Sunday, 30 November 2014

I Don't Want To Die, But...

I wouldn't mind being dead right now. I don't mean that I want to die; as far as I am concerned, nobody in their right mind actually wants to die. Nor do I mean that I am thinking about suicide in the immediate future. It's just that, on balance, being dead does not seem like such a bad thing these days.

Soon after all of this started, I talked to my counselor at the ALS clinic about death and dying. The best advice I got was to look at reasons for living and quality of life. The fact of the matter is that my quality of life has been on the decline right from the start. While it outwardly appears to have changed little, there are so many small things missing in my day to day existence that the balance has tipped well downward.

My arms hurt all the time. I can't get into bed anymore without real effort. Cooking is becoming difficult, as are almost all household activities, what they call the "activities of daily living", or ADL. Driving is becoming more difficult. I don't really make wine anymore as much as others come and make it for me. Even the simple act of holding up a coffee or a drink tires me out sometimes. I am constantly worn out, constantly feeling exhausted, even when I feel good.

Then there are the reasons for living. These are both many and few. My reasons for living these days almost completely revolve around my family and friends. I am looking forward to a wonderful Christmas, one where four generations of family will be with me; my parents, my brother Jim, my children, and their children. I look forward to an exciting few days surrounded by laughter and chatter, and the occasional meltdown of an overstimulated three or four year old, or perhaps even me.

After that, I do have a new grandchild I can wait for. If it's a boy, maybe they will name it after me. If it's a girl, well, their first was named after my ex, so it's an open field. However that day is seven months away. With ALS, that's a lifetime of waiting. I am looking forward to another road trip in the next couple of months. That count's, right?

In reality, I don't want to die. I know it will happen soon enough. I am don't wish for it to happen; I am not afraid of it happening. Dying is easy; living with ALS is hard.

Saturday, 29 November 2014

Cold Weather Effects

I finally managed to get myself up and out of bed today. It was a long, tiring day yesterday, with the funeral, home care, and my own errands. I could easily have stayed in bed all day today, and that's after going to bed at 8:30 PM last night. I guess I needed the rest. I could probably go back to bed and sleep again, right now.

A day at home today seems destined. The weather outside is frightful, to steal a line from a song. The sun is glaring off the brilliant snow piled high on the branches of my tree. The parking lot and streets below are covered in a rubbled, frozen white sheet. Traffic crawls carefully, people tread lightly; it's an icy wonderland out there, where the temperatures hover around -20 Celsius.

To top it all off, the lift system in my truck seems to dislike this cold. It was even colder than this yesterday, in the midst of what can only be described as something resembling a blizzard only colder, when I set off to the store to get some needed supplies. I don't mind this weather, mostly. With my truck and my mittens, I can face it almost any time. Except yesterday, in the middle of the Costco parking lot, the seat lift on my truck refused to rise.

It may have been the clutch, or frozen lubrication; perhaps it needs a winter service. Regardless, I could not get into my truck. Fortunately Dion was with me, and between the two of us we got enough out of it to get me on board and home. Then, in the safety of my heated garage, we took a look at it, or rather Dion took a look at it. After a bit of peeking and poking, it suddenly started working again. All we could do is put it down to the cold weather.

On Monday I will take it into the shop. I suspect they will know what to do and that the service required will be quick. As my friend Mike said, "It probably requires regular service. You might find that in the owner's manual." I'll bet you can imagine my thoughts as I heard those words. The truth is, I never worried about service. Nobody, not even me, thought I would be using it this long; this is my third winter with the lift and hand controls. Who knew?

Friday, 28 November 2014

Al Hattingh Died Last Friday

There is nothing like a funeral to bring home the reality of ALS, of how this disease takes remorselessly. In a few hours I will go to Al Hattingh's funeral. He, like me, had ALS. He, as I will, died from complications associated with ALS; he died from ALS. He, like me, leaves behind four children who will miss him. He leaves behind grandchildren who will never really get to know him. He leaves behind a wife who will miss him dearly.

Al was diagnosed in December of 2013 and died on November 21, 2014. It was a quick progression although not outside the "bell curve". In the space of a few months he went from a healthy, robust, athletic man to a weakened shell of his former self, barely able to stand and ultimately unable to breath. He disappeared before our eyes, as we watched him in the ALS support group meetings. While his progression was quick, the path was familiar and the ending was what all of us with ALS must face sooner than we would like.

Looking at Al, I see a mirror for myself. I see my progression, albeit slower, relentless and cruel. I see the frustration and anger at the loss, his distress for his wife and children. I see the sadness within him, that he knew what this disease would do to him, that he could do nothing about it. I saw the difficulties for his daughter as she sought bravely to find something that would slow down this terrible affliction, something that would keep her Daddy with her longer, something that would allow him to be there when it was her turn to walk down the aisle. I see the grandchildren that will not remember him, the sons and daughters that will not be able to ask for his wisdom or counsel. I see myself reflected back.

I am going to fight to get up early, far earlier than normal. I did it on Monday, surely I can do it in a few hours. This will be a hard thing yet it is a thing I feel I must do. I am not going for Al. I am going for Janna, his daughter. She is one of the many young people I know. Over the last year we have talked a lot about her Dad. She has cried in my arms, ached for what she could not do. Now she must face the ultimate reality of the outcome of ALS. This will happen with my children too. They will have to face this day, coming sooner than they want, the disease progressing faster than we all hope.

It is not that death will take me, nor that it took Al. It is that death will come too soon, take us too early. It is that ALS will destroy our bodies along the way, leaving us with nothing at the end but an empty shell. It took Al. It will take me. It will take others. There is no treatment, no cure, no hope. That is the real tragedy, for both Al and ultimately for me too.

Thursday, 27 November 2014

Before I Die

I don't have a bucket list. Let's face it, I have already had the kind of life that most people can only imagine. I have terrific children, wonderful grandchildren. I am surrounded by people who love me, people who care for me. I've trod on the shores of the Beaufort Sea, stood in the sands of the Arabian Desert, felt the rush of water where the Indian Ocean and the Atlantic Ocean meet, swum in the Caribbean, walked the beaches of Lido in the Adriatic and Brighton on the English Channel.

Travel is only a part of the wonder of my life. I have loved a beautiful woman, laughed with brothers and cried with sisters, heard the stories of my elders and shared them with my youngers. I've seen the births of the next generation and shared the passing of the last. I have hunted the giants of the forest and had them hunt me back, fished the wildest of rivers and the deepest of oceans. I've climbed mountains with nothing but a rifle on my back, and sailed the open Pacific in my own small boat. I have lived a life, the kind of life you could write a book about.

It is impossible for me to have a bucket list; I've done so much of it already, so much that so many can only dream of doing. Yet there are still things I wish to do, still things that entreat me into wishing. There are dreams that I have, dreams that I see so unlikely as fulfilling.  I cannot call these bucket list items; I would not be so proud. I would simply say "Wouldn't it be neat?"

Before I die, an event which will take place all too soon, I would like to sail across the Equator in a small boat. By sail, I mean truly sail, under the canvas, or more likely under the modern polyester of new sails. By small boat, I mean something not quite so large as the cruise ships that ply this route with giant engines and staff waiting hand and foot. I really want to do this as a sailor; there is no other way which really counts.

Before I die, I would like to fly up to and around the peaks of the Himalayas, and along the way to see the sights, sounds and smells of the Indian subcontinent. I don't mean a flight in a jet at 35,000 feet with these massive giants of tectonic force simply settling beneath me. This flight would be in a helicopter, close in, where the risk of a crash is, if not equal, at least threatening to cast and crew alike, where the buffeting winds of updrafting air shudder the encasement of thin metal around me.

Before I die, just once in my life I would like to feel the rush of endorphin that can only come with falling in love, the complete abandonment of logic and reason that can only happen when I meet someone who triggers every sense within me. I want to feel the meaningful lust and craving that comes along so rarely. I want to fall in love again, just once before I die.

It's not a bucket list. My life has been too wonderful to deserve a bucket list. I have done too much to need a bucket list. Still, there are a few things...

Wednesday, 26 November 2014


There are so many "why's" with this disease, so many unanswered questions. It is perhaps the most frustrating part of ALS, that even with a hundred years of study and millions of dollars in research, there still remain so many blank spots in our knowledge.

"Why me?' This is not the plaintive howl of anguish, the wondering about what I did to get ALS as opposed to someone else. This question is the much more academic wondering about what it has been in my life, what it is about my genetic structure, what it is about my lifestyle, and why all of these things, or none of these things, met within me to bring on ALS. There are suggestions that multiple factors cause ALS, some of them perhaps reaching back years, and that it may take years for the disease to express itself even though it lies either latent or slowly growing within. What is it about me that brought these factors together? Nobody knows.

"Why now?" ALS has long been known to attack people in their 50's and 60's; it has not traditionally been thought to be a young person's disease except perhaps in familial ALS. Yet I see a great many people with this disease, particularly online, who are much younger than I am. Nobody seems to be able to tell us why this disease is moving from older to younger, or why it attacked me at 57 instead of 47 or even 67. Just as we don't know what the triggers are, neither do we know what it takes to conflate those triggers, young or old. Nobody knows.

"Why this slow? Why this fast?" I know of people with ALS who have lived for many years, famous folk like Steven Hawking and the not so famous, like a fellow in my support group who has been living with ALS for almost 15 years, his only real impact being his loss of ability to speak. It is moving, but slowly. Then there is the fellow I know who was diagnosed last December and died just the other day. Why was his so fast? Why is someone else so slow? Why I am "average"? Nobody knows.

"Why does it start in one place for some people and in other places for others?" Mine started in my legs, or rather in my feet. For others it starts in their hands. For others it starts in their neck and throat. For some, the truly cursed, it starts everywhere at once, showing no preference for how it kills. Why it starts in some places for some, and in other places for others, is simply a mystery. Nobody knows.

That's the real story of ALS, that there is so much unknown, so much that we need to learn. There is so much work to be done to answer so many more questions. We need to know. Why?

Tuesday, 25 November 2014

My Arms Are Getting Tired

The weakness in my arms is progressing; not as fast as it could, but steadily. I see this in different things, in the ways I handle some tasks, in my abilities. These days, for example, the transfer from my wheelchair to my bed is failing more often than not. With better strength, I would push myself up and rotate sideways to sit on the bed. These days the best I can do is sort of balance and bounce off the wheel of my wheelchair, shifting sideways onto the bed. Soon my only method will be using the infernal sling that is there for when I am truly weak.

Other things tell me my arms are growing weaker. When I drive my truck, it takes a bit more effort to stay stopped at a stop light. The instantaneous strength is there for stopping, along with using the accelerator. It's the long term hold that gets to me, or the micro-adjustment in throttle that is tough. I use the cruise control as much as I can, something that is near impossible through the mountains of BC. I notice the subtle difference; others do, others do not.

Then there is the simply act of holding my arms in the air, or holding something up for a bit. I can still pick up a cup of coffee, and, thank God, a beer. The issue comes when I have to hold it up for some time. My hands shake almost the instant I hold something up. The shaking worsens if I am tired or it I have to hold something up for more than a moment. I can do it, but the duration is getting shorter.

I also notice a greater willingness to rest my arms whenever I can. Whether I am sitting or in bed, these days my arms are supported most times. It's not that they are terribly weak; they just tire quickly. They need to rest. When I am reading in bed, I am more likely to have whatever device it is, book or tablet or phone, resting on my chest within my hands, rather than held up. Rolling over or sitting up in bed is getting harder too; my arms are losing their ability to lift me up.

When people say "You're looking good", they don't see any of this. It's hard to see unless you see it every day, all of the time. It's easy to dismiss a single incident as aging or tiredness or all kinds of other things. You only truly see ALS when you are with it every hour of every day; unless, of course, you are near the end. I am not yet near the end, but my arms are getting tired.

Monday, 24 November 2014

It's Just Stuff

My house is a mess, the clutter, detritus and leftover food from the weekend at the cabin spilling and spewing off the kitchen counters, into the dining room and even reaching around the corners in the living room. It seems I took a lot with me, and brought even more home. I tried giving away the leftover food, to no avail. As Mike said, "It's not like we don't eat at your place often enough, Richard." Elizabeth chimed in with "Save it for the next party."

Oddly enough, I don't mind the clutter. Years of living with my ex-wife actually taught me a lot about mess; her obsessive need to collect and clutter, her inability keep the house even close to something resembling tidy, her compulsion to fill every available counter space and surface with something or other, cupboards bulging beyond control with too much stuff. All of that taught me a couple of simple things about living with a hoarder, and living with mess.

Sometimes you just look past the mess, the stuff stacked on countertops, tabletops made unusable by collections needing sorting. Sometimes you just look without seeing, finding comfort in knowing that the mess will be there regardless of your state of mind or emotion, knowing that there are times when you must accept the mess, that there are times when living with the mess is part of life in general.

I lived with it for so many years. Then I got my own place and while I am certainly no "neat freak", I like to keep it tidy. Stuff can't always be put away. Sometimes there is stuff that you are in the midst of handling. Sometimes your mind just doesn't want to contemplate the work needed to get stuff out of the way. But I also learned something else; if you take one thing and put it away, there is less stuff. If you take another and put it away, there is even less stuff.

Being in the wheelchair and dealing with the exhaustion of ALS has emphasized that lesson, made it even clearer to me. The art of getting tidy is simply the act of taking one thing and putting it away, repeatedly. The art of tidy home is a place for everything and everything in its place. If you have stuff left over, it's time to get rid of something. After all, it's just stuff.

Sunday, 23 November 2014

Up Too Early

I got up early this morning.  I didn't intend to get up early. I was happily snuggled in my bed, warm and sleepy, when my nether regions announced their immediate intention to awaken me, sending my scurrying, or rolling, as it were, to the toilet. This happens to all of us, our bodies demanding attention when we are warm in bed. For most of us, we simply get up, do what needs to be done, and return to bed.

For me this process is not quite that easy. When at home, I can pretty much do this. I get into my wheelchair, roll into my wheelchair accessible bathroom, do what must be done, and return to my bed. The access to the bed is the big thing. At home, it is relatively easy, and even when it is not I have the sling and lift system. Here at the cabin, the bed I sleep in is one of those needing a stepladder for access. Mike has been lifting me into bed at nights. Once I get out of bed, I am out until someone lifts me back in.

Here is where my personal modesty cuts in; I don't want to ask someone to lift me into bed while I am mostly naked, clad only in my boxer shorts. It's just a bit to much to ask. I know Mike or others would willingly help, just as I know that I am unwilling to ask.

This morning, I got up and did what my body demanded. Then I got mostly dressed in my wheelchair. Cheryl had to come and help me with my pants; try putting jeans on while sitting in a cushioned chair. Also, the cabin is not wheelchair friendly; there are no grab rails or M-rails or safety bars. I was good until the last little bit, then I called for help.

The real problem is that I am both up too early and exhausted from the efforts of going to the toilet and getting dressed. It took me almost an hour to regain my sense of strength. I was shaking through much of breakfast. Sitting here in the living room I am cold, needing to put on my sweater to warm myself. As I type, slouched over in my chair, all I really want to do is go back to sleep. I will do that, but probably on the couch. It's too much to contemplate getting back into that bed.

Saturday, 22 November 2014

Happy Anniversary To Me

This is the day, the second anniversary of my diagnosis with ALS. Two years ago today I was in a hospital room listening to a neurologist tell me I had a terminal illness with no treatment and no truly effective cure. All I could do is plan for the ever diminishing condition of my body, to do whatever things I wanted to do "sooner rather than later". I knew about ALS; I knew what it would do. We talked about how I would likely progress, and how I would likely die.

For the first year, things went almost as predicted. The loss of the use of my legs continued in a rapid pace, as it had been prior to my diagnosis. My arms began to hurt, probably more from the increased used put on them by the wheelchair than anything else. Other big changes happened, like the loss of my ability to work, the modifications to my truck, the general process of adjusting my life to this new condition.

The last year has been different than expected. It would seem my progression is much slower than initially expected. The doctors are surprised that I am still driving, still living alone, still looking after myself, mostly. There have been changes, subtle changes, that most people don't see, that most people wouldn't notice unless they were to spend substantial time with me, as do many of my truly close friends. They see the changes; they know.

It's really not the subtle physical changes this year that have impacted me; it's the profound emotional and psychological changes that have really hit home. As this year has progressed, I have seen more and more loss of my "self" in this process. The physical changes, even the most subtle of them, have driven home the diminishment in my abilities, the reduction of my self-image, my self-esteem. While I am loved and surrounded by those who care, I continue to feel the loss of relevance as much as the loss of body.

The first year was physical. The second year was emotional. The third year is yet a mystery although one tinged with the hope of a fourth, the possibility of just a bit more time. That may be the biggest change of all in this last year, that I can actually hope for more. It's better than when it started.

Friday, 21 November 2014

A Small Cabin In The Woods

This is a very late posting; technology is not always reliable out in the woods. We are at the cabin for the weekend. When I say "cabin", what I really mean is a 5,000 square foot luxury log home nestled in the foothills of the Alberta Rockies. The cabin comes with a 9 person steam shower, a 10 person hot tub, a theatre room, a pool table, a terrific kitchen, and sleeping accommodations for at least a dozen people. The building itself is constructed of hewn logs, wooden floors, and sits on three levels. There is plenty of room for all of us.

This is our third year at Wavehill. Ironically, when I booked the first year it was intended as a distraction from what would be my 33 and last  wedding anniversary. As it happened, my diagnosis with ALS occurred just two days before my anniversary. Our first night here, on our first year here, has come to be known as the "night of crying". Nonetheless we are back for our third time, to spend a weekend together away from the city, with each other, enjoying food and drink, relaxing.

I am not sure which I enjoy more, the drive here or the view from the deck. To get here we head west from Calgary on Highway 1A, a secondary of the TransCanada Highway. About 40 minutes our of Calgary, we make a right and head up into the benchlands of the Bow River, and ultimately up into the forested foothills. Along the way, the granite edge of the Rockies stares us in the face, like a barrier at the edge of the world, snow covered where the snow can grip to the near vertical face of so many upthrusting peaks. The sun sets behind those mountains, adding an ever-reddening crisp edge to the end of the day.

The Great Room of the cabin itself looks east, down a small valley covered in a light dusting of snow. Deer wander about, safe from hunters on this private piece of land. Evergreen trees edge the hillsides, widely spaced, offering an open forest floor for the denizens of these woods. The sky to the east is a deepening blue trimmed with dark grey clouds, portending the soon to arrive nightfall. There is no wind; the branches sit idle, awaiting the next snow.

It's time to relax. Tomorrow is a big day. This is the last day of Year Two with ALS; tomorrow is the first day of Year Three. Wavehill is a good place to spend that time.

Thursday, 20 November 2014

Crow's Feet

I have crow's feet; no, not those cute little wrinkles you get at the corners of your eyes when you smile. I mean my feet look like those of a dead crow, stuck in that half-curled position that birds feet take when they are dead, or fully relaxed. My toes, especially on my left foot, have a permanent curl to them.

Think about feet for a minute, especially your toes, and birds toes. A bird's feet have evolved differently from ours, but we share the same common root. A bird's toes are designed to relax into a semi-curled position. They are that way when the fly, and when they die. This semi-curled position means that when they land on a branch, simply by relaxing their feet they can make contact ready to clench and close. When they want to leave, once again all they have to do is relax and they are free to go. Their toe reflex is triggered when the inner part of their foot makes contact, automatically closing. Even when you see a crow on the ground, you will see a curl in their feet. It's natural.

Now think about your own feet. Human feet also have a natural, slight curl in the resting position. We, like the birds, have to think about it to flatten them out, unless they are actually at work. When your foot is lifted, your toes get ready for the next contact by curling slightly. When the ball of your foot touches ground, your reflexive reactions cause your toes to splay out ever so slightly, in preparation to grasp whatever surface presents itself, in preparation to spread out your weight, to stabilize. When your toes touch down, they sense the surface beneath them and either curl slightly for grip or spread slightly for distribution. They adjust automatically; it's natural.

My toes, on the other hand, do none of that. The muscles that would normally cause my toes to splay out no longer work. The muscles that cause my toes to grip no longer work except for the smallest bit, an oddity that I find confusing. My toes can curl, but they cannot straighten out. Add to that my wheelchair reality; my feet rarely hit the ground these days, and when they do it is usually only for a moment or two.

Given that my foot muscles are dead and my toes are unworked, they are slowly reverting to their permanent resting state; curled. My toes on my left foot no longer straighten out at all. The toes on my right foot can still go flat, but only if I make it so by intervention and pressure. Their natural desire is to curl up. Thus I have feet like a crow, or perhaps more like a dead crow. I have crow's feet.

Wednesday, 19 November 2014

I Cry For Happy, I Cry For Sad

I am crying this morning; not a lot, just those little tears that scrunch up in the corners of your eyes, wanting to let go, wanting to hold on, the kind of tears that a blink cannot release, but that hang there, slowly making there way onto my cheekbones. This morning my tears have two causes, reasons to cry at complete ends of the spectrum; cry for happy, cry for sad.

This morning the online ALS community was hit with another loss, as it is almost every day. A young man named Louis DiGiacomo died last night. He was just 29 years old when diagnosed, and now, 38 months later, he is gone. He leaves behind a beautiful baby daughter who will never know the joys of her Dad. He leaves behind a grieving family, a mother who lost a son too soon, brothers, sisters, grandparents, his fiance. ALS came to him early and took him young.

This morning the ALS community in Canada is hearing the news about what will happen with the money raised by the Ice Bucket Challenge, how $20 million will be poured into research, continuing and building on efforts to find treatments, and ultimately a cure; how $6 million will be distributed to ALS Societies across the country to support and aid those of us with this awful disease. Today we saw the first of what will be many concrete steps arising out of the generousity of Canadians, and people around the world.

I am stricken with sadness to see even one more person die from ALS. We will all die from something, someday; ALS is a particularly nasty way to die. It attacks young and old, rich and poor, powerful and weak. It shows no mercy, has no treatments, no cure. It creeps through your body in nimble sublety, wreaking havoc in tiny steps.

I am excited, happy to see what will happen thanks to the Ice Bucket Challenge, happy to see this continued focus on research into treatments and a cure. I am thrilled to see so much going back to the local Societies, to help those of us struggling with the emotional, social, and financial impacts of this black hearted killer. I look foreward to a day when this will be a "used to" disease, on that people used to get, one that used to have no treatments or cure.

The results of the disease are happening daily to people all around us. The results of the research will take many months and years, too many for me, but results will come. I cry for happy, I cry for sad.

Tuesday, 18 November 2014

I Am Alone; No I'm Not

There are times, plenty of times, when I feel very alone in this process, this march to the beat of ALS and its ultimate end. Dying is the most individual thing any of us ever does. At no point in our mortal march do we have any other thing we do where there is no possibility, nor eventuality, of someone being a part of it. Even our birth is an experience we share with our mother, some fully and some less so. Dying is a solitary business.

Living, on the other hand, is anything but solitary. Even when I am shut up alone in my apartment, as I am today, I am in constant contact with the world around me. Even when ALS takes my body completely, my mind will still be active; with any luck communication with others will still be possible, even enjoyable. I need to remind myself on a regular basis that what I am doing is living. The dying part only takes place at the very end, even though that end is in sight and the pathway is well lit.

There are a great many others with whom I share common life experiences. I am surrounded by men and women who are as frustrated with their love life as I am with mine. I am surrounded my men and women who struggle with insomnia as I do. I am surrounded by others frustrated by their physical limitations. I am surrounded by people with emotional issues, physical issues, social issue. I am surrounded by people, period. Struggling with life is a part of the human condition.

Consider that most obvious representation of what ALS has done to me; my wheelchair. Almost every time I go out I see someone else in a wheelchair. Some are in their chair for short term reasons; for others it is a lifetime experience. There are people who are in wheelchairs from ALS, from cancer, from MS, from car accidents, from work injuries, and on and on. I am not the only person who struggles with a wheelchair.

Then there is the emotional side, the proximity with which I must view my own demise. I know others, I have had friends, who have had to go through this process, to go through their own march to death. The only thing I might say is a bit different for me is that my disease process can be more disheartening; there is no treatment nor cure. Ultimately, however, we all face the imminent prospect of our own end. We all must face these emotions one day.

The damned thing is, it's all so personal. What is happening to me is happening to me, not anyone else. My process, my march, is a solitary one. The physical aspects of it may be common to others, but none are on this road with me. Even those with ALS have different paths from one another; uniqueness in presentation is a hallmark of this disease. I am alone; the things I deal with may be common, but my experience of them is unique to me. Isn't it this way for all of us?

Monday, 17 November 2014

Out Last Night

I am a lean. mean sleeping machine. I can pass out on a plane, toddle off on a train, collapse in the car, and even brown out on a boat. I have always been good at sleeping, with whatever noise there was around, whether day or night, summer or winter. Now, with ALS, that skill is largely amplified; these days I am not only able to sleep, I am constantly tired, making it much easier to doze off at almost anytime. In fact there is only one time and place where sleep seems to consistently elude me these days; in my own bed at about 11:30 PM.

It is the oddest thing. I am constantly ready to put my head down, constantly feeling the tug of sleep on my eyelids, constantly fighting for the energy to do the things which life asks of me. Yet at the end of my day, when all is said and done, I go to bed and lay there, hoping for slumber to come to me. It denies me; it avoids my. My brain races, covering all kinds of thoughts, songs stick in my head, plans for a future I will never have become bits of bone I must chew over and again. Insomnia, for someone who is always tired.

It's not that there aren't solutions for this. I have pills. I can enforce sleep. The problem is that these pills work far to well on me. Furthermore these pills are definitely not to be taken with alcohol. So if I have a glass of wine like last night, at about 9:00 PM, I have to wait for at least a couple of hours to get the alcohol out of my system. Any more wine and I just won't take them.

So last night, I had the wine at 9:00 PM. I watched some TV until about 11:30 PM. And off I went to bed. At midnight I realized it was going to be one of those nights. At 1:00 AM, I decided I should take the pill. At 1:30 AM, I actually took one Zopiclone. My mind must have been working overtime because I remember looking at the clock a few minutes after 2:00 AM. After that, nothing until just before noon today.

The home care worker was due at 1:00 PM to stretch me. I had to force myself through the fog remaining from the Zopiclone to get into the shower and to get dressed. Once done, I simply flopped back on the bed until she arrived. We went through my exercises. When complete, she went to tidy the kitchen and I fell asleep. She came back to find me asleep; I awoke and she said asked if I wanted to stay in bed. I said "yes". She went her way and I went back to sleep, finally waking at 4:00 PM.

I don't know if is the Zopiclone or my general level of exhaustion. But that pill sure put me out last night.

Sunday, 16 November 2014

I Feel Crappy Today

I am having a tough day today, at least so far. I have days like this, more now than in the past. Good days are not all that often in coming. My body is shaking. I am sweating even though I am not hot. My neck and left shoulder are cramping. I am tired despite having plenty of sleep. I just feel crappy.

The problem with this, of course, is that only the shoulder and neck cramping is truly attributable to ALS. The other symptoms could be any number of things. Perhaps I am fighting off a cold. Perhaps I've spent too much time in bed over the last couple of days, making up for a late night that went into morning on Friday and Saturday. Perhaps I am just getting older and my body is giving me a rough time.

Here is what I know for sure. When my body is busy dealing with ALS, other parts of it don't get the energy they need to function well. I am used to having a body that could deal with almost anything, stand up to almost any test. I am used to having a body that could work all day, play all night, get a couple of hours sleep, and then do it all over again. I am used to having a body that could shake off most colds or small illnesses quickly, allowing me to get back on the move again.

I don't have that body anymore. This new body that I have is frail, subject to fits of hunger and complete loss of appetite in the same moment, subject to shaking and cramping, subject to exhaustion when there is no apparent cause. This new body of mine does not take well to being pushed, to being asked to reach beyond its limits. This new body of mine is not strong, nor resilient. It simply cannot keep up anymore.

So here I am, a day like today, beautiful outside, BC Lions game on TV, no responsibilities or expectations, and all I want to do is climb back into bed once again, to see if the shaking and cramping will stop, to see if the sweating will pass, to see if I can feel better. Even though nothing is wrong with me, except ALS.

Saturday, 15 November 2014

I Am Planning A Party

It's getting closer. I can feel the internal pressure rising as the date approaches. Today it's only a a week away; seven days from the anniversary. This is not my wedding anniversary, not a happy birthday; this is the second anniversary of my diagnosis with ALS. November 22, 2012 was the day, the day they told me I had this dreaded disease; the day they told me there would be no treatment, no cure; that I probably had 36 months or so to live. Next Saturday is it, the birthday of my death sentence.

I have done well in spite of that terrible diagnosis. I am still mobile, still traveling, still drinking too much and eating whatever I like, still chasing after life desperately. I have arrived a week short of month 24, week 103 out of 156 in the prognosis, still living on my own, largely caring for myself, making my own meals, suffering through my own mistakes. I am still writing, still talking, still going.

Even with this positive spin, with a progression slower than expected, with less weakness than expected, with my strong desire to live as much as I can, I still feel the specter of ALS leering over my shoulder every day. I still feel the fear, the pain, even the terror at times, from knowing what this illness will eventually do to me. Each night I say a prayer wishing for my own death. Each morning I awaken to find myself disappointed, still here, still struggling. Each day is worse than yesterday. Each tomorrow will be worse than today.

Still, I can reject some of this anguish. Instead of looking at this awful anniversary with sadness, I plan on throwing a party. I plan on living just a little bit excessively, once again, just because I can. The next seven days are a countdown, not in my death but in my life. Next weekend I will celebrate that I have made it this far, and that I have a chance to make it through year number three.

Friday, 14 November 2014

Cat 'N Fiddle Charity Auction

The Cat 'N Fiddle Pub here in Calgary is hosting a fund-raising auction tonight, the beneficiary of which is the Rosedale Hospice. I am looking forward to being there, to supporting this event and ulitmately the Rosedale Hospice. We are surrounded by pleas for giving and charity on an almost constant basis. Big Pink is everywhere. The Ice Bucket Challenge was a monster this year. Small societies and charities are forever seeking donations. So why this?

There are a couple of things I really like about this kind of event. First and foremost, I like that the funds are going to a hospice society. This has a very practical impact on me personally; it is almost certain that I will end up in some sort of care at some point, most likely a hospice, assuming I choose to hang around that long. If I leave early, then I will still be at home. Nonetheless many PALS end up in this sort of care.

It's not just PALS who end up in hospice. My friend John, when dying from leukemia, spent his last days in a hospice. Many cancer patients end up there. It is a setting uniquely designed to provide the right kind of care and comfort as we end our days. These facilities become particularly important where the level of care requires heavy medication or special services. Were it not for the hospice, these people would face their end of days in a sterile hospital room, a place where the noise and bustle of clinical care intrudes on the time and space needed for dying. My Dad died in a hospital; I wish it had been hospice care. It would have been better.

Then there is they whole nature of this kind of event. Instead of simply giving money, something we are all encouraged to do, I get to go to an auction, bid on stuff I want, and know that every penny of what I spend will be given to the hospice. The pub will sell beer and food, something that always works for me, but the items up for auction, all $40,000 worth, have been donated. It is a great blend of charity, fun, and just a bit of self-interest. It's all easier to do.

Finally there is the social aspect of this kind of event. I have been to any number of charity events. As an extrovert, I inevitably prefer those which allow for social interaction, those which offer an opportunity to be active with other people. The Cat 'N Fiddle is one of my favourite hangouts; I go there at least a couple of times a week. I know the staff and many of the other "regulars". I like it there, often staying well past "closing time". In fact I will probably do that tonight. It's going to be fun; I want the fun to go on as long as possible.

Thursday, 13 November 2014

Couch Potato

Yesterday was a very quiet day. I got out of bed at noon. Home care came for my exercises at 1:00 PM and left at 2:00 PM. I wrote and surfed on the internet until about 4:00. Then I did something unusual; I transferred from my wheelchair to my nice leather couch, the couch I sit on so rarely but would like to sit on a lot more. I took a nap until about 8:00 PM, then watched TV until about midnight.

Then I began the process of getting off the couch, back into my wheelchair. Normal people don't think much about getting off the couch, unless they are extreme couch potatoes. Normal people just stand up. I, on the other hand, have a whole process I have to go through, rather like a mini-project. I need to consider the method of approach, the tools needed, the risks involved and what to do if something goes wrong.

For example, I need to have a plan for recovery should I slip in the process, winding up in a lump on the floor. It happens, not just to me but to others in wheelchairs too. One of my PALS once told me the story of falling while transferring, then laying on the floor all night until help came. Since I live alone, I need a better plan; I have one. If I slip to the floor, the first thing I will do is unlock the wheels on my wheelchair so I can push it in front of me. Once positioned, I will slide along the floor, pushing my wheelchair until I get to the sling lift in my bedroom. Once there, I will reach up and turn on the lift, lower it down, strap myself in including using the leg straps since I will be both exhausted from the effort thus far and since the lift will be a high one. Then, once levitated, I will pull myself over to where I have previously positioned and locked my wheelchair, and finally lower myself in. You see, I have a plan for that risk. It's not simple, but it's a plan.

But what about if I fall and hurt myself, perhaps twisting a knee as I have done in the past? In that case I will need my cell phone to call 9-1-1. The front door of my apartment is unlocked, so they won't have to break it open. I keep it that way while I am awake just in case something like this should happen to me. In this situation, I make sure my cell phone is near at hand, close enough that I can grab it even from an injury position on the floor but in a place where I won't knock it to the floor during the gyrations of transfer. That risk is managed; not well, but managed.

Then there are the tools I need. I try to use my transfer board for some of these riskier transfers. Last night, however, I had left it in the bedroom from another transfer. So this time it was a careful placement of my wheelchair, removal of the ottoman from the work space, and a lifting transfer from the couch to the edge of the chair. Then I wrestled myself upwards enough so I could grab the wheels and finish lifting myself into place, pushing my body upwards into a sitting position.

I made the transfer successfully. It's a lot of effort just to get off the couch.

Wednesday, 12 November 2014

It's Wearing Me Out

I hurt today; not the cruel kind of pain that stabs deeply, it's the general shallow ache and soreness that is so much a part of my everyday life. Only today it is broader in scope, deeper in nature. It starts in my fingertips, moves through my hands, into my wrists, up my arms and into my shoulders. My neck hurts. I am tired, worn out already and it is only the start of my day.

Sometimes it's hard to tell if the aches that I feel are ALS or age related arthritis. After all, I am nearly 60 years old, a time when a great many people suffer from general aches and pains. Perhaps some of it is just plain getting older. The pain in my fingers and maybe my wrists certainly reminds me of the arthritic pain I have felt in the past. On the other hand the pain in my arms and neck is muscular, not joint pain. I can tell; it's different, the kind of pain that has only started since ALS decided it wanted my upper body.

Part of the pain is simple muscle usage. I use my arms so much now; there is nothing I do that doesn't require me to put them into action. The problem is, of course, that there is no gain to go with this pain. No amount of exercise will build muscle where neurons are failing to send the proper messages. The workout has no upside; I just get to hurt from it.

Another part of the pain is "nerve" related pain. My nerves are working overtime, frantically trying to maintain current connections and even build new ones to replace failed connections. All of that work takes energy, leaving my arms, and the rest of me, exhausted even when I am not tired. My general loss of muscle tone adds to that tiredness, that inability to push myself just a bit further.

A couple of people have said lately that I am "looking good". Appearances are deceiving with ALS. They can't see inside my arms, or under my clothing. They can't see the weakening muscles, the cottage cheese surface of my skin where atrophy is actively taking place. They can't see the exhaustion, the pain. All they see is the cheerful man who isn't letting all of this nonsense stop him from living. Only it's getting harder and harder to be cheerful, especially on mornings like this.

I hurt today. I hurt yesterday. I will probably hurt tomorrow. That's just another fact of my life with ALS. It's not bad pain, it's just another thing wearing me out.

Tuesday, 11 November 2014

Is Peace Possible?

Today is Remembrance Day, or as it was called when I was a youngster, Armistice Day. While the name was changed in 1931 here in Canada from Armistice Day to Remembrance Day, there were a great many men around in my childhood who still remembered that day when the First World War, or as the now ironic propaganda said "The War To End All Wars", came to an end. Today I remember.

I remember my Grandfathers, maternal and paternal, and my Great-Grandfather though I never met him. I remember my uncles who fought in World War II. I remember my Dad, who fought in Korea. I think of my brothers, both of whom served in the Canadian Navy, and my nephew who served with the US military in Iraq. We are a family studded with military medals and service, yet none of the above died in action; we seem to be a lucky lot. Some served in war, some served in peace. They all served.

While I remember those who served in the military, I also think of those who have served and died in the cause of peace, in the advancement of freedom. I think of those innocents whose lives were taken, are still being taken, by those who would use force to advance their political, social, religious, or geographic desires. We talk about those who died fighting, willingly giving up their lives in advancement of their nation's desires. Yet we talk little of all those who died without even knowing the causes or reasons, all those still dying. We need to remember both the willing participants and the innocent victims. War takes them all.

Somewhere in the world today, people will be killed in armed attacks. Innocent civilians will die in bombing raids. Children will be killed in gunfire randomly shot from behind a barricade. Mothers will see their young dead around them. The young will see their lifeless parents beside them. This has been true in all wars; it is still true today. As a nation we are once again at war.

My hope is that one day we will celebrate Remembrance Day as the day we remember what war does to us, both as a people and as a planet. My hope is that one day the idea of using military force to solve a political, social or religious issue will be antithetical to human nature. My hope is that one day all mankind will rise above its own petty greed and selfishness to see that there is a peaceful solution to all things where people are willing to work towards it.

I won't see this in my lifetime. Perhaps it will never happen. We, as a species, are particularly good at killing, and procreating. We will have a constant supply of young men and women who will believe the propaganda, who will listen to the zealots. I wonder if peace is actually possible.

Monday, 10 November 2014

A Beautiful Woman

About 90 minutes ago a beautiful young woman walked into my apartment. Carmel coloured skin, slender and lithe, only 27 years old, she laughed as she talked to me, encouraging me to get into my bed. There she adjusted my legs and hips, then climbed in, settling herself beside me, focused on what was to come. Her soft hands, her gentle smile, her dark lips and deep brown eyes, all there and waiting for me.

She moistened her lips, spread her knees to steady herself, and grabbed my legs, taking full measure in the effort that is a part of my routine every Monday, Wednesday, and Friday. She exercised my calves, my thighs, my hips and even my arms. She massaged the cold out of my toes and gently held my knees as she raised and lowered my legs. In the end, she left me exhausted, unable to move, ready for sleep. She is good at her work, wearing me out quickly, working me out completely.

It all sounds good, but she is the home care worker who arrives every Monday, a lovely young woman from East Africa. She is all business, focused on the serious work of keeping me as mobile and flexible as possible for as long as possible. Her attentions cause me to ache and groan, as unattended muscles are reminded that, even if there are no signals from my brain telling them to do so, they must yet move. She chatters at me as she works, keeping things light and keeping me moving.

I often think of the comment of another PALS, a fellow now dead, who was fully consumed by ALS. He needed help with almost every aspect of his life, including bathing, dressing and moving about. He once complained that "dozens of women have seen my junk, and not an 'Oh wow' between them." I sometimes wonder what these women think about as they care for my body. I know the thoughts that run through my mind primarily revolve around the pain and ache that even dead muscles can cause. Sometimes I just let my mind go blank, so I can escape the counterfeited intimacy; I leave and go elsewhere, waiting for the job to be done.

It is an odd part of ALS, to need someone, a stranger in most cases, to come and care for you in the most intimate of ways. It is the kind of thing where you need someone with no emotional connection, no intent to move from ersatz to reality, someone who can focus on the business at hand without connection to the emotions involved. I need to be stretched; she is the person who stretches me. That is all.

Sunday, 9 November 2014


I have pretty good intuition, except for a couple of fairly glaring blind spots. I've learned to trust that inner voice that speaks to me about things like what the weather might do, or where the deer might be hiding, or what the fish might find interesting to eat. I'm a pretty good judge of what people might do in a given situation and how they might react. Oddly enough, I even have that kind of intuition around technology; I just know what to do at times without actually being able to explain why I know it.

There is a term for this; it's called "conscious unconscious competency". It means knowing that you know something without actually having to think about why you know it, or without having to go through a complex thought process to respond. You just do, and you trust your instincts, if that's what they are.

Yesterday is a great example of this. I awoke in the morning looking out the window from my Mom's bedroom, wondering at the leaves on the trees and the clouds in the sky. I noticed that the clouds were moving east. I also noticed that they were the kinds of clouds that precurse a change in weather, most likely to be rain on the coast of BC.

Then I rolled over and thought about getting dressed, about whether or not I should go home on Saturday or Sunday, or even if I should stay another week. After all, just a couple of phone calls and emails would free me up until the following weekend, even longer if I wanted. Yet something in me said "go home today." I went to see my Mom in hospital where she is recovering nicely from her hip injury; she will go home soon enough as well. Then I hit the road, with one stop to see an old friend in Abbotsford.

Once I got underway I thought about stopping in the hunting camp to see how the day went. I decided against it, pushing on through the evening. I arrived at the half way point, thinking I should stop for the night, but the hockey game had just started on the radio so I kept on driving. Further down the road I thought I should probably stop for the night, watch the hockey game at a local pub, and rest until the next day; but then the Kings scored a couple of quick goals and I thought to myself, "Do I really want to pay for a hotel and buy beer in a pub just to watch the Canucks lose?" I rolled on into the night.

At about 11:00 PM I drove into Golden. The game was over, a predictable, ugly loss by the Canucks. I looked at hotels as I drove through town and thought to myself, I can be home by 2:00 AM. So on I went into the night. Then the weather caught up with me. As I had crossed Rogers Pass a couple of hours earlier, there had been some light snow and rain. As I headed up into Kicking Horse Pass, the snow get heavier and wetter. The road got slick, even dangerous. Through Banff it eased off a bit and I thought I had gotten lucky, that the worst was in BC.

Then the ice came, or rather that nasty mix of snow, fog and freezing rain that happens early in an Alberta winter. By the time my truck was in my garage at home, it was coated with a glistening ice cover, a cover quickly melting in the heat of the parking lot. This morning I awoke to snow; the sky is white and the roads are a mess. Winter has arrived here in Alberta.

The connection is interesting. Somehow beneath all my surface thoughts, I knew that those light, fluffy clouds heading east from Vancouver would mean snow in the high country. Somehow I knew that the cold of Alberta would meet that moisture soon enough, making the roads dangerous and the drive tedious. Somehow I just knew; go home today, keep driving, don't wait for tomorrow.

Of course it might have been just luck. It might have been my habit to drive all the way back to Calgary in a day. It might have been any number of things. But it happens to me a lot this way, where I just managed to see things coming, at least some things. Sometimes I get blindsided, but not all that often.

Saturday, 8 November 2014

What Makes Me Happy

I awoke this morning looking out the window of my Mom's bedroom. While I am visiting and she is in hospital, I am staying in her room. Outside the window there is a chestnut tree, it's leaves a mix of mottled yellow-green, gold, and the deep red brown that marks the end of the season. The branches are half-bare, quivering in the light breeze not strong enough to shake the dying leaves free to fall to the ground. Beyond the tree, through the screen of partially clad branches, the sky is a steel blue stretching to the horizon beyond the houses across the street. Light, bright, white clouds drift from the west, heralding another weather system here on the coast of BC, another pattern of rain and wind that will be snow in the high country, making the roads slick and wet for my drive back to Calgary.

When I see things like this, my mind is forced from reverie to wondering. I ask myself if this is the last time I will see this scene, the last time I will witness the colour march here in the fall. For so many things I am compelled to ask myself if there will be another time, if I will see this scene, if I will smell these smells and feel this way. It is a melancholy that forces itself into so many places in my life.

There is a consistency of advice around me these days. "Do what makes you happy." "Look after yourself first." "Do what you want to do." After a lifetime of doing what I think others need or want me to do, focusing on what I want is difficult. In truth, the thing I want to do, the thing that has for many years made me happy, is the first thing I truly lost to ALS - my ability to skipper my own boat to the tiny harbours and inlets that string along this crumpled coast. It is the ultimate cruelty of my experience with ALS, that the things I have loved to do are the things that are lost to me.

I have, of a sort, supplanted the boat with my truck. I like to be on the move. I like to see new places, or see old places again through new eyes. I like the moving panoply alongside the highway, the constantly changing cavalcade of trees and mountains and lakes, the characters of men and beast completing the show as I move along. I am inconstant, unable to stay in one place permanently or even the shortest of time, constantly seeking the next curve of the road, the next horizon line. I need to move; that makes me happy. I have itchy feet.

Of course soon ALS will steal that from me too. Soon I will lose my freedom to move, in my truck and eventually even in myself. This eventually is not long in coming; it's halfway here. I am already in the grips of battle with the thing that will ultimately win out, ending my wanderlust in hospital bound entrapment. When that happens, my only wanderings will be in my mind.

Friday, 7 November 2014

Outside Looking In

I broke a vow yesterday. I did something I swore I would never do again. I went back to the house I once lived in, the place that was a home to my now ex-wife and my children, a place that is still home to two of my children as well as to my granddaughter and son-in-law, but was never a true home to me as much as it was the place where everyone else lived but I did not seem to exist. I had to do it. My daughter and granddaughter were with me in my truck. It was cold and raining. There was nobody other than me to take them home from our terrific day and dinner together, so I sucked it up and did the deed.

It has been almost three years since I pulled out of that driveway, vowing never to return again. Not much has changed since then. My ex-wife has finally put on new gutters, something that had been needed for years. She took down the basketball hoop, something I had wanted to do for years but had been told not to do because our son might want to play basketball. I guess she finally figured out that he stopped playing basketball years ago.

The carport was jammed with stuff, a condition it has scarce ever been clear of. It's kind of funny, all the times I was told to get rid of my stuff in the garage so she could park her car in there, how many times I was told to clean it up so her car could get in. Yet here it is, some of the tools still in the same place I left them three years ago, more stuff shoved into the work bench and atop the cupboards, other stuff blocking any hope of parking. Now that I am not there, she can fill it with as much clutter as she wants.

I dropped off Meaghan and Charlotte in the driveway. Kate is in town visiting and Rick has his car in the driveway. My truck made it most of the way off the road, the back end just edging the curb of the cul-de-sac where I used to reside. Rick and Kate came out in the rain to talk; Kate gave me an update on the hunting trip.. still no luck, Rick wanted to see if I was around this weekend so we could get together. Meaghan unloaded her stuff and moved my suitcases from the back of the truck into the front seat.

Then they all went inside. I could almost hear the laughter and chatter of their voices. I slowly pulled round the semi-circle, staring at the light from the living room, wondering about my life there. I had lived in that house for 26 years, some of them happy, many of them difficult. It was never really a home to me; it was certainly a home for my wife and children. Now, once again, I was on the outside looking in as my children and granddaughter enjoyed life inside. It had long been the story of my life there. My heart broke again, just a little. I had to go there; I wish I hadn't.

Thursday, 6 November 2014

Little Girl TV

I am sitting here on the bed in my hotel room, sharing the sitting space with my 4 year old granddaughter. My daughter had to do a few errands before our day in the city, so she left Charlotte here with me for a bit. It's an interesting experience, to see the world through her eyes, to get her perspective.

For example, she has no perspective on the wheelchair, no perspective on the way I get around or struggle in or out of it. ALS came to me at about the same time as she was born; she has no recollection of me other than in my wheelchair. While she was still a babe in arms, I left my ex-wife; my daughter and her husband moved into the house that was once my home. Charlotte didn't see me for some time, and by the time she did, I was no longer walking. The wheelchair means nothing to her; it is just a part of who Gramdpa is.

There there is the whole "apartment" experience. When my children were little, they had no idea what an apartment was. We lived in a house, Grandpa and Grandma lived in a house. Grandpa With The Mustache lived in a house. Nanny lived in a house. Everybody lived in a house. Their only exposure was to apartments; we traveled and stayed in hotels regularly. So when my Mom and Ray move to an apartment from their house in Maple Ridge, my kids got their first look at this new style of living.

They were amazed! "Grandma lives in a hotel!". they wondered. "Does Grandma's hotel have room service?", they asked. "Grandma's hotel has a kitchen," they shouted in glee. Charlotte, on the other hand, has no trouble with apartments; it's hotels that confuse here. She doesn't understand why I am not in my own "apartment" or why my "apartment" doesn't have a living room.

She is glad, however, that this "apartment" has a "magic shower", just like my other apartment. Apparently that is what you call a shower with a wand attachment and a bench. And of course she has had to try out the toilet several times. There is nothing quite so exciting as a new potty to try out. She even got to open her own soap and wash, and wash, and wash her hands.

One thing Charlotte does think is very cool; this "apartment" has a TV in the bedroom, something she clearly wants in her own bedroom. She is watching her "little girl TV", the children's shows she is permitted to watch at home. She likes that I have little girl TV. I like that I have this little girl keeping me company, watching TV. It's nice.

Wednesday, 5 November 2014

Beware the Zopiclone, My Son

Beware the Zopiclone, my son; for it strength to leave you stunned. I have a sleeping aide called Zoplicone. I take it rarely; I've had the subscription for a month and have only taken three pills so far. This sleeping pill works fairly quickly for me, and apparently fairly powerfully. In the description they warn about the "hypnotic" effect, where you are sleeping so deeply that you lose touch with everything, and if you are wakened you actually may forget about the whole waking period.

That happens to me. When I take one of these little suckers, I go dark for about 8 hours, with no notion of what happened in between. Last night, after spending an afternoon in the woods, I had dinner in camp with Kate and Mike and his clan. I had a couple of drinks of something called Rum Chatta, a drink Rick and I discovered in NOLA, along with a steak and beautifully baked potato. About an hour later, I was on the road back to the hotel, for a much needed rest.

I watched the last of the Canucks hockey game, checked email, and was in bed before 9:00 PM. I was tired, really tired. Yet sleep did not come. I tried, I really tried, to shift myself into sleep mode. Alas my body thought otherwise; perhaps this is the true punishment for all my Tuesdays where I stay up until 2:00 AM or later, sitting with the folks in the bar, listening to their tales and telling a few of my own. Still, sleep did not avail me.

So I took the pill a little after midnight, having spent 3 hours restless. I can remember readjusting in bed a couple of times; that's all. My next memory was at about 9:00 AM, thinking that I should probably get up as quickly as possible so I could get to the hunting grounds early. I sat up, and fell right back over. The pills have a warning that you might experience instability on awakening; I did. So I went back to sleep and re-awoke at 11:00 AM. I got up more steadily.

It was then that I realize the hotel might have a checkout time before noon. I got up, called the front desk and was told checkout time was 11:00 AM. By this time it was already 11:25; the front desk girl was so nice. She said "I know you are in that wheelchair and I didn't want to bother you." We arranged a 12:30 PM checkout.

I don't think I am going to make it to camp early. If I get there by 2:00 PM, I will be lucky. Given that it is full dark by 5:00 PM, my suspicion is that the deer and moose will be safe today. Oh well, I am going to blame it on the Zopiclone monster.

Tuesday, 4 November 2014

Hunting and Driving

I'm up early today, at least early for me. I woke up sometime before 10:00 AM and even managed to go to the restaurant here in my hotel to have a sit-down breakfast. This is the height of decadence for me, to have a real breakfast in a real restaurant before 11:00 AM. Of course I expect I will pay for this later today, perhaps an early evening bedtime tonight.

The reason I am up so early, at least for me, is simple. Today I plan on driving up into the high country of the Okanagan Plateau, near Westbank where my cousin Mike lives, to go hunting. The prey today is moose or deer. Although I have already missed the morning hunt, something completely impossible for me these days, I will still have several hours after lunch to wander the dirt tracks and logging roads of this hunting ground, perhaps just as much interested in the exploration as in the game.

Yesterday, when I left Calgary, the sky was a crystal blue, the air so clear that the mountains in the distance stood off in sharp relief, edged in stone against an almost painted backdrop, the blue of the sky only slightly softened by the odd high and white cloud. It was warm, at least for a late fall day in Calgary. The road was bare and dry, not a whiff of problem for the drive. I left at 2:00 PM for the 7 1/2 hour drive to Kelowna and Westbank where I stayed last night. I will be here tonight too.

It's amazing to me that I can still make this drive, that I can still do a fairly long day behind the wheel. I don't understand why the exhaustion that makes up so much of my life seems to disappear when I drive. Nobody expected me to last this long behind the wheel; I remember the fellow installing my hand controls wondering if I would really need them for long. After all, I had ALS. Yet here I am, now almost 20 months later, still making my way in the world inside my big blue truck.

Even the persistent rain in BC didn't stop me yesterday, the rain that started once I passed Golden on the Trans Canada Highway. It began as drips and dribbles. By the time I was up and into Rogers Pass, it was full on, a pounding rain that caused flooding down on the coast. The roads were glistening reflections of street and truck lights, the rain pounding back up as well as down, drenching everything. Yet on I drove, feeling safe and confident in my ability.

Not everything is lost to me. Today I will go hunting; really I will go driving. Others will do the hunting, I will just be along, having lost enough strength that a straight shot is unlikely. Yet still, I will be in the bush, in the woods, up in the mountains and plateaus of BC, outdoors, mostly. I have a while to go yet.

Monday, 3 November 2014

Another Meltdown

I have the occasional meltdown, a cathartic release of the fear and sadness trapped inside of me. They can be ugly, lots of tears. It's not surprising, given what I what I am going through. Even so, the actual events often take me by surprise, erupting from within the chamber of emotions held scarcely in check.

There's usually a trigger behind a meltdown, something that drives home my reality. Sometimes they are alcohol induced, me the drunkard crying in the night. Sometimes they start all on their own, something hitting my emotional release valve. Fairly often, in fact almost always, I can see the triggers and reasons in hindsight far more clearly than in the moment.

I had a meltdown last night, this one aided by a few glasses of wine and scotch. In some ways I wish I was strong enough to let the anguish go without using alcohol to free the taps. I've seen it in action, when I have "a moment or two" while completely sober. In these moments I quickly grab the handles of my emotions, shaking myself back to "normal". When I have a few drinks, I am far less able to grab those handles, too weak to shake my emotions back into line. Out they come.

The most common internal feeling when I have one of these ugly events is fear. I am afraid of what is happening to me, what it means to my days and weeks to come. I am afraid of being alone, having to face that fear, as the song says, "all by myself". This is a nasty ride I am on, my hands barely able to hold the reins and rails. To see myself die a little bit each day, to watch myself slowly disappear into the quicksand of ALS; this is truly frightening.

I am not strong enough to deal with this, nowhere near as strong as I pretend to be. Only a few people have seen me through these meltdowns. Only a few have heard me cry out, asking them not to leave me alone. Only a few have been there as the magma breaks out, overflowing the sides of my life's volcano. These meltdowns are not massive eruptions, nor a steady flow. They happen, I the prisoner of my own weakness and sorrow; they pass.

To those whom I trust with this, I ask forgiveness. It's a tough enough load for me, let alone you. Nobody signed on for this. To the men and women who have seen me through this and are still seeing me through this, I thank you, not just for being here but for keeping this trust. I don't feel lessened that you have seen the weakest me; I feel strengthened when your hands hold mine, safe in your care.

I wish I was a stronger man. Perhaps I could manage these emotions better. Perhaps I could let them out more easily. Perhaps I wouldn't meltdown. I'm not sure. Perhaps not.

Sunday, 2 November 2014

Big Buys

A friend of mine bought a home yesterday, a fabulous apartment in one of the nicer areas of Calgary, a neighbourhood called Connaught. His building is a couple of blocks off of Calgary's "Red Mile", a strip of 17th Avenue lined with trendy bars and interesting restaurants, all filled most Friday and Saturday nights. The nice thing is that he is a couple of blocks away, close enough to walk but far enough that he doesn't have to deal with the congestion and noise.

It's interesting, the process of purchasing a home, how different it is today from 30 years ago. The amount of disclosure involved, the inspections, the analysis of neighbourhood data. When I bought my first home, there was none of this. It was truly "caveat emptor". When we bought what would ultimately become our family home, the homeowner was not required to disclose the aluminum wiring or the crack in the chimney flue. Since there was no home inspection back then, we had to take our chances and go with what we knew.

These days there are far more protections in the home buying process, yet even still it can be fraught with difficulty. I have always wondered why the two largest purchases most of us are likely to ever make, a home and a car, are purchases with so little regulation. Sometimes I think there are more consumer laws governing the sale of a $1.99 children's toy than there are governing the sale of a $25,000 car. Of course all of these protections go out the window when purchasing a home or a car on the secondary market.

This is why I have two simple rules for both of these purchases. For a car, go through a dealer; it gives you someone to sue if something should go wrong. For a home, go through a licensed and bonded real estate agent; it gives you someone to sue if something should go wrong. It's not that I am a litigious person; it's that the people or agencies have a lot more skin in the game if something should go wrong. They are there, and have to be there, mostly, after the deal is done. While not well monitored, their business practices can be challenged if necessary.

In the past, knowledge was power in these transactions. Most people didn't know a lot about cars, or about houses. Many of us knew about land, but not the complex details of construction. Many of us remembered cars from a simpler time, but we don't know a lot about the highly engineered, computer controlled cars of today. Thanks to the internet, that knowledge gap is lessened. But there is still a gap, especially in the area of buying a vehicle.

These are big purchases, complicated purchases. Even today there is a degree of special knowledge needed in making them. Yet these are the things we all wish for; a home and a car. Or at least most of us; I wanted a truck.

Saturday, 1 November 2014

The Season

Winter has arrived in Calgary, at least for today. There is a heavy, wet snowfall tumbling from the sky, blanketing the roads and trees outside my window. The air is a crisp chill. Sidewalks are wet, parking lots are a mess. It's the beginning of the season of cold.

I went out for an early lunch with a couple of friends this morning, a start today that was almost a shock to my system. Afterwards another friend and I went to Canadian Tire to see about getting the tire on my Freewheel repaired. I lent it to another PALS a couple of weeks back and when I got it back the tire was flat. No problem, that is what Canadian Tire is good at. Well, not so much. They can put air in it but cannot tell me if the tire is flat from a puncture or something else. They inflated the tire for me; I'll find out if it goes flat again.

While I was in the store I noticed the Christmas supplies already on the shelf. It's officially the Christmas shopping season too! I need a new Christmas tree, and I wanted one of the pre-lit ones, so I purchased a tree. Then I saw the pre-lit garlands and thought how nice one would look on my patio. So one of those went in the basket too, plus a couple of little toys for little grandchildren. I can't resist.

On getting the tree and garland home, my friend Dion put up the garland. Then he went to the basement and got my deck trim lights and front door wreath. He put up the lights and I put up the wreath. My little apartment is now ready for Christmas, only two months ahead of the holiday. This is probably the earliest in my life that I have had my outdoor lights up.

Now all I have to do is put the tree up. I think I might wait a month or so for that.