Whenever my Dad had a hangover, and he had plenty of them, he used to say "My body is rejecting me." Now I get to say that for real. ALS is an auto-immune disease. My body is attacking my motor neurons.
We don't know what causes it or what triggers it, although there are lots of suspects. Scientists are looking at correlation between trauma and ALS, statin cholesterol drugs and ALS, chemical exposure and ALS, and so on. No matter the cause, my own body is doing this to me.
The unfortunate reality is that I have ALS, regardless of source. My body is rejecting me. In return I am going to reject my body. What do I mean by that? I am going to fight to keep my spirits and approach to life. I am going to live as much in my mind as I possibly can. I am going to daily remind myself that I am more than my physical self.
Sometimes that is easy, such as when I do physical things that are fun; I just do them differently. Other times I am forced to confront my physical challenges. Yesterday my ALS Case Manager brought my interim wheelchair. I didn't like it. She brought me a walker; I didn't like it. She brought me a shower chair; I didn't like it.
I kept them, but I rejected them.
Friday, 7 December 2012
Thursday, 6 December 2012
A View From My Window
Okay, I will admit it right out front. I choose that title to be provocative and to make people think. I bet you all thought there might be some deep philosophical statement about how life looked from my new point of view. Sometimes a cigar is just a cigar.
What I really want to share is the view from my apartment window, but not in pictures. I want to share the feeling of it, the sense of it, the place of it.
My apartment main window looks out over the top of Market Mall. The Bay sign shines brightly as does Toys R Us. The street is busy and the parking lot is right across that street. So what makes the view so interesting?
In the center of my window there is a fir tree. Every day that tree looks different. One day it is snow covered, another day it sways in the wind and yet another it stands still and calm. Behind the tree is the bulk of the shopping mall, square and squat, a giant cement box hulking in the midst of a gianter parking lot.
But in the back of all of this is the sky and the rising sun. Each day I get to sit, enjoy my morning coffee, and watch the sky creep into life. Today is cloudy, dark, heavy. Yesterday was bright and colourful, a classic prairie sunrise. Tomorrow will be different again.
As the last month has gone by, the sun has worked its way south. Soon it will change directions and return, crawling back like some reluctant lover, forcing itself inch by inch into my view.
I can't change any of it but I love seeing it each morning as I sit and enjoy my coffee.
What I really want to share is the view from my apartment window, but not in pictures. I want to share the feeling of it, the sense of it, the place of it.
My apartment main window looks out over the top of Market Mall. The Bay sign shines brightly as does Toys R Us. The street is busy and the parking lot is right across that street. So what makes the view so interesting?
In the center of my window there is a fir tree. Every day that tree looks different. One day it is snow covered, another day it sways in the wind and yet another it stands still and calm. Behind the tree is the bulk of the shopping mall, square and squat, a giant cement box hulking in the midst of a gianter parking lot.
But in the back of all of this is the sky and the rising sun. Each day I get to sit, enjoy my morning coffee, and watch the sky creep into life. Today is cloudy, dark, heavy. Yesterday was bright and colourful, a classic prairie sunrise. Tomorrow will be different again.
As the last month has gone by, the sun has worked its way south. Soon it will change directions and return, crawling back like some reluctant lover, forcing itself inch by inch into my view.
I can't change any of it but I love seeing it each morning as I sit and enjoy my coffee.
Wednesday, 5 December 2012
New Toys
The ALS Case Manager came by today. It was an interesting visit. First of all, her approach was very helpful and positive. She felt the apartment would be just fine for a long time and that there were only a few things I needed to make my life easier. We talked a lot about my personal support network and how Alberta Health Services could help.
On the other hand, there is some bad news. Apparently AHS will not pay for house-cleaning. So I still have to clean my own bathroom or hire someone to do it. :(
There were a couple of other interesting outcomes from the visit. We are ordering a transfer seat for my bathtub so if I get tired I can sit to take a shower. I don't have to right now but we are thinking ahead. In addition we are getting a rolling stool / stand for me to use in the kitchen. Right now I use a chair from my dining set. The rolling stand will act as a walker or brace whenever I need it, increasing my sense of safety and stability in the kitchen. Those of you who know how much I like to cook will understand how important this is to me.
And now the big news... I am being fitted for a personal, custom made wheelchair. I only need the chair for longer outings, such as going shopping or going on some sort of excursion. However it makes more sense to get one now for those times that I need it rather than waiting until I need one all the time before ordering it. As the Case Manager says, just because I have it doesn't mean I have to use it all the time, but having it means I can use it when I want to.
She was quite positive around my upper body strength and the longer term travel options. As she said, I can do most things from a wheel chair. Mobility is not as big a problem as breathing. Since my ALS has started in my legs, as long as it does not progress too rapidly or go after my breathing muscles, I can still do a lot for things for at least the next year or so, even when my legs fail completely.
There is a lot more happening, but that will be for another day.
On the other hand, there is some bad news. Apparently AHS will not pay for house-cleaning. So I still have to clean my own bathroom or hire someone to do it. :(
There were a couple of other interesting outcomes from the visit. We are ordering a transfer seat for my bathtub so if I get tired I can sit to take a shower. I don't have to right now but we are thinking ahead. In addition we are getting a rolling stool / stand for me to use in the kitchen. Right now I use a chair from my dining set. The rolling stand will act as a walker or brace whenever I need it, increasing my sense of safety and stability in the kitchen. Those of you who know how much I like to cook will understand how important this is to me.
And now the big news... I am being fitted for a personal, custom made wheelchair. I only need the chair for longer outings, such as going shopping or going on some sort of excursion. However it makes more sense to get one now for those times that I need it rather than waiting until I need one all the time before ordering it. As the Case Manager says, just because I have it doesn't mean I have to use it all the time, but having it means I can use it when I want to.
She was quite positive around my upper body strength and the longer term travel options. As she said, I can do most things from a wheel chair. Mobility is not as big a problem as breathing. Since my ALS has started in my legs, as long as it does not progress too rapidly or go after my breathing muscles, I can still do a lot for things for at least the next year or so, even when my legs fail completely.
There is a lot more happening, but that will be for another day.
Tuesday, 4 December 2012
Just Another Ordinary Day
I woke up this morning and thought about ALS. I made breakfast thinking about how this might work as the disease progresses. I made my coffee and wondered about teaching my son to do it the way I like it, because there will come a day when I cannot do it. It looks like another ordinary day.
That's right. It's another ordinary day. I got up. I shaved and brushed my teeth. (And cleaned the toilet too, but not with my toothbrush.) I got dressed for work. I made coffee and breakfast and now I am sitting down to eat and write my blog.
It's another ordinary day. I will go to work in about a half an hour. I will do my work and make things happen. After work I will go to Trivia Night at the Unicorn Pub. Before going I will make my usual batch of guacamole and take it with me the way I always do. I will have a few beers with friends and come home to bed.
It's just another ordinary day. But there is nothing ordinary about it.
That's right. It's another ordinary day. I got up. I shaved and brushed my teeth. (And cleaned the toilet too, but not with my toothbrush.) I got dressed for work. I made coffee and breakfast and now I am sitting down to eat and write my blog.
It's another ordinary day. I will go to work in about a half an hour. I will do my work and make things happen. After work I will go to Trivia Night at the Unicorn Pub. Before going I will make my usual batch of guacamole and take it with me the way I always do. I will have a few beers with friends and come home to bed.
It's just another ordinary day. But there is nothing ordinary about it.
Monday, 3 December 2012
I'm Still Me
Having a terminal illness changes you, but not as much as you might think. I am still the same person I was two weeks ago. I have the same issues and make the same mistakes (maybe different ones, but you know what I mean). I have the same fears and frailties. If having a terminal illness made you a saint, we would all be saints because we all suffer from the terminal illness of living.
Yesterday I had one of those days, the days where you do and say things and then later on go "what the heck was that all about". I think the only thing having ALS does is add some intensity to these kinds of days. Since time is short, everything takes on an urgency that it might not otherwise have.
What I need to do is remember that I am the one with the short shelf life, and just because I have a timeline doesn't mean everyone else has to have a timeline. I need to remember that "one day at a time" means enjoying each day, not stuffing it. Patience is important, for me and for everyone else.
Forgiveness is also important. I need to forgive others for their challenges, and myself for mine. So today I am going to focus on being patient and forgiving. I wonder how I will do?
Yesterday I had one of those days, the days where you do and say things and then later on go "what the heck was that all about". I think the only thing having ALS does is add some intensity to these kinds of days. Since time is short, everything takes on an urgency that it might not otherwise have.
What I need to do is remember that I am the one with the short shelf life, and just because I have a timeline doesn't mean everyone else has to have a timeline. I need to remember that "one day at a time" means enjoying each day, not stuffing it. Patience is important, for me and for everyone else.
Forgiveness is also important. I need to forgive others for their challenges, and myself for mine. So today I am going to focus on being patient and forgiving. I wonder how I will do?
Sunday, 2 December 2012
Seasons
One of the things they say in the ALS Manual (yes, there is an ALS Manual and you can find it on the ALS Canada Website - www.als.ca) is that this disease will change your relationships with friends and family. For some, it will pull them closer and for others it will push them away. Some people have the strength to face a terminal illness, and for others the reality of this disease is just too hard to take.
Another unfortunate reality is that life goes on. People come into your life and leave your life just as if you didn't have ALS. Some of those people offer a tremendous enrichment to your life while others go as quickly as they can. I have already experienced these things. In the ultimate irony, I met a fascinating woman just three days before I was diagnosed. After long and careful consideration, she felt that she simply could not build a relationship in this situation. It is easy to understand her point of view.
I've also had friends simply drop off the radar, completely unable to understand or cope with what is happening to me. That, too, is understandable. Fortunately for me I have an amazing family and a core of people in my life who have the strength to face the future with me and the wisdom to know that life is short for all of us. I am lucky to have these people in my life.
As for those who come and go, so do the seasons. I love the seasons but as we drift from fall into winter, I learn to love the new season for its own reasons and to remind myself that the old seasons will eventually return. I may not see them all, but they will be out there somewhere.
Another unfortunate reality is that life goes on. People come into your life and leave your life just as if you didn't have ALS. Some of those people offer a tremendous enrichment to your life while others go as quickly as they can. I have already experienced these things. In the ultimate irony, I met a fascinating woman just three days before I was diagnosed. After long and careful consideration, she felt that she simply could not build a relationship in this situation. It is easy to understand her point of view.
I've also had friends simply drop off the radar, completely unable to understand or cope with what is happening to me. That, too, is understandable. Fortunately for me I have an amazing family and a core of people in my life who have the strength to face the future with me and the wisdom to know that life is short for all of us. I am lucky to have these people in my life.
As for those who come and go, so do the seasons. I love the seasons but as we drift from fall into winter, I learn to love the new season for its own reasons and to remind myself that the old seasons will eventually return. I may not see them all, but they will be out there somewhere.
Saturday, 1 December 2012
Stress is the Real Killer
After only a few days at work, and successful days for the most part, I can see why doctors and therapists suggest that ALS patients leave work as soon as possible. Stress, that's why.
My work can be very stressful. In addition I am in the late stages of finalizing my divorce with the attendant stress associated with letters from lawyers, legal bills, and such things. Between these two things, I have a lot of additional stress in my life on top of the stress of having a terminal illness. Yesterday was a tough day.
Stress has been linked to the rate of progression in ALS. In a reseach paper published in "The FASEB Journal" published online in August 29, 2011, the authors suggest that "stress is capable of accelerating disease progression ... for ALS."
The unfortunate part of this is that I derive great satisfaction from doing good work and I love the place where I work. The people in my work family are amazing for the most part, and those that are not all that great are also not all that important to me.
So what to do? Well no matter what fulfillment I derive from my work, the combined stresses of the divorce, the disease and my work are probably making matters worse instead of better. The stress of the divorce is not going to stop, nor can I stop the disease, so my first focus will be stopping work in as timely a manner as possible, or as my neurologist said "sooner rather than later".
On Monday I will go to work. I go to the ALS clinic on December 12th. It is a multi-disciplinary clinic with neurologists, therapists and counselors. I think I will ask them for input and guidance. Then I will decide what to do about work.
For today I am going to enjoy Saturday and a day away from the office. I slept in this morning doing nothing until 9:00 AM. This afternoon a friend is coming over and we are going to put up the Christmas tree.
My work can be very stressful. In addition I am in the late stages of finalizing my divorce with the attendant stress associated with letters from lawyers, legal bills, and such things. Between these two things, I have a lot of additional stress in my life on top of the stress of having a terminal illness. Yesterday was a tough day.
Stress has been linked to the rate of progression in ALS. In a reseach paper published in "The FASEB Journal" published online in August 29, 2011, the authors suggest that "stress is capable of accelerating disease progression ... for ALS."
The unfortunate part of this is that I derive great satisfaction from doing good work and I love the place where I work. The people in my work family are amazing for the most part, and those that are not all that great are also not all that important to me.
So what to do? Well no matter what fulfillment I derive from my work, the combined stresses of the divorce, the disease and my work are probably making matters worse instead of better. The stress of the divorce is not going to stop, nor can I stop the disease, so my first focus will be stopping work in as timely a manner as possible, or as my neurologist said "sooner rather than later".
On Monday I will go to work. I go to the ALS clinic on December 12th. It is a multi-disciplinary clinic with neurologists, therapists and counselors. I think I will ask them for input and guidance. Then I will decide what to do about work.
For today I am going to enjoy Saturday and a day away from the office. I slept in this morning doing nothing until 9:00 AM. This afternoon a friend is coming over and we are going to put up the Christmas tree.
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