Of Mice And Men

There's been another article posted on the Internet by another research team presenting another breakthrough in research around treatments for ALS. This article, along with a host of others, presents a picture of incredible developments with fantastic possibilities, raising the hopes of thousands of terminally ill ALS patients, the hope for a treatment, a cure, a tomorrow and a future. The only problem is that so many of the research discoveries are not the hoped for miracle, they are not the hoped for cure.

Today's article is another in an ongoing bombardment of articles announcing a major advance in ALS treatments using a mouse model. In this particular study, researchers "succeeded for the first time in stopping the degeneration and loss of motor neurons and the progression of symptoms of the disease". This is indeed very good news for mice with ALS, however the key line in the article for those of us humans with this dreadful disease is "While this result was achieved with a model mouse, it is thought that a similar molecular mechanism underlies sporadic ALS in human patients..."

Notice that "it is thought" part. The truth is that researchers can cure lots of things in mice that they cannot cure in people. Diabetes springs to mind as one of the examples. They've been able to cure diabetes in mice for some time now and it is only recently that any sort of progress has been made in replicating the result in human studies. They have'd done it yet; there is still no cure for diabetes in humans. The harsh truth is that they just don't know how to make that leap from mice to men.

However, this article is not a lot of smoke and mirrors, nor is it a simple fund raising exercise. One of the greatest challenges in treating neurological disorders of any sort is having treatments which move across the "brain/blood barrier". We have a system in our brain that stops foreign genetic contaminants from transferring from the blood to the brain. This is a good thing as a lot of bad stuff moves through our bodies and we don't want that stuff in our brains. Watch the movie "The Fly" with Jeff Goldblum; you'll see why.

This particular study successfully introduced genetic material into the blood stream and that material crossed the barrier and impacted the genes that are thought to cause ALS in humans, and mice too. It showed that it is indeed possible to target genetic repair, even in cases of sporadic ALS, using a simple injection of genetic material. It paints the picture of a possible cure by doing something as simple as getting a shot at the doctor's office.

This research does not offer a cure, at least not in humans. What it does is show a pathway for delivery of genetic repairs, something that will benefit a great number of diseases. That's a good thing, for both mice and men.

Thank You

This is blog entry number 366. I have a full year of blog entries behind me and have missed only one day, New Year's Eve of 2012. When I started this blog I did not know how impactful it would be, to me and to many others. My intent at first writing was simply to share my life with those around me, to give my family and friends a window through which they could view this process, this march down the pathway of ALS.

My first entry was short, simply an introduction to what was happening to me. When I wrote that first entry on November 28, 2012, I thought it was a simple statement about me having ALS. As I read it now, with a year behind me of struggle and change, I realize that it was in fact a fist of challenge thrown up in the air, a revolutionary salute, defiance flung in the face of destiny. What I did not know then, but know for certain now, was that the first entry in my blog would be my manifesto, my statement of intent.

That statement is truer today than it was 365 days ago. On that first day, I wrote "My simple choice now is what I do with the rest of my life, just like everyone else. My choice is to live with ALS, not to die from it. Of course I will die from something, but today I choose to live." Each day from that moment I have chosen to renew that vow, to raise my fist once again and demand life from the face of death. Each day I have made the personal commitment to move forward and to keep going.

Since that day there have been nearly 60,000 unique page views. There are hundreds of people each day who take the time to share this voyage of discovery with me, so see these new lands and far horizons through that window, filtered by the lens of these words. The bulk of my guests come from Canada and the USA, yet many come from elsewhere. These virtual visitors arrive on my literary doorstep from all across the world, places as diverse as China and Europe, Central Africa and South America, Australia and India.

There have been comments by the hundreds, and not just from my Mom. People have reached out and shared their stories with me by email and on Facebook, followed me on Twitter, shared their lives with me in person and through the ether. To read these statistics, each representing a search for something, a reason for knowing, is to discover that, despite my greatest fears, I will not die alone. I know you are out there. Thank you.

I Wonder

I am regularly touched by the compassion and care shown, not just to me but to many, by PALS in far worse shape than me. At the same time I hear from a great many of them, how their struggle with this awful disease has left them bereft, aimless, wandering in their lives. I hear from them about their joys and pleasures, and I hear of their pain and struggle. Then I wonder why. I don't wonder why they got ALS; nobody knows why we get ALS. I wonder why about a great many other things, but mostly I wonder why they keep going, keep fighting, keep struggling to live a life against these terrible odds and with this horrible affliction.

Where does this will to live come from? This morning I awoke thinking about my own future, about what will happen with Ricky moves out and returns to Vancouver, something he must do eventually; about what will happen when I can no longer hold anything in my left hand and eventually my right hand; about what will happen when I no longer have the money to pay for my truck or apartment; about what will happen when I can't even get out of bed.

Then I got a message from a fellow PALS, a man who has no meaningful movement, a man who is stuck in bed most of the time. He too was wondering why we work so hard to keep going.

The counselling psychologist tells me to focus on today, to focus on living in the moment. When I ask about rent and car and food, he rightly points out that these things happen whether or not I have ALS. The difference is that with ALS I am no longer working, no longer producing wealth but instead consuming it. He points out that my financial situation is good for another year or two, and who knows what might happen in that time. Well, based on all the data and information available, I know what will happen. My condition will deteriorate. I will become more and more physically infirm. I will lose everything and be left a shell. That's what will happen.

Yet today I got out of bed. Today I got dressed. And when my online friend reached out to me I said to him that if I was there we would sit on the couch together, drink a beer, and watch football. He's going to do that today, with family and friends all round him. When I get that far, I wonder where my children will be? I wonder who will be with me? I wonder how I will spend that day?

My Left Arm

Everyone with ALS wants to be the one who beats it, the one who recovers from the muscle loss and destruction of this illness. Everyone wants to live without the wheelchairs, hoyer lifts, bi-paps, trachs and all the other accouterments. Everyone of us wants out of this place, off of this path, away from this progression. I am no different; I live in the foolish hope that something good will happen someday.

It did not happen today.

Over the last few weeks I have been noticing a tiredness in my upper left arm, rather like the tiredness I felt in my legs during the spring of 2011. I've noticed an ache in the muscle, a sort of low grade sense of pull within it. That ache has translated into me doing things just a bit differently, taking a rest when doing heaving lifting, favouring my right hand, using my power chair more willingly. That ache was something I had seen before.

Today I went to the ALS Clinic, something I do every couple of months or so; my last clinic resulted in the warfarin for the blood clot in my left thigh. Over the summer, however, there had been almost no change in my condition. The progression seemed to have slowed and perhaps even stopped. The doctors warned me that this could change just as quickly to progression as it did to pause. They warned me that this dark beast could, and would, rise up again to steal more from me, that it would come and eventually take another part of my life.

I did not want to believe them. I wanted to be that one person, that person for whom the rules of ALS changed. I wanted to be the person who got stuck at lower paralysis, living a vibrant and active life with the upper half of my body, at least for a while. I wanted to be the patient that others talked about, that guy who went on for years and years, without any further progression.

It did not happen today. At the ALS Clinic today we identified that ache in my left bicep as the subtle onset of muscle loss, the beginnings of the beginning, that infinitesimally small initial step down the path leading to a destination I know all too well. Today ALS decided that my left arm was up for grabs, only it is taking from me the ability to grab it. Today I found out for certain that I will not be that one, the one who beats the odds.

How long will it take? I don't know. It took almost 2 years for me to lose my legs completely, but my arms may be different. I don't know. All I know for sure is that my left arm is weaker today than it was yesterday.

A Weird Kind Of Challenge

I bounce back and forth. I have always bounced back and forth, one day feeling like life is amazing and a few days later feeling like it was just wasn't worth the effort. Now, with ALS, that bounce is even more noticeable, more visible, not just to me but to those around me. Mostly I try to cover it up, try to put on a happy face and saccharine my way through the day. Even with all this, if it is not visible to others it is most certainly visible to me.

Today is the wrong side of the bounce, the sad perihelion of my emotional pendulum. Today I am asking myself "Why bother?" Before anyone freaks out, runs to the phone, hops on a bus or posts all kinds of sappy support statements, this is just another curve in the road of my life, and not even a sharp one at that. Everyone has down days; it's just that mine take on a much different, larger, more oppressive hue, richer in blue and black. I have a bloody good reason to be down.

Last night I was online chatting with another Person with ALS. We both agreed in wondering why we kept trying. If you look at it rationally, with no hope for a cure and not even a reasonable treatment, there is no good outcome to this disease and, by and large, a very poor quality of life as one goes through it. Day by day our lives are stolen from us, not as they are from others, in simple aging, but in an ever accelerating downhill slide into decrepitude. Our lives do not simply pass, they race past, leaving our dreams and hopes spinning in the dust like a license plate in a bad movie scene.

It's no wonder we ask the question, "Why bother?" In fact the most amazing thing is that we bother at all. It is the highest testament to the human spirit that those of us with this disease don't simply give up at the first opportunity. I know we all, or almost all, think about it daily, if not hourly, depending on our condition. I, along with many other PALs I talk to, constantly weigh the balance of our lives, wondering if we should continue, living with the pressure of death. Yet onward we go, unable to quench our desire to live and our hope for tomorrow.

I don't know why I bother. I just do. As my online friend said while describing a particularly difficult moment in his day, a day spent hacking up phlegm, unable to moving, trapped in his bed; "...tomorrow there be small beautiful moments, but I just wanted it over during that (difficult) stint... I have this feeling that I have to see it through to the end otherwise I would take myself out. I have no heaven or hell fears, but it feels like a challenge in a weird way."

Chinook

My weekend adventure is over. Once again I am back in my little apartment, looking out over the parking lot and mall across the street. Once again my life has moved from fairy tale to reality, with household chores and busy tasks lined up for me to attend. Once again I am living my daily life having traded the silence of the surrounding forest for the hum of traffic, and the chatter of surrounding friends for the silence of my living room.

It's not that being here is bad. In fact living here in my apartment is a good thing for me. It is well situated for my life needs, well placed in terms of daily activity. The stores I need are across the street or nearby. I can get there with my power wheelchair when necessary. Access to the building is simple and easy, with ready parking at hand and completely undercover, a must have here in Calgary for someone in a wheelchair. Things are alive around me, just differently alive than the woods and trees that I love so.

The scene here is ever changing too. It moves from day to day, snow to sun, blue sky to grey. When the Chinooks roll in over the Rockies, driving warmth before them in westerly winds, causing the temperatures to shoot up from below freezing to almost springlike, the snows melt and the grass shows through. Then, only a day or two later, the snows return and winter is once again ensconced in my world. These changing scenes, the ever moving vista of life around me, once again reminds me that life is a busy, active thing. Like that life, I need to be busy and active.

I need to do something with my life; I am not yet finished with it. I have more to accomplish, more to change, more lives and people to impact. My work here is not yet done, yet the very effort of it wears upon me moreso than one might expect. This disease is aging me early, forcing the impact of failing life forces into me, stealing away my ability to have my body do what my mind would will. Like the forests sleeping under the winter snow, somewhere deep inside me there is yet life. Like the Chinook over the mountain, all it needs is the smallest warmth to bring it forth, to let it be nourished.

ALS steals my Chinook. ALS is winter, never to be followed by spring. ALS is the unchanging, unremitting march of a destiny too soon for me. I am not done yet, no matter what this disease does to me. Listen to me! I am still here!

Perhaps

Sunday brunch is done. Once again the clatter and chatter in the kitchen brings life to the day. Food, central to all human activity, draws us together as we share this time and this place. Topics around the kitchen counter and bar cover everything from how to cut an onion without tears to whether or not the US/Iran Nuclear Treaty makes sense and what Israel might do. As tasks get distributed the conversation focuses, people want to work together, to share what needs to be done, to be with one another.

The sunbeams force their wanton warmth in through the giant easterly faced windows lining the living room, crossing the outer deck, melting the snow and ice on the railings and floor. That same warmth comes in, equally warming the inside wooden floor as the outside, hot enough to create a post-prandial need for sleep. Tonny marches past, checking to see that I am making my "daily update". Elizabeth checks to see if it is acceptable to put garlic in the barbeque ribs. Mike, Dan and Andrea all stand by, ready to take instructions and help where help is needed. Dion extends breakfast with one of the many cookies he made and brought for all to share, wandering out to get more wood for the squat and square woodstove standing beside me.

We know that others will be with us today, friends coming up from Calgary to spend an afternoon or evening eating the more than ample meals we create, watching the Grey Cup, lounging in the hot tub, playing pool, just visiting. It is a kind of gift, this time we get to spend with one another, this time that seems so endless yet so limited. It is largess conferred upon us simply by this place and time, it is a moment bestowed, once given never to be given again.

Outside the cold wind rushes by, shoving the trees to and fro, creating a dance in the forest abounding on these wooded hillsides. Occasionally a door will open as someone comes and goes, letting in a rush of chill soon pushed back by the warmth of the stove, the sun through the window, the people around us. Perhaps this is the greatest warmth of all, to be with those we love, with those who care, with those who will accept us for who we are, where we are, without judgement or measure. Perhaps human warmth is the only true comfort. Perhaps.

This Is What We Do

I awoke this morning to the sound of the phone ringing. It wasn't my phone. I wasn't in my bed. It was before sunrise, dark, a cold orange glow resting deep on the foothills of the Rocky Mountains. This "cabin" where we are spending the weekend is nestled hard against the rising massifs that are the Alberta Rockies. The front faces west, looking at the steep hillside. The back faces east, towards the rising sun, towards that ever brightening glow.

The phone was Anisa, wondering if her boyfriend Dan had finally made it here. The roads out into these hills are bad, especially at night, especially with the fresh, frozen snow rutted into the half mile gravel driveway that leads from the forest service road to eventual arrival. Dan, and Mike, had both arrived in the middle of the night, their disparate schedules converging at the front door of the cabin, deep in the night's darkness.

I managed to sleep through the noise of their arrival, yet the phone woke me to wonder where they were. Brad told me the vehicles were here, so should they be. As I arose the sun glow over the foothills slowly began to merge from orange gold to sunny blue with a far and distant wisp of cloud. Slowly, noisily, chatting and clattering, we arose from our various bedrooms and sleeping spots to cluster around the kitchen island, strengthening our morning with coffee, girding ourselves for our day of doing little but rest and spending time together.

The kitchen always seems to be the centre of our gatherings. We cling together around the preparing, cooking, eating, cleaning. We talk, subjects ranging from cultural differences to language to work to intense personal issues. We stumble about in our morning weakness, bouncing off each other until that first globule of morning's dark nectar is ingested, swallowed deep into waiting, caffeine surging into us, awakening us.

Breakfast is a team affair. Some get, some prepare, some cook, some do the wise thing and just stay out of the way, smelling the sweet smoke of bacon and sausage, sensing the feast which starts our day. We are together as only we can be, smiling and teasing, compassionate and caring.

This is what we do.

All I Need Is About $20,000

I'm going away this weekend. I, along a bunch of my friends, have rented a cabin in the woods for the weekend, starting Friday night and coming home Monday morning. When I say cabin, I don't mean all rustic and stuff. When I say cabin, I mean a 5,000 square foot log home with a 10 person hot tub and 9 person steam shower, a theatre room with a gigantic screen, a massive kitchen and fireplaces every where. This cabin has three massive bedrooms, a dorm room over the garage and an observatory up the hill in a separate, smaller building. But we call it "the cabin".

It's not very often in our lives that we ordinary folk get to live like those who are perhaps a bit better off than we. Most of our lives are spent within the limitations of our abilities, within the financial, social and personal boundaries that frame our daily existence. Our lives are mostly what they are, with the regular routine of work, family, and when possible, play.

My life is different these days. Certainly I work a bit, but not enough to say I "work". Certainly I have things I must do and places I must be. Yet within that framework I find myself more and more looking at the unusual things I want to do. It's not so much a bucket list, but ideas that float past; ideas where I see them and grab them like a child grabbing a candy from the table. I snatch at them, perhaps a little too excitedly, wanting the difference in them to separate my life from that which is ordinary.

The cabin is a good example of this. We started doing this last year, with me booking it well before I was diagnosed. Unfortunately it became a milestone, a marker event for my ALS. Now the cabin celebrates the anniversary of my diagnosis, at least in my mind. Yet even so, it will be a fun weekend. I will spend it with friends, eating and drinking, laughing and talking, playing and resting. It's the kind of weekend that we all need, something different.

For my next adventure, I think a sailing trip on a Tall Ship will work (http://jst.org.uk/). All I will need is time, and about $20,000.

It's Time To Put On Pants

It's an odd day today, one of those days where I have little to write or say. I am still inside, calm and rested. I have a few things to do, some online and some offline. Overall I am in a kind of stasis, unmoving. I am so lazy I haven't even gotten dressed yet. I don't mind, it's good to be in this place.

Even the weather is in the place. The sky outside is a serene azure, unbroken by cloud. The tree is still, no wind blows to disturb the crusting of snow that has built up over the last week. The light on the pedestrian sign for the crosswalk below me blinks in a steady rhythm. There is almost no sound from the street; the loudest noise in my apartment is the ticking clock on the wall behind me.

It's as if I am in an emotional or psychic lifeboat, adrift in a vast sea, surrounded by nothing but calm blue ocean, a flat changeless plane of unfeelable ripples that drift by on a relentless tide. I do nothing to affect that tide; I do nothing to affect myself within that tide. The only effect is slow motion; like driftwood, I ride along unknowing as to my direction or destination, taken by a whirl of water here or there, without steering or rudder.

My day is not pointless; there are things to do. Yet I feel no urgency to do them. If I accomplish, then I accomplish. If I spend my day without accomplishment, it will still be a good day. I am alive, thinking, feeling, wondering. I need no other nourishment for my spirit.

BREAK!

It's almost time for Ricky to come home for lunch. He works across the street at Toys 'R US and comes home almost every day to make a quick hot lunch. I don't need to have him come in and see me sitting around in my underwear, looking for all the world like a patient in need of care. I rush to put on my jeans and socks.

Wearing pants changes your point of view. I can see why a great many people like to sit around semi-dressed. It is a defiance, a statement of limitations. Once enrobed, however, my attitude changes. Now it's time to get serious about my day. There is something about getting dressed that leads on to the next, more productive step in life. That's why I do it every day.

I Am Living With ALS

It's been a year now, a year since the neurologist uttered the three letters to me that changed my life forever. A year ago today, I was diagnosed with ALS. I could still walk then. I didn't need the wheelchairs they insisted on using in the hospital. I did need my cane, and would still need it for a few weeks. After that, the wheelchair.

It was the first event of the day that really got me going. The night before I had been visited by the on-call neurologist. It was daytime now, and a hoard of doctors descended upon me before I had finished the meagre hospital breakfast, even before Dion brought me a Timmies. There were four of them, all deeply interested in my situation. Beware when doctors arrive in a herd; it spells trouble. After inspecting my legs carefully, plus asking me about a million questions, the departmental head of Neurology, along with the resident neurologist, plus a couple of other interns, informed me that I needed more tests.

The day itself was a blur of tests and machines. While still in the ER Ambulatory Chairs I was taken for an MRI, a full body MRI that took over 90 minutes, during which time I was firmly admonished to refrain from any motion lest the MRI image turn out fuzzy. My head refused with the expected fuzzy outcome. They did my head twice just to be sure.

After the MRI, I finally managed to get my Timmies, cold as it was by then. The nurse came and took about a litre of blood in about eight different vials. Then I was transferred upstairs to the neurology ward. There was a certain irony in my room placement; from the window I could see the roof of my apartment, a place I definitely would rather have been. On the plus side, Dion smuggled in some scotch for me, so at least I could have my evening sip before bed. When they eventually found out, the hospital staff was not impressed.

I don't remember much of the afternoon. There were more tests, the kind where they shove long needles into your body to see if your nerves work. I remember those; they hurt. Mostly there was waiting time, waiting to see what the results would be.

Then, while David and Elizabeth were visiting me after their work day, the resident neurologist came in to talk. She said we had to talk about my diagnosis; I said David and Elizabeth could stay. They were an incredible support to me, not just that day but for many days since. After a short preamble about my symptoms, she said "We think you have ALS."

On hearing the verdict, David slumped back into the wall and Elizabeth sat there, silent. I went into what I call my "business mode". The emotions would come, and they surely have come. But at that time I wanted the facts and figures.

"How sure are you?"

"About 90%. We have to do a few more tests to get more certain, but we are pretty sure."

"How often are you wrong?"

"Not very often. Less than 1% of the time. We haven't been wrong in a long time."

"How long do I have?"

"Probably about 36 months."

A lot more was asked and said, but that's the heart of the matter. I have ALS. It's been twelve months since that day. I am still living, still living with ALS. Nobody knows the number of their days, not even me, but I am fairly sure it will be longer than expected and shorter than hoped for. Here I am, living with ALS.

ER

It was to be my last day of freedom; I didn't know it. It was to be my last day of living a so-called normal life; I didn't know it. It was to be the last day where I could live with a dream of a future, the hope of many tomorrows, the wish to build a life and live it. On this day, one year ago, I got hit by the bus, the bus called ALS, only I didn't know it.

That Monday was a regular day, a routine filled day. Just as with so many days before, but not so many since, I got up, went to the bathroom, had a shower and got dressed. I made my morning coffee and checked my personal email on my laptop before going to work. Only already I had seen a difference in my body, and in my lifestyle. Already I was having enough trouble that I had gotten a handicapped tag. Presciently, the doctor decided to apply for a long term tag rather than a short term tag; I think he might have had his suspicions already but was not willing to say. That was the job of a neurologist.

My plan for the day was simple; go to work and then, on the way home, stop at Foothills Hospital Emergency Ward to get them to check me out. I was pretty sure it would be a short stay. In fact while I had told my boss at work what was happening, I had only suggested I might be there for a day or so while they did tests. In reality I didn't even expect to lose a day at work.

I left work early to get ahead of the rush. It didn't help; the Emergency Ward was full to bursting. The duty nurse warned me it would be a long wait, as they had a number of urgent trauma cases that had come in and life in the ER was a busy one. So I waited, from 4:00 PM to 9:00 PM. At 9:00 PM the intern saw me. He didn't really know what it was but was fairly sure it was neurological. I am guessing that ER interns don't see a lot of ALS.

The ER intern ordered blood tests, the first of many, and called the on-call neurologist. They warned me that it might take a few hours for the neurologist to show up, but then, suddenly, there he was. That should have been a warning to me. He poked, he prodded, he asked me all kinds of questions. Then he said I would need to have a full body MRI plus some additional X-Rays. To get all this, I would have to stay in the hospital overnight. So I got a comfy lazy-boy chair in the ambulatory waiting space.

My friend Anisa brought me some snacks. My friend Dion took my truck home for me. Other friends dropped by, but eventually everyone went home and it became a long night of waiting, waiting for the morning tests, waiting for what was to become the first day of the rest of my life.

The Calm Before

One year ago today, November 18th fell on a Sunday, the Sunday of the CFL Division Finals. The Western Division game was between the Calgary Stampeders and the BC Lions. Notwithstanding that I now live in Calgary, I will always be a BC fan. I still cheer for the Lions and Canucks first. I had my supplies for the game and had a guest coming over to watch the game with me.

My guest was a woman I had met only once. We liked each other, and still do a year later although our relationship has definitely changed. This year has had an impact on all of my relationships, new and old. She was coming over to watch the game with me, so that we could get to know one another. It was to be a fun afternoon with her cheering for Calgary and me cheering for BC.

But I knew something, something she did not know. By this time I had come to realize that there was something seriously wrong with my health, that my slow loss of my ability to walk was probably not related to my back injury, but was probably something much more serious. The doctors had already hinted thus, but my fall the day before had told me a lot more than any doctor so far.

Not wanting to keep this a secret, I told my friend right away that this "back problem" may be a lot more serious than I originally thought. I told her she had a "get out of jail free card", so that when the going got tough, she had the freedom to go. She didn't go, at least not right away. That "get out of jail free card" was to be used, but much later, after a lot of things became clear. She stuck around during the tough stuff, something I will ever appreciate.

The tough stuff was yet to come, tomorrow. This was to be a pleasant Sunday afternoon, typical for Calgary, cold and clear, snow on the ground, a light wind whirling round. This was a calm day, a day for fun and laughter, to watch the game. This was the calm before.

My team lost that day, a harbinger of the days that were to come. I've lost a lot since then, not the least of which is the use of my legs. There have not been a lot of calm days since that day; it's been a bit of a storm.

One Year Ago Today, I Fell

November 17, 2012. Exactly one year ago today. This is an important date, the start of a week that will be locked in my memory until the day I die. This is the day it all began, sort of. This is the day that my path in life bent firmly towards its current direction. This is the day when I started to realize something was seriously wrong with me, something that had to be discovered and fixed. Except the only discovery I was to make is that there was no fix, no repair, no recovery.

It was a Saturday last year, this date in history. I was out shopping at Costco. The CFL Semi-Finals were to happen on Sunday and I had someone coming over to watch the game with me. Supplies were required; Costco was my intended source. So I got up, dressed, drove my truck over to Costco and went shopping.

I was still walking then, albeit with a cane. Stairs had started to become a problem, as were ramps and pretty much any upslope in the sidewalk. Costco has a flat parking lot, a flat entry and a flat floor, so nothing seemed all that out of place. I went in, got a cart, and did my shopping. No big deal, just grab a few things, pay, and head back out to the truck.

It was on the way to the truck when it happened. I fell. I fell hard. I fell hard even though I had the cane to keep my upright, to support my failing legs. I fell hard enough that people around me heard me bash into my truck and heard my cane clatter to the ground. Several people came rushing over to see if I was okay. I was fine, but not very happy with myself. I used the truck's running board to get up. I dusted myself off. I got in the truck and went home, shaken, scared.

Falling down with the cane was the last straw for me. I had already fallen several times without the cane. I knew I was in some sort of trouble and I knew I had to find out what it was. The Neurology Clinic in Calgary had told me I wasn't a High Priority since I wasn't suffering any pain. In a way they were correct; regardless of any priority, there was nothing they could have done. I talked to my doctor and he suggested that the best way for me to get seen was to go to a hospital Emergency Ward, and there demand to see a doctor.

So I made a decision. I decided that on Monday after work I would go into the Emergency Ward at Foothills Hospital here in Calgary, to get someone to look at me. My doctor had told me that I should "go into emerg, fall down and pee my pants. They have to treat you." I was pretty sure I wouldn't need all the histrionics, but I knew it was time to take serious action and find out why I was falling down.

One year ago today, I started down this path. I fell.

I Continue

It's white outside my window. The wind is rushing by, carrying the tiny, dry flakes of snow on a wind-whipped journey. They dance a strange and strained ballet, rising and falling, twisting and turning, forwards and back. They move about madly, pas de deux and pirouette, cabriole and jeté, leaping agile onto my patio, clinging desperately to my window sill until the wind once again whips them away before the cold can freeze them on the glass. Once again the traffic is quiet; people don't like to drive in this weather yet there continue to be hardy souls afoot, traipsing through the cold and wind to the stores across the street.

I can feel the melancholy settling in as I sit here this morning. It started last night as I sat alone eating my dinner, wondering why I even bother to make something so nice when the only person here is me. Ricky divides his life into two spheres, work and his bedroom. His emergence from solitude only occurs, grudgingly, when he has to engage in some from of household task, or when he has to go to work. At times I will ask him to do something and he will say "That sounds like something you can do on your own". I am not sure if he does this to stop me from getting lazy or because he is lazy. Either way, I continue to do much on my own.

Most times I eat alone, with the exception being those days when I have company. I enjoy those days. When I am alone I begin to think about things, usually not good things. I think about the future, I dwell on the past. I ask myself what I did wrong, how I ended up in this place, this existence. I wonder why she got to be happy and I did not. I wonder why I worked so hard to end up with so little. Even reminding myself of what a terrific life I have had does not lessen the sadness when I look upon myself today. It wasn't supposed to be this way yet I continue to eat, to work, to think.

I go to sleep alone. There in my bed, at 2:00 AM, I awaken to feel the nothingness and anxiety that continually abides within me. I am empty. I have poured out my life to do what I thought was right, yet I was wrong. There is nothing right in making yourself unhappy so another can be happy. There is no right in giving in to emotional tyranny, abdicating in the face of intransigence, leaving rather than fighting. At 2:00 AM, when I awaken, there is nobody there to help me see that there are better things out there, happier times out there, warmth and joy out there. All I see is the cold, bleak snows that whip by my window. I force myself back to sleep, to continue in slumber.

With all this, I continue. In the face of failure, I continue. With the loss of my legs, I continue. With the loss of my future, I continue. With this overwhelming sense of the stupidity and pointlessness of it all, I continue. Even with this cold winter wind, I continue.

I Want To Live Forever

A woman in the Facebook ALS forum for PALS only passed away today. This is not unusual, it happens almost every day. This is a disease where people die at a consistent and alarming rate. Yet somewere every day someone, and a great many someones, die from something. It is the nature of life that we will all leave it. As a woman I was speaking with at dinner last night said, "It's going to happen to all of us. You, those of you with ALS, just get a head start". Her husband could not make dinner; his head start had left him too tired to come out.

It's odd in a way. I can intellectualize my own death. I know that it is a fact, that I will die, almost certainly "before my time". That begs the question. Who decides when it is time? That very randomness, that none of us truly knows the number of our days, allows us to play a special kind of game in our head when it comes to contemplating the end of our life.

Here is an experiment. Say to yourself "Everybody dies". I will bet you a couple of things happened. First of all, I will bet that somewhere in your lizard brain, in the deep, dark recesses of your cranium, your brain actually said "Everybody dies, except me." Then I bet you had an intellectual argument with yourself where your rational brain said, "No, me too." For some of you I will bet your rational brain and your lizard brain got into quite a tussle.

No matter how old we are, no matter how infirm we are, we do not want to believe in our imminent demise. The thought of our own death is so antithetical to our life process, that we simply cannot believe that this reality applies to us as well as everyone else. I still believe I am not going to die, at least not today. I want to believe, and I am working hard to believe, that I will live a long, long life.

The worst days of this illness were the first days of this illness, after diagnosis. In those days the ability to deny fate was ripped away from me. It has taken many months to rebuild this logical fallacy, this brick façade against death, and rebuild it I must. For without the belief in life, all I would have is the certainty of death. With that certainty so obvious, why wait?

It is this very ability to lie to ourselves that keeps each and every one of use alive. Without the belief in life, there would be only death. I, for one, don't want to live that way. I prefer to believe I am going to live forever.

Just A Little Blood Spot

It's one of those days here in Calgary, those days where the warm air rolls up over the Rockies, settling in on the wintery countryside. The snow is mostly melted, my tree is relieved of its ice covering and the sounds of dry roadway rise up from the traffic below. It will be warm today, perhaps warmer than most of the rest of the country. It is called a Chinook when this warm air comes a-calling. The locals have turned it into a verb; they say it's "chinooking out". It's the kind of weather where people get nosebleeds, at least some people.

I am getting my blood taken again today for my regular blood clotting tests. This is a result of the warfarin I am taking. The warfarin is a result of the blood clot in my left femoral vein, where my leg joins the trunk of my body. The blood clot is a result of sitting all day in my wheelchair. Sitting in my wheelchair is a result of having lost all muscle control in my legs, or almost all of it. The muscle loss is a result of ALS. There is a very well connected causative chain here, not that knowing it does me any good at all.

This whole ALS and wheelchair thing has lots of other little impacts, some extremely personal and almost embarrassing in their result. It's not that I am ashamed of my failing body, but to disclose it will make me seem even worse off and weaker than I feel. These days I have enough going against me; I don't need to publish those things that make it seem worse. Yet here I go.

There are a few things I will share, things that are kind of personal but you wouldn't ever see them unless I told you. For example, bleeding. When you take warfarin they warn you to watch out for any bleeding, especially nasal, urinary, or rectal bleeding. A nose bleed is obvious but those suckers can really pump out a lot of blood. The initial warning they gave me was that if I bled more than a bowl full, I should get to the hospital right away. So far, no nose bleeds. Chinooks don't seem to do it to me.

Bleeding from the other end of ones body is more serious. Actually there is a serious kind and a not so serious kind. They tell you to watch for blood in your urine or stool. So every trip to the toilet is an inspectionary adventure. I have to check. The reason the doctors worry so much about this kind of blood showing up is that it most likely represents some sort of internal bleeding, such as an ulcer, something that the body might cover up and something that would be exacerbated by the warfarin. So far, no blood in either alblutionary element.

On the other hand there is the less serious kind of bleeding. Almost all of us have some sort of rectal fissures, polyps or hemorrhoids. These little lesions like to bleed every once in a while. In most of us, we won't even see it as our body closes these pinhole leaks very quickly. Warfarin makes them close not so quick, so you end up with visible blood spots in your underwear. It's not enough to call the doctor, but you see it and you worry. Women must be used to this kind of thing; it's a new experience for me.

The other blood spot is a male only issue; it's extremely small blood blisters on your testicle and penis. This happens to most men but these blisters are so small we don't even notice them. They typically occur because of "overly enthusiastic sexual activity", sports activity that impacts the groin, or just plain tight pants. These pinhead blisters rise up and are reabsorbed back into the body, unseen and unnoticed in most cases. Except when you are on warfarin they can get larger and will sometimes break open. I haven't had to worry about any of the causative events so much lately, so I haven't had to deal with this outcome, at least not so far. But a fellow can always hope, can't he?

I Awoke This Morning

I awoke this morning, thinking about how warm and comfortable I was under my quilt, the one my Mom and her quilting friends have made for me in a sailing motif, all with varied panels showing boats and the ocean in so many shades of beautiful blue. As I lay there I found myself wishing that there was someone in my life who would bring me toast and coffee while I lie abed, not because I deserve it or have earned it, but simply because that person felt I was special enough to care about and to care for, special enough that they would do something nice for me for no reason other than they wanted to. It's been a very long time since I have had a person like that in my life, someone who was nice to me just because they cared, someone who wanted to out of love for me, without expectation or return.

I awoke this morning, thinking about yeast infections. Last night while at Trivia, someone spilled a glass of beer and it all ended up in my lap. I was in the line of fire and unable to move as the flood of gold flowed across the table and on to me. My crotch and upper legs were completely soaked in beer. I had to transfer to another chair while my wheelchair dried. My pants were still wet when I got home. The problem is that, with my atrophied upper leg muscles folding into one another, my groin does not dry out all that well. It is almost constantly moist from sweat, and beer has yeast in it. On the plus side, someone else spilled the beer. It would appear that not all clumsiness is ALS related.

I awoke this morning, thinking it was Thursday. This happens at times. I lose my sense of calendar and am compelled to look at the rhythm of my life for cues as to what day it is. It took a few minutes for me to remember that last night was Trivia Night and that happens on Tuesday so this must be Wednesday. It sounds odd to completely lose a day like that; I know it happens to other people too. We all become disoriented in our lives now and again.

I awoke this morning. Perhaps this is the most important thing of all. I awoke this morning. I get to live another day, watch the birds fly in and out of the tree in front of my window, hear the sound of people on the streets below, smell the coffee beside me, do my laundry, work on my work. I awoke this morning.

3:00 AM

I spilled my coffee this morning; not much of it, just enough to stain my pants and a spot on the wall, just enough to need cleanup on Aisle 6, just enough to make me wonder why. I know that spilling a bit of coffee might not seem like much to most people. I realize it happens to all of us sometimes. I know I could put a bit less in the cup. I know all of these things yet I worry and wonder.

That's part of the real challenge of this disease. You just don't know what is happening or how. You know that something is happening; it always happens. You know that the disease never really goes away, never really stops, even when it slows down. So you live your life in suspicion, in fear, dreading the next thing, the next event, the next step in the process. You live your life waiting.

It happens all the time, this anxious waiting and watching, this fearful expectation. I woke up in the middle of the night last night, worrying about what would happen to me. It happens often. I was unable to get back to sleep as I contemplated the dire financial and physical events that would likely transpire as I move towards the end of my life. It is at times like these that suicide seems a reasonable option. If you think differently, go into a hospital and meet some people who are at the end stage of this dreadful disease.

That end stage is what I think about at 3:00 AM as I lie alone in my bed, flopping my dead legs back and forth as I adjust, trying to will myself back to sleep. Last night it only took about 2 hours to finally get there; the last time I looked at the clock it said 5:00 AM. When I next awoke it said 8:00 AM. The thoughts that I went to sleep with are the thoughts that arose within me on waking.

So I spilled my coffee. So what? If you don't have ALS, you get to dismiss it as any number of things. I have ALS; one thing looms above all others. It takes real work and effort to think of something else. My disease is the largest thing in my life; it has the largest impact on all I do. It is a burden that I bear alone, when I wake up at 3:00 AM and think about things.

I Hate War

I hate war. I hate its waste and wanton destruction. I hate the loss of lives, of futures, of potentials. I hate the callous cynicism with which old men cast away the lives of young men in causes truly known only by the few, those who hold and seek to continue to hold power. I hate the economic and social destruction wrought by the violent nature of mankind, by our willingness to destroy and be destroyed in the name of something we often know nought of.

We are a bellicose species. Since the beginning of mankind we have fought one another, one on one, in small groups, and in larger groups all the way up to global conflagration. We seem to need this conflict amongst us in spite of our ever present desire for peace. It is not all of us who seek to say "I love it. God help me I do love it so. I love it more than my life", as attributed to Patton in the dialog of the move of the same name. Many of us, me included, abhor it. My father once said to me that the most ardent pacifist is the soldier in a foxhole. Yet still we fight, still we take up arms and do battle.

War is good for business. In fact the US economy rises and falls on the spending of the US military. But in this spending lies its own destruction, for this economy steals from so many other things. Even great military leaders have had to deal with the costs of war. It was Dwight D. Eisenhower who said, some 60 years ago, after the end of the war in which he was Supreme Allied Commander, "Every gun that is made, every warship launched, every rocket fired signifies in the final sense a theft from those who hunger and are not fed, those who are cold and are not clothed. . . . This world in arms is not spending money alone; it is spending the sweat of its laborers, the genius of its scientists, the hopes of its children. . . . This is not a way of life at all in any true sense."

George Techumseh Sherman, on his march to Atlanta said "War is hell". Yet fight he did, and in destruction, victory. Why do we glory the men of war and not the men of peace? Why do we hold days of memorial for those who died fighting and not for those who died as victims of the fight? Why do we not idolize those who serve without conflict, in a passion for peace. Where are their quotes? Where are their movies? Perhaps it is that we, as a species, love the fight, love the fighter, and place the victor on a pedestal.

There is no such thing as a good war, a just war. All war is bad, unjust, unfair. The best I can come up with is that war is inevitable. We just do it. So today, as I join the rest of Canada in Remembrance Day, I will remember not only my great-grandfathers, grandfathers, father, brothers, and nephew, all of whom have served in arms, I will also remember those whose first efforts were of peace. I will remember those who served, not just in war, but in the aid of mankind. I will remember Ghandi and Mother Teresa. I will remember Jesus and Buddha. I will remember Lech Walesa and Martin Luther King Jr. I will pray for peace, acknowledge war, and live in hope.

A Long Day

It snowed last night, a soft and gentle dusting, light and dry, just deep enough to muffle the sounds of cars rolling by on the street out front my apartment. I cannot hear the traffic, the sound softened by this thin, white blanket. There are small flakes drifting yet by my window, settling on the fir tree, giving it a frosted edge. The sky on the horizon is a dull white, filled with the promise of more of this light winter precipitation.

I am sitting quietly in my living room, thinking, resting. Yesterday was a long and busy day with an early start and a late finish. I started the day in the kitchen, after, of course, my normal wakening routine. I was making a lasagna on behalf of the ALS Society of Alberta, to serve to a crew of volunteers working to help a fellow ALS patient in clearing a house and preparing it for renovations. I cannot do this work, but I can sure cook up a storm, so I made the lasagna along with a jumbo-sized spinach salad. Then, at 11:00 I got a call that the work was done already and my mealtime ministrations were unneeded.

This was not a problem; in reality it was a good thing for me. I was planning a wine bottling party that night; instead of my plan for making chili in the slow cooker, my guests would have lasagna. So I finished the cooking, the salad making, the general preparations and set them aside for the evening, whereupon I went out with a friend to get wine bottles and to have a coffee.

The day wore on, I returned to my apartment and began to tidy so that my friends would arrive in a clean home, to eat a great meal and to help me bottle my wine. All was at the ready. There was food. There was wine, there were guests, all bringing their own contributions. The guests began to arrive and we all enjoyed a terrific dinner with lasagna, pasta salad from Brad, spinach dip from Dan, and desserts all from Elizabeth, Andrea, Melissa and Anisa. Myra brought chips and, very generously, a great bottle of Grey Goose Vodka from which a chocolate martini almost immediately emerged.

After we ate a great dinner we started to get ready for wine bottling; dessert was to come later. Brad asked for filters for the wine filtering system. Oops, I had forgot them. No worries, bottling wine without filtering it is more the norm than the exception. I am fussy that way, but I am also in the minority, so no filtering would happen. We sanitized the bottles and at that very moment I realized I had also forgotten to buy corks!

There would be no wine bottling. So we sat, ate dessert, talked, watched hockey and enjoyed the company of one another. As the evening wore on, exhaustion set in. My feet and legs began to hurt, becoming uncomfortable from a day of activity and yet from a day of being constantly seated. The gang did an amazing job of cleaning up; I rested. When everyone went home, around 11:00 PM, I immediately went to bed and slept until 9:00 AM this morning.

I think I was tired. It was a long day.

I Believe

I believe in God. There, I said it. I believe in God; there, I said it again. Not that it really bears repeating but I know some people wonder what I believe in and why. I have to say that I have no good reason to believe in God. There is no scientific evidence to support the existence of God, at least none that I am willing to accept as authoritative. It is simply what I believe; it is faith without reason.

On the other hand it is important to me that I make something perfectly clear. I do not believe in a string pulling God; I do not believe in an interventionist God. I am grateful for what I have been given but the vagaries of life and the universe are sufficient that I am convinced there is no great hand in all things. I am sorry for the harms I have caused but there is no objective reason for me to believe that seeking forgiveness from anyone other than the person I have harmed has any value whatsoever.

My belief is simply for myself, it serves my spirit and soul to believe. I think this is true for a great many people, that they believe in what they believe because it meets their needs. Even those who rail against my belief in God, even those who insist there is nothing out there, by their very statements as either non-theists or anti-theists, with their very actions they evidence a belief set. It's just different than mine. That's the beauty of this life; they get to believe what they want to believe and I get to believe what I want to believe.

Just as I expect others to allow me my beliefs, I am compelled to allow others the same. Recently while out in a group, one of the people there began to talk about working as a "therapist". She works with people's "auras" and the "energy around their organs", "aligning their energies and helping with healing". As much as I find this stuff ridiculous, I know for a fact that some of my friends find my belief in God to be equally ridiculous. I neither dismissed it nor shared my view. I simply allowed someone else to have their beliefs.

Whether you believe in God, energy, pyramids, crystals or some bizarre set of universal laws, we live in an age where you have the right to that belief. We don't have the right to insist that others have our beliefs, nor do we have the right to treat others badly because they don't share our beliefs. Proselytize if you wish, but don't punish for non-conversion. If I believe in anything, other than God, I believe in respect, and I am glad to live in a time, place and country where that is not only the norm, but expected.

Giving Time

I like to help out. I have been known to volunteer for all kinds of things, sometimes things where my help is questionable but most often where I can truly be of use. I believe it is important to help others. Research has shown that people who help others are happier, healthier and enjoy life more. Helping others helps me.

It's not about giving money. In fact I see giving money as a lazy way out and wonder if the money I give really makes a difference, especially where I do not see the cause in or around me. I see the infomercials and advertisements on the television for international aid and ask myself how much of the money given actually gets to those featured in the ads, how much it costs to produce this TV spectacular. I see posters on buses and billboards, begging me for more and more donations, driving donation fatigue to the point where any request for aid is drummed out by the surrounding noise of media mendication. Begging has become big business, delivering its demands in every arena of communication.

Charity is the living practice of giving of oneself and caring for others. It is an active event,  the "doing" of something. Financial gifts are certainly a part of charity, but is it really charity when you simply drop some money into a kettle as you walk into the mall? Is it really charity when you send your cheque off to some nameless, faceless organization dedicated to saving this or stopping that or changing something else?

Charity should be intimate; it should be self-impacting. Charity is best delivered up close and personal. Charity is giving of your tithes and talents. In other words you cannot simply buy off the problems of the world by signing a pledge form. If you really want to make a difference, make it personal. Do something that takes time, that takes away your time and gives it to others.

Charity is not the big act, the giant, media sized poster cheque ideal for newspaper publication. True charity is the small personal act; taking a meal to someone who lives alone, giving your new coat to a man who has no coat at all, helping where no help is requested by much help is needed. Certainly the larger causes matter, the cancer campaigns, the ALS fund raisers. Yet to really give to them, I believe that your time is as important as your money, perhaps moreso. Money is easy, time is hard.

The best things I have ever done have been when I have taken time out of my schedule and life, and given that time to others, when I have given of myself. The best gifts I have to give are those that impact me when I give them, those that make me wince a bit. The best gift I have to give is the gift of my time; I don't have a lot of it, nor does anyone else.

Bathroom Gymnastics

I am back on my rant about how stuff that should be simple for me, had I working legs, has become both complicated and in many cases, exhausting. Using the toilet is one of these activities. This is something we all take for granted, the moment of peace when we sit to relax, doing what nature calls us to do. Living in a wheelchair makes that much more difficult.

First of all, my wheelchair does not fit easily into my bathroom. This is first on our renovation list but for now it continues to challenge me. What I have to do, before I even get to the Promised Land, is remove the front feet off of my wheelchair, a simple task. Without those feet in place my wheelchair can make the sharp turn and enter the bathroom. However it also means my dead legs simply drag on the carpet under my wheelchair, grabbing the floor, impeding the process. So I have to nudge my chair forward, lifting my feet forward in emulation of what once was a natural walking process, only seated.

Once I make the turn into the bathroom and force my chair through the narrow doorway, I can slide my feet along the linoleum in the bathroom. It's a short distance and a relief in anticipation of the relief to come. Once in the bathroom I line up my chair with the toilet, allowing for a safe transfer from the seat of support to the seat of expulsion. Once on the toilet seat, I can remove my pants and underwear, hopefully not dragging any part sufficiently low as to achieve unintended dampness from the water below, now clean but soon not to be.

Taking off your pants and underwear while seated on the toilet is a real challenge. Try it; you won't like it. It means wiggling from side to side, using the counter and the chair to ensure I don't slide off the seat, and removing the offending articles of clothing about an inch or two at a time, one side first and then the other. Once the pants and underwear reach apogee, the front of the seat, it gets easier.

Then comes the physical adjustment of my legs. You can't just sit where you sit; adjustments must be made. In my case my legs don't work so the muscles must be manually moved, placed in appropriate position to allow for the following act. Once all is adjusted, action takes place. This is the easy part, the most normal part. Cleaning up is a challenge but I get there, with some fair bit of effort. Once again, try it; you won't like it. Once complete, I flush so as to have clean water beneath me for the ensuing activities.

Now comes the putting on part. The initial emplacement of pants and underwear is not without its challenge. The most common impediment is when the articles in question snag on the front of the toilet seat, deftly sliding under when you are attempting to slide them upwards. Suddenly you find yourself not only sitting on the seat, but trapping your pants under the seat, as you had lifted to make the initial adjustment. So, pushing and pulling, I move the pants back downward and try again. I usually get it on the second try, but often on the first as well.

Once my pants and underwear are positioned, I once again rock from side to side, inching them upwards as far as possible while attempting to adjust for comfort along the way. Having your underwear pulled deep into your butt crack makes for substantial discomfort as the day wears on. It usually takes 8 to 10 side-by-side shifts to accomplish what used to be accomplished simply by standing and pulling upwards.

Once my pants are on, or at least reasonably on, I then re-position the now displaced wheelchair and attempt the transfer. A sideways transfer is difficult, especially with the required upwards lift, as the toilet is lower than the chair. All of this takes place after the effort and wear of getting on, getting de-panted, getting positioned, getting abluted, and finally getting re-panted. By the time this is done, so am I!

Then comes the final act, the final gymnastic effort. I back out of the bathroom making the tight turn into the the hallway, all the while lifting my legs up so they can clear the door and so they don't drag on the carpet. Once in the hallway, on the edge of completely done, I have to pick up my wheelchair feet from the floor, re-insert them into the chair and re-position my feet. Once complete, so am I.

I don't think I need an workout routine for my arms. All I need to do is complete my morning bathroom gymnastics.

My Pace

Snow has arrived in the high county, the Okanagan and Shuswap Highlands, home of the deer and moose, sleeping place of the bear, land of the spawning salmon. The round-topped mountains of the Monashees are wreathed in low slung cloud, threatening snow and delivering that cold mix of sleet that soaks to the bone here in the place of early winter. These are lands of mystery when the path of the sun has well passed the autumnal equinox and heads to winter solstice, hidden by deep snow and ice, protected from most of mankind, except for the hardiest of loggers and road builders.

My life has a different rhythm these days. Mornings are not an accelerated rush to the door, slamming into the truck and flinging myself at a cold, wet highway. It takes time for me to be ready, more time than a young person might expect. Certainly the older you get the longer mornings take. This is true for me even though I would not yet commit myself to aged and infirm. No matter where I am these days, I take my time in rising, not out of pleasure but necessity. I just takes me longer these days.

The road awaits me. The mountains will not move. The rain will stop but not for me, not simply because I am ready to go. All that is will continue on, whether or not I hurry myself or do things in what time it takes. Hurry is a game that takes too much time. Doing what needs as it needs, in a pace respecting that what which must be done, this is the way my days will go as I move my life forward.

This does not mean, not by any stretch of anyone's wildest thoughts, that I will not heed to excitement or anxious want, that I will delay with no plan or rationale. It does not mean I do not desire to move at a pace that must be kept. It means I have an increased respect for time, for the use of it and the loss of it. The moments needed to craft a word, to vision a phrase, these are the moments I have come to respect.

Today we, Kate and I, will drive through the mountains, starting in Sicamous, so named by the local natives because it is the place where "the river is squeezed between the mountains". It is where the Shuswap River snakes its way out of the upper Okanagan Valley and into Shuswap Lake. From here we will head east as ever I have done before, through the mountain ramparts, the cracks and crags, passing the heights, into the valley of the Bow and out to the cold, windy plains of Alberta. Then I will be home, at a reasonable pace, at my pace.

Wheelchair Camping

I have abandoned hunting camp to sneak down into town for an hour or two. There are three reasons for deserting all that is moose and deer to me. I wanted to check on how my Mom was doing and am happy to say she is well and headed home. She has had an angioplasty and two stents and they are discharging her as I type this blog. I wanted to write my blog, a self-evident event. And I wanted to use the bathroom at Starbucks, as every Starbucks I have ever been in has a wheelchair accessible washroom.

You see, of all the things they have provisioned for me in our hunting camp, and there are a great many, a wheelchair washroom is not one of them. After all, it is a camp, not a four star hotel. Nonetheless Mike, Kate and Dan worked very hard to setup camp in a way that would mean I was fully included in the hunting experience, that I did not have to make the drive each morning and night down into town to a hotel. Some of you may see the hotel as a necessity whereas I see the camping experience as something equally as important as the hunting experience.

In order to give me access to the firepit and campsite, Dan and Mike came up with an industrial conveyor belt. This four foot wide piece of rubber mat runs some 25 feet in length, reaching from the fireside to the rear of the trailer. I am sleeping inside the trailer so my cot was not necessary but it is still cold enough at nights to make me grateful for my cold weather sleeping bag.

That very cold has brought down a mountain of snow in these mountains between Merritt and Kelowna. There is just under a foot of snow. You might think this makes it difficult for me and in some cases it does. To make it easier the rest of the group has swept and stamped the snow around our campsite so I can get around, and when the going gets tough they simply grab my wheelchair and make short work of whatever obstacles are in my way.

We have not yet seen a moose or deer, so this trip is not successful in terms of game. Yet is a great success for me. Last night I hung around the fire with family; Mike, Kate, Dan, Brook, Matt and Tara, all cousins and children of cousins, all family, all together telling stories and laughing. That's what this trip is really all about.

A Tale Of Two Cities

Charles Dickens says it best in the oft-quoted and classic opening paragraph in his novel, A Tale of Two Cities... "It was the best of times, it was the worst of times, it was the age of wisdom, it was the age of foolishness, it was the epoch of belief, it was the epoch of incredulity, it was the season of Light, it was the season of Darkness, it was the spring of hope, it was the winter of despair…"

This time in my life heralded by such point-counterpoint. There times, moments, days when I feel so blessed, so fortunate, so happy. There are days when I feel like this is the best time of my life, like each day is as happy as I have ever been. There are days when despair overwhelms me, when fear strips me as the leaves from the trees by winter bluster. These warring emotions battle over my spirit, constantly stabbing and thrusting, lancing from the depths of my soul, piercing my heart frontally and enfilading my courage obliquely, the light warding off the dark, the warmth defeating the cold. It is not manic; I do not fling wildly from one to the other. I feel both, at the same time, working within me. I accept, as two sides of the coin of my life, these mortally locked companions, joy and sadness.

Yesterday was a day of happiness, even great happiness. Yesterday I felt, for much of the day, that this was a good part of my life, even a great part of my life. Yesterday I got to visit with my family and friends, felt free and alive, shared parts of myself with people who care. Yesterday I laughed and felt joy. Today will be like that too, I hope, a day where I will visit my daughters and granddaughter, where I will explore the wild country of backwoods BC, where I will see life in all its glory and winter in all its power. I am truly alive outdoors.

Part of the freedom I feel these days, a large part of what gives me joy, is the sense that, for the first time in as long as I can remember, I get to be myself, unencumbered by the thoughts of what my wife, or my children, or my family, or my friends might think. These days I am living more as who I am than I have ever done in the past.

I know who I am. I am loud, boisterous, at times outrageous. I am difficult and easy going. I am silly and serious, laughing and deep in thought, generous and parsimonious, courageous and fearful. I am worthy of trust, supportive of those who care for me and even those who don't, caring of others regardless of their response, and willing to give. I am an emotional human being continually growing to be who I am without fear of repercussion; well, almost. I am getting closer but not yet there completely. Most of all, I am me. I am, as all of us, a work in progress.

I know I have failings and faults; these are a part of me. I will no longer apologize for being who and what I am. I reject those doubts of my worth and value. For the first time in as long as I can recall, perhaps for the first time ever, I am who I am without regret. That makes me happy. My days are short, my life uncertain, shadowed. This makes me sad. It is the best of times, it is the worst of times.

Vancouver Hue

It's a different window out which I look this morning. The trees I see are a rioting colour palette of autumn, a patchwork of golds, yellows, oranges, reds and even light greens. There are some bare trees, hardly visible through the screen of fall paint that blocks the distant view. Beyond the decidious lie the evergreens, tall and stately, broad and bold as only a west coast Red Cedar for Douglas Fir can be. We're not in Kansas anymore, Toto.

There are times when coming from Calgary to Vancouver is much like going over the rainbow, with Kicking Horse, Rogers and Coquihalla Passes acting as the storms through which one must pass to arrive at the technicolour that is this land by the sea, with Vancouver as ever the Emerald City, home of some wizard who keeps the weather at bay. All here is a verdant scream of life; even in the throws of autumn new green shoots continue to struggle towards the fading, falling day. Even in the rains that descend from the sky as a blanket, layer upon layer, the grass continues to grow, there are flowers still blooming in the gardens.

No wonder people in Vancouver are different that the rest of us. Having lived here for most of my life I simply took the climate as normal. I could never understand the Canadian Tire commercials with their mockery of winter weather, hawking snow blowers and shovels for something the denizens of dream town see but once or twice in a year, and sometimes not at all. It's just a different life here in this small pocket of warm moist Pacific air clinging in the delta of the Fraser Valley and dreamily settling on the strand of southern Vancouver Island. It's warm.

The drive from Calgary to Vancouver, something I did all day yesterday, is what I would call at "production run". My goal started as Salmon Arm but as the day and the drive wore on that goal shifted, the demarcation line for completion moving ever westward as I felt the day collapse behind me. The drive was anything but easy, with ice and snow clinging to the roads as I left Calgary, crawling westward on Highway 1 towards Canmore and Banff. It did not improve as I made my way through the high passes of the western mountains.

Rain took over from snow where the road came down from the heights and into the various valleys along the way, but with each successive rise through the Rockies, Selkirks, Monashees, and finally the Cascades, the road once again covered itself in its winter blanket of slip and slide, the sheet of snow and ice that is true Canadian winter driving.

Today I am headed to the hospital only this time it's not for me. My mother is having heart trouble. They are planning an angiogram for Monday, the same procedure I went through in July. It should be simple. With any luck they will resolve what we think are the blocked arteries causing her pain. With any luck she will be home in a couple of days, sitting on her chair, looking out her window at these leaves of light and hue.

Off To The Coast

It's another one of those cold grey mornings in Calgary. The odd snowflake falls, soon to be augmented into a steady dusting, the sky is covered in a low sheet of dull cloud, neither aided nor eased by the cool morning sun set low on the prairie horizon. There may be blue in the sky today, but I will not see it. Soon I will be underway, off to the coast to see my Mom and Ray, along the way to visit other family and friends. Then I will turn about on Monday morning and head up to the mountains outside of Kelowna to spend a couple days moose hunting with my cousin Mike, his family, and most importantly, with my daughter Kate.

It sounds almost like normal, like there was nothing in my life to impede me. It sounds like the plans of a man without a care or concern, a man without a terminal illness. It is normal; it is the kind of thing so many other people will do this weekend. Yet I will do it differently; not so differently as to make it impossible, but differently enough to cause me to take two days to do the 12 hour drive, differently enough to add a couple of hours each day for necessary stops to ensure that blood is not pooling in my thighs as it does so often now. I will drive more cautiously with the hand controls, stop more often for rest. It is normal, yet it is different.

Last night a group of my friends got together at another friends home. We had our traditional get-together evening with more food than you can imagine, chocolate martinis for the women, lots of wine for everyone else and desserts beyond end. I love these social events, where we talk about almost anything you can imagine, from religion to politics to community to race relations. It is an amazingly diverse group of people yet everyone seems to not only get along, but thrive. There is a wonderful bond of trust and care within our group of friends; you can say something and people will always try to see it in not only the way you meant it, but in the best possible light too.

As I was leaving, Ryan and Dion helped me out of the house. Melissa loaded the gear in my car while Andrea made sure I was safe in getting into the truck. These are all acts of kindness that have an immense impact on me. As I was lifting myself into the truck with the chairlift, I said "It must be weird for you all to see me like this after seeing me the other way." Andrea said "No. We really don't see you any differently." Then Ryan added "Yeah. I'm just interested in the engineering on this lift. It's cool."

So perhaps I am more normal than I feel. Perhaps, just perhaps, my life is just like theirs, only just a bit different. This is my reminder for today, my reminder as I make the extra stops and take the extra time on the road. This is just as normal as can be, only just a bit different too.

Why?

It has been suggested to me, once again, that perhaps I put too much personal stuff into my blog, that perhaps I reveal things not just about myself but about other people, people whose privacy I should respect more. I understand this point of view, but I don't agree with it. When I started this blog I made a commitment to myself, that I would talk, or rather write, about whatever is on my mind.

The rather interesting counterpart to this whole position is what happened several months ago. You may recall that some time back I had an issue where someone was using the "Anonymous" comments to take some shots are me. While I am certainly open to commentary, this blog is not intended to be a place of judgement yet in one particular comment, "Anonymous" accused me of being a supreme egotist, since in that particular entry I used the pronoun "I" repeatedly.

So it would appear that some people are unhappy about me talking about myself while others are unhappy about me talking about others. What this says to me is that no matter how I approach it, there will always be someone whom I make unhappy every now and again. In some cases people may see me as targeting, in others they may see me as saying things that should not be said.

The reality is that, while I care about my friends and family, I write this blog as a way of telling my story, as a way of sharing my journey. Sometimes this journey will be intensely personal, other times it will reflect the lives and actions of those with whom I interact, and still other times it will simply be a medical journal. It will always, however, be from my point of view, sharing the scene from my window on life, looking at the skyline of my daily existence.

This is my story and I will tell it any way I damned well please. After I am dead, I will be gone and my story will end. My story may help others. Some may take up this story, or lessons from it. Some may find direction and healing in seeing how my life has been affected, both my my disease and by my actions. Some may just read for pure prurient interest, for the vicarious thrill of my adventure unto death, like a voyeur looking into a window on my life.

I don't know why you read it; I certainly know why I write it. So let me ask you to do something for me. Make a comment and tell me why you read and from where. I would like to know. And if I offend you with anything, I do not apologize; I just understand.