The Beginning Is The End

As I was reading the news articles on my phone this morning, I came across a CBC article about a man from Toronto who had gone to Switzerland for assisted suicide. He had left a video commentary in which he noted that he was fortunate to have the resources to go to Switzerland for this, while a great many Canadians suffered and died terrible deaths when an assisted suicide option would have given them more dignity and choice in their lives. He was a lawyer, and an advocate for assisted suicide. The courts have ruled that his video should be played for the current parliamentary hearings on implementation of an assisted suicide law here in Canada.

He had ALS. It seems a great many advocates of assisted suicide have ALS. Perhaps this reflects the sad reality of this disease, how it takes your life slowly, stealing bits of you one piece at a time, eventually leaving nothing but an active mind inside a dead body, persisting in life only through the assistance of machines. For some, this machine assisted life is sufficient. Their internal life, the life of their mind, is enough for them to keep going, to look forward to tomorrow.

I think about myself in that regard. I have already decided that I do not want mechanical breathing, an external ventilator. When I lose the muscles that drive respiration, that will be enough. I am not so sure about a feeding tube; starving to death takes an awful long time and is very uncomfortable, or at least so I am told. Remember too, if you cannot eat, drinking is also problematic, taking away another one of the pleasures in my life. As my Dad once said, if you can't taste the liquor, you are simply drinking for effect.

I was looking at my legs this morning. They are wasting away. I can see the loss of muscle clearly in my upper legs. Oddly enough there is still enough strength in my lower legs that I can lift my heel up using my toes. This strength does me little good except that I can do a pale imitation of tapping my feet, only backwards, heels up instead of toes up. I still have some strength but have long since lost purposeful movement, useful movement.

This is what will happen to my arms. It will take time but I have already seen the beginning, the loss of muscle tone and form. With this disease, to see the beginning is to see the end. Once it starts, it doesn't stop, or at least for most of us it doesn't stop. In rare cases it takes a rest, a real long rest. Even in my case things slowed down for several months last year. It began again, and it will continue, fitfully, until the end. I suspect the reason PALS choose suicide, assisted or otherwise, is just that, that the beginning is also the end.

The True Miracle

Painting Day went well yesterday. I had expected about 8 or 10 people to show up. We ended up with a dozen. I made food for about a dozen so that went well. You might think with that many people in the apartment we would be getting in each other's way; I was the only person who really got in the way, and was politely reminded on several occasions to remove myself. The day was almost without disaster; Brad cut his finger quite badly while cooking dinner. We looked after him and he is going to get it looked at by the doctor today.

Things went really well with the work too, with people deciding what they would do or taking guidance from others about what to do. For some it was their first experience with this kind of thing; some had never really done any painting, many had no experience with gyproc fill or wood fill, while others had a full set of tools and a lifetime of experience. We all worked together, everyone contributed, and we accomplished much. It was the best kind of day. I even got to help, painting doors and doing a bit of touch up here and there.

It was a comment by one of my friends that really got me to thinking about all of this last night. When I said how much I appreciated her help, she said she "really hadn't done much" and "hadn't been very successful" at what she did. I have to help her understand that it is not the work, nor the quality, that makes the difference. It is the mere act of being here, of participating, of enriching my life and the lives of others where we really make a difference. Had she painted only one brush stroke, filled and sanded only one flaw in a wall or baseboard, had she simply passed tools and paint or food and drink, she would have been immensely helpful in the day. She went far beyond that, yet saw her contribution in the limited scope of what she did instead of who she was and the value of her real contribution.

I have come to learn that the value of the people around me is not in what they do, but in the mere act of showing up. Being there is the most important thing anyone can do for me in this time of my life. I do not see myself as needy, but I know that I need these people in my life, flawed and imperfect as we all are. I need them, not for what they can do, but for who they are. The gift they give me is not just the contribution of labour; it is the sound of their laughter, their words of encouragement, their touch on my shoulder. That people who were once strangers, once distant, have become so close to me; this is the true miracle.

To give of self is the truest gift of all, the most successful thing to give.

Painting Day

There is brilliant sunshine blasting into my window, forcing its way through the light skim of cloud that sits on the distant horizon, warming my apartment to the point of near discomfort. Windows will be opened today. It is a beautiful start to what will be a very busy day. The trouble with this beautiful sunshine is that it highlights every speck of dust, every flaw of gyproc, every unpainted surface on every wall where the sun shines. Only those parts of my apartment shielded from this glaring eye of Sauron escape its inspection.

Fortunately today is the painting party. Today a group of my friends are coming over to help me paint and finish the walls and trim, signalling the near completion of what has been a marathon project. These renovations began on January 8th; today it is March 29th. We are in the midst of week 12 of this effort to make my apartment more wheelchair friendly. This effort has involved a great deal of help from my brother Jim, from my friends Mike and Dion, from other friends like Anne and Dan and Brian, and today from many other friends.

We have, as a group, made a bigger bathroom, twice as big as before; we have put in a wheelchair shower, handicapped toilet with washing system, and a wheelchair sink; we have put in wider doors to my bedroom and bathroom; we have widened my hallway near my door so it is easier for me to get around; we have pulled out carpet and underlay, ripped out gyproc, torn out plumbing, removed old doors, filled, sanded, repeated and generally worked together in all kinds of ways. Today, we paint.

I am forever indebted to those kind people around me who have put so much effort into making my quality of life better. The ultimate irony is the shortness of my life expectancy. While I hope for much, the reality is that ALS will most likely take my life within the next 24 to 36 months. Still, even in this situation, these changes to my apartment make a massive difference for me, some in ways that are almost invisible to see, others so plain as to be unmissable.

Next week we are getting together again, here at my apartment. Jim will be in town that weekend too. I have called it the "Clean Up and Wine Making Party". Mostly it will be the wine drinking party, a celebration, not just of what we have done, but of our friendship and our ability to care for one another. While I am the blessed recipient of this generosity, I have seen this group do the same for other members, for others in our "gang". While we may paint today, we will also commune, share, laugh and enjoy. This is the only gift I can give in return, a place for this joy. It seems so little when I have been given so much.

Hitting The Wall

Not everything about having ALS is bad. While I have written in the past about "ancillary benefits" of ALS, my comments have typically focused on the negative, on the things that this disease does outside of its direct effects, things like wheelchair issues, expenses, lifestyle changes, and onward ad nauseum. Yet there are some good things which have come to me because of this illness, gifts to be found in this dark pile of coal.

One of the things this illness has given to me has been the ability, inconsistent as it is, to see the world around me through kinder, gentler eyes; to see people and their lives more fully, from a more compassionate point of view. I suspect this more philosophical view of people and life has something to do with the increased amount of time I spend sitting, looking out my window, and thinking about stuff. This, by no means whatsoever, implies any great wisdom on my part. I simply get more time to think and ponder those things which are really important in life.

Last night was a great example of this. One of the waitresses who served our table at "Name That Tune" was having a really rough night. After struggling to get things done in a timely manner, she fell behind. Customers got impatient, there were some clear and intended remarks from a couple of folks about quality of service. The waitress did her best, but after the customers left I could tell she was very upset. I told her, "Don't worry about that. It seems like you are having a very busy night." A tear or two fell down her cheeks as she struggled to maintain what composure she had left.

I took a few minutes to console her, to listen to her, to understand all the things in her life that were going wrong, and how they had come to crescendo that day. I commented that it sounded like she had "hit the wall". More tears, and then composure returned. She went on to her work; a couple of friends and I continued to chat. I said something about all of us hitting walls in life and one of the gang said "The walls get bigger as you get older."

While that may be true in a general sense, that the issues in life get larger as your years progress and more complicated issues arise, there are some walls that come early to some of us. ALS was a big wall for me, yet I know people in their teens and twenties with this illness. That's a big wall, very early. While the walls we hit as young people seem large, a lack of life experience and perspective magnify their importance in our mind. As we age, we gain that experience and perspective. The walls are there, big and small; we just learn to handle them better, at least some of us do.

For me, the lesson was not that we hit walls. The lesson was that it took me but a few moments to tell a young person struggling with the challenges in her life that she was a capable, worthwhile person who deserved to be treated kindly. I am not sure I would have had the wisdom to do that in years gone by. In a busy, workaday world, I am not sure I would have taken the time to be kind, or to consider what else might be going on in her life.

Perhaps it is ALS, perhaps it is simply getting older, but I now realize for a certainty how simple it is to be kind and how pointless it is to be unkind. I will not be perfect in this; I will continue to fail. I will continue to learn and grow, taking the gifts where I find them, with gratitude that I still have time to learn life's lessons, before I hit the big wall at the end.

Headache

This is my third morning with a headache, the same headache, in the same place in my head. It began on Tuesday and remains with me still. This headache is a result of a hard "sit down" into my wheelchair. When I get up in the mornings I continue to try to get myself vertical, using that verticality to pull up my pants rather than trying to wiggle into them while sitting on my bed. It is both good exercise for my now shrinking leg muscles, a kind of therapy for them, as well as a kind of victory over ALS.

On Tuesday morning, while vertical after pulling up my pants, I went to sit back into my wheelchair. This effort requires that my arms slowly settle my weight backwards, carefully placing myself into my chair. As my arms are weakening, this settling effort has become more of a controlled crash versus a soft landing. On Tuesday the landing became a full on collapse. At the point of impact my head compressed downwards onto my spine, generating one of those passing compression headaches, or at least I thought it would be passing.

On Tuesday there was simply a dull ache over my right ear, inside my skull. For much of the day it simply sat there, not causing tremendous trouble, reminding me that the downward path to my wheelchair is not something to be taken lightly. I went to bed Tuesday night thinking it would be gone by morning. Wednesday morning arrived and my head still hurt.

I moved through the day Wednesday with this dull ache, not thinking much about it. Then, at around 4:00 PM, I noticed two separate things which caused me some worry. First, I noticed that when I bet over to pick things up from the floor, the pain in my skull escalated from simply a nuisance to downright nasty, to the point where I would express the pain verbally with words that one cannot use in front of small children. The second thing I noticed was nausea, the feeling in my stomach that all was not well within me.

These two things combined made me think that perhaps my hard sit-down had caused a small bleeder in my brain. I say this because I am on all kinds of blood thinners, four different kinds to be exact, as a result of my heart attack last summer and my DVT in September. As the doctor said, I am a recipe for disaster when it comes to bleeding. The anti-coagulation clinic warned me that any "unusual" headache should precipitate an immediate visit to ER for a CT scan.

All of this meant that I spent yesterday evening in the ER of Foothills Medical Centre here in Calgary. The weird part is that I was in the same bed in ER where they initially diagnosed my ALS. It was a strange return and left me thinking of the strange hands of fate. As it turns out there is not bleeder, I just have a really persistent headache. They gave me two Tylenol and said it if lasts for a couple more days I should check in with them again.

So today I sit with the same situation. On the plus side, I am fairly confident that I am not going to have a stroke. Thank goodness for good old Canadian health care.

Snowflakes

It's snowing today, those larger flakes of springtime snow, soft and fluffy, wet, the kind that only comes when it is near the border of freezing and slush. They drift by my window, a light wind lifting them up, nature pulling them down, their path a meandering wander from heaven to earth. There are millions of flakes, billions of flakes, all unique, all formed in the same way, all on a random pathway, all driven by forces beyond their control, each of them separate yet all of them connected. When the season of their life is complete they will flow into the mass of moisture that is our rivers, then lakes, then rivers again, flowing ultimately to the sea, once again to return into the eternal cycle that is their life.

I look at the snow and cannot help but think of humanity, of how some of us are formed in one way and others in another, yet all of us arriving in life the same way, pure, as yet untouched by the voyage. We all move from birth to death, from creation to destruction, some driven, some lazily drifting, some moving against the flow of life, others moving with it all too quickly. We are all creatures of the same creation, all a part of a greater whole, yet each of us is a unique and individual part of that creation. As our life flows ever onward, there are times when we are lifted up, times when we are driven down, times when we are simply drifting. In the end we will all die, our bodies rejoining the stardust from which we were created, once more melded into that eternal cycle.

This is the time in my life when I can see the end; the voyage is almost over. Soon, like a snowflake, I will reach the final drift in my journey. Soon, like the snowflake, I will rest, unmoving. As I watch this play of wind and weather outside my window, I wonder how many more of these I will get to see, how many snows, how many storms, how many days of sun and rain. Like the snowflake, I move at the average speed of humanity, making up a part of that mass, sometimes fast and sometimes slow. Like the snowflake, I am one of billions, all of whom will end up in the same place.

Unlike the snowflake, I will get to see many seasons in my life. I have seen nearly 60 winters and summers. Soon I will see my last. I don't know if this is my last year, but my last year is fast approaching. The average ALS patient lives for three to five years after onset. My onset was in the spring of 2011; it is fast approaching three years.

Lessons From Laminate

It is my first day with laminate flooring, already I am learning how this will make a difference in my life. First and foremost, it is a lot easier to roll a wheelchair on laminate versus carpet. This was the intended effect and for this I am happy. This easier rolling is not without its concomitant downside, however. At the same time as it is substantially easier for me to mobilize myself, it is equally easy for my wheelchair to roll on its own, without motive force behind it. If I sit without my wheels locked, my chair will constantly seek to find the low spot on the floor. In a 40 year old building there are a few low spots.

I discovered how easy it is for my wheelchair to engage in exploration without me aboard as I got into bed last night. The process of getting into my bed involves lining my chair up with the M-rail on the bed then using the combination of the wheelchair arm and the M-rail to lift and transfer myself onto my bed. I then lift my feet onto the seat of the chair and use it as a way to steady my backwards wiggle into an approximation of my sleeping location. Once in place, I nudge the wheelchair out of the way so I can swing my legs over the edge of the bed, something necessary for midnight access to my jug.

What I discovered on doing this last night is that a nudge on laminate has a substantially superior effect as compared with a nudge on carpet. My wheelchair went, and went. Fortunately there are still some misplaced items in my bedroom, one of which stopped my wheelchair before it went all the way across the room. Note to self; don't nudge quite so hard.

There was the very pleasant discovery that when my feet hit the floor in the morning, as I arose from sleep, my toes were less likely to curl under my feet with laminate. They tend more to sliding frontwards instead of gripping, folding backwards in the process. It is the dreaded toe drop. Prior to laminate I would place my feel on the carpet and drag them slightly backwards to straighten my toes. This morning, no dragging.

After getting out of bed and rolling, easily as can be, into my living room, I noticed how much lighter the room looked in the morning sun. The laminate reflects the light; carpet absorbed the light. This has the impact of making the living room seem brighter and much more inviting. Unfortunately the laminate, in all its brightening glory, shows every bit of dust imaginable, and there is plenty of still still lingering from sanding the gyproc filler. On the plus side, that is for Rosa to deal with, assuming I can convince her that the dust is hers to manage. I think I can; it's just another lesson from laminate.