Anisa's Mom, Marianne, died last night. Anisa is one of my close group of friends here in Calgary. These folks are the main reason I decided to stay in Calgary once I was diagnosed with ALS, instead of heading back to BC. I met her parents when they came to visit her here last year. I've kept touch with them, directly and through Anisa, since then. When Marianne's cancer returned earlier this year, we hoped she would beat it again. She didn't.
The last month for Marianne, along with Anisa and her family, has been a tough one. The inevitable was on its way and she had to deal with it. Having seen my own father go through this process, I had a pretty good idea of how it would go. There is no "normal" with cancer. There's only a process with rough expectations. Marianne fought hard to keep going. In the end, she couldn't go any longer.
Death is a difficult thing to face, whether sudden or slow. It shakes everything within you, whether you are the person facing it or whether you love the person facing it. To lose someone is hard, especially a parent, and even more especially, a child. I am facing a long, slow process, slower than that which Marianne faced. My process is almost invisible; it's insidious. I don't seem "sick"; I am just dying slowly.
It's so sad for Anisa; her Mom was only 57 years old. Her Dad is at a complete loss as to how he will live his life from here. I know he will go on; I've seen this with others in the same situation. It's hard to imagine in the moment, had to believe that there will be life after such a tragedy. But it will happen. As much as Anisa, her Dad, Nain, and her brother Mike, may hate the dark of night tonight, tomorrow will come with the dawn of day. They will start their new life without Marianne, without the wife and mother they loved and have lost.
This will be important for my Mom and my kids, for my brothers, and most of all for me. I must remember, as they will be forced to remember, that life will go on after I leave it. As with Marianne, I will go quietly, at home. I may be alone or I may be with those I love and who love me. It matters not. Once I leave, as Marianne has left, they must start a new life, one without the person they love and will miss.
The first step is to keep breathing, then to go to sleep and wake up the next day. Then, one day, the pain gets a little bit less, the hurt goes away just a little. One day you find you will smile again, laugh again, be joyful again. As time goes by, you will never forget the love and laughter, but you will forget the pain of the loss. You will always sense the missing piece of your life, but you will continue to live. The pain leaves; the love stays with you.
Wednesday, 31 December 2014
Tuesday, 30 December 2014
I Accept; I Hate It
I'm not doing well this morning. My left shoulder hurts; my hands hurt; the muscles in my arms hurt. I am even having trouble focusing my eyes this morning; they work, just slowly. The problem is that I don't know how much of this is simply aging, and how much is ALS related. The shoulder might be aging, My hands might be just the same. My slow focus eyes might just be the time it takes for me to wake up. All of these things are probably made just a bit worse thanks to my illness.
Let's face it; I am dying. Of course the more prosaic amongst you might say we all are dying, and that would, on the face of it, seem true if just a bit trite. The difference is that my dying is an active event; a slow, torturous, dragged out affair that will end in a terribly inconvenient manner. For those who are not afflicted with some terminal illness, such as end stage cancer or such like, your death is a passive event, something that might happen at some time in the near future. Mine is happening now, just in slow motion.
I have a friend who will die this week, most likely, from terminal cancer. Her march to the end of life has been underway for some months now. She has been fighting her cancer, and so could have been said to be living with it, until just a matter of weeks ago. It was at this point when she began dying from cancer instead of living with it, instead of fighting it. She has accepted that her cancer is what will end her life.
My father went through the same thing with his cancer. He fought until he could fight no more. Then, a week before he died, he went into the hospital where the doctor said they would not treat his cancer any more. My Dad said, with kind of spirit only he could muster, "Then we give up!?!" The doctor replied, "No. McBride. We accept that this is what is going to kill you." A week later, Dad died. He just gave up once he found there was nothing he could do to fight his illness.
So what do I do? How do I "live" having been forced to accept that there is nothing I can do to fight my illness. Sure, there are devices and machines and methods to extend my life, a life trapped in a chair or laying in a bed. Sure, there are people who live longer through mechanical intervention. I just don't think I want to do this. I have accepted that this is what will end my life; I will die from complications associated with ALS.
I have accepted. Now I just have to wait. It means mornings like this, and worse to come. One day I will wake up and realize that tomorrow will be worse, that the day after that will be worse yet again, followed by the day after that. And I am compelled to accept that this is what will kill me. I hate it.
Let's face it; I am dying. Of course the more prosaic amongst you might say we all are dying, and that would, on the face of it, seem true if just a bit trite. The difference is that my dying is an active event; a slow, torturous, dragged out affair that will end in a terribly inconvenient manner. For those who are not afflicted with some terminal illness, such as end stage cancer or such like, your death is a passive event, something that might happen at some time in the near future. Mine is happening now, just in slow motion.
I have a friend who will die this week, most likely, from terminal cancer. Her march to the end of life has been underway for some months now. She has been fighting her cancer, and so could have been said to be living with it, until just a matter of weeks ago. It was at this point when she began dying from cancer instead of living with it, instead of fighting it. She has accepted that her cancer is what will end her life.
My father went through the same thing with his cancer. He fought until he could fight no more. Then, a week before he died, he went into the hospital where the doctor said they would not treat his cancer any more. My Dad said, with kind of spirit only he could muster, "Then we give up!?!" The doctor replied, "No. McBride. We accept that this is what is going to kill you." A week later, Dad died. He just gave up once he found there was nothing he could do to fight his illness.
So what do I do? How do I "live" having been forced to accept that there is nothing I can do to fight my illness. Sure, there are devices and machines and methods to extend my life, a life trapped in a chair or laying in a bed. Sure, there are people who live longer through mechanical intervention. I just don't think I want to do this. I have accepted that this is what will end my life; I will die from complications associated with ALS.
I have accepted. Now I just have to wait. It means mornings like this, and worse to come. One day I will wake up and realize that tomorrow will be worse, that the day after that will be worse yet again, followed by the day after that. And I am compelled to accept that this is what will kill me. I hate it.
Monday, 29 December 2014
Remove The Blockage First
My kitchen is a mess. It's been that way for a couple of days now. The remnant Christmas dinner dishes, cleaned and in the dish rack, still await putting away. There are pots stacked in the sink, empty wine bottles on the counter awaiting rinsing, the sugar and flour I bought yesterday stand there wanting to be put away. I see it. I feel it calling my name, near screaming at me to be tidied up and cleaned away. Yet there it sits, waiting, unattended.
There are times, whole days in fact, when I simply don't want to attend to the chores in my home, the activities of daily living simply demanding of me that which I do not wish to give. Sometimes, like yesterday, the other things in my life get in the way, things like getting up and shaving and dressing and going out to a party. Given the choice, going out to have fun always wins over cleaning up the kitchen.
It's also a thing about "blockage". There are some things that simply stop me from moving forward, knowing that I cannot accomplish that which blocks my forward progress. This time it was the two platters which have been sitting in the dish rack, dry and waiting to be put up on the top shelf of the cupboard. I can't put them up. Without help, there they sit. I don't want to ask Ray or Mom to put them up; they have as much trouble as I do with those top shelves.
Since I can't put the platters away, I don't want to bother with the rest of the dishes in the rack. Since I'm not clearing the dish rack, I don't want to bother with the dishes in the sink; I have no place to put them once cleaned. Since I can't clean the dishes and empty the sink, there's no room to rinse the wine bottles. And as to the sugar and flour, I'm just too lazy right now.
Here is what I know in situations like this. You either find a way to remove the blockage or you find a way to work around it. Today I asked my Home Care worker to put away the platters. Once I am done writing, I will clear the rest of the dishes from the rack. After that, the bottles and then the sugar and flour. Then, in a matter of a few minutes, the kitchen will be tidy... and all will be right with the world.
There are times, whole days in fact, when I simply don't want to attend to the chores in my home, the activities of daily living simply demanding of me that which I do not wish to give. Sometimes, like yesterday, the other things in my life get in the way, things like getting up and shaving and dressing and going out to a party. Given the choice, going out to have fun always wins over cleaning up the kitchen.
It's also a thing about "blockage". There are some things that simply stop me from moving forward, knowing that I cannot accomplish that which blocks my forward progress. This time it was the two platters which have been sitting in the dish rack, dry and waiting to be put up on the top shelf of the cupboard. I can't put them up. Without help, there they sit. I don't want to ask Ray or Mom to put them up; they have as much trouble as I do with those top shelves.
Since I can't put the platters away, I don't want to bother with the rest of the dishes in the rack. Since I'm not clearing the dish rack, I don't want to bother with the dishes in the sink; I have no place to put them once cleaned. Since I can't clean the dishes and empty the sink, there's no room to rinse the wine bottles. And as to the sugar and flour, I'm just too lazy right now.
Here is what I know in situations like this. You either find a way to remove the blockage or you find a way to work around it. Today I asked my Home Care worker to put away the platters. Once I am done writing, I will clear the rest of the dishes from the rack. After that, the bottles and then the sugar and flour. Then, in a matter of a few minutes, the kitchen will be tidy... and all will be right with the world.
Sunday, 28 December 2014
Professor X
I am undergoing a dramatic change today. It's not an ALS type change, I'm doing this one on purpose. For the first time since I was 19 years old, I am shaving my mustache. I am also shaving my beard along with all the hair on my head. I will be... bald and clean shaven.
This is not for some charity; unfortunately I couldn't find someone willing to shave my head as a fundraiser for ALS. No, this is for a super hero themed party I am attending tonight. I am going as Professor X from the X-Men series of graphic novel and movie fame.
There is a certain irony in my choice of this character. Aside from the fact that the wheelchair is a built-in prop, the way Professor X is portrayed in the graphic novels is dramatically different from the way he is portrayed in movies.
Drawn as a character on paper, Professor X is extremely muscular, wearing a shirt so tight that muscles ripple beneath. The shirt itself bears a lurid "X" logo on the breast, also bulging above muscle. His legs, however, are thin and wasted, as you would expect from someone who is a paraplegic in a wheelchair..
On the other hand, Professor X, as played by Patrick Stewart in the X-Men series of movies, is anything but muscular. His lack of muscle is more than evident by its absence; it's just not there, something that could be a bit of a shock if you were a devotee of the graphic novel. The movie version of this character is always dressed in a dapper suit, almost always a three piece suit, with a well tied tie and perfect grooming.
The irony is the loss of muscle between the comic character and the movie version. It's as if some strange disease had taken away all of the Professor's muscles, leaving him with only his mind to do his super hero work. That is something I can understand.
My real problem is not the Professor X look. I shall go in a jacket and tie, most likely without a vest. My problem is the wheelchair. In both movies and drawings, Professor X has this really cool wheelchair; I don't. I have an ordinary, regular, run of the mill, long use wheelchair; almost standard issue, mine is at least reasonably high end. The best I can do with it is use white duct tape to put a highly visible "X" on each wheel. That will have to do.
Then again, there is the shaven head, beardless face, absent mustache, along with a suit and tie. People should be able to figure it out. If not, they haven't seen enough super hero movies.
This is not for some charity; unfortunately I couldn't find someone willing to shave my head as a fundraiser for ALS. No, this is for a super hero themed party I am attending tonight. I am going as Professor X from the X-Men series of graphic novel and movie fame.
There is a certain irony in my choice of this character. Aside from the fact that the wheelchair is a built-in prop, the way Professor X is portrayed in the graphic novels is dramatically different from the way he is portrayed in movies.
Drawn as a character on paper, Professor X is extremely muscular, wearing a shirt so tight that muscles ripple beneath. The shirt itself bears a lurid "X" logo on the breast, also bulging above muscle. His legs, however, are thin and wasted, as you would expect from someone who is a paraplegic in a wheelchair..
On the other hand, Professor X, as played by Patrick Stewart in the X-Men series of movies, is anything but muscular. His lack of muscle is more than evident by its absence; it's just not there, something that could be a bit of a shock if you were a devotee of the graphic novel. The movie version of this character is always dressed in a dapper suit, almost always a three piece suit, with a well tied tie and perfect grooming.
The irony is the loss of muscle between the comic character and the movie version. It's as if some strange disease had taken away all of the Professor's muscles, leaving him with only his mind to do his super hero work. That is something I can understand.
My real problem is not the Professor X look. I shall go in a jacket and tie, most likely without a vest. My problem is the wheelchair. In both movies and drawings, Professor X has this really cool wheelchair; I don't. I have an ordinary, regular, run of the mill, long use wheelchair; almost standard issue, mine is at least reasonably high end. The best I can do with it is use white duct tape to put a highly visible "X" on each wheel. That will have to do.
Then again, there is the shaven head, beardless face, absent mustache, along with a suit and tie. People should be able to figure it out. If not, they haven't seen enough super hero movies.
Saturday, 27 December 2014
I Worry About Needing Help
I awoke this morning to a disaster. During the night, both Mom and Ray came down with some sort of stomach ailment, suffering the attendant vomiting. On top of that, Mom is suffering from severe diarrhea. When I went into the bathroom this morning, the results of these combined problems were on the walls and floor near the toilet.
My parents had done the best they could to clean up. Unfortunately both of them were, and still are, debilitated by their own physical limitations along with their illness. I cleaned up where I could but the walls and floor behind and beside the toilet were out of my reach. I made a panicked call to Kate and Meaghan to come and help me with the clean up.
Complicating matters, Meaghan is pregnant. The mere thought of this situation was enough to trigger her own stomach issues. This meant Kate took the brunt of the cleaning responsibilities. She marched in, took charge, and cleaned up the mess. It only took her a bit; she is very efficient when sets her mind to it.
Once again I am reminded of how I need help in ways I've not needed it before. The simple act of cleaning behind the toilet is beyond me. I can't reach it from my wheelchair. There are a lot of things like that which limit me now. This morning when my parents were in need of help, I called my own children to take over. They now find themselves in the same sandwich I have lived with for many years; caring for aging and ailing parents while caring for their own children. Only they are starting earlier than me.
Having people around me who can help will become increasingly important to me over the next year. As my condition progresses, I will be calling for help more often. I will need help more often. My concern is that, as I become more and more dependent on their help, my needs will wear out my support system. People will become overloaded with my increasing requests for help. I worry about that a lot, especially as concerns those who are closest to me.
I know they are willing to help; they offer to help, often. I know they understand how reluctant I am to ask for help. I also know that they have lives of their own. I know I am inconvenient. I know it will get worse. That worries me.
My parents had done the best they could to clean up. Unfortunately both of them were, and still are, debilitated by their own physical limitations along with their illness. I cleaned up where I could but the walls and floor behind and beside the toilet were out of my reach. I made a panicked call to Kate and Meaghan to come and help me with the clean up.
Complicating matters, Meaghan is pregnant. The mere thought of this situation was enough to trigger her own stomach issues. This meant Kate took the brunt of the cleaning responsibilities. She marched in, took charge, and cleaned up the mess. It only took her a bit; she is very efficient when sets her mind to it.
Once again I am reminded of how I need help in ways I've not needed it before. The simple act of cleaning behind the toilet is beyond me. I can't reach it from my wheelchair. There are a lot of things like that which limit me now. This morning when my parents were in need of help, I called my own children to take over. They now find themselves in the same sandwich I have lived with for many years; caring for aging and ailing parents while caring for their own children. Only they are starting earlier than me.
Having people around me who can help will become increasingly important to me over the next year. As my condition progresses, I will be calling for help more often. I will need help more often. My concern is that, as I become more and more dependent on their help, my needs will wear out my support system. People will become overloaded with my increasing requests for help. I worry about that a lot, especially as concerns those who are closest to me.
I know they are willing to help; they offer to help, often. I know they understand how reluctant I am to ask for help. I also know that they have lives of their own. I know I am inconvenient. I know it will get worse. That worries me.
Friday, 26 December 2014
Transitions
It's nearly 5:00 PM; it's been a very long, very busy day. It started with a phone call from a Home Care worker at 8:20 AM to advise me that she would be filling in for my regular worker today. Then a call from one of my daughters at around 9:15 AM, followed by a text from another at 10:00 AM, another call from a daughter at 11:00 AM, and the arrival of all of them at 11:45 AM. I don't mind all of this, in fact in some ways it is kind of nice, that there are so many of them here all at once.
As I see them all here, I wonder if this will ever happen again, if I will ever see them again here in my home. It's unlikely, given my current situation and their situations. The only way most of them could make it is with air fare supplied. On top of that, next year will be their mother's turn, regardless of my health or situation with ALS. It's also unlikely to happen this summer despite plans for a big 60th birthday party. No, I think this was it. That makes me kind of sad.
I have really enjoyed having my grandchildren here. While I relate to my adult children well, often sharing their humour, I derive a great deal of joy and pleasure watching my grandchildren, interacting with them, knowing that they know me and might just remember me. I have tried very hard to make their visit exciting; I think I was successful. I think my children enjoyed it as well, along with Mom and Ray.
Now things are winding down. Mary, Albert, Rose and Quinn are at the airport, courtesy of a ride from Lewis in his Jeep and Ricky in my truck. There are fewer people here. Those of us remaining are just a tad quieter. The only real intrusion on my thoughts is "Barbie Dream House" on Netflex, on now at the insistence of Charlotte, my four year old granddaughter. If that was not on, it would be "Midsomer Murders", a new addiction on the part of Mom and Ray thanks again to Netflix.
The apartment is still a mess although the mess is lessening. The toilet is still sluggish although not quite a sluggish. The floors are still dirty, although not quite as dirty. Maintaining a clean home gets exponentially more difficult when you have children in it. As the number of children decreases, so does the mess. I must say, however, that given the choice of having my grandchildren or having a tidy house, the grandchildren win hands down. They are truly delightful.
Tomorrow will be a quiet family day for Meaghan, Lewis and Charlotte. We will likely see them for a short while; they plan on having dinner at Kate's place, then leaving early in the morning to drive to the coast, along with Ricky. Then my home will be completely lacking in the sounds of small children. I will complain that it is too quiet, that there is not enough mess, that I miss them. It's funny how it works that way.
As I see them all here, I wonder if this will ever happen again, if I will ever see them again here in my home. It's unlikely, given my current situation and their situations. The only way most of them could make it is with air fare supplied. On top of that, next year will be their mother's turn, regardless of my health or situation with ALS. It's also unlikely to happen this summer despite plans for a big 60th birthday party. No, I think this was it. That makes me kind of sad.
I have really enjoyed having my grandchildren here. While I relate to my adult children well, often sharing their humour, I derive a great deal of joy and pleasure watching my grandchildren, interacting with them, knowing that they know me and might just remember me. I have tried very hard to make their visit exciting; I think I was successful. I think my children enjoyed it as well, along with Mom and Ray.
Now things are winding down. Mary, Albert, Rose and Quinn are at the airport, courtesy of a ride from Lewis in his Jeep and Ricky in my truck. There are fewer people here. Those of us remaining are just a tad quieter. The only real intrusion on my thoughts is "Barbie Dream House" on Netflex, on now at the insistence of Charlotte, my four year old granddaughter. If that was not on, it would be "Midsomer Murders", a new addiction on the part of Mom and Ray thanks again to Netflix.
The apartment is still a mess although the mess is lessening. The toilet is still sluggish although not quite a sluggish. The floors are still dirty, although not quite as dirty. Maintaining a clean home gets exponentially more difficult when you have children in it. As the number of children decreases, so does the mess. I must say, however, that given the choice of having my grandchildren or having a tidy house, the grandchildren win hands down. They are truly delightful.
Tomorrow will be a quiet family day for Meaghan, Lewis and Charlotte. We will likely see them for a short while; they plan on having dinner at Kate's place, then leaving early in the morning to drive to the coast, along with Ricky. Then my home will be completely lacking in the sounds of small children. I will complain that it is too quiet, that there is not enough mess, that I miss them. It's funny how it works that way.
Thursday, 25 December 2014
Gratitude
It's amazing to me that this, of all days, is the day when I find it so difficult to write. That perhaps springs both from my reasons for writing and the writing process itself. I write to share my life. Today my life is full of sharing, crowded with people who know my story, who are walking this walk with me. There is no need to write when it is all here.
Then there is the process of writing. I need a quiet space to contemplate, in most cases, that which eventually rolls out of my fingertips. So many times I start with one thought, then moving to another. With so many people around, there is no quiet contemplation. There are interruptions, shouts, noises, and needs all around me. To focus here nears impossibility. Yet here I am, writing.
Christmas morning was as Christmas morning should be. There were stockings to unstuff, presents to unwrap, predictable meltdowns by both adults and children, food to prepare, and endless tidying to do. Toys are spread from wall to wall in my living room. Bags stuffed with gifts line the hallway, spreading from the living room, delta like, onward to line the walls of the foyer. Boxes and bags are everywhere, some full, some empty, some awaiting a load, others ready for transport. The smell of chocolate is everywhere, as is the smell of turkey roasting in the oven.
We are a family; great-grandparents, grandparents, parents and children. There are four generations of us here, something I will not see again, something that will not happen for me. I am grateful for the generations I have; I will not miss that which I will never see. I can regret that I will not see it, but I cannot miss it.
One of the great things of this day, of this kind of day, is that we can see beyond the walls of our own years, out to those who go before and those who will come after. We can see the rewards of our work as parents, enjoy the benefits of being grandparent. I am enjoying those benefits today, my grandchildren excitedly showing me their gifts, laughing as they play, exploring my home. I am enjoying the benefits of my own children as they help me with the food preparation, sharing in the ongoing effort of tidying and clearing away.
Dinner will happen soon. Once again there will be massive amounts of food on my table. Once again my family will share a meal, that ritual that binds in almost all cultures. Christmas, beyond its religious meaning, has become a secular holiday of sharing and family. Today, I am enjoying that. I am grateful.
Then there is the process of writing. I need a quiet space to contemplate, in most cases, that which eventually rolls out of my fingertips. So many times I start with one thought, then moving to another. With so many people around, there is no quiet contemplation. There are interruptions, shouts, noises, and needs all around me. To focus here nears impossibility. Yet here I am, writing.
Christmas morning was as Christmas morning should be. There were stockings to unstuff, presents to unwrap, predictable meltdowns by both adults and children, food to prepare, and endless tidying to do. Toys are spread from wall to wall in my living room. Bags stuffed with gifts line the hallway, spreading from the living room, delta like, onward to line the walls of the foyer. Boxes and bags are everywhere, some full, some empty, some awaiting a load, others ready for transport. The smell of chocolate is everywhere, as is the smell of turkey roasting in the oven.
We are a family; great-grandparents, grandparents, parents and children. There are four generations of us here, something I will not see again, something that will not happen for me. I am grateful for the generations I have; I will not miss that which I will never see. I can regret that I will not see it, but I cannot miss it.
One of the great things of this day, of this kind of day, is that we can see beyond the walls of our own years, out to those who go before and those who will come after. We can see the rewards of our work as parents, enjoy the benefits of being grandparent. I am enjoying those benefits today, my grandchildren excitedly showing me their gifts, laughing as they play, exploring my home. I am enjoying the benefits of my own children as they help me with the food preparation, sharing in the ongoing effort of tidying and clearing away.
Dinner will happen soon. Once again there will be massive amounts of food on my table. Once again my family will share a meal, that ritual that binds in almost all cultures. Christmas, beyond its religious meaning, has become a secular holiday of sharing and family. Today, I am enjoying that. I am grateful.
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