It's an empty kind of morning this morning. It's not that things aren't happening; they are. A caregiver is here this morning; we've done my stretches and she is cleaning my apartment right now. I've had a couple of calls already. Plus I have ribs in the slow cooker for the wine making party tonight. I say it is empty because I am almost neutral in how I feel emotionally and physically. I don't feel bad, I don't feel good. I feel... bland.
My daughter recently commented that everything in my blog was dramatic. I wonder about that. This post, for instance, seems to completely lack drama of any sort. On the other hand, there are a fair number of things that happen in my life which give me pause, make me wonder, cause me grief. I don't know that writing about them is dramatic, so much as it is an expression of the emotional impact so many things have on me. The more I struggle with my limitations, the greater the impact of almost every daily event is on me.
Yesterday, for example, was in fact a dramatic day for me, so much so that by the afternoon, when I picked up Catherine to go shopping for wine supplies, I was pretty much on the edge of tears. It wasn't the early start or rush to get dressed for a TV crew that had this dramatic impact on my emotions; it was the act of discussing death, my plans for my own death, which really had an impact on me. This is not an easy subject. I guess this post now has some drama in it.
The real fact for this morning is that the emotional effort of yesterday still has me kind of worn out. Some subjects just take it out of me. Discussing my illness and my plans for ending my own life are not what I would call easy topics. The talk is tiring. It left me emotionally, and even physically, off balance for the remainder of my day. I suspect that today is a counter-balance to that effort.
The headlines are still full of opinion on the Supreme Court of Canada decision to open the door to physician assisted suicide. There are all kinds of opinion, ranging from the fearful, slippery slope to the religious objection. In the end, none of them are sustainable when viewed from one simple reality. It is easy for someone else to bear my pain and suffering; they don't feel it. Put them in my place, let them feel what I feel, then ask them the same question.
Our religions, based as they are in ancient cultures and beliefs, have no framework for reconciling the power of medicine these days. They have no tools for seeing what modern science can do, nor do they have answers for modern medical ethical questions. If I were treated with the medical methods of our ancient forefathers, I would be dead already. There would be no question about taking my own life; that question would have been answered in the natural course of life in antiquity. My death would have been attributed to the will of God, my illness attributed to my sins. There was no method for understanding, or for treating, or for maintaining life.
All of this thinking, and feeling, and contemplating is making me tired. I am going to die. There is nothing dramatic about that statement; it is as normal a part of life as being born. Certainly it is an exciting transition but it is no more dramatic, in the scheme of our complete biosphere, than any other birth or death. Let's just leave it at that.
Saturday, 7 February 2015
Friday, 6 February 2015
Living With Dignity
This morning the Supreme Court of Canada ruled that a law that makes it illegal for anyone to help people end their own lives should be amended to allow doctors to help in specific situations. It is a landscape change in those of us living with ALS. The court gave the legislature a year to come up with a legal framework where people with terminal illness will be able to choose the manner and timing of their death. I don't like to call this debate "dying with dignity"; there is nothing dignified in death. I prefer to call it "living with dignity", right up until that undignified moment when I die.
Shortly after the news hit the streets, at around 10:30 AM, I got a call from CTV News here in Calgary, asking me if I could do an interview about this ruling. Of course, ever the media hound, I said yes, asking them if we could do the interview at around 1:00 PM, giving me a bit more time to sleep. They arrived shortly before 1:00 and spent about an hour with me, asking me about ALS, my views on the ruling, and what impact it would have on me.
It was an interesting interview, one which I will want to see for myself. You never know how the media will cut and clip. CTV Calgary plans on putting a short version on during the 5:00 PM news, with a longer version on during the 6:00 PM news. I will try to watch both of them but I am not sure I will be home at 5:00 PM. Fortunately both will be online on the CTV website later this evening. The reporter, Shaun Frenette, is going to email a link to me.
This whole process is both exciting and exhausting. It's getting more and more difficult to do the things they want in an interview, stuff like background shots where I roll down the hall or into my bedroom. My arms hurt with all the rolling about, the lifting up and putting down of things, all so they can use a couple of seconds on the air. It's the nature of the media to have lots of footage and use only that which completes their narrative.
Of course there were the questions about death and dying, the standard questions about ALS, and the usual one where the observation was made that "I look great" so how could I want to die. It gets hard sometimes, to continually tell people that ALS is a disease where you look fine, in many cases right up until the end stage, until suddenly you need breathing assistance and feeding tubes and personal care. I'm not there, but it is coming, regardless of how I look.
I will watch the interviews tonight. Once again I will be reminded that I am somewhat of a poster child for ALS. I have it, it is taking my life away from me, yet here I am living to the fullest while I still can. The real message I want people to understand is that this disease will kill me; I can die in an undignified, harsh manner with tubes and nurses and doctors all round, or I can die with some semblance of peace and dignity, here at home. I simply want the ability to make that choice when the time comes.
Shortly after the news hit the streets, at around 10:30 AM, I got a call from CTV News here in Calgary, asking me if I could do an interview about this ruling. Of course, ever the media hound, I said yes, asking them if we could do the interview at around 1:00 PM, giving me a bit more time to sleep. They arrived shortly before 1:00 and spent about an hour with me, asking me about ALS, my views on the ruling, and what impact it would have on me.
It was an interesting interview, one which I will want to see for myself. You never know how the media will cut and clip. CTV Calgary plans on putting a short version on during the 5:00 PM news, with a longer version on during the 6:00 PM news. I will try to watch both of them but I am not sure I will be home at 5:00 PM. Fortunately both will be online on the CTV website later this evening. The reporter, Shaun Frenette, is going to email a link to me.
This whole process is both exciting and exhausting. It's getting more and more difficult to do the things they want in an interview, stuff like background shots where I roll down the hall or into my bedroom. My arms hurt with all the rolling about, the lifting up and putting down of things, all so they can use a couple of seconds on the air. It's the nature of the media to have lots of footage and use only that which completes their narrative.
Of course there were the questions about death and dying, the standard questions about ALS, and the usual one where the observation was made that "I look great" so how could I want to die. It gets hard sometimes, to continually tell people that ALS is a disease where you look fine, in many cases right up until the end stage, until suddenly you need breathing assistance and feeding tubes and personal care. I'm not there, but it is coming, regardless of how I look.
I will watch the interviews tonight. Once again I will be reminded that I am somewhat of a poster child for ALS. I have it, it is taking my life away from me, yet here I am living to the fullest while I still can. The real message I want people to understand is that this disease will kill me; I can die in an undignified, harsh manner with tubes and nurses and doctors all round, or I can die with some semblance of peace and dignity, here at home. I simply want the ability to make that choice when the time comes.
Thursday, 5 February 2015
I Was Wrong... Again
Okay. I admit it. I was wrong. I should be getting used to being wrong with ALS. Every time I think I know something, this disease teaches me that I don't really know anything at all. Today I had a male care giver, the first time this has ever happened. I was very worried about it. I had all kinds of presuppositions about a male caregiver; that he would be rough, that he would be awkward, that he would be unkind, that he wouldn't do the home making part of the job. I was wrong on all counts.
It's not very often that you meet someone and you feel you can trust them almost at first glance. Mohammed walked in the door smiling, something which always helps; with the first words he spoke, I felt at ease. I had been steeling myself for someone who communicated poorly, handled me roughly, treated me with less than an ideal level of respect. What I got was just the opposite. He was gentle, kind, respectful and helpful from the moment he walked in the door. He didn't, not even for a moment, assume command and control. Instead he checked with me at every stage of the way, showing an intuitive knowledge of when I needed privacy and when I needed care.
I talked to my daughter last night about my fears with respect to having a male caregiver. While understanding of my concerns, her first comment was that perhaps I was concerned about the gender/power dynamic. It gave me pause to think; I asked her if she felt I behaved that way. Her comment was enlightening. She said "Dad, you have always treated men and women differently, even with your daughters and son." I asked her if she felt it had negatively impacted her life, to which, after a moment or two of thought, she said "Not really, but I've always noticed it." I wondered what she wasn't saying.
It's true that I am, deep inside, perhaps a sexist, perhaps even a bit misogynistic; maybe I am being to gentle with my self-opinion there. It's a part of my personality which I work very hard at keeping in line; it's one of those things I don't like about myself yet seem unable to rid myself of. I have always done my best to put those thoughts far behind me, to treat women with respect and fair consideration. Obviously I have been fooling myself; my basic instincts still show through.
Today was a learning moment. To find that having a male caregiver was as good as, and in some cases better than having a female caregiver was enlightening. Physical things, like his upper body strength, made exercises easier. He had no trouble with my preferences around having a clean floor. I doubt he would have argued for a moment had I remembered to ask him to take the garbage out. And he was easy for me to talk to. I wasn't expecting this.
It's never to late to learn something. Thanks to the things that ALS puts before me, I suspect I will keep learning things right up to the day it all ends.
It's not very often that you meet someone and you feel you can trust them almost at first glance. Mohammed walked in the door smiling, something which always helps; with the first words he spoke, I felt at ease. I had been steeling myself for someone who communicated poorly, handled me roughly, treated me with less than an ideal level of respect. What I got was just the opposite. He was gentle, kind, respectful and helpful from the moment he walked in the door. He didn't, not even for a moment, assume command and control. Instead he checked with me at every stage of the way, showing an intuitive knowledge of when I needed privacy and when I needed care.
I talked to my daughter last night about my fears with respect to having a male caregiver. While understanding of my concerns, her first comment was that perhaps I was concerned about the gender/power dynamic. It gave me pause to think; I asked her if she felt I behaved that way. Her comment was enlightening. She said "Dad, you have always treated men and women differently, even with your daughters and son." I asked her if she felt it had negatively impacted her life, to which, after a moment or two of thought, she said "Not really, but I've always noticed it." I wondered what she wasn't saying.
It's true that I am, deep inside, perhaps a sexist, perhaps even a bit misogynistic; maybe I am being to gentle with my self-opinion there. It's a part of my personality which I work very hard at keeping in line; it's one of those things I don't like about myself yet seem unable to rid myself of. I have always done my best to put those thoughts far behind me, to treat women with respect and fair consideration. Obviously I have been fooling myself; my basic instincts still show through.
Today was a learning moment. To find that having a male caregiver was as good as, and in some cases better than having a female caregiver was enlightening. Physical things, like his upper body strength, made exercises easier. He had no trouble with my preferences around having a clean floor. I doubt he would have argued for a moment had I remembered to ask him to take the garbage out. And he was easy for me to talk to. I wasn't expecting this.
It's never to late to learn something. Thanks to the things that ALS puts before me, I suspect I will keep learning things right up to the day it all ends.
Wednesday, 4 February 2015
Not A Bad Day
It's been a long day today, long enough that my morning blog is now an evening blog; a situation which seems to be ever increasing. My day started early, with waking up so that I could be at the ALS clinic by 12:30 PM. After the clinic, I went immediately downtown to pick up Kate so we could go to dinner and a movie. After the movie I dropped her off in the deep south of Calgary and made the trek back to my apartment in the northwest of the city. As the White Rabbit said "I'm late. I'm late."
The clinic visit went pretty much as expected today, with the usual mix of good and bad news. The good news is that my progression remains slow and my breathing is still good, almost unchanged in the last year. The bad news is that I am still progressing, with measurable, though very small, losses in my arms and hands. The folks at the ALS clinic are going to help me with an application to the Alberta Income Supplement for the Handicapped, which will add about $400 to my monthly income. It's not an answer to all my problems but it is one of many things I will need to have in place soon.
Perhaps the most significant issue of the day was my possible involvement in a new drug study using a drug called Pimozide, a drug which is particularly effective at stabilizing neuromuscular function, meaning it can strengthen the connection where the motor neuron meets the muscle. It is hoped that this strengthening of the neuron connection will slow the progress of ALS. Unfortunately one of the possible side effects, one of the issues the study will have to deal with, is an increase in blood pressure and potential heart problems. Since I already have had to deal with athersclerosis, including a couple of minor heart attacks, angioplasty and seven stents in various arteries, along with the DVT in my left femoral vein, I am not a good candidate for this trial.
This is not all bad news, however. The money from the Ice Bucket Challenge is making its way through the research system. Projects with have languished thanks to lack of funding are now being funded. Studies with have been on hold for lack of money are now moving forward. There are some exciting new studies coming up and I am on the list. There is a study involving a herbal source medication which is starting in a couple of months; I am an ideal candidate for that one. The money we raised is already starting to make a big difference. There is more exciting research happening now than has happened in years.
So while my day was long, it was certainly worthwhile. On top of it all, I got to have dinner with Kate and we went to see The Imitation Game, the movie about Alan Turing. Not a bad day, not a bad day at all.
The clinic visit went pretty much as expected today, with the usual mix of good and bad news. The good news is that my progression remains slow and my breathing is still good, almost unchanged in the last year. The bad news is that I am still progressing, with measurable, though very small, losses in my arms and hands. The folks at the ALS clinic are going to help me with an application to the Alberta Income Supplement for the Handicapped, which will add about $400 to my monthly income. It's not an answer to all my problems but it is one of many things I will need to have in place soon.
Perhaps the most significant issue of the day was my possible involvement in a new drug study using a drug called Pimozide, a drug which is particularly effective at stabilizing neuromuscular function, meaning it can strengthen the connection where the motor neuron meets the muscle. It is hoped that this strengthening of the neuron connection will slow the progress of ALS. Unfortunately one of the possible side effects, one of the issues the study will have to deal with, is an increase in blood pressure and potential heart problems. Since I already have had to deal with athersclerosis, including a couple of minor heart attacks, angioplasty and seven stents in various arteries, along with the DVT in my left femoral vein, I am not a good candidate for this trial.
This is not all bad news, however. The money from the Ice Bucket Challenge is making its way through the research system. Projects with have languished thanks to lack of funding are now being funded. Studies with have been on hold for lack of money are now moving forward. There are some exciting new studies coming up and I am on the list. There is a study involving a herbal source medication which is starting in a couple of months; I am an ideal candidate for that one. The money we raised is already starting to make a big difference. There is more exciting research happening now than has happened in years.
So while my day was long, it was certainly worthwhile. On top of it all, I got to have dinner with Kate and we went to see The Imitation Game, the movie about Alan Turing. Not a bad day, not a bad day at all.
Tuesday, 3 February 2015
My Life As A Car
Another day has come and gone. Another young woman has let herself into my apartment, gotten me out of bed, helped me in the shower, gotten me back into bed, helped me dress, and stretched me. Another care worker has seen me "au naturel". Another woman I barely know has given my naked body a close order inspection. Once again, it was all business, taking care of me so I can continue to live something vaguely resembling a normal life.
Some days I feel like an old car, rumbling down this endless highway, bits and pieces falling off at each bump and jostle, sometimes a small nut or bolt, other times something major that everyone can see, yet on I go, the drive train still at least semi-functioning. Sometimes nothing falls off but some small thing, or not so small thing, breaks or stops working; one time it will be windshield wipers that fail to swish, another time it will be radio that won't turn on, or perhaps a glove box that nobody can get to close any more.
These broken parts and failing pieces are highly visible on occasion; a body piece falls off or the transmission fails. Other times the damage is only visible to those inside the car, those intimately involved with this ongoing voyage. Sometimes nothing happens at all; then I wonder what will happen, for surely as my car slowly breaks to pieces something will fail. Sometimes the inner parts which break are the ones I notice the most.
There is gas in the tank. The motor still runs. The steering works most of the time. The headlights are dimmed, yet functional although the turn signals failed long ago. And yes, the horn works. The question is not how far or how long I can go, but how I can keep going in such a state of disrepair. Yet onward I go, rumbling and grumbling along life's highway, trying hard to remain oblivious to that which I cannot change.
It's a good thing this carriage of mine doesn't go all that fast. The brakes gave up long ago. I am trapped in forward motion, unstopping. I will travel this highway until sufficient parts of me are broken that I can no longer travel. I will drive myself until the wheels fall off. I feel for my passengers, whoever they may choose to be, for this is an uncomfortable ride, never knowing if we will make the next turn, top the next hill, see the next horizon. At least I get to drive; they just get to watch.
Some days I feel like an old car, rumbling down this endless highway, bits and pieces falling off at each bump and jostle, sometimes a small nut or bolt, other times something major that everyone can see, yet on I go, the drive train still at least semi-functioning. Sometimes nothing falls off but some small thing, or not so small thing, breaks or stops working; one time it will be windshield wipers that fail to swish, another time it will be radio that won't turn on, or perhaps a glove box that nobody can get to close any more.
These broken parts and failing pieces are highly visible on occasion; a body piece falls off or the transmission fails. Other times the damage is only visible to those inside the car, those intimately involved with this ongoing voyage. Sometimes nothing happens at all; then I wonder what will happen, for surely as my car slowly breaks to pieces something will fail. Sometimes the inner parts which break are the ones I notice the most.
There is gas in the tank. The motor still runs. The steering works most of the time. The headlights are dimmed, yet functional although the turn signals failed long ago. And yes, the horn works. The question is not how far or how long I can go, but how I can keep going in such a state of disrepair. Yet onward I go, rumbling and grumbling along life's highway, trying hard to remain oblivious to that which I cannot change.
It's a good thing this carriage of mine doesn't go all that fast. The brakes gave up long ago. I am trapped in forward motion, unstopping. I will travel this highway until sufficient parts of me are broken that I can no longer travel. I will drive myself until the wheels fall off. I feel for my passengers, whoever they may choose to be, for this is an uncomfortable ride, never knowing if we will make the next turn, top the next hill, see the next horizon. At least I get to drive; they just get to watch.
Monday, 2 February 2015
It's Normal, Only Different
On Friday, home care came late, so late that I just told them to skip my shower. I planned on having one on my own on Saturday morning, so no worries. Unfortunately things did not work out that way. The shower frightens me, enough so that I will find reasons to avoid it. I need encouragement and help to get this part of my life in order.
So today, the new woman in my life, who shall, for the moment, remain anonymous, came over to assist me with my shower. I don't need help cleaning myself. What I really need is someone holding the wheelchair when I transfer out. The floor is wet and the chair slides, something that has disaster written all over it. She helped and I showered.
After my shower I went back into my bedroom and on to my bed so that I could get dressed. At that moment all the activity and exercise cut in, and I had to go pee. I announced my need and apologized, to which she asked "Why are you apologizing? Everyone has to go pee when they get up. It's a normal part of life." I retorted "Yes, but I have to pee into a jug!"
Her response was brilliant, a great reminder of perspective and how unhappiness is a willful state. She replied "So now that you have so much to be happy about, you have to find something to complain about. You complain about peeing into a jug. Why?" I have to confess that the comment put me in my place right away. She is absolutely right. So I pee into a jug. Who gives a rats ass? I can look at it as embarrassing and inconvenient, or as just a simple fact of my life, and in many ways far more convenient that those who have to wait for washroom availability.
It's all about perspective. I do the same things in life that everyone else does. I just do them differently. Everyone showers, or bathes. I do too. Everyone gets out of the shower on to a wet floor. I do too. The only real difference is I get into a wheelchair. Everyone dresses; I just do it a bit differently now. Everyone goes pee; I just have a different system than some.
My brother once said that suffering is a part of life, but that misery was optional. Peeing into a jug is nothing to get miserable about. Having someone see me when I pee may be awkward but it's nothing to be embarrassed about. It's just normal life, only different.
So today, the new woman in my life, who shall, for the moment, remain anonymous, came over to assist me with my shower. I don't need help cleaning myself. What I really need is someone holding the wheelchair when I transfer out. The floor is wet and the chair slides, something that has disaster written all over it. She helped and I showered.
After my shower I went back into my bedroom and on to my bed so that I could get dressed. At that moment all the activity and exercise cut in, and I had to go pee. I announced my need and apologized, to which she asked "Why are you apologizing? Everyone has to go pee when they get up. It's a normal part of life." I retorted "Yes, but I have to pee into a jug!"
Her response was brilliant, a great reminder of perspective and how unhappiness is a willful state. She replied "So now that you have so much to be happy about, you have to find something to complain about. You complain about peeing into a jug. Why?" I have to confess that the comment put me in my place right away. She is absolutely right. So I pee into a jug. Who gives a rats ass? I can look at it as embarrassing and inconvenient, or as just a simple fact of my life, and in many ways far more convenient that those who have to wait for washroom availability.
It's all about perspective. I do the same things in life that everyone else does. I just do them differently. Everyone showers, or bathes. I do too. Everyone gets out of the shower on to a wet floor. I do too. The only real difference is I get into a wheelchair. Everyone dresses; I just do it a bit differently now. Everyone goes pee; I just have a different system than some.
My brother once said that suffering is a part of life, but that misery was optional. Peeing into a jug is nothing to get miserable about. Having someone see me when I pee may be awkward but it's nothing to be embarrassed about. It's just normal life, only different.
Sunday, 1 February 2015
You Just Never Know
A woman has come into my life. I thought that this part of my life was over, that something like this could never happen to me. I thought that no woman would ever want me in my damaged, terminal state. Yet here she is, fully aware of what is happening to my body, what is happening to my life. I am as shocked as anyone could be. She has known me for a while yet I had no idea she had this interest in me. She doesn't read my blog, doesn't see these thoughts, although I am pretty sure she knows that I think them.
Today was a scene of domesticity. She came over after lunch and we just finished watching the Superbowl. She chose to cheer for New England simply because I was cheering for Seattle. She knows very little about football and even less about American football. Yet she found great joy in backing the winning team in what was a close, tension filled game. I don't mind; it was fun to have someone cuddled up next to me on the couch as I watched the game, getting me a coffee or snacks so that I didn't have to make the transfer to and from my wheelchair.
Now she is busy in the kitchen cutting up the various ingredients for a Greek Salad. She is doing this so I can take the time to write. There is no quid pro quo in this, no expectation of return to her for doing this part of daily living. In fact there are a number of things she does that one would not expect in a "normal" situation, things like dealing with my jug, helping me with my coat and shoes, making sure my legs are moved and positioned as necessary.
She seems unfazed by the extra help and time I need. I will apologize for some limitation, for her having to fetch something for me. I will express concern about her being involved with someone with such poor prospects and so little money. She says to me "I knew all about this before I got into it." There is no expectation of return, no thought in her mind that I have something to offer. She seems quite comfortable with what is happening to me and how ALS will progress.
I am not sure how this will change my life or where it will take me. What I am sure about is that it is such a pleasant feeling to have someone in my life who understands what I am going through and seems perfectly willing to go through it with me. She laughs, finds humour in things I say or do, and doesn't seem to want to judge me for any ideas I have that are different from hers. She accepts me for whom I am, at least for now.
It's a strange thing, the way life works. I have no idea how long this will last, nor when it might end. All I know for sure is that I am going to live in the moment and enjoy it. It proves that you just never know, even though I thought I did.
Today was a scene of domesticity. She came over after lunch and we just finished watching the Superbowl. She chose to cheer for New England simply because I was cheering for Seattle. She knows very little about football and even less about American football. Yet she found great joy in backing the winning team in what was a close, tension filled game. I don't mind; it was fun to have someone cuddled up next to me on the couch as I watched the game, getting me a coffee or snacks so that I didn't have to make the transfer to and from my wheelchair.
Now she is busy in the kitchen cutting up the various ingredients for a Greek Salad. She is doing this so I can take the time to write. There is no quid pro quo in this, no expectation of return to her for doing this part of daily living. In fact there are a number of things she does that one would not expect in a "normal" situation, things like dealing with my jug, helping me with my coat and shoes, making sure my legs are moved and positioned as necessary.
She seems unfazed by the extra help and time I need. I will apologize for some limitation, for her having to fetch something for me. I will express concern about her being involved with someone with such poor prospects and so little money. She says to me "I knew all about this before I got into it." There is no expectation of return, no thought in her mind that I have something to offer. She seems quite comfortable with what is happening to me and how ALS will progress.
I am not sure how this will change my life or where it will take me. What I am sure about is that it is such a pleasant feeling to have someone in my life who understands what I am going through and seems perfectly willing to go through it with me. She laughs, finds humour in things I say or do, and doesn't seem to want to judge me for any ideas I have that are different from hers. She accepts me for whom I am, at least for now.
It's a strange thing, the way life works. I have no idea how long this will last, nor when it might end. All I know for sure is that I am going to live in the moment and enjoy it. It proves that you just never know, even though I thought I did.
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