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.
Wednesday, 4 February 2015
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.
Saturday, 31 January 2015
Winter Returns
The snow has returned to Calgary. The Chinook is gone, taking with it the warm winds rising off the Pacific and over the Rocky Mountains. Overnight the temperatures have plummeted, as much as you can call it plummeting, from highs nearing +15 to lows nearing -15. The roads are once again covered in a thin skein of snow atop the underlying ice, the gift of the snow melt over the last few days.
I like this change in weather. I am one of those strange people who like the winter cold. I enjoy the crisp snap in the air, the brilliant glisten of sun on snow, the tickle of chill against my skin. This weather is only challenging when you are unprepared; all my experience with hunting and fishing in this kind of weather means I am almost always prepared, with a blanket in my car, matches or lighters, an axe in the tool kit and a host of other emergency tools. The problem, of course, is that I can no longer use so many of them. But I have them, just in case.
The plan for today is to head out to pick up a couple of final grocery items. Over the last few days I've gotten pretty much everything I need; fruit, meat, milk, bread, cheese. I want to get another dozen eggs, some bacon, and I am out of ribs, a staple in my cooking plans. My freezer is by no means empty; it's almost full. There are just a couple of things I want, and the Co-op has them on sale this week.
The weather will not stop this excursion. I've learned how to manhandle my wheelchair through the snow, popping the front wheels up and punching the chair forward, almost climbing across the snow rather than rolling through it. Perhaps the Co-op will have their parking lot plowed, although it's unlikely give that pretty much everyone in Calgary is looking to get something plowed today. No matter, the return of winter doesn't stop me. It's barely an inconvenience.
I like this change in weather. I am one of those strange people who like the winter cold. I enjoy the crisp snap in the air, the brilliant glisten of sun on snow, the tickle of chill against my skin. This weather is only challenging when you are unprepared; all my experience with hunting and fishing in this kind of weather means I am almost always prepared, with a blanket in my car, matches or lighters, an axe in the tool kit and a host of other emergency tools. The problem, of course, is that I can no longer use so many of them. But I have them, just in case.
The plan for today is to head out to pick up a couple of final grocery items. Over the last few days I've gotten pretty much everything I need; fruit, meat, milk, bread, cheese. I want to get another dozen eggs, some bacon, and I am out of ribs, a staple in my cooking plans. My freezer is by no means empty; it's almost full. There are just a couple of things I want, and the Co-op has them on sale this week.
The weather will not stop this excursion. I've learned how to manhandle my wheelchair through the snow, popping the front wheels up and punching the chair forward, almost climbing across the snow rather than rolling through it. Perhaps the Co-op will have their parking lot plowed, although it's unlikely give that pretty much everyone in Calgary is looking to get something plowed today. No matter, the return of winter doesn't stop me. It's barely an inconvenience.
Friday, 30 January 2015
Fine And Good
My home care worker was late today; we decided to skip the shower and just do my exercises. Actually I can still shower on my own if I take the risk of slipping when transferring from my shower seat to my wheelchair. It's workable, just dangerous. I am still reasonably capable with this personal care task; I'll be fine.
That's become a watchword for me, the catch-all phrase that describes my general view of life and ALS these days; "I'll be fine", or "I'm good". It's not dismissive nor is it untrue. While I stumble in my life, sometimes hurting myself, sometimes hurting those around me, I am confident these days that I will be fine, that I will be good. My biggest concern is not actually myself, but those around me how catch me when I fall. I know one day the fall will be too much, the catch to difficult. I realize how hard it is for others to deal with ALS.
Each of us has our own limitations. For me to keep going, it's important that I remember that it's not all about me, that others have to be "fine" too, the those whom I depend on are left with enough energy and compassion at the end of the day to be able to say they are "good", both physically and emotionally. It's easy for me to forget that just because I have ALS it doesn't mean I get a free pass on the rest of human interaction.
On the other hand, I know that those who care for me understand the frustrations in my life. They have seen the changes, been there for the tears, held me when I was exhausted, supported me me when I felt humiliated. I know that those who care for me require an extra ability to forgive and move forward. I have always been a bit difficult; ALS has simply amplified it. I know I let that amplification spill out at times. I know sometimes I hurt those who I depend on the most, just as I know they forgive as best they can, and we all move on.
It is in the nature of humanity to stumble, to fall, to get up and to move on. The challenge for me is that I can stumble just fine; getting up and moving on represent somewhat more of a challenge. I now depend on others. I have to be sure that when I stumble, it is for me alone. When I fall, I now am certain that I need someone to catch me. Yet here I am, as difficult as ever and perhaps moreso. It's a complicated thing, this life I live. It takes work to be "fine and good".
That's become a watchword for me, the catch-all phrase that describes my general view of life and ALS these days; "I'll be fine", or "I'm good". It's not dismissive nor is it untrue. While I stumble in my life, sometimes hurting myself, sometimes hurting those around me, I am confident these days that I will be fine, that I will be good. My biggest concern is not actually myself, but those around me how catch me when I fall. I know one day the fall will be too much, the catch to difficult. I realize how hard it is for others to deal with ALS.
Each of us has our own limitations. For me to keep going, it's important that I remember that it's not all about me, that others have to be "fine" too, the those whom I depend on are left with enough energy and compassion at the end of the day to be able to say they are "good", both physically and emotionally. It's easy for me to forget that just because I have ALS it doesn't mean I get a free pass on the rest of human interaction.
On the other hand, I know that those who care for me understand the frustrations in my life. They have seen the changes, been there for the tears, held me when I was exhausted, supported me me when I felt humiliated. I know that those who care for me require an extra ability to forgive and move forward. I have always been a bit difficult; ALS has simply amplified it. I know I let that amplification spill out at times. I know sometimes I hurt those who I depend on the most, just as I know they forgive as best they can, and we all move on.
It is in the nature of humanity to stumble, to fall, to get up and to move on. The challenge for me is that I can stumble just fine; getting up and moving on represent somewhat more of a challenge. I now depend on others. I have to be sure that when I stumble, it is for me alone. When I fall, I now am certain that I need someone to catch me. Yet here I am, as difficult as ever and perhaps moreso. It's a complicated thing, this life I live. It takes work to be "fine and good".
Thursday, 29 January 2015
Good Things In My Life
It would be easy, in fact it is easy, for me to forget, in the midst of all the difficulties of my life, that there are a good many things that happen to me day upon day which bring me joy, which bring a smile to my face, which keep me going even in the face of my ever diminishing capacity. There are so many things, both large and small, which add, one upon the other, to the happiness which makes this most unbearable of illnesses bearable.
Today, for example, I got to drive my daughter Kate to the airport. Many would find this a chore, a task taking time out of a busy life, something troublesome. For me it gave the pleasure of a drive in the warm, Calgary sunshine, a chance to talk with Kate while we drove, an opportunity to get out and about when so much gets in the way of it. Today I got to spend time with one of my children, something I cherish whenever it is possible, fully wishing I could do more often. It gave me the opportunity to smile at her humour, listen to her career struggles, share in her excitement of heading off to Toronto to spend time with a treasured friend. Regardless of ALS, I will get to be with Kate and my other children, and my grandchildren, perhaps many times yet.
I have a party to attend on Saturday and I am headed out to Name That Tune tonight. The excitement and fun of an evening with friends is another thing that will continue long into my decline with ALS. I trust my group, feeling certain that they will do all they can to include me as times get tougher for me. Tonight we will talk, laugh, tell stories and share our lives with one another. On Saturday night we will do the same again. I gain energy from these social engagements, one of the pleasures of being an extrovert. To be out and about is another thing I can, and will, do for some time to come. And when I can no longer be out and about, I have faith that those who love me will bring their energy into my home, into my life.
On Monday a woman I have never met, through the hands of a joint friend, gave me a gift of $100. This generosity, this gift with no attachment, reminds me that I have so much for which to give thanks. I am a giver, not an asker. I could never ask someone to give me this kind of a gift; I would wait for it to be offered and gratefully accept, and perhaps not even all the time with that. I took this money and bought groceries today, the extra money allowing me to get some things I love but have not purchased lately, some tuna steaks, steelhead fillets, and red snapper. I miss having fish for dinner; now, thanks to an unknown person's kindness, I can enjoy something special.
There are lots of good things in my life. Some will stay forever, such as the time spent with my children and my friends, Others will pass away as my capacity passes away. There will come a time when I will no longer be able to drive in the sunshine, when I will no longer be able to shop for my own groceries, when I will no longer be able to enjoy a fine meal. For now I choose to live in this moment, when these things can bring me joy. When I think about tomorrow, I do my best to think about that which will not pass away, days with those who love me, times with those who care, moments with those who stand beside me as I walk this most difficult of pathways.
Today, for example, I got to drive my daughter Kate to the airport. Many would find this a chore, a task taking time out of a busy life, something troublesome. For me it gave the pleasure of a drive in the warm, Calgary sunshine, a chance to talk with Kate while we drove, an opportunity to get out and about when so much gets in the way of it. Today I got to spend time with one of my children, something I cherish whenever it is possible, fully wishing I could do more often. It gave me the opportunity to smile at her humour, listen to her career struggles, share in her excitement of heading off to Toronto to spend time with a treasured friend. Regardless of ALS, I will get to be with Kate and my other children, and my grandchildren, perhaps many times yet.
I have a party to attend on Saturday and I am headed out to Name That Tune tonight. The excitement and fun of an evening with friends is another thing that will continue long into my decline with ALS. I trust my group, feeling certain that they will do all they can to include me as times get tougher for me. Tonight we will talk, laugh, tell stories and share our lives with one another. On Saturday night we will do the same again. I gain energy from these social engagements, one of the pleasures of being an extrovert. To be out and about is another thing I can, and will, do for some time to come. And when I can no longer be out and about, I have faith that those who love me will bring their energy into my home, into my life.
On Monday a woman I have never met, through the hands of a joint friend, gave me a gift of $100. This generosity, this gift with no attachment, reminds me that I have so much for which to give thanks. I am a giver, not an asker. I could never ask someone to give me this kind of a gift; I would wait for it to be offered and gratefully accept, and perhaps not even all the time with that. I took this money and bought groceries today, the extra money allowing me to get some things I love but have not purchased lately, some tuna steaks, steelhead fillets, and red snapper. I miss having fish for dinner; now, thanks to an unknown person's kindness, I can enjoy something special.
There are lots of good things in my life. Some will stay forever, such as the time spent with my children and my friends, Others will pass away as my capacity passes away. There will come a time when I will no longer be able to drive in the sunshine, when I will no longer be able to shop for my own groceries, when I will no longer be able to enjoy a fine meal. For now I choose to live in this moment, when these things can bring me joy. When I think about tomorrow, I do my best to think about that which will not pass away, days with those who love me, times with those who care, moments with those who stand beside me as I walk this most difficult of pathways.
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