this odd illness.
In my arms, I am hoping that the whole "toe" thing happens with my fingers. Even though they shake, even though they may be weak, I am hoping they will type until the very end. As my speech weakens, I will find more of my voice in the keyboard. For now, I am good enough. I want to be that way for a long time to come.
Thursday, 10 March 2016
$40 Urine Containment Vessel
I broke my jug last night, my urine containment vessel to be more exact. Actually I broke the lid, not the jug itself. I had to go pee last night, something that happens to all of us at some point. So I reached for my jug, did what I had to do, then went to return it to the dresser. Except I missed, or at least didn't get it all the way onto the dresser surface, and down it went. Fortunately there was no apparent spillage, not that I could see. Unfortunately I need to replace the jug, or, if possible, the lid alone.
This annoys me on so many levels. First of all, why the hell do I need to go pee into a jug at night? Of course the answer to that is so that I can avoid transferring to and from my wheelchair multiple times in the night. I could do as others do and just get up in the night. But if you have ever seen what it takes for me to get in and out of bed, you would understand why that is a non-starter. And the root cause of all of this is ALS.
Then there is the cost of these things. This is not your ordinary jug; it is a hospital grade urine containment system. That means it is sturdy, durable, and designed to reduce odor. It also means a simple plastic jug costs about $40. Part of the cost is the catheter tube which comes with it, something I don't need yet. Sure, I can look for a cheaper jug. I have looked for a cheaper jug. But I drop this thing on a regular basis, so I want to be sure I have something which can take the beating. The last thing I want to risk is having it break and leak all over my bedroom floor. Even when the lid broke last night, there was no visible leakage thanks to the jug design.
On top of the cost, there is the effort involved in going out to get a replacement. You can't just by these in the local Pharmasave. I have to go across town to a specific medical supply store, the kind which sells ostomy supplies, where they carry this kind of medical equipment, because that's what it is, medical equipment.
I will look to Katherine to help me with this, to go with me to the store, to find a less expensive way to solve this problem. Most likely the only, and best way to solve this problem is simply to make the drive, and buy it. Or get up several times a night, make the wheelchair transfer and go to the bathroom. It's probably worth the $40 no to have to do that.
This annoys me on so many levels. First of all, why the hell do I need to go pee into a jug at night? Of course the answer to that is so that I can avoid transferring to and from my wheelchair multiple times in the night. I could do as others do and just get up in the night. But if you have ever seen what it takes for me to get in and out of bed, you would understand why that is a non-starter. And the root cause of all of this is ALS.
Then there is the cost of these things. This is not your ordinary jug; it is a hospital grade urine containment system. That means it is sturdy, durable, and designed to reduce odor. It also means a simple plastic jug costs about $40. Part of the cost is the catheter tube which comes with it, something I don't need yet. Sure, I can look for a cheaper jug. I have looked for a cheaper jug. But I drop this thing on a regular basis, so I want to be sure I have something which can take the beating. The last thing I want to risk is having it break and leak all over my bedroom floor. Even when the lid broke last night, there was no visible leakage thanks to the jug design.
On top of the cost, there is the effort involved in going out to get a replacement. You can't just by these in the local Pharmasave. I have to go across town to a specific medical supply store, the kind which sells ostomy supplies, where they carry this kind of medical equipment, because that's what it is, medical equipment.
I will look to Katherine to help me with this, to go with me to the store, to find a less expensive way to solve this problem. Most likely the only, and best way to solve this problem is simply to make the drive, and buy it. Or get up several times a night, make the wheelchair transfer and go to the bathroom. It's probably worth the $40 no to have to do that.
Wednesday, 9 March 2016
I'm Not Going
I have made a difficult decision, a decision I have been contemplating for a while now. It's about Katherine. I have decided I will not go to Hong Kong with her, not even for a week, just a portion of her planned one month visit with family and friends. This has been a difficult decision for me, one made with plenty of input from Katherine and many others.
It's not that I don't want to go; I do, desperately. It's not a money thing; with the room on my remaining credit card and support from others, I can most likely make it work monetarily. It's not because Katherine doesn't want me to go. She hasn't said that at all. In fact she assures me that if I went with her, she would take that week and devote it to looking after me, to ensuring I got to see Hong Kong.
The real reason behind this decision is that I am now convinced that Katherine needs a break from me. Certainly we will miss each other very much during that one month apart, but I am convinced she needs to do this trip on her own, or at least with her sister.
There are a couple of things which have lead me to this point. Katherine, for example, has pointed out that most of her friends and family speak Cantonese only, meaning that were I to meet any of them, or go to any gathering with them, no English would be spoken. While that doesn't bother me too much, it would put Katherine in the position of constantly having to be the interpreter, an added role to the work she already does in ensuring I am enjoying myself when we travel.
Hong Kong itself presents challenges for a wheelchair. While most of the transit is wheelchair accessible, the streets are crowded, many without proper sidewalks. Katherine is quite concerned that I would not be able to get around much in the city beyond those spaces designed for wheelchair access. Many of the places she would like to show me would probably be inaccessible.
I really would like to go to Hong Kong, but not this time. I would like to think it might happen at some future date, but I see that as unlikely. I have to think about what I will do without her, while she is away. It will be rough without her. But no matter how much I want to go with her, I have decided not to go.
It's not that I don't want to go; I do, desperately. It's not a money thing; with the room on my remaining credit card and support from others, I can most likely make it work monetarily. It's not because Katherine doesn't want me to go. She hasn't said that at all. In fact she assures me that if I went with her, she would take that week and devote it to looking after me, to ensuring I got to see Hong Kong.
The real reason behind this decision is that I am now convinced that Katherine needs a break from me. Certainly we will miss each other very much during that one month apart, but I am convinced she needs to do this trip on her own, or at least with her sister.
There are a couple of things which have lead me to this point. Katherine, for example, has pointed out that most of her friends and family speak Cantonese only, meaning that were I to meet any of them, or go to any gathering with them, no English would be spoken. While that doesn't bother me too much, it would put Katherine in the position of constantly having to be the interpreter, an added role to the work she already does in ensuring I am enjoying myself when we travel.
Hong Kong itself presents challenges for a wheelchair. While most of the transit is wheelchair accessible, the streets are crowded, many without proper sidewalks. Katherine is quite concerned that I would not be able to get around much in the city beyond those spaces designed for wheelchair access. Many of the places she would like to show me would probably be inaccessible.
I really would like to go to Hong Kong, but not this time. I would like to think it might happen at some future date, but I see that as unlikely. I have to think about what I will do without her, while she is away. It will be rough without her. But no matter how much I want to go with her, I have decided not to go.
Tuesday, 8 March 2016
Adam Went Home
Adam's gone home. Once again my small apartment is my own quiet domain, at least until Katherine walks in the door. At that point I am hustled up, organized, and ordered into action. Of course at the same time, as I sit here enjoying my coffee, she is clattering about doing dishes, cleaning up, arranging. So I am not really alone. My apartment is not really quiet, nor is it really my own domain.
Adam is a terrific guest, respectful, quiet, helpful. Between him and Katherine, I've not been able to enter my own kitchen once in the last week. He's bought groceries and liquor, all of which we've managed to consume in short order. He put a tankful of gas into my truck, a non-trivial purchase I can assure you. He helped with the laundry, and even stripped the sheets of his bed as he left this morning. And to top it all off, rather than permit me to get up in the morning to drive him to the airport, and rather than let Katherine fulfill her offer to do the same, he got a cab this morning, leaving me to sleep, a rest all too important for me.
I don't think that I have ever been that good a guest. I've certainly never helped him with chores while visiting at his home. I've perhaps put a few dishes in the dishwasher, but not many. He has been kind enough to let me cook, or at least help make a dinner in his home, but nowhere near the amount of work he put in to make it easier for me to have him as a guest. I think the only thing which I could claim even a close equality is in the purchase of a few groceries and liquor. Even then, when I was visiting him, I think he found a way to pay me for this small contribution.
It was great having him here; I will miss him. Yet as he said himself, guests are like fish; they need to be removed after a few days. Even so, here I am not more than a few hours after his departure, trying to arrange for my brother Peter to come visit. Here we were, Adam and I, off up to Edmonton for a day during his stay, so we could see my brother Jim. I am lucky to have family like this, people who will forgive my transgressions, knowing me for a lifetime. As things get worse, I am learning more and more who they really are, and how they will be there for me.
Adam is a terrific guest, respectful, quiet, helpful. Between him and Katherine, I've not been able to enter my own kitchen once in the last week. He's bought groceries and liquor, all of which we've managed to consume in short order. He put a tankful of gas into my truck, a non-trivial purchase I can assure you. He helped with the laundry, and even stripped the sheets of his bed as he left this morning. And to top it all off, rather than permit me to get up in the morning to drive him to the airport, and rather than let Katherine fulfill her offer to do the same, he got a cab this morning, leaving me to sleep, a rest all too important for me.
I don't think that I have ever been that good a guest. I've certainly never helped him with chores while visiting at his home. I've perhaps put a few dishes in the dishwasher, but not many. He has been kind enough to let me cook, or at least help make a dinner in his home, but nowhere near the amount of work he put in to make it easier for me to have him as a guest. I think the only thing which I could claim even a close equality is in the purchase of a few groceries and liquor. Even then, when I was visiting him, I think he found a way to pay me for this small contribution.
It was great having him here; I will miss him. Yet as he said himself, guests are like fish; they need to be removed after a few days. Even so, here I am not more than a few hours after his departure, trying to arrange for my brother Peter to come visit. Here we were, Adam and I, off up to Edmonton for a day during his stay, so we could see my brother Jim. I am lucky to have family like this, people who will forgive my transgressions, knowing me for a lifetime. As things get worse, I am learning more and more who they really are, and how they will be there for me.
Monday, 7 March 2016
Laid Off
Another of my friends got laid off today. It's happening a lot here in Calgary, a result of the fall in global oil prices. I've seen a few of my friends lose their jobs, and it's been going on for a while. Some have found other jobs, some have moved away to other cities where work is to be had, others are still here and still looking for work.
They say a recession is when someone else loses their job, and a depression when you lose your job. That small witticism is true in more than just an economic sense. Most of us find a lot of our identity in our jobs. We find purpose in our work, a reason to get up and go each day. I know I did. It's not that I was all about my work. I just know that working is a good thing, not just for the money but for the sense of being a contributor to society.
It's an awful thing when someone tells you that you are no longer needed at your workplace, for whatever reason. It can be something as clear as an economy hemorrhaging jobs, like right now in Calgary, or something as muddled as a change in corporate strategy or organization where this is no clear reason why you were picked to stay or go. Either way, you end up out in the cold, with no income, with no reason to get up in the morning, with no apparent purpose.
It was like this for me when I could no longer work. At first I appreciated the chance to rest; working was getting too exhausting for me and I knew I had limited time left. Then, after a few weeks, I really began to notice the impact of not working, the lack of focus and purpose. It had little to do with who I was, and everything to do with what was happening to me. Of course, that was ALS at work, but nonetheless, not working doesn't really work for me, nor for most other people I know. We want to work. We need the money and just as importantly, we need the reason to get up and keep going.
They say a recession is when someone else loses their job, and a depression when you lose your job. That small witticism is true in more than just an economic sense. Most of us find a lot of our identity in our jobs. We find purpose in our work, a reason to get up and go each day. I know I did. It's not that I was all about my work. I just know that working is a good thing, not just for the money but for the sense of being a contributor to society.
It's an awful thing when someone tells you that you are no longer needed at your workplace, for whatever reason. It can be something as clear as an economy hemorrhaging jobs, like right now in Calgary, or something as muddled as a change in corporate strategy or organization where this is no clear reason why you were picked to stay or go. Either way, you end up out in the cold, with no income, with no reason to get up in the morning, with no apparent purpose.
It was like this for me when I could no longer work. At first I appreciated the chance to rest; working was getting too exhausting for me and I knew I had limited time left. Then, after a few weeks, I really began to notice the impact of not working, the lack of focus and purpose. It had little to do with who I was, and everything to do with what was happening to me. Of course, that was ALS at work, but nonetheless, not working doesn't really work for me, nor for most other people I know. We want to work. We need the money and just as importantly, we need the reason to get up and keep going.
Sunday, 6 March 2016
Not So Cheerful
I don't feel like writing today, yet here I am, staring at the entry screen for my blog. It's here that I am compelled, constantly, to write about living with ALS. This is perhaps the most difficult thing to say, that I am living with this disease, not dying from it. I see today that another pALS has made the decision to leave this life. That's the dying part. I want to live as long as I can, but I will, without doubt, die from this illness within the next couple of years.
This most recent ruling in Alberta, the Physician Assisted Dying ruling, means that I won't have to guess about when that end of life comes. It won't be an issue of trying to live as long as I can while keeping in mind that I have to be able to end my life on my own. With PAD, I can stay longer, and worry less about timing my departure. I won't need my own strength, my own hands, my own arms, to do what will need to be done on my last day.
Yet even thinking about this makes me depressed. I don't want to go through all of this. It's no fun waking up in the morning feeling exhausted after sleeping all night. And it isn't even morning when I wake up. Often it's afternoon. I suppose this is a sense developing out of the realization that soon, very soon, I will no longer be able to get myself into my truck. I will lose that freedom, that independence which is so much a part of my life.
I need to cheer up. It's Adam's birthday today. He is here, visiting, in my home, today. The least I can do is make his day lighter, brighter and better. We'll make a roast lamb for dinner, along with a Greek Salad. Gifts have been given, salutations have been made. It's time to stop writing and start living. I'll get there. I'll cheer up. Then I'll do laundry.
As my Dad used to say, "Cheer up, things could be worse. So I cheered up and sure as shit things got worse."
This most recent ruling in Alberta, the Physician Assisted Dying ruling, means that I won't have to guess about when that end of life comes. It won't be an issue of trying to live as long as I can while keeping in mind that I have to be able to end my life on my own. With PAD, I can stay longer, and worry less about timing my departure. I won't need my own strength, my own hands, my own arms, to do what will need to be done on my last day.
Yet even thinking about this makes me depressed. I don't want to go through all of this. It's no fun waking up in the morning feeling exhausted after sleeping all night. And it isn't even morning when I wake up. Often it's afternoon. I suppose this is a sense developing out of the realization that soon, very soon, I will no longer be able to get myself into my truck. I will lose that freedom, that independence which is so much a part of my life.
I need to cheer up. It's Adam's birthday today. He is here, visiting, in my home, today. The least I can do is make his day lighter, brighter and better. We'll make a roast lamb for dinner, along with a Greek Salad. Gifts have been given, salutations have been made. It's time to stop writing and start living. I'll get there. I'll cheer up. Then I'll do laundry.
As my Dad used to say, "Cheer up, things could be worse. So I cheered up and sure as shit things got worse."
Saturday, 5 March 2016
Truck Seat Troubles
We're back from Edmonton, after a terrific visit with my brother Jim. Actually Adam got most of the visit. I pretty much collapsed after dinner and headed to bed at 8:00 PM. It wasn't so much sleep exhaustion as it was body exhaustion. I just needed to stop moving about for while. So Adam and Jim got me to the hotel, then went back to Jim's place for a nice evening of catching up.
The body exhaustion seemed to stay with me this morning. Driving was not an issue, but getting into the truck proved to be a real problem. I made three attempts to transfer up that last 2 inches from my wheelchair to the lift seat on my truck, only to fail on all three. In the end, Adam had to give me a hand, boosting my efforts, heaving me onto the lift seat. From there on, all was easy, sort of.
This may be a pre-cursor, a warning sign that my solo attempts at getting in and out of the truck are coming to an end. As my friend Mike noted a couple of years back, it will more likely be my ability to get into the truck that curtails my driving, much more than any ability to drive. As you might guess, I am somewhat less than happy about this outcome.
With Adam's help, I got in and easily made the three hour drive from Edmonton to Calgary. We stopped for the required coffee and rest break at Red Deer, halfway between the two, but only for about 10 minutes. Driving the road was easy, with clear skies, warm air, and visibility to the far edge of an endless prairie horizon. The highway is almost arrow straight for most of the trip, meaning I had barely a steering wheel turn for the whole of it. While I am tired after driving for three hours, my body seems to be recovering just fine.
I'm going to try the self-lift later today; we are headed out for a potluck dinner at a friend's place. It will be interesting to see if I can make it, make the lift from chair to seat. I don't want this to be the last time, not yet. I know it's coming, I just wish it might hold off for a bit. Of course, that is what I have wished for every change in this journey; just hold off a little bit longer. Please.
The body exhaustion seemed to stay with me this morning. Driving was not an issue, but getting into the truck proved to be a real problem. I made three attempts to transfer up that last 2 inches from my wheelchair to the lift seat on my truck, only to fail on all three. In the end, Adam had to give me a hand, boosting my efforts, heaving me onto the lift seat. From there on, all was easy, sort of.
This may be a pre-cursor, a warning sign that my solo attempts at getting in and out of the truck are coming to an end. As my friend Mike noted a couple of years back, it will more likely be my ability to get into the truck that curtails my driving, much more than any ability to drive. As you might guess, I am somewhat less than happy about this outcome.
With Adam's help, I got in and easily made the three hour drive from Edmonton to Calgary. We stopped for the required coffee and rest break at Red Deer, halfway between the two, but only for about 10 minutes. Driving the road was easy, with clear skies, warm air, and visibility to the far edge of an endless prairie horizon. The highway is almost arrow straight for most of the trip, meaning I had barely a steering wheel turn for the whole of it. While I am tired after driving for three hours, my body seems to be recovering just fine.
I'm going to try the self-lift later today; we are headed out for a potluck dinner at a friend's place. It will be interesting to see if I can make it, make the lift from chair to seat. I don't want this to be the last time, not yet. I know it's coming, I just wish it might hold off for a bit. Of course, that is what I have wished for every change in this journey; just hold off a little bit longer. Please.
Friday, 4 March 2016
Off To Edmonton
My brother Adam is spoiling me this morning. So far he has made coffee for me, made breakfast for me, and agreed to do the driving on our trip to Edmonton. Then, while I sat and gobbled up the Salmon and Hollandaise sauce on toast, Adam cleaned up the kitchen and put away the dishes. I could get used to this.
Our short road trip to Edmonton gives us a chance to spend an evening with our brother Jim. We'll have dinner, and if I know Jim, we will likely go to a karaoke bar afterwards. I can't get into Jim's house at all, so I will stay the night at a nearby hotel, courtesy of my brother Adam. He will stay at Jim's place, just a couple of blocks away. It will be nice for all three of us to get to spend time together.
The drive itself will be an adventure for Adam. He's never made the trek from Calgary to Edmonton. It's not what I would call a tremendously thrilling drive; most of it is across rolling prairie with little in the way of scenery. On the other hand, it is a great way to get a sense of what Alberta looks like, especially as you head further north. It's big country, spread wide and far, covered by farms and ranches. Just what you might expect here.
We'll come back tomorrow after lunch. That will give Adam some more time with Jim in the morning, and will allow me to sleep in a bit while at the hotel. I've been staying up later than usual the last couple of nights, and I've been busy during the days. I need a bit of extra rest, a chance to catch up on some sleep.
I have neither the energy level nor the recovery power that I used to have. When I get tired, I shake more, I eat poorly, and I become lethargic. I can push myself for a few days, but eventually it all catches up with me. I suspect that has just as much to do with aging as it does with ALS. No matter, I'll sleep tonight.
Our short road trip to Edmonton gives us a chance to spend an evening with our brother Jim. We'll have dinner, and if I know Jim, we will likely go to a karaoke bar afterwards. I can't get into Jim's house at all, so I will stay the night at a nearby hotel, courtesy of my brother Adam. He will stay at Jim's place, just a couple of blocks away. It will be nice for all three of us to get to spend time together.
The drive itself will be an adventure for Adam. He's never made the trek from Calgary to Edmonton. It's not what I would call a tremendously thrilling drive; most of it is across rolling prairie with little in the way of scenery. On the other hand, it is a great way to get a sense of what Alberta looks like, especially as you head further north. It's big country, spread wide and far, covered by farms and ranches. Just what you might expect here.
We'll come back tomorrow after lunch. That will give Adam some more time with Jim in the morning, and will allow me to sleep in a bit while at the hotel. I've been staying up later than usual the last couple of nights, and I've been busy during the days. I need a bit of extra rest, a chance to catch up on some sleep.
I have neither the energy level nor the recovery power that I used to have. When I get tired, I shake more, I eat poorly, and I become lethargic. I can push myself for a few days, but eventually it all catches up with me. I suspect that has just as much to do with aging as it does with ALS. No matter, I'll sleep tonight.
Thursday, 3 March 2016
Adam Is Visiting
My brother Adam is visiting with me for a few days. He's come up from Lake Charles, Louisiana, taking some time to stay with my Mom and Ray, then taking a week to spend with me, including a short run up to Edmonton to see my brother, Jim. It should be an interesting week, one with some fairly serious discussion. He is getting an opportunity to see, first hand, what it is like to live with ALS.
It's not that he is unaware of my condition. I know he reads my blog regularly. We also talk on the phone periodically. But there is nothing like seeing things first hand to get a better read on my situation. Yet even when seeing it straight on, it's hard to grapple with the conundrum of ALS, the way it masks and blends with the effects of aging, the way it makes ordinary into extraordinary, how it turns the simplest task into a complexity.
Aside for seeing things first hand, we should have some fun together. We are both lovers of good scotch. We both enjoy cooking. We have a lifetime of memories and stories, some told rarely, others told over and over again. We can look back on our childhoods, even though they seem different worlds at times, we went through much the same things. He is my older brother, the oldest of all five of my Mom's sons. His perspective differs from mine, and from that of my other brothers.
I have always struggled with our relationship. Being "second son" has never sat well on my shoulders. It seems all five of us boys are "alpha males". We all have an overwhelming need to be in charge, to take control, to get things done. I wish my Dad could have taught us better how to cooperate when we were younger. We would have made a hell of a team.
It's not that he is unaware of my condition. I know he reads my blog regularly. We also talk on the phone periodically. But there is nothing like seeing things first hand to get a better read on my situation. Yet even when seeing it straight on, it's hard to grapple with the conundrum of ALS, the way it masks and blends with the effects of aging, the way it makes ordinary into extraordinary, how it turns the simplest task into a complexity.
Aside for seeing things first hand, we should have some fun together. We are both lovers of good scotch. We both enjoy cooking. We have a lifetime of memories and stories, some told rarely, others told over and over again. We can look back on our childhoods, even though they seem different worlds at times, we went through much the same things. He is my older brother, the oldest of all five of my Mom's sons. His perspective differs from mine, and from that of my other brothers.
I have always struggled with our relationship. Being "second son" has never sat well on my shoulders. It seems all five of us boys are "alpha males". We all have an overwhelming need to be in charge, to take control, to get things done. I wish my Dad could have taught us better how to cooperate when we were younger. We would have made a hell of a team.
Wednesday, 2 March 2016
Another TV Interview
I did another TV interview yesterday, this time offering my thoughts on Physician Assisted Dying, or what others call Physician Assisted Suicide. I prefer the PAD term; I really don't want to die, but there will come a time when it will make sense, a time when I will be maintained by machines and tubes. Rather than simply stopping my food intake or letting me choke to death, I would prefer a more caring, managed approach to my own demise.
Doing these interviews does not take a lot out of me physically; all I have to do is sit there and look like I have ALS, a very easy thing for me to do. Emotionally, however, it takes a lot out of me to sit there and talk about the reality of having ALS, the certainty of death, how my illness is affecting me, my quality of life, and how I will die. These are difficult subjects to contemplate, let alone share with others. It is not an easy conversation, no matter whether on camera or not.
Inevitably, after the interview, I feel depressed, down, saddened by what we discussed. The media process is also kind of disappointing in its very nature. We do about 15 minutes of interview and about 30 seconds appears in the piece. It's a lot of work for just a few seconds of television. Notwithstanding what others may think about my loving the spotlight or being a media hound, it takes a real, draining effort on my part to do this.
Regardless of how it makes me feel, these interviews are important. It is a sense of responsibility within me, like it is my job to tell this story, to share this reality, as widely as I can. I feel like the more I share this story, the more people know about ALS and the issues that go with it, the more work will be done on research and finding a cure. Without public awareness, there will no advances in this field.
I want a cure for ALS. I want people to know how terrible this disease is, the difficult choices I am forced to make on a near daily basis, how I will end up when all is said and done. It's not a pretty picture, not even on TV. But I will keep telling my story as long as I can, so that others may see and learn, so that one day we might have a cure for this pernicious, brutal, ugly illness.
Doing these interviews does not take a lot out of me physically; all I have to do is sit there and look like I have ALS, a very easy thing for me to do. Emotionally, however, it takes a lot out of me to sit there and talk about the reality of having ALS, the certainty of death, how my illness is affecting me, my quality of life, and how I will die. These are difficult subjects to contemplate, let alone share with others. It is not an easy conversation, no matter whether on camera or not.
Inevitably, after the interview, I feel depressed, down, saddened by what we discussed. The media process is also kind of disappointing in its very nature. We do about 15 minutes of interview and about 30 seconds appears in the piece. It's a lot of work for just a few seconds of television. Notwithstanding what others may think about my loving the spotlight or being a media hound, it takes a real, draining effort on my part to do this.
Regardless of how it makes me feel, these interviews are important. It is a sense of responsibility within me, like it is my job to tell this story, to share this reality, as widely as I can. I feel like the more I share this story, the more people know about ALS and the issues that go with it, the more work will be done on research and finding a cure. Without public awareness, there will no advances in this field.
I want a cure for ALS. I want people to know how terrible this disease is, the difficult choices I am forced to make on a near daily basis, how I will end up when all is said and done. It's not a pretty picture, not even on TV. But I will keep telling my story as long as I can, so that others may see and learn, so that one day we might have a cure for this pernicious, brutal, ugly illness.
Tuesday, 1 March 2016
Donate Button
Katherine is going to Hong Kong, and possibly Tibet, for a month starting in mid-May. She will go with her sister, visit her brother and family in Hong Kong for a couple of weeks, then take her adventure excursion with her sister. I am thrilled for her. She hasn't seen her brother's family in a decade, nor has she seen many of her friends in Hong Kong for that long. It will be a wonderful trip for her.
For me, notwithstanding how happy I am for her, it will be a month of being alone without her. I wanted to figure out a way to go with her for at least a week. It means either running up my second credit card to the limit without a plan to pay, or doing some sort of fund raising campaign. I might do the credit card thing, at least for a part of the expense, but that leaves me with no emergency room should something happen. I've asked various friends about the "GoFundMe" idea, like I did for my elevator escape last year; there is limited enthusiasm for that.
Some say I should just accept the fact that I don't have any money left. Others have the temerity to chastise me for not planning better. The simple fact is that, without ALS, this would have been an easy decision for me three years ago. It would have been well within my means, without any use of credit. I could easily have gone to Hong Kong for a week, and had the money to pay. But then this stupid, fucking disease stole my future from me, even as it now steals my present.
There has been some encouragement, people who tell me to "Just Do It", but it will take about $3,000 at a minimum to "Just Do It." I don't see that happening with a GoFundMe. Also, Katherine is strongly opposed to my "begging" for money, as well as strongly opposed to me going further into debt. While I am free to do what I wish, her opinion is important to me.
In the midst of this frustrating conundrum, I've decided to try an experiment. I've put a "Donate" button on my blog. I'll leave it up for a week or so. I'm wondering if people will donate, not specifically to my going to Hong Kong, but to support my general efforts in writing. It will be interesting to see what happens.
For me, notwithstanding how happy I am for her, it will be a month of being alone without her. I wanted to figure out a way to go with her for at least a week. It means either running up my second credit card to the limit without a plan to pay, or doing some sort of fund raising campaign. I might do the credit card thing, at least for a part of the expense, but that leaves me with no emergency room should something happen. I've asked various friends about the "GoFundMe" idea, like I did for my elevator escape last year; there is limited enthusiasm for that.
Some say I should just accept the fact that I don't have any money left. Others have the temerity to chastise me for not planning better. The simple fact is that, without ALS, this would have been an easy decision for me three years ago. It would have been well within my means, without any use of credit. I could easily have gone to Hong Kong for a week, and had the money to pay. But then this stupid, fucking disease stole my future from me, even as it now steals my present.
There has been some encouragement, people who tell me to "Just Do It", but it will take about $3,000 at a minimum to "Just Do It." I don't see that happening with a GoFundMe. Also, Katherine is strongly opposed to my "begging" for money, as well as strongly opposed to me going further into debt. While I am free to do what I wish, her opinion is important to me.
In the midst of this frustrating conundrum, I've decided to try an experiment. I've put a "Donate" button on my blog. I'll leave it up for a week or so. I'm wondering if people will donate, not specifically to my going to Hong Kong, but to support my general efforts in writing. It will be interesting to see what happens.
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