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.

Making Do

I awoke this morning to the sounds of hotel staff checking in the room to see if they could clean it. Apparently 8:18 AM is considered an appropriate time to check. I am in a hotel right now because of the disruption in my apartment. Yesterday the guys relocated all of my furniture and tore up the old carpet. Today the flooring team is in laying a new laminate floor for me, one that will be easier to handle in my wheelchair.

The hotel I am staying at is the Holiday Inn Calgary-Airport, a nice hotel where I have stayed in the past, albeit never in a wheelchair. I chose this hotel specifically because my brother Peter is staying here and I thought we might share a room, saving both of us half the cost. Unfortunately this hotel has but two wheelchair accessible rooms and both of them are currently under renovation, so I am staying in a standard room.

Staying in a standard room in almost any hotel means no access to the bathroom, tough navigation around furniture, narrow entry doors and just an all round fun time. I did this to myself; if I hadn't wanted to stay with Peter I am sure there would have been other hotels with handicapped rooms nearby. I know they exist; I've read about them online. I just wanted to spend an evening with my brother.

I thought about the ratio of handicapped rooms in this hotel, only two of them as opposed to the dozens of standard rooms. It made me think about the ratio of handicapped travelers to able bodied travelers. Standardization is critical to success in these branding efforts, where hotel chain looks for one kind of room and furnishes them all the same. It makes a cost difference and a presentation difference. Customers like to know what they are getting before they make the reservation.

The challenge for us wheelchair folks is that these accessible rooms are limited. They are often used up quickly; I regularly find that there is no room in the inn. It's just the nature of things; people who don't need the accessible rooms will ask for them because the rooms are larger and the bathrooms are larger too. There are increasing numbers of elderly people travelling, where the grab bars and wider room between the bed and the wall make a big difference. And then I show up.

I suspect that hotel chains will have to adapt over time; I also suspect it won't happen in a hurry. Business only changes when the market changes. This change will happen slowly. A change in the number of handicapped rooms will also happen slowly, especially given that hotels renovate about once every five years. In the mean time, we will just have to make do.

Out Of The Way

Today will be one of the most frustrating days of my renovations. We are moving all of the furniture out of my bedroom and the living room, pulling up the carpet and preparing for the installation of laminate flooring tomorrow. It is getting increasingly difficult for me to roll my wheelchair over the carpet. I can still do it, but the work of it is tiring. And when I say "we", I really mean Jim, Peter, Mike and Dion.

What will make this day frustrating is that I will be completely unable to help, watch, supervise, micromanage, get in the way, or any of the other stuff which has made me feel a part of the process so far. In terms of moving things, both the limits of my wheelchair and the limits of my strength will mean I am just more in the way than anything. In terms of coordinating, suggesting, or expressing opinions, that's already enough of a challenge for those who help me. Imagine the worsening challenge of having me not just chatting and commenting, but doing so while every person must step and stumble around me.

The general consensus is that I must go out today, at least while the bulk of the work is going on. Alternatively, if I hang around I must be out of the areas where work is being done, away from view and the working pathways. It would appear that my limitations will now completely blunt any ability I would have to make successful input into this part of the renovations.

My brother tells me he takes great joy in not being around while others do this kind of work, that it is a good thing to leave and let others do the work for me. While I can agree with this sentiment and have spent a great deal of time not involved in the work of this renovation, I still feel the need to see it, to have some engagement with it. These renovations are not something I wanted; they are something thrust upon my be time and situation. These changes are made unwillingly. At a minimum I would hope to have something to say about them.

On the other hand, I will have a new floor in place tomorrow evening, a smooth rolling surface. Even if things go slowly and it takes an extra day, I will get to sleep in my own bedroom tomorrow night. For tonight I am at a hotel. No, I could not get a wheelchair room, anywhere. So it will be a regular room. Fortunately I will simply be sleeping there. I just need a place to be while I cannot be at home; I need to be out of the way.

Lenses

My shoulders hurt this morning. So does my neck. I am not sure why they are sore; perhaps it is something about the way I slept, except that they have been sore for several days. I would like to believe that this has nothing to do with ALS, yet somehow I cannot bring myself to that belief. I am suspicious of all things with respect to my body these days. I perceive everything through the lens of my illness.

In this case, the lens shows me a view of tiredness in the muscles in my shoulders and neck. I connect that tiredness with the same kind of tiredness I felt in my legs a couple of years back, and in my arms a couple of months back. It is the tiredness of overworked muscles trying too hard to do too much, even though what I do is the normal activity in life, the act of holding my head up straight.

To get a view of where this goes, take a look at Steven Hawking. There are a great many ALS patients who struggle to hold their head up, to look at the world on the level. It is a fairly common state of progression, to lose neck and shoulder muscles at some point. In some people it happens early, in some people it happens late. In some it never happens at all.

Then again, I may just be sore in my neck and shoulders. If I put on a rose coloured lens and look at this ache and stiffness, I can tell myself that it is just the pains of being my age, the ache of aging. I can look through this lens and believe that, with a few days rest, I will be better, that these aches will pass as so many other aches and pains pass.

In the end, it doesn't matter which lens I use. My body will do what it is going to do; my disease will do what it is going to do. I am simply a spectator, looking at this body and this disease from both the outside and the inside. I am not my disease; my body is just the place where it is happening. I am, in reality, the person holding the lens, the person deciding what colour to place in my view, what thought to hold on seeing through the lens. ALS is in control of my body; I am still in control of the lenses.

A New Increment

It is the creeping incrementalism of this disease that makes it so frustrating, so difficult, so defeating. It is the daily recognition of the small changes, the invisible changes that others do not see until the aggregate is sufficient to become clear or when the time between meetings is sufficient for the changes to be visible. This is the real challenge of ALS, that it moves at once too slowly and too quickly, where it's progression is sufficiently small in steps that it seems to take a long time, yet it's overall progression leaves such a short time to live.

Today I had trouble standing again. It wasn't a big thing; I got it on the third try. It's not the first time that getting vertical has taken three tries; this happens often. What I noticed today was the effort needed to get to that third try; it's becoming noticeably more difficult for me. Yet others will not see it; I stand so rarely that when they see it, it looks amazing, like a miracle. It is something I try to do at least once a day, sometimes two or even three times. It is something that is getting more and more tiring, more and more difficult, more and more unlikely.

After getting dressed, I went into my kitchen, looked at all the dishes stacked up and finally set myself to unloading and reloading the dishwasher. This is another task which has incrementally increased in difficulty for me. It takes longer than it did a few months ago; it is more tiring than it was a few months ago; it seems less important than it did a few months ago. I now leave it until there is plenty to load; the dishwasher is rapidly becoming one of my dish storage locations. When Rosa comes, she unloads it, loads it, and puts the dishes away, meaning that at least once a week I have a clean kitchen and an empty dishwasher.

Putting away laundry is another difficult and tiring task. I yet do my own laundry, something that I find rewarding. The process of taking a pile of fresh laundered clothing, warm from the dryer, and folding it neatly is comforting to me. Once folded, I place it neatly in my laundry basket and take the basket into my bedroom. Yet the process of moving it from the laundry basket to the drawers requires a whole new charge of my batteries; I often leave it for a day, sometimes two. There have been whole weeks where I have lived out of that laundry basket, never bothering to put things away. It just seems like a lot of effort when I have so little energy to use.

There are other things that are becoming incrementally more difficult, slowly more challenging, things like transferring from my wheelchair to the toilet or to another chair. I have pretty much completely given up on the Phoang chair, my favourite chair. The transfer is just too hard, too tiring. I no longer sit in other chairs except on those rare occasions when I feel up to it, excited about sitting in a real chair, not a wheelchair.

All in all, it is the creeping incrementalism that defines this illness, at least for me. I know others with ALS where there was no creeping; it was a gallop from diagnosis to death. Perhaps even here I should be grateful, happy that my version of this disease is slower than some. Perhaps I should take joy in what I can do, not dwelling on what I can't do. The problem is that it is something new every day; each morning brings a new increment.

I Must Write

It's easy to tell when I am really busy here at home; my blog entries get shorter. Today is one of those kinds of days, where things are going on left, right, and center. The plumber is back working this morning; he arrived at 8:30 AM. Mike will be here soon and we will resume work on boxing in the pipes once the plumber is done. I am expecting my safety bars for the shower and toilet to arrive today. And, to top it all off, I have several hours of work to do today, real work where someone is paying me.

Jim is coming late tonight; I am not sure if I will have the energy to stay up and greet him. Between all the various things I have on the go today, and given that I am up early to start with, I can see myself running out of energy fairly soon in the evening. I am starting my day tired, as I usually do, and I expect to be completely used up by the day's activities. I've already decided to skip "Name That Tune" tonight. I just won't have the energy for it.

This is not a bad thing, this activity level. Before ALS I would have looked at a day like this and simply charged into it. Here I am still charging forward; it's just at less energetic pace. I will do the things that need to be done today; they will just take longer and may require an extra day to get there. This is where the help of my family and friends really counts, in making it so that I can still do things without having them wear me out. For this support and kindness I can barely find the words to express my gratitude. Thank you just does not seem to be enough.

Yet before all of this begins, before the hurry of the day, before the work and activity, I am still taking time to express myself, to think and write. This blog has become a beautiful obsession for me, giving each morning a moderating focus, causing me to stop before I go, to rest before I run, to think before I act. It amazes me sometimes how putting a few simple words onto paper, or in this case electronic paper, seems to force me to move outside myself, to see the world around me, to enjoy the snow or the sun, the birds and the bustle outside, the things that are happening outside my body as well as inside it.

I started this blog as therapy. It has become something more. As with all great endeavours, this one began with one purpose and has come to fill many. Busy or not, I must write, each day.

Plumbing Explosion

The process of renovations is fraught with risk. Today we realized one of those risks. I am now soaking wet, the water is shut off in my bathroom and all work has come to a halt. The solder in one of the joints on the cold water line that serves the sink let go, spraying cold water all over the bathroom, me, Mike and pretty much everything else.

Needless to say I am very upset. This is the kind of thing which simply should not happen. It is a reflection of poor quality workmanship. Of course I called the plumber immediately and he is on his way over. I suspect he will not be happy either; the actual work was done by his apprentice but he is nonetheless responsible for this little crisis.

What bugs me even more is that Mike and I were just beginning to box in that exposed plumbing. We had just started work on the box and frame. We were measuring, just measuring, when we touched the pipe and it let go. This, once again, should not happen. It means, however, that the wood Mike and I were working with is now all soaked. Some of it, the MDF board, is wet enough that we may not be able to use it at all. The other wood will dry out, but that takes time and time is something I am running out of.

We will move past this. We will get the pipe fixed and get the lines re-checked. This time the plumber will do the work, not the apprentice. We will box it in and make sure that the lines are protected. This is one of the finishing parts that must be done. It's just a bit of a delay, perhaps a day or so.

Seasons Change

It snowed last night. This should come as no surprise; winter is not yet ended according to the calendar. Spring snow is the rule in Calgary, not the exception. This latest tumble from the heavens is not unusual, barely noteworthy, except that it is a different kind of snow, different from what has been happening since October.

The snow that fell last night is a heavy, wet snow, loading down the branches and weighing down the trees. It is the kind of snow one would expect to see along the coast of BC, where it falls deep and wet, soaking the ground and all those it touches. It is the snow of warm air, not the brittle, light, hard, dry snow that we get here for most of our winters. It is the snow that speaks of spring and run-off, something many Calgarians are watching nervously this year after the floods of last.

I awoke in the night and seeing the snow wondered what the temperature was outside. I checked and it was barely below freezing. Already today the sun has warmed the air to the point where the tree outside my window is dripping, that very heavy water that soaks into everything and chills to the bone. This snow will leave us quickly; tomorrow the birds will be the masters of my tree once again.

It is good to see the cold steel fingers of winter chill being pried open to let the warmth of spring enter in. In this case, the loss of icy grip is a good thing, a time when life returns to us, a time when the very ground upon which we trod speaks of hope and glory, when the flowers leap and the songbirds return. While I may be in the winter of my life, spring abounds around me, its clarion call telling all that life will continue, that there will be another planting, another growing, another harvest.

My winter will continue. The icy steel grip of my disease will squeeze ever tighter, crushing my body with its relentlessness. Yet even in this state I can find joy in the seasons, in the changes, in the continuing pageant that is life around me. Even with my own season ending, other seasons will go on. This is life; this is my life.

Putting On Pants

Well, it's finally happened. I could not stand up this morning to put on my pants. Now, I haven't stood up directly, free of support, for a long time, at least a year. My poor, dead legs can no longer function in that regard. These days, when I talk of standing up, I mean the vertical launch process I use where I force myself upward with my arms, using either a counter or dresser or some sort of support to push myself into something that looks like standing. My legs can bear the weight, they just can't make the journey.

This morning I went through my usual routine of having a shower and then coming into dress. The first step is underwear. I get them to the point where my legs meet the chair, then I force myself up to finish the process. It was tough this morning, tougher than it has been for a while. I made it, then slumped back down into my wheelchair, desperately needing to rest. The loss of strength in my arms, and my left arm in particular, is beginning to show.

I sat for several minutes, catching my breath and giving my tired muscles a chance to recover, not that they recover all that well. I took some time to put cream on my feet to help fight the foot rot that has been plaguing me over the last couple of months. I took a little more time to wrestle socks onto my feet. Then I put on my pants, at least as far as I could while seated, and once again attempted to launch myself vertical.

My first attempt failed, something that is not all that unusual. It takes just the right positioning, just the right placement of hands and feet and legs and chair to get all this to work. I tried again, with all things seemingly well placed, and failed again. Once again, I am used to having to make a couple of attempts, so onward to the third I went. Yet once again I failed, unable to get my knees sufficiently straightened so that they could lock. I could not shift my left hand from the M-rail on my bed over to the dresser in order to force myself far enough upward so that my right hand could join in the effort.

I slumped backwards, defeated by this process; there would be no fourth attempt. In order to get my pants on I transferred to my bed, something I can do because it does not require full straightening of my legs, and because I can do the rotation without actually standing fully upward. I wiggled my pants on while lying down. It takes a while; try it. It requires a fair bit of rocking, rolling, shifting and pulling. But I made it, eventually.

I am now dressed and ready to face the day. This failure is not yet permanent. I will try again. I will be vertical tomorrow. This is not the end of my putting pants on. It is, however, a harbinger, a warning that the end is in sight. Soon I will need help to get dressed.

A Tale Of Two Breakfasts

Yesterday I went to brunch with friends. We went to Denny's, a few minutes away from where I live. The restaurant was busy, as you might expect at a Denny's on Saturday morning. My friends arrived before I did and were told that a table would be available in about 15 or 20 minutes. They explained that one of their party, me, was in a wheelchair and the table would have to accommodate my chair.

I arrived shortly thereafter, parking around the corner as both of the handicapped parking spots were full. The restaurant was busy so I expected a wait. What I got was something more than a wait. The design of Denny's, and so many other restaurants these days, is built around the able bodied. This is to be expected; there's a lot of them. Most of us are able bodied, except for those of us who are not. These designs, with their focus on able bodied people, have booth tables in most places. This would not be a problem for many of us in wheelchairs; many of us can transfer from a chair to a booth seat. However this is a problem when those booth seats are raised up, lifted as high as six or eight inches, on platforms.

This was the case in Denny's. The vast majority of the seating was in raised booths, just high enough that a transfer was impractical for me. So we waited for one of their corner tables, where a wheelchair could roll up and I could be seated with the rest of my friends. We waited while able bodied people went ahead of us, sitting in those raised booths. There were others waiting for accessible tables, others in wheelchairs or in other ways impeded in mobility. They too were compelled to sit and wait, as able bodied people went on in and had their breakfast.

We finally got a table, and finally got to spend our meal together. I cannot complain about the initial wait; it was Saturday at Denny's. On the other hand the designers who come up with these raised booth ideas clearly are not considering the mobility challenged. As our population ages and more people face these challenges, these booths are going to be increasingly problematic, not just for those of us in wheelchairs, but for all of an aging population.

This morning I went to Moxie's, to have breakfast with other friends, in the mall across the street from where I live. Moxie's is not a popular breakfast place. It is more a lunch and dinner kind of restaurant. So the place was almost empty. There were plenty of low tables. However I saw those same raised booths and thought to myself about what would happen when things were busy there. I made a mental note to avoid Moxie's during the busy hours, as I would likely have to wait longer for a table, just like I did at Denny's.

I see this a lot, this unintended discrimination against people in wheelchairs. Restaurants with raised booths; pubs with high tables in their floor level sections and low tables in their raised areas, with no access for wheelchairs to those upper levels; stores with raised platforms for merchandising, placing merchandise out of reach for the handicapped; there are too many examples to list.

It's not just me. There was another man in a wheelchair at Denny's. My Mom has difficulty with stairs; getting into a raised booth is a challenge for her. I have a friend who uses a cane and has issues with steps; raised platforms can be a challenge. While I have plenty of able bodied friends, what is happening to me could happen to any one of them, or something else could steal their mobility. Life, and the world, becomes more challenging and difficult, given that it is pretty much completely designed around those who can lift their feet.

Running Around

It's been a busy morning already this morning, although it is now well after noon, so morning is past and I am now having a busy afternoon. I got up and almost immediately went out to have brunch with friends at a nearby Denny's. It's kind of frustrating to go to these breakfast places where they have all these booths. The design of the tables has them raised up off the floor, so a person in a wheelchair, like myself, can't actually sit at them without resting his or her chin on the edge of the table. This means we had to wait for a "wheelchair accessible" table, an extra half hour given the limited number they have at any given Denny's. I wonder if this is a human rights violation, discrimination against the disabled?

Nonetheless we had a great breakfast, once we finally had a table, with plenty of chatter and laughter. It was fun to be with friends, to share a meal, to gossip about one another, and others not with us. We are a chatty group, or at least some of us are. Others like to sit and listen, to observe, to simply hear and take in what is going on. It's a nice mix of people; the conversation never lags and nobody seems to dominate all that much, except perhaps me.

Just as breakfast was wrapping up, Jim texted me that he needed more drywall fill. He had run out and was stalled in his work. We seem to be using an awful lot of fill on these walls, but then again there were a lot of repairs and joins to fix and fill. I like to say that "gyproc and fill cover a multitude of sins"; when you build, it's the stuff you can't see that you worry about. On getting Jim's text I rushed over to the local building supply store, grabbed a big bucket of pre-mixed fill, and headed home.

On arrival Jim told me we needed a box fan. It seems my apartment is too warm and humid for the fill to dry overnight; it might take an extra day to dry. He wants to move it along by moving the air around, venting more of the space and decreasing the warmth. I get to wear a sweater this afternoon; the fill gets to dry. And I get to do more running around; it's time to go buy a fan.

Finishing Touches

It is another beautiful day outside. The weather is warming up enough that it is now too warm for my comforter and quilt; the season is here to remove the comforter and go with a light quilt for the spring and summer. Cold weather in the fall will force the change, seven months away from now. Today, it is lovely and light although I am sure winter will grip us at least once or twice as we move through spring. It is the way of the land, to surprise continually.

It was another late morning this morning too. I was up very late last night, with Jim arriving well past 1:00 AM. We talked for at least an hour, going over the work to be done and the things I had done while he was home. After that I managed to finally get to bed. If you take the 2:00 AM bedtime and the fact that I need at least 10 hours of sleep these days, getting up at 11:45 is about right. I am reasonably rested and ready to interfere with his work day.

My friend Dion is coming over the help today. We are doing the filling and taping of the gyproc, taking the rough cut sheets and using plaster and a fabric tape to make that smooth finished wall that speaks of a well made home. It takes at least two, and usually three coats of fill to build a smooth join in the wall board. In between each coat you have to sand the plaster smooth in order to build a base for the smooth final finish. It takes a day for each coat to dry. This means the whole job will take today, tomorrow and Sunday. It will be another three days of activity, including dust from the sanding.

The end of the job is in sight. After we tape and fill, we paint and finish. The part that I will fuss over the most is probably the basedboards and other finishing touches. I suspect some of those will remain undone in spite of Jim's best efforts. It always seems there are small bits at the end that have to be done, and redone. These finishing touches always take far longer than anticipated. That's just the way it is.

Not My Last Spring

It is a beautiful spring day here in Calgary. The clear blue sky, azure and rich above me, stretches to a distant white edged horizon, clouds of cotton candy wisp and white slowly slide their was westward towards the mountains. The air is warm, or at least as warm as can be for mid-March in southern Alberta. The small birds are skipping in and out of my tree, chittering and chirping, singing to one another of the glories of spring's return.

These small birds flit in and out of my tree as if by common agreement, arriving in groups and leaving in groups. Their colours are bright, some with orange-red bellies and others with deep black crowns. They are smaller than my closed fist and freer than I shall ever be. Their life is short yet they seem to know little of worry or care. They eat, they sleep, they have babies. Their vibrancy and energy is a panoply, a living painting for me to see each morning.

I can hear the birds, and the traffic below, because only one of the two sliding doors on my patio is closed. These double doors are necessary to shield the indoors of my apartment from the bitterly cold winters than cover this country for four to five months a year. Springtime as I see it today is an impermenant state, likely to driven off by at least one or two more cold snaps along with a couple of sessions of "spring snow". It's not only Calgary that sees this intemperate spring weather; it happens all across Canada except perhaps in Vancouver where winters generally involve rain instead of snow.

Spring heralds the end of winter, the long season, and announces that summer is only a few months away. It is the beginning of summer adventures, road trips, exploration of the mountains, fishing. I can still do some of these things. I can still skitter about here or there, exploring the world around me, seeking treasure for my soul and spirit. I, like the birds, can still sing. I, like the birds, can still chitter and chatter. I, like the birds, can still venture beyond my tree. This may not be my last spring but I plan on enjoying it as if it were.

My Left Arm Looks Different

It's probably been about three months since my left arm started to decline down the path to paralysis. I say "probably" because the beginnings of this process are infinitesimally small, almost unnoticeable except by those in the throws of the disease. The first signs for me were increased clumsiness; not a lot, just enough to recognize that it wasn't "normal" clumsiness.

My left arm is still working but I can feel the increasing weakness in it. It will keep working, harder and harder, as the weakness in the bicep continues to become more pronounced. Already I am compensating for it, favouring my right hand, using my right arm to complement my left when pulling myself across the bed, pushing harder with my right as I lift myself out of my wheelchair. It is the extra work on my left bicep and wrist that make it hurt. If I did nothing there would likely be no pain; the problem is that doing nothing is not something I can do.

I have noticed a weakened shaking of that arm as I use it to hold or push, that mild shaking I used to get when my legs were tired and I had to sit down, back when I could still stand and walk. It's barely visible and stops immediately once I rest my left arm. We are early in the game. I know how this will go; it will follow the pattern of my legs, declining more rapidly on the left at first, then showing up on the right. In the end, perhaps a year or so from now, I will lose most of my arm strength.

This morning I noticed the first real, visible change in my left bicep. I was pulling myself across my bed, using both my left and right arms. I saw that the shape of my left bicep was different that the shape of my right bicep. When you flex your muscles in your arm, that muscleman kind of thing, your biceps are supposed to make this nice, fairly symmetrical lump. My right arm looked just like that.

My left arm, on the other hand, if you will forgive the pun, was misshapen. There was no smooth, round lump. The bicep was flattened, almost as if the muscle was sliding into the crook of my elbow. There was no rise to the center, no roundness, or at least not much. It is a clear sign that I am past the beginning of this part of ALS.

All Things Considered

A friend took me out to dinner last night, out to The Keg, a part of a national steakhouse chain here in Canada. I love the way they do their Prime Rib, and we had a terrific Argentinian Malbec to go with it. The conversation was fun and interesting. It was her treat and we had a wonderful dinner. I enjoyed myself.

As I got home I started thinking a lot about enjoying myself, how much I could still do even with this disease advancing on me daily. I thought about how much I enjoyed eating, and talking, and getting out into a social setting. My thoughts turned to others with ALS who can no longer eat, who talk through the use of a computerized speaking system, who breath through the used of a machine. I thought about how fortunate I was that I have time yet to do these things, time given to me as a gift, time that I am free to use, free to enjoy.

There are limitations on my life, far more than just the physical, although those in and of themselves are daunting these days. I tire so easily, so quickly. The simple act of rolling my wheelchair from my bedroom to the kitchen, over the soon to be removed carpet, has become tiring of late. Getting up, getting to the bathroom, getting dressed; all these mean I get tired too. On top of that I am beginning to feel, acutely, the financial limitations brought on by the costs of this disease. Then there are the lifestyle limitations, activities taken from me or bounded by wheelchair access.

Yet even with these limitations I have a full and active life. I know plenty of people who would happily trade me places, people who wish they were as full of life and joy as I. I know people who no longer get out, whose limitations have become absolute, their life bounded by the four walls of their existence. I know people who suffer from depression, living their lives on the edge of blackness. Yet here I am, facing one of the harshest diseases known to mankind, and I find love, laughter and life in each day.

I may no longer be able to go out for fancy dinners on my budget, yet I have them here at home with people who appreciate me, and my cooking. I may not be able to fund great weekends in fancy hotels, but I can still have a terrific time in something smaller, more intimate. I may no longer be able to dance, but I can still enjoy the social vibrancy and life with friends. I'd say I am doing pretty well, all things considered.

Crossing The Rubicon

I was told last night that a friend from my past, a fellow who attends the church I once attended, is in hospital in the end stages of cancer. His wife tells me he will not be coming home from the hospital. She is heartbroken. He is a good man, a hard working father who loves his children and grandchildren. It seems that death is not restricted to those of us with ALS; once again I am reminded that all of us leave one day, some early, some late, some hard, some easy.

There is a bridge you cross in life, a bridge to a place where death becomes the norm, no longer unusual. In our early years, for most of us death is a stranger, rarely touching us. Death happens to those who are older than we, those for whom the years seem long, except in the most tragic of circumstances. Even when it is our parents we can look at it as a normal part of life, or at least as normal as possible. Certainly we, as youngsters, see death as something that happens in someone else's life, not ours.

As we approach middle age, as the years progress, we see that ladder shorten, we move up a rung and death becomes more common to us. Our grandparents, our parents, our aunts and uncles; they all take their turn at the dance with death. We see death no longer as something that happens far away. Now it is only slightly above us, just beyond our horizon. Tragedy is rare but death is something we begin to see on a more personal basis.

Then, at some point, we cross that bridge, climb that last rung on the ladder, and death becomes something that happens around us, to our peers, to those who we have seen beside us in our communities and in our lives, connected through a horizontal web instead of a vertical web. This last transition, this final segment of our life journey, is supposed to happen in the later years of our life. For me, it seems to be happening earlier.

Death is all around me. As a part of an online ALS community I see it daily, although I am removed from it by distance I am yet connected to it by technology. In times gone by I would be alone in this, so perhaps our modern communication age is to blame for this more visible transition. Yet even without the Internet, I know of people in my own community, in my own medical cohort, in my own age group. I am here early, I have crossed the Rubicon. Life, and death, is a part of each of my days.

A Tragedy Or A Statistic

My brother Jim got some sad and shocking news last night. A friend of his was killed up in Edmonton yesterday. The police are listing the death as "suspicious" and homicide detectives have been called in. When I got home from being out last night, Jim told me, and said he was heading home today to be with his community in their time of grieving.

He tells me that he has lost a friend to violence about once every ten years, and that this kind of death is more common on the gay community than for the rest of us. Jim believes it is because the community is more open and more willing to accept people. He also suspects drugs or alcohol may be involved. Regardless of all this, he has lost another friend. There is another hole in the fabric of his life.

Joseph Stalin once said "The death of one man is a tragedy, the death of millions is a statistic." Of course, he would know, being an expert on the subject. His totalitarian regime was responsible for the deaths of an estimated 43 million of his own people over the years when he was in power. However there is ample research that suggests his observation to be more than just a little true. That research suggests that the death of one person affects us more than the death of a hundred. After a certain point, we become numb to the humanity of death, that is until it touches us personally.

Jim and his friend are a great example of this. I am touched by the death of someone I don't know, touched because he was someone Jim cared about. Even though I am removed by one degree of separation, I was saddened by the news, sharing Jim's sadness. Over the years Jim has lost many friends to the AIDS epidemic of years gone by and to the tragedies of life. I didn't know many of them; to me this death is real and tangible. It is a tragedy for me, and a statistic for others.

I know my death, when it inevitably comes, will be a tragedy for my family, for my friends. That tragedy will lessen as the circle grows and the ripples spread, becoming smaller with each ring outward. Eventually I too will simply be a statistic, another person who died from ALS, part of a small group yet still part of someone's research.

We all die. Perhaps there is no tragedy in death itself, but in the untimely death. This is the sadness that Jim and his friends now face, the early loss of someone they loved. The tragedy is not that life is lost; this is simply the statistic. The tragedy is that death, especially untimely death, leaves us with a hole in the fabric of our lives, and we have nothing in the passing to fill that hole.

For These Things, I Give Thanks

It has been about three weeks now that I have been without a toilet; that situation was remedied late last night. I am in the midst of a very expensive apartment renovation to make it more accessible, more wheelchair friendly. I am doing this so that the last year or two of my life will be easier, so that I can continue to live here, to live independently.

The progress for the renovations has been slow. My brother Jim has been driving from Edmonton every week, a three hour drive there and three hours back, to help with the work involved in moving walls, removing old fixtures, putting up new walls, installing wider doors and a great many other tasks that are a part of this work. We have plumbers coming and going, tilers working away, electricians coming in and out, and flooring specialists soon to be on the list.

Fortunately the work is on the downslope, the majority of the major construction complete. We are now moving to the finishing stage. This means putting up sheetrock, filling and sanding, and then painting. After that we put on the final plumbing and electrical fixtures, then we do the finishing touches including putting up closet doors and shelves. It is a lot of work, and it would have been incredibly difficult without the help of my brother and the friends who have shown up to help, to volunteer their time to make this all work.

The frustrating part of all of this is that even after the expenses of this renovation there will still be things undone, things that could be done. For example, we simply don't have enough time for Jim to do my hallway closet, so my freezer remains in my dining room and coats get hung in the spare bedroom. The original plan called for this, but Jim has a life to live and he has already given me nearly three months of it. Hiring a contractor to do this small part of the work will likely cost as much as $3,500, so it remains undone.

My kitchen is still a "standard" kitchen; I wanted to make some changes to it but I simply cannot afford it. I wanted to have lowered counters and a lowered sink, allowing me to work in the kitchen. I wanted a stove with front controls, making it safer and easier to cook, but that is another $2,000 I simply don't have. The whole kitchen renovation would cost somewhere in the realm of another $15,000, a sum that is too out of reach for me.

Yet with all this, I am extremely fortunate and grateful. I am grateful for what I have, fortunate to have an accessible bathroom with a wheel-in shower and handicapped toilet. I am fortunate to have wheelchair width doors. I am fortunate to have a wider hallway with easy access to my bedroom. I am fortunate to have, soon enough, laminate floors that make it easier for me to wheel myself about. I am fortunate to have people who will help me with this transition, who will help with the work and give freely of their time.

For these things, I give thanks.

No Other Life But This

I was up late last night, not going to bed until nearly midnight. I was out playing "Name That Tune" at a local pub; the game ends at about 11:00 PM and I usually sit for a bit with friends and chat afterwards. Then, when I got home, I sat up and chatted with Jim for a few minutes, planning the work of today and talking about his hobby, working with electronic circuits. Jim has loved electricity and electronics since he was a small child. I can remember pictures he would draw where all the people were in proportion but the electrical plugs and outlets, drawn in great detail, would be massively sized and out of proportion to anything else on the page.

The price of staying up late is exhaustion in the morning. This would not normally be a problem; I would simply sleep until late in the morning, the same way Jimmy does. Unfortunately the tile crew is coming yet again this morning, hopefully for the last time, to finish up the tile in my bathroom. The downside of this early arrival is that I must get up earlier; the upside is that, once the day is done, I should finally have a toilet and tomorrow I will actually have a shower, assuming the plumber arrives later today as planned, something of which there is no guarantee and history makes doubtful.

A couple of days ago I received one of the nicest compliments I have had in a long time. Someone said that I had an excellent balance between realism and optimism. I've thought about what this means for a couple of days now, and I would have to agree. I am very realistic about ALS, what it is and will do to me, and what my choices are in the face of this disease. I am very optimistic in the way I live, squeezing every bit possible out of every day, even when I am in the midst of struggles with this monster.

There has to be a balance. It is what keeps me going in the face of the certainty of the outcome. It is what makes me comfortable with what will happen along the way. I get up each day, exhausted or not, and live it. Some days are better than others. Some days I start tired and every day is a race to sleep. Yet in the end, I get to live another day. I am going to live until I die; I might as well live before I die. I control neither disease nor duration; my life is what I can do today, how I can live now. What will come will come, regardless.

As Henry David Thoreau said "You must live in the present, launch yourself on every wave, find your eternity in each moment. Fools stand on their islands of opportunity and look toward another land. There is no other land; there is no other life but this."

Sink Costs

The tile guy is here, tapping and tapping on the floor, breaking away chunks of misplaced cement. It's a noise which is sure to awaken Jim, who came in last night to get started on his stuff. I know he will be angry when he wakes up early; he is not a morning person and will not get out of bed before 10:00 AM or so. I warned him last night about this; perhaps I should have put him up at a hotel for the night.

As the renovations continue I get more and more tired of the dust and noise and disruption. There are still tiles in my living room; the tilers were supposed to have all the tile done yesterday but they ran late and did not finish. My hope is that they finish today and can have the grout done fairly early tomorrow. This delay means another day without a toilet. My hope is that this will all be done for the weekend and I can finally relax in the mornings.

The costs of these renovations continue to frighten me. I went out yesterday to buy a sink. You can purchase a standard sink, one that goes into a counter-top, for as little as $50 at places like Home Depot and Rona. However a wall hung sink that is sized right for wheelchair access costs substantially more. The most basic, industrial wall hung sink, the kind you see in prison washrooms or other institutions, costs around $150. If you want something with a bit of style or flair, you can expect to spend between $200 and $500.

I found a local plumbing supply house that had a couple of leftover sinks in their warehouse from industrial jobs where they had an oversupply. One was the basic prison sink; it was $129. The other was a larger, more defined sink, still square and squat but at least not as ugly as the prison sink. I asked about the price and was told it listed for $500. I said no thanks and headed for the door. The sales clerk asked me to wait a minute and he went to talk to the boss. He came back, we negotiated and we ended up at $150 plus GST.

The sink is not the only part. Then there are the taps, ones that are good enough quality to take a bit of a beating from me pulling on them as I reach over the sink. These cost $229. After that there are safety bars, towel bars, corner shelves for the shower and all the other little things that you want and need in a bathroom. All in all the bill came to about $900.

Renovations are expensive. What gets me most of all about these renovations is that I don't want to do them; I am compelled to do them if I want to continue to live independently. What's worse is that, at best, I will only enjoy these renovations for perhaps a year or two. Then I will most likely have to move into a care facility. That future bothers me more than the money, and spending all this money on a bathroom I don't want bothers me a lot.

Random Thoughts

Random thoughts; I have them, so do you. Some mornings they are all I have. This morning is a good example of that. I am tired this morning, perhaps paying the price of the last couple of busy days. Yet I had energy on Monday, and yesterday too. I wonder if this will become cyclical; maybe it already has. Maybe I should start planning for this, a couple of good days and then a day when I need to sleep in extra.

The tiler arrives. Today he will lay down tiles in my bathroom. Tomorrow is grout and sealer, and then I will have a toilet once again. I've already contacted the plumber to put in the shower fixtures; he says he will be here but I know he is unreliable that way. Then I think about the word "tiler" and wonder if that's where the name "Tyler" comes from. After all, a great many names are based on medieval occupations, things like Taylor, Fuller, Smith, Butler, Carpenter. The list goes on and on. His last name is Barrett, but that doesn't matter, really.

He comes in and I notice he doesn't have a work bench for his tile saw. He's deaf, completely deaf, so I write down that he can use the saw horses and door that Jim uses as a work bench. I say he can set it up in the hallway but that he will have to move it when I want to go out at 11:00 AM. He decides to set it up out on the balcony instead. There is room and he writes that it will keep the dust down. I point out that it is -18 Celcius on the balcony but he does it anyway.

Then I notice the workers on the roof of the mall across the street and wonder how they are doing in the cold. I can see the steam rising from the heating vents. The sky is clear and the cold reaches all the way from heaven to earth. It is the depths of winter still, and I start wondering when spring will come. I wonder about going out today, how I will do with the cold. The transfer from my truck to my wheelchair takes time; in the cold weather is seems to take even longer.

I remember that I need to go sink shopping today, along with going out to find myself a bathroom. My toilet goes back in tomorrow. I try to think if I need anything else, if there is any other reason for me to leave the warmth of my apartment and head out into the chill of winter. Then I remember I haven't written a blog entry for today.

Random thoughts; I have them, so do you. This was the start of my day.

You Can't See It Yet

ALS is not a painless disease yet the disease itself causes no pain. Here I sit this morning, looking out of my window, sitting in my wheelchair, watching the cold prairie with pick up flakes of snow and blow them by. As I sit, my lower back is aching, my left wrist is aching, my biceps left and right are sore. I cannot understand how I can hurt my back while sitting in a wheelchair, but I have. I understand completely why my arms ache, why my wrist is sore.

With the loss of my legs, my arms took over. They have been tired for many months. Now they are a different kind of tired. They hurt because they are getting weaker and doing the same activities of daily living demands more of them. While one part of my arm weakens, another takes over to pick up the slack. While my bicep and lower arm muscles are less capable, my shoulder and wrist work harder to do the lifting, pushing, pulling, grabbing.

This overworking of one set of muscles to compensate for the loss of others leads to pain. It's not ALS pain, it's pain from working to overcome the effects of ALS. The disease is not hurting me; I am hurting me as I work to do the things I want to do with muscles that continue to decline daily in their ability and strength. If I were healthy, I would say I was working my muscles too hard, that I was out of shape, that my arms needed exercise. These were the same thoughts I had when I started to lose my legs. Now I know what is really happening.

My arms hurt because I have ALS, but not from the ALS. They hurt because they are weaker and my demands on them do not change. I still want to get around. I must say, with a sense of the ironic humour within me, that I have noticed one thing in particular. When I am in my wheelchair, rolling my way through the mall, I now tend to slowly drift left, as my right arm overpowers my left. This means I have to correct for the drift, just like when I was sailing.

It is these small things that I see, things that others do not see. It is these small things that tell me what is happening. They are invisible to most people, too small for others to notice. You cannot see me making the choice to pick something up more carefully. You wouldn't see the extra push on my right hand or the slower lift on my left arm as I force myself out of my wheelchair for transfers or to stand. You can't see the small ache, the low pain, the willingness to stop where in the past I would continue. But it is there.

Transitions

My left arm continues to hurt, the muscles slowly losing strength, aching from the overuse of what I have so I can continue what I do for as long as I can. This morning my hand slipped off the M-rail on my bed as I reached to get clean underwear from my dresser. Of course everyone slips now and again, so I cannot say for sure whether it was just another slip, or another in the continuing series of slips and drops that I have had lately with my left hand.

Still, I got dressed. I retrieved my clothing, rocked and rolled on the various pieces, and finally forced myself vertical so I could pull up my pants. This morning activity is one of the few times I am vertical these days. Sometimes I force myself up in the kitchen to get things from the high cupboards. In both of these cases I am noticing it takes a bit more to get there, the effort of lifting is getting to be more difficult, especially with my left arm.

Yet with all of this I caught myself thinking this morning that I was still functional. I can still dress myself even though it takes extra effort. I am still going to take the day and clean up my apartment after the work of the weekend. I will unload the dishwasher and load it with more dirty dishes. I will put away the clean dishes and wipe down my counters. I will probably even take a stab at vacuuming the hallway area where we left a mess yesterday from construction work.

I say "we" when in fact it was my friends Anne, Dan and Brian who did all the work. They came at noon and worked until 9:30 PM, putting in bracing and cement board so the tile crew could work on my shower today. As a counterpoint to my own reminder that I am still functional, this amazing help reminds me that my functionality is limited and I am dependent on the kindness of others. I am in the midst of this slow transition, still living, still dying.

As my progression continues and my position worsens, I will need more help. That help will move from asking friends to having home care workers come in. This starts today, with a visit from the home care Physiotherapist. It is another step down the path, another move in the transition from freedom to dependence. It is the nature of ALS.

Community

I am going work coordination today. Yesterday the tiler gave us a surprise, asking who would do the backing board for the shower. I had thought they were doing it; they thought I was doing it. The quote made no mention of it, so it is mine to deal with. Fortunately I have help. When I discovered this problem, I posted a request to friends on Facebook and sure enough my friends here in Calgary have stepped in to help.

It continues to amaze me and gives me great joy to see the way my community here springs into action to help one another, not just me. There is a willingness amongst us all to do the things that make life better, friendlier, and easier for each other. If someone needs to move, we are there to help. If someone needs to paint, people offer themselves up as workers, and in my case I asked for help with backing the shower and sure enough the gang has stepped up.

What is really interesting as that a couple of the guys have never done anything like this, yet one of my women friends who is helping today has done lots of renovating in her own home. So she is teaching them about it while I am sort of just managing the whole effort, or micro-managing it as the case may be. Still, it is great to have some experience in the group, and even better that we get to share our experience in the process of helping one another.

I am constantly reminded of the power of a social community, a group of people who come together with nothing more in common that a willingness to like each other. I've seen it more here in Calgary than anywhere else I have been. Perhaps this so because almost everyone here is from somewhere else; virtually all of us in the city are immigrants, either from other parts of Canada or around the world. Our lives are bounded by winter weather, so we spend more time indoors, and more time with each other. Our diversity builds our social fabric, making a place where people are accepted for who they are, not where they are from or their ethnicity.

Of course not all of this happens to all people. I've been lucky, something I am deeply grateful for and appreciative of.

Renovation Hell

Here I sit, awaiting the tile crew so that, once they get here, I can dash down to my truck, drive across the street, park in the mall underground parking and go up to use their washroom. Once again the toilet has been taken out of my bathroom. It lasted all of one day; as soon as the plumber put it back on, the tile crew took it off so they could do the tile. They tell me it will go back in next Wednesday or Thursday. Thus is the life of renovations.

On the plus side, it is only -30° Celcius here in Calgary today; in Winnipeg and Saskatoon the thermometer is hovering aroung -40°. Any adventure outside in this kind of weather is best described as dubious, and is at worst downright dangerous. That's why I drive across the street, rather than take my power wheelchair in these kinds of temperatures. Any exposure could be bad, even the few minutes that it takes to get across the street, given that the blood flow in my legs is so poor and my response to the cold has become so much stronger.

I've been out in cold weather in the past, even recently. I can do it with the proper clothing. Right now, however, all that proper clothing is stuffed away in cupboards and my storage locker while the renovations go on in my bathroom and bedroom. My winter coat is hanging in a closet in the spare room, jammed in with all my other clothes and such. My long johns are in the drawer of my night stand, the one currently blockaded by the glass bi-fold doors that were once enclosing my bedroom closet, the very doors that I am saving for eventual use on what I hope will one day be my hallway closet.

Everything is someplace else, protected from access by something that is there temporarily. My living room has become a storage location for tiles and tiling compound, a resting place for miscellany from construction. My dining room is partially occupied by a bale of fireproof insulation. My entry hall is stacked with lumber and partially filled with the toilet that was, up until yesterday, in my bathroom.

Wait! Isn't that where I started this tirade?