Tuesday, 30 April 2013

The Train

Once again the subject of hope has arisen. People seem to need me to hope, as if my hoping would be meaningful to them. They seem to think that hoping will improve my situation, that hoping will slow down this disease, that hoping will make it better.

I have ALS. It is killing me slowly, softly, gently and viciously. Consider this as an example. You are loosly tied to a set of train tracks somewhere out in the prairie. You are able to eat and drink, there is plenty of food and drink, but you cannot move far off those tracks. In the distance, about 10 miles off, you see a train engine. It may be moving towards you but you are not certain. So you are on the tracks and don't feel like your life is in danger. Days turn into weeks turn into months turn into years. The train is there but you really can't recognize it. It's a dot, a speck in the distance.

Then, after a long time of being on those tracks, you notice something about that train engine. It is getting bigger, clearer, closer. As each day passes, the train rises higher on the horizon becoming more and more evident, real. As each day passes, small details about the train become visible, aggregating into a picture. Then one day you notice that several of those fuzzy shapes suddenly become a solid, single element. A part of the engine comes into focus and you know that it is moving towards you. So you call for help and someone comes.

That person whom you had hoped would be your saviour says "That train is headed for you and it will never stop. It will continue towards you relentlessly, moving at about 25 feet each day. We think it's about 25,000 feet away but we might be wrong. It could be closer; it could be farther. Regardless, each day it will come closer until it runs you down." You do the math. And now you know you cannot escape the train; it is death moving steadily towards you.

Now you also notice that the ropes tying you to the track are shortening, tightening, ensuring you can move less and less each day. As the train draws closer the ropes draw tighter. The tightening is small, minuscule really. Yet after a week, or two weeks, or a month, you see that your mobility is lessened and that you not only cannot avoid the train but are being drawn firmly into its path.

There is no escape. You are going to die when that train hits you; slowly, painfully, certainly. Along the way your range of motion will lessen and your freedom will disappear. There will be nothing you can do and the train keeps moving; relentlessly, unceasingly, slowly, deadly. You cannot hope for long, for life, for living. You can only enjoy the days that you have.

This is ALS.

Monday, 29 April 2013

99% Certainty

Yesterday someone posted an Anonymous comment in my blog about Hope asking "Is the test for ALS definitive?" That is an interesting question to ask. It speaks to me of the search for hope, of the possibility that the doctors might be incorrect. It's the very question I asked when I was first given this dreadful diagnosis. The neurologist freely admitted that they might be wrong. It happens. When I asked how often, I got the real story. My neurologist said that they were more than 99% certain.

The problem is that there is no "definitive" test for ALS; no blood test, no DNA test, no muscle test nor biopsy test. Nothing. So how do they know? How do they test for a disease when there is no actual definitive test for the disease? They do it through what is called a "clinical diagnosis".

A clinical diagnosis is one where the presence, or absence, of a particular disease or condition is determined by the existence of symptoms and the determination that all other potential causes for the symptoms are not present. In other words in an ALS clinical diagnosis, they look at your symptoms and rule out every other possibility for the cause.

They start with a physical examination focused on the area of muscle loss, looking specifically at muscle control, muscle loss and fasciculations. Then they do reflex testing to determine if your reflexes are normal. They run all kinds of blood tests and urine tests. They do full body MRI scans and take x-rays of your brain. The results of these tests provide the neurologists with a range of possible suspects.

The next step is to narrow that range, first with more blood tests, additional MRI's, and then with physical torture. Well, it feels like physical torture. Once they get to the point where they suspect denervation, they test the nerves. This typically takes the form of a nerve conduction velocity (NCV) test and a session of Electromyography (EMG). Both of these involve pain.

With the NCV test, a technician hooks up electrodes to your skin, one at the top of the target nerve system and the other at the bottom of the target nerve system. In my case it was my legs. The the technician shoots an electrical charge through your nerves to see how long it takes to get from one end of the nerve to the other end of the nerve. Basically they electrocute you with enough of a charge to test the nerve but not enough to kill you. It is also enough of a charge to cause various other muscles to release that which they hold back. It's a messy outcome.

The EMG is even more exciting. Since this is a more challenging test, it is performed by a doctor and is often done more than once. It was twice in my case, once by the muscle specialist and the second time by the neurologist. The doctor pushes a long needle into the target muscle and nerve area. Then the needle is wiggled about to touch the end of the motor nerve servicing the muscle. Then you are asked to not move while the doctor wiggles the needle some more to see if the nerve is working properly.

Remember, through all of this it is only the motor nerves that are dying. Your sensory nerves, the ones that feel pain, all work just fine. It hurts, a lot.

After doing all this, the neurologist looks at the results. If there is nothing else causing the denervation and loss of muscle, then it is ruled as "probable ALS". The ultimate, final, definitive diagnosis of ALS can only be made by autopsy, by inspecting the nerves after death. I am not going to bother with that part. I think a certainly level of 99% is sufficient for me.

Sunday, 28 April 2013

Hope Is A Funny Thing

Romans 15:13 May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit.

Hope is a funny thing. It is an innate part of the human spirit. We need it desperately  Our religions, our faiths, our belief systems all demand that it be a part of what our God gives us. There is no time nor place, no love nor life nor passion nor pain where hope does not spring to us. Hope is eternal, unending, undying.

My daughter gave me a card with the verse above written on it. Her goal is to spark a sense of hope in me. She put thought and care into the selection of that verse, time into the writing of that card, concern into the creation of her gift to me. She wants to imbue me with hope, in a hopeless situation.

This disease destroys more than my body. It destroys my hope, my faith, my spirit. Daily, steadily, inch by inch I am lessened, weakened, destroyed. When the doctor says you have a terminal illness from which there is no escape, that is one thing. In reality we all have a terminal illness from which there is no escape; it's called living. The soul sucking part of the conversation with the neurologist is when they give you the date. It's not an exact date yet it is close enough, measurable enough, intractable enough that you can see it, feel it, sense it, know it, and dread it.

ALS is the only disease where you get a score and you get to see the count down. It is a disease of increments that leaves you in dread, knowing that it will, without any hint of doubt or uncertainty, without remorse or retreat, take every muscle you have and destroy it. There is no hope of remission, no hope of cure, no hope that it will slow down or miss something or skip an arm or eye or finger. Death, slow and marching, inexorable and inevitable, visible and visceral; death you will see coming, with no hope of avoiding it. That is what this disease gives you.

I no longer hope for a cure, nor even a respite. There is no hope for that. I am asked to participate in drug studies and I say yes, not in the hope that it will cure me. There is no cure. The participation in these studies is hope for delay, hope for another day of sunshine, another moment of breath, another hour where I can share time, care and love with those around me. Therein lies my hope.

I hope for today, and maybe tomorrow. I hope for love, lust, companionship, care. I hope for the things of the moment, things of the now, things of the present. I hope for a single thing in each day that will make me smile, bring a moment of pleasure, an iota of joy. I hope for a single thought in each day that will lift me up out of this plane and allow me to become transcendent. I hope for an idea, a glimpse of something, a dream; anything that will add joy to this single moment. That is what I hope for.

I hope that my children will remember me. It is a certainty that my grandchildren, some yet unborn, will never know or remember me. It is a near certainty that I will be seen only as a picture on a computer or in a photo album. Yet I hope, constantly, daily, deeply, that my children will speak of me to their children in kindness, as a man who lived, loved, dreamed. I hope, in an almost inexplicable earnestness, that my children will remember me as more than just a dying man, crippled, angry, frustrated, sad. I hope that they will remember my laugh, my joy, my energy, my compassion, my intellect. I hope their memories will be good ones.

Part of me is vicious. I hope that those who are unkind to me will regret it. It seems "un-Christian" but it is true. I hope that those who would do ill to me, who would speak ill of me, who would lessen me; I hope those people will awaken to the sad knowledge that what they do harms them most of all. And yet I also hope they will find forgiveness in themselves, and that they will forgive me too.

I hope that when this all ends, it ends on my terms; when the time comes for me to leave this life, I can leave it with dignity. I hope that I am not a burden, that I am not a weight on those around me. I hope I don't leave too soon, nor too late. I hope I get the timing right, the dose right, the tool right. I hope I don't make a mess of it.

Hope is a funny thing. Even with ALS, I find reasons to hope and things to hope for.

Saturday, 27 April 2013

Wine Bottling Day

It's wine bottling day today. I love the process of making wine, even from the kits. The first blending of juice and yeast, the smell of the ferment, the racking and re-racking, and then the bottling. Back in BC you can have someone do all this for you; the government of BC, in its wisdom, has decided that making wine all devolves down the the simple act of putting in yeast. You can pay someone to do the other parts. Here in Alberta, the government says "If you want to make wine, then you make it"; in other words you cannot pay someone to do the work, you have to do it yourself.

So I do. I buy good quality kits, the expensive ones. That's the basis for good wine, starting with good ingredients. I am a stickler for cleanliness in the process; that helps make good wine. I am not in a rush; that helps make good wine. Perhaps the best part of the whole process is that I have learned to make it group event. At each key stage of the process, I ask my friends to come over and help.

In other words, making wine means having a party no matter what stage we are in at the time. Today is no exception. I started out thinking about 4 or 5 people would come over. My last count was 10 but I am not sure if that has grown or shrunk in the last couple of weeks. It's that way with all my parties; I throw out an invitation and whomever comes, comes.

Today's party will undoubtedly be a great success. We have a great group of friends and there will be lots of food and drink. I am making two kinds of lasagna for today, a moose meat lasagna and an Italian sausage meat lasagne. I plan on putting together a great mixed salad and may even head over to Lina's today for large Bocconcini balls and Hot Capicollo Sausage from whence will arise, along with a ripe tomato or two, a Caprese Salad. Dessert? Perhaps Butter Rum Pears, or maybe nothing. It depends on how we do with dinner. And there will be a few martinis made too, probably Lemon and Chocolate.

Oh, and somehow during this Bacchanal we will bottle somewhere around 90 bottles of wine, less a few for tasting purposes and shrinkage due to gifting. At least that's the plan.

Friday, 26 April 2013

Signing Off

I wonder what I should write. Should I write of days gone by, of memories in the mist, of times past with their joy and struggle, when I was whole and strong? Should I write of now as I near the end of my life's road, of things today and immediate? There are a great many times when I sit down knowing exactly what I want to say, what I want to share. Then there are these times, times like now when I am simply uncertain.

It's not that my mind is not filled with thought. This thing in my head will never stop. It creates as I sleep. I am as unable to control it as I am unable to control my legs, my feet, my toes. My brain does not seem to have an off switch. Even when I want it to stop, it continues. I keeps on going and going, like the Energizer Bunny in the battery commercials.

Where is what I know for sure. For every moment that I live there is a story. Each breath that I take is unique, different from the last. Life, even trapped in this chair, only able to see in a narrow band out my window, is constantly changing. It's the same inside my head. My "internal vision" is vast in scale, massive in scope. In my head I see not just today, but yesterday and tomorrow. This inside story is without restriction of time and space. It goes on.

Shall I tell you of the tiredness of the moment or the exhaustion of the day or the soreness in my arms? Shall I share a hope, a dream, a wish? Should there be more stories of childhood, tastes of life on board, thoughts of what might have been or might be? Is there something brewing, steaming, cooking in my mind that needs to come out, fully formed and ready for consumption? Are there questions I have been asked that need to be answered?

Every morning is a birth, a delivery of thought that forms in my mind and expulses through my fingers. I cannot help it. This need to write is persistent, as persistent as the sea. This need to express is propounded, expounded and then simply pounded out on the keyboard.

There will come a time when I cannot write, when even the keyboard will be too much for me. There will come a time when my mind will be silenced as this disease steals even my fingers from me. There will come a time when I can no longer share this vivid internal life.

Maybe that will be the sign. Not yet. Maybe then.

Thursday, 25 April 2013

I Wish I Had Learned Sooner That...

It's another one of Katie's topic suggestion cards; I wish I had learned sooner... She may not like the outcome but here goes. Just a warning. This entry expresses a bit of anger.

I wish I had learned sooner that being happy was more important than being married. I was married for 32 years, many of them unhappy years. I left my wife for the first time in the year 2000. It was the start of a New Year and a New Millennium. It was going to be the start of a new life. Yet I went back, reconciling with her, putting my happiness aside for what I thought were the needs of my children, my family. I was wrong. I was unhappy and my unhappiness spread like a virulent virus around to my children. My wife was unhappy and she spread that disease too.

It wasn't always like that. When we first got married we were happy, mostly. It was a challenge for me. I saw her as coming from a perfect family with sound ideals and strong ties. It was something I wanted for myself and my children. She was able to win almost every argument with a form of circular discourse, never really addressing my point of view but simply asserting hers. I asked myself if I wanted to be right, or married. Even then I realized I could not have both.

Over the years I put my happiness aside, telling myself that I should appreciate my family, love my wife and children, care for them. I did what I could to be momentarily happy, what I could to find joy. Yet underneath it all, I was unhappy, mostly in my marriage. But I said to myself, it is better to be married than happy. Even then I realized I could not have both, at least not in that marriage.

Then I got my first sailboat. I found a place where I was happy, a domain where the things I wanted actually mattered, where clutter and crap and corruption could be swept away and life could be good. I started going to the boat each and every Sunday after church, and for trips whenever I could. She complained and said I had to stop spending so much time on the boat and start spending time at home. I had a family and what she wanted for it came first, before my happiness. So I decided to stop doing what made me happy and to do what made her happy, or at least made her feel in control. After all, wasn't that the right thing to do, to put aside my happiness for the happiness of my wife and children?

Then I started working out of town, away from home. I found I was happier when I was away than when I was at home. She was too, happier with me not in the home. She pushed aside all my possessions and belongings and created a house where she was happy, a home where I was irrelevant. She was happy: I was absent. She was comfortable; I was out but still married, with no real home and no real happiness.

One day I realized that I would never be happy living in those conditions, under that rule. I realized that happiness had its own price. I could be happy, but not married to her. I could have an interesting life, a home where I counted, a place that felt like mine, but not while I was in that marriage.

I wish I had learned sooner that it is better to be happy than to be married.

Wednesday, 24 April 2013

Is This How It Looks?

Is this what retirement looks like? Is this how it goes?

I got up this morning at 9:30 AM, desperately wishing the sun would not rise, would not glare in my window or heat the room to where I had to throw back the covers just to stop the sweat from beading and clinging to me, making the sheets sticky and making me feel the same. I got up and used my arms to fling my useless legs over the edge of the bed. Then, I put on "leisure pants". These are basically fancy pajama bottoms, the ones kids nowadays seem to think are suitable day wear. I pulled on a shirt that was sitting beside my bed.

A shower is definitely in my future today. I need one after the super-heating I got while trying to outlast the sunshine in my window. Clothing of a more suitable fashion is also in the plan, sometime today. For now I sit in these most casual of garments, drinking my morning latte and wondering about my day.

Is that how it will be? Will I get up each day with one or two small tasks on my list, then wonder about what else to do? My life has always been a busy one, filled with much to accomplish, a long list of assignments and goals. Today my most significant goal is getting into, and out of, the shower. I have to figure out what to do with the rest of my day.

Were I physically capable, I could come up with a great many things to do. It's a wonderful day for a golf game, but I cannot walk. It might be time to check out the local lakes for fishing, but I cannot get my wheelchair to the lake shore. I am thinking I might go for a drive, perhaps to the hoodoo's of Drumheller, but I don't want to go alone.

Will tomorrow be like this too? Will this pointlessness continue? This is part of the reason I went for the road trip right after leaving my work. I knew I would need a focus, a goal each day. At least with the road trip I would wake up each morning with an assignment - get up, get dressed, drive somewhere. Travel fills the day, so I don't have to sit and think about ALS.

So there you go. I have been home for a week and now I want to go away again. Maybe that's how it should look.

Tuesday, 23 April 2013


I was thinking it might be fun to go to Cuba for a week. With no restrictions on my time and a reasonable income, taking a week to pop off to Cuba at the last minute is certainly not out of the question. The cost of going for a week to Cuba is about $1,000 and I have long wanted to go there. So why not?

One of the advantages of my situation is that silly thoughts like this are not so silly after all. While I don't have unlimited funds, I have some money and can do some travel. There are lots of places to see and lots of things to do, many of which I have not yet done. History and beauty abounds throughout the world and the price of seeing it is not much higher than the price of staying home. The value of seeing it, the value of experiencing more of life while I still can, the value of living, is priceless.

London and Edinburgh appeal to me too. The thought of hopping on a plane and getting off at Heathrow, then spending a week or two just wandering about the UK is more than just a little delightful. The lush green of Devon and the rocky tors of the highlands are all within a short drive, although someone else would have to do the driving these days. Maybe a caravan and camping trip, wandering from John O'Groat to Lands End for a couple of weeks...

Of course most of you already know that I plan on heading back to Italy. The north of Italy, the Po valley, is my "go to" place. Whenever I get stressed and think about travel, that area is the first that springs to my mind, the first day dream. I plan on doing that in the fall if I can still make the trip. There again, I will need someone else with me.

That someone else is the problem. I simply don't want to have to take Ricky everywhere. It's not fair to him in many regards, having to give up hope on any sort of planned existence simply because I want to go somewhere or do something without forethought. It's not fair to me in that he simply does not share my excitement for some of these places; he would often rather just stay home.

No matter what I do, I simply cannot escape the harsh realities of my life. I have limitations; not big ones yet, but limitations nonetheless. I can drive, but only specially equipped vehicles. I can fly without a doubt. In fact I think I am going to ask about "medical attendant" status for whomever travels with me. I think that means that my companion would either fly free or at a greatly reduced ticket price.

But first comes the companion. Cart... horse.

Monday, 22 April 2013


Good Morning. Well, it's morning at a minimum; a cold, clear, sunny morning filled with the delicious and spicy irony that only life can bring, the irony that has a flavour to it, a palpable feel to it. There are two ironies in my life this morning.

The first started last night, actually. Yesterday after having lunch with a group of people I know through an online social group, I came home. It was not unusual. Ricky was firmly ensconced in his room playing an online game called "Defense Of The Ancients", or DOTA for short. DOTA is a multiplayer online battle game in the popular Warcraft series. He plays it a lot, an awful lot.

I found myself alone in my living room, with nothing planned and no requirement to actually do anything. I could have done laundry but I have made a personal commitment to only do laundry on weekdays, ensuring the laundry room is free and open for the working people in our building who only have the opportunity to do laundry on weekends. Every day is a weekend for me now. I could have gone shopping but I didn't want to go alone; not for fear, I just like company.

As I sat in my chair wondering what to do, I decided to see what was on Netflix that I might watch. I found the HBO series "Dexter". something I had gotten into a few years back but stopped watching after a while. On Netflix they have all the episodes, so I started with the season following the one I last saw, and started watching.

I got hooked, so hooked that it became a marathon session. Afternoon wore into evening, evening wore into night. Suddenly I found myself up at 1:45 AM watching TV. And my son came out of his room and asked me to turn off the TV and go to bed. Apparently the noise from the TV was keeping him up. Who would have thought that role reversal could happen? Me? Keeping him up? Him? Telling me to shut things down and go to bed? I'm going to do that again, I think.

The second irony is happening right now. I am up. The sky is clear and bright and the sun is beaming into my living room window. It's cold outside but inside it is tremendously warm with the sun shining right in on me. Now that spring is here my apartment heats up quickly. Yet is is cold enough outside that I want to wear one of my long sleeve hunting shirts for when I go out today.

So here I sit inside, sweating in the morning sun, dressed for the outside temperatures. It's almost short-sleeve season although I know the instant I put on a short sleeve shirt the snow will start falling. After all, it's Calgary. The irony here? I wait and pray for spring to come, for warmth to return, for the sun to bring pleasant days. When it does, I am too hot already.

That's the way irony works. When it gets good, really good, it gets bad.

Sunday, 21 April 2013

This One's For Me

I spend a lot of time thinking about what lessons my children will draw for what is going on with me. There are a lot of possibilities. They might look at my situation and conclude that I left my wife and got ALS so it's my punishment for leaving. They might look at it and say I got out for at least a bit of happiness before the end of my life. Some of them have already decided I am the bad guy; those with more distance see issues on both sides. They see me as the one who caused the marriage to fail; I am fairly certain that none of them understand the pain that I have endured.

Recently I found out that my ex-wife has expressed a concern that if my children spend too much time with me I might turn them against her. I wonder what guilt drives that woman's thinking, what fear makes her feel someone might turn her children against her. It's not a good thing. It's a funny concern when viewed in the light of my actions. My son recently chewed me out for reminding him that he should be sure to call his Mother on her birthday. He tells me he talks to her often on Facebook and that is a good thing. Children should talk to their parents; someday they won't be there to answer the call.

The horns of my petard have hoisted me in other ways around this. I find myself on a regular basis encouraging my son, and those daughters who will speak with me, to have a good relationship with their Mother. My logic in this is plain and simple; I am going to die and all they will have is their Mother. They need to keep that relationship.

On the other hand I will not, nor can I, hide her actions from them. My ex-wife's approach to our divorce has been a bit of a scorched-earth policy, a take no prisoners approach, especially around the financial aspect of things. This reflects her behaviour in our marriage. Money was pretty much always the most important thing to her in all things. I was not. I did not come second, or third, or fourth. In fact I am fairly sure I didn't even make her nightly Top Ten list.

A couple of my children have told me "I don't like her lawyer", as if the actions of the lawyer were completely independent of the client. What they don't realize is that lawyers simply act on instructions from their client. The lawyer may proffer advice and direction but in the end, the client must say "yes, do that". Her lawyer has a reputation for excessive demands and outrageous approaches; clearly someone had to say yes to some of the more insane demands and letters I have received  My ex-wife chose a psychotic pitbull on purpose. The "delay until he dies" strategy is intentional. My children don't want to see this; they simply do not want to see their Mom as doing anything that might be harsh or cruel. Why would they? It won't help them.

So, on a regular basis, I find myself in the odd position of saying to my children "Don't judge your Mom too harshly" or of simply holding my tongue. I find myself in the predicament of encouraging them in their relationship with their mother, ensuring they spend time with her, go to see her, talk to her. Yet I know in doing that I will be portrayed in that conversation as the bad guy. I send them in with as much positivity as I can possibly muster knowing full well that the resulting interaction will not be good for their view of me.

This blog is a notable exception. This one is for me.

Saturday, 20 April 2013

Living Room

There is a stiff breeze blowing outside, whistling and whirring its way past my window, rising and falling in tone and tempo, telling me that spring is on the way. It's a cold wind yet there is no hint of snow in the flat grey sky that reaches to the northeast of my apartment. The snow is out there, I know it. But maybe, just maybe this time it will be the last of the season. Or maybe last time was the last of the season and this buffeting is just the first hint of the greening that is on the way.

The poor pine tree is getting a shaking, its cones clinging still in the upper reaches, pods open in diamond black pattern round these brittle hard seed pods. The birds have been eating at them all winter. Many have fallen under the push of wind or weight of snow. Only those in the highest branches cluster still, sad reminders of what used to be, yet proud retainers of the hope for spring that even the trees share, looking for the opportunity to let go of their precious contents and seed the ground anew.

I am sitting here, latte in hand, wondering if I will see another spring from this window. My apartment is only moderately suited for someone in my condition. There is carpet throughout, with underlay beneath, that makes wheelchair motion an extra effort. The bathroom is small, the door itself not quite wide enough for my chair. I am using my walker to get in and out but my arms are failing and soon even the walker will be beyond my ability.

Either I need to make some renovations to this apartment, subject to landlord approval, or I need to move to a different apartment, one with true wheelchair access. This could be difficult. Most apartments are designed to make maximum use of space to allow for living. That means narrow hallways, smaller doors and tighter corners. There are some that are designed specifically for handicapped people. I need to start searching those out to see what I can get.

Maybe it's time for me to look at moving back to the coast, perhaps Sechelt or Comox or Nanaimo. That way I can spend the last days of my life near the ocean, feeling its moist, cool breath as I wheel about. It's another decision which I must make and one with which I have much trouble.

It never gets easier, does it?

Friday, 19 April 2013

Cognitive Function

I have noticed a change in my the way my brain works, especially over the last year or so. I forget more things. I say things I don't mean to say. My "filters" are failing me, not that mine were all that good to begin with. I had originally attributed some of this change to stress in my life, with the impact of my divorce and then the impact of my diagnosis, to acting out and reacting to what was happening to me. Then I started doing some research around ALS and cognitive change.

In the past, medical opinion has been that ALS does not impact your mental or intellectual state; emotional state is a whole different ball game, it hits big in that park. Newer research suggests that at least half of all ALS patients experience some form of cognitive change, primarily in what is known as executive dysfunction as well as an occurrence of a mild memory loss. It's another invisible symptom.

Mild memory loss is easy to understand. It's another way that ALS is the great imposter. As you age, you begin to experience memory loss; we all do. The reality for me is that I have never had any issues with memory; in fact I have always had a very good memory, particularly for things like phone numbers and addresses. Of late, however, I find myself having more and more difficulty with memory. I find myself relying on technology to help with some of it, where my phone remembers numbers for me. I take more notes and try to keep more organized. Sure, I still have a good memory, but I notice a change. It's not what it used to be.

The executive dysfunction part is tougher to explain. The term refers to a set of cognitive abilities that control and regulate things like goal and outcome-directed behaviour. They include the ability to initiate and stop actions, to monitor and change behaviour as needed, and to plan future behaviour when faced with changing circumstances or unusual events. Verbal impulse control is an executive function.

I have always had a quick tongue and over the years my inability to control it has gotten me into more than one scrape. It would be fair to say that I have historically lacked in the area of verbal discretion and vocal impulse control. I can remember as a child my Dad telling me to "think before you speak". He was less than successful in his admonitions.

Over the last six months I have noticed more and more that I will say things without seeming to have the ability to stop myself and without understanding the potential impact of some of those things. I don't mean to say some of these things, or perhaps I do, I am no longer certain. It's as if my filters are getting less and less capable as time goes by. By the time I realize what I am saying, it's out and more importantly I don't even know it's out. I am not sure how much of this is because I no longer give a damn or how much of it is true cognitive dysfunction.

This change is not in the area of intellectual content; I am still as smart as I ever was, if I ever was. This change is more in the area of emotional content. It's embarrassing. I will say something and hours later I will wonder why the heck I said it. Even worse, I will realize hours later that I said something inappropriate but for the life of me I cannot remember who I said it to or what it was that I said. All I have is the vague notion that I said something wrong. I have noticed this has worsened over the last few months.

Perhaps the most terrible part of this is that, like the muscle loss, I can see it and yet I cannot do a thing about it. Intellectually I can tell it is happening, understand what is happening, see what it happening, yet physically I can do almost nothing about it. Nor can I change its progression; it will get worse. I will lose more.

Perhaps I'll stick to writing and stop talking. It's safer.

Thursday, 18 April 2013

A Living Day

I went to work yesterday. I was a commitment I had made when I left, that I would come back to do some training and knowledge transfer. I wanted to do it, I felt it would be good for me. The last month away from work has seen some decline in my strength and endurance. The day exhausted me.

Work is supposed to be tiring, even when it is very rewarding. It's not just the work, though. It's getting up in the morning, getting dressed, making coffee, getting down to my truck, driving into the office, and getting up to my desk. All of this has to take place before I even get started. It's tiring just to get to work.

The other challenge is how quickly I run out of breath, and out of strength. Going to a meeting, wheeling myself to the printer and back, going for lunch; all of this is equally as tiring as the process of getting to work. In between all this stuff that makes me tired I managed to get some work done too.

Here is the real tough part. Work is easy, it's fun and enjoyable. I like doing what I do and I gain great fulfillment from it. The work part is not the hard part. The hard part is all the other stuff that surrounds my work.

I am going back to the office today and then tomorrow I make a presentation at a Professional Development day. I don't know that this will be my last time in the work environment. I have been asked if I will come in and do some "spot consulting"; in other words I might go in now and again to provide "opinion" on projects and processes. I may even do some more training.

Part of me wants to do this, the excited, interested, thinking part of me. The tired part of me, this physically worn out shell that I live in, does not want to do this. The part of me that loves the feedback, the interaction, the affirmation of work well done; these parts of me make me want to get up and go. The aching arms, non-functional legs, failing breath; these parts of me lobby for me to stay in bed late and, once out of bed, sit around all day relaxing.

Today I am going to listen to my spirit; tomorrow too. My body is just a failing shell. The real me is the person who uses and lives inside of this body. I am my spirit and soul, not just a physical machine. Today I will push the physical machine and live with the results.

Live is the operative word.

Wednesday, 17 April 2013

Hello Anonymous

It's interesting to see the way some of those who read this blog offer questions and comments. Many of you have created Google accounts and thus your comments are quickly and easily identifiable. Others use the Anonymous interface, either because they don't want to identifiable or simply because it's easier. Sometimes people put their names in posts, other times they don't.

I will never admit to being paranoid; I am pretty sure someone is out there looking to get at me in some way. There is a deep, internal conspiratorial view within me that still thinks that somehow this dreaded disease is a result of some chemical exposure or some radioactive thing that the government knows about but won't tell us. So maybe I am a bit paranoid; I just won't admit it.

So back to Anonymous. Some of the comments are very direct questions, almost interrogative. It makes me wonder who is asking and why, especially when the posts are from Anonymous. Why not tell me who you are? As you know, I keep no secrets, hide no facts. I am not afraid to answer; I always answer.

The audience for this blog continues to surprise me. In the last week, aside from the known sources here in Canada and next door in the US, there have been 53 page views from Russia, 32 from the UK, 20 from Germany and numerous one and two page visits from around the world. The search terms have gone from being focused on my name and ALS to including things like "als exhaustion", "als wheelchair", "can't straight leg lift or put socks on als", "als suicide" and, of all things, "dorsiflexion als".

So it looks like there are lots of people with lots of questions and some of them just want to be Anonymous. Well whoever you are, no matter where you are from or what you want to know, I will answer.

Just don't be afraid to tell me who you are, Anonymous.

Tuesday, 16 April 2013

And So It Goes

I fell yesterday. It wasn't a bad fall. There were no broken bones, no torn ligaments, no cuts. There may be bruises but I cannot see them. Yet fall I did. It was a different kind of fall, like the fall that happened in the Costco lot the Sunday before I was diagnosed. It was a fall that should not have happened, except something has changed.

This fall took place when I was fully braced, held up by the tailgate of my truck. My arms were holding me in place, only they didn't. They let go, gave out completely, and I slid down, my legs buckling underneath me and my feet folding under them. Fortunately I was getting up from my wheelchair; I fell back into the foot frame and that kept me from sliding onto the ground.

Of late I have noticed that my arms are getting weaker. I am less able to hold up my body with them. When I do, the muscles scream at me, aching and yelling for relief from the workload. My fingers get tired too. Typing is slower and less accurate. My hands shake from the wear and tear of daily activities.My wrists are sore.

My lower legs are getting worse too. My calf muscles were capable of some work up until lately. I had some foot movement, some ability to move my left foot. I could still work the gas pedal in the truck with my right, and perhaps I still can to some small degree; not much, but enough to see that there was still ability. That ability is fast fading.

This morning I was short of breath from the stress of walking from my bedroom to the kitchen with my walker. I can still do this, mostly. By the time I get to the dining area I have to transfer to sitting on the walker instead of walking with it. From there I can roll into the kitchen. Even so, I need to rest for a few minutes, to catch my breath and give wearing muscles a chance to recover. They never recover all the way; there is always a small, infinitesimally small yet real and over time measurable, backwards loss that never rebuilds.

Ricky says I need to spend more time in my wheelchair. I suspect he is right. I am still fairly capable with the chair. Small ramps and slopes present small problems. Larger slopes, heavy angles, door sills and other impediments make for more challenge. I am going to have to start using my power chair soon. It's another backwards step, another loss.

And so it goes.

Monday, 15 April 2013

Purposeful Movement

Purposeful movement; it's a term the medical community uses when evaluating the functioning of arms and legs for the ALS Functional Rating Scale. The FRS is used to evaluate the functional status of ALS patients and to compare status over time. It's a relatively objective way of determining where you are at with the disease, where you are likely to be headed with the disease, and how long it should take to get there.

The FRS measures 12 different area. Each area is assessed on a 0 - 4 where 4 is normal and 0 is, well, 0. When you add them up, you end up with a score out of 48 which is full functioning. If you want to know more about this scale and the parts of it, you can go to https://psg-mac43.ucsf.edu/als/ALSFRS.asp. It lists them all with the relevant evaluative criteria. There are lots of others and you can do your own score on some of them. Here is what mine looks like...
SPEECH - 4. Normal speech processes
SALIVATION - 2. moderately excessive saliva, may have minimal drooling
SWALLOWING - 4. Normal eating habits
CUTTING FOOD AND HANDLING UTENSILS (patients without gastrostomy) - 4. Normal
DRESSING AND HYGEINE - 2. intermittent assitance or substitute methods
TURNING IN BED AND ADJUSTING BEDCLOTHES - 2. can turn alone or adjust sheets with great difficulty
WALKING - 1. non-ambulatory functional movement only ( or more likely - 0. no purposeful leg movement)
CLIMBING STAIRS - 0. cannot do
DYSPENA (shortness of breath) - 2. occurs with one more more:eating, bathing, dressing
ORTHOPNEA(shortness of breath (dyspnea) which occurs when lying flat) - 4. None

If you add them all up, I get a 33. When I started this five months ago, I got a 38. It would appear that I am right on track and smack in the middle of the normal regression range. In other words, to quote the neurologist who gave me a confirmed diagnosis of ALS, I have "plain, run of the mill, everyday, ordinary ALS".

The language used to assess walking (# 8) includes the term "no purposeful leg movement". You get a zero (0) for that one. That's me, or nearly me these days. I am near normal in almost all other areas not impacted by leg strength. But anything with legs, that's a problem.

It's that whole "purposeful" word that bothers me. My legs are soon to be purposeless. I think about purpose a lot these days. Now that I am no longer working, no longer a husband, no longer a contributor, I struggle with the idea of having a purpose. I wonder if my purpose is just to exist, just to be?

Having purpose in life is important, at least for me. I want to be purposeful. I want to live what remains of my life with intent, with meaning. I want it to count.

Sunday, 14 April 2013

Staying Positive

I was asked recently how I stayed so positive and upbeat while dealing with ALS. First of all I don't see myself that way at all. I am a glass half empty kind of a guy. My brother Peter says I can find a cloud for every silver lining. On of the my past bosses referred to me as the "designated worrier".

I wasn't, and am not, always this way; to this day I would have to say that fear and negativity do not dominate my life. It's just that I have an innate ability to see what can go wrong, what things are bad and how things can get worse. I am not a sad sack, pulling the grey cloud along behind me. Nor do I wallow in misery. I just see things from my perspective. My life's lessons have taught me to watch out for what might go wrong and be ready for it.

To those of you who see me as "brave", I am not. What I see is simple pragmatism. Carrying a cloud of misery around with me and raining it down on others is neither practical nor helpful. Dispensing fear and doubt will do nothing to advance my life, nor the lives of those around me. To be sure, I have sadness in my life; I simply refuse to be the operatic clown, face painted with laughter yet tears inside and out.

Staying positive is difficult, especially on my bad days, and there are enough of those you can be sure. Yet pragmatism is the only way to move life forward, at least on the outside. Inside I may be crying, angry, depressed. Sometimes I share those feelings. When I do, I almost immediately see the difficulty it creates for those around me. If I cry, it makes life hard for them. If I laugh, it makes my condition easier for them to accept and understand. So I try to find reasons, both inside and out, to smile and laugh.

Life is easier, even with ALS, when you are upbeat and forward looking. In my view, staying positive doesn't mean being happy or glib all the time. It doesn't mean you never have down days or negative moments. Staying positive is more about your direction of motion, your aims and actions. Fear immobilizes; positive thought moves you forward. Fear stops you; positive thought takes action. Laughter, even in the face of fear and outrageous odds, is the best way to keep perspective.

My goal is to turn this perspective, these feelings, into positive actions. When you really look hard at life, that positive action means moving forward, finding solutions, solving problems, making things work. If you want to lift yourself up out of the morass, it starts with that first step forward. Then take the second, then the third.

And then you just keep going.

Saturday, 13 April 2013

Too Much For Customs

I just wheeled down the hallway in this lovely Marriot Courtyard Hotel here in Minneapolis. The hotel was completely refurbished about a year ago and they made these terrific accessible rooms. The bathroom has easy wheelchair access and the shower is one of the best I have seen yet for someone who needs to sit while they shower.

And there there is the carpet. For mobile people, those who walk among us, this carpet is wonderful. It's thick and soft with a wonderfully gentle, and probably very expensive, underlay. It's the kind of carpet that grabs the wheels of a wheelchair and holds on tight. There is complete friction as the wheels settle in to the sand-like softness underfoot. It takes a monstrous effort to get down the long hallway, something almost impossible to do with a cup of coffee in hand.

That's the other challenge. The wheelchair accessible room is at the far end of the hallway, completely traversed by this wonderfully soft carpeting. It's hard enough the chair, but add any attempt to carry anything where you are single-hand wheeling, and it becomes impossible.

So I did the impossible, went to get coffee, and asked a member of the hotel staff to bring it down to the room for me.

This room is on the ground floor with a sliding door that opens to a small patio. It's on the outer edge of the hotel with easy access to the parking lot if you want to walk over the grass. That's what Ricky did last night in order to get our miscellany from the truck. Only there is no grass; it's covered in about 4 inches of fresh, new fallen snow. This is not the soft, gentle snow of a winter's evening. This is the hard, icy, crusted snow of a frozen spring storm. Ricky seemed to enjoy it; he says he likes being back in the cold, versus the heat of Louisiana, Texas, New Mexico, Arizona and Nevada. Me? I prefer the moderately warm climate of Vancouver or San Francisco, only without the rain.

Today we are returning to Canada. I am bereft, as in the course of our adventure I purchased the ingredients for Chocolate Martinis and now I have too much liquor to bring home without paying additional duties. I suspect the duties will be worth more than the $20 value of the Crème de Menthe and Crème de Cocao, so I am simply leaving them behind here at the hotel as a non-cash benefit to whomever cleans this room.

This time they get the silver lining.

Friday, 12 April 2013

I Am Grateful

I was going to start my day with a bitch session, a full description of why having ALS makes my life so much harder than yours. What a joke! My life is easy compared with the vast majority of the people on this planet. Let's face it, if you are going to get ALS, Canada, and Alberta in particular, is the place to get it. In fact if you have any major illness, Canada is the place to get it.

Thanks to our Canadian health care system and the tremendous support provided by the ALS Society of Alberta, I am well cared for, both financially and physically. While my life may be drawing to a close, it does so with incredible opportunity and support. I am able to travel and continue to explore the world around me. I am able to see things, do things, be places, hear sounds, taste tastes and experience life fully. All I have is this minor health issue to worry about.

It's all in your point of view. I admit to being a glass half empty kind of a guy, but my point of view is that, even with a half empty glass, I still have something to drink. And hey, it might be scotch in that glass. All a half glass of scotch needs is a bit of water and some ice. Given the things that I have, my plan is to enjoy them fully.

Let me give you an example. I really appreciate my son being with me these days. Despite our differences and challenges, he is making this road trip better, and he is working hard at doing that. I could still do this trip alone; I have proven that already, both to myself and I hope to others around me. The modifications to the truck and my own sheer bloody-mindedness would have ensured my travel so far. Yet having Ricky with me has made so many things easier, much easier.

It's not just the mechanical things like packing the luggage or loading the truck or even driving. In fact I have done more driving than Ricky. It's the things nobody really sees that count. Today I was going to get on the elevator after breakfast. A young man with a cart full of luggage came roaring out of the doors and just about ran into me. His eyes were at "normal" level and in my wheelchair I am well down in the vision line. He saw me at the last minute and all was well.

When Ricky is with me, pushing my chair or standing beside me, I suddenly become visible, in the normal line of vision. He is my "flag" that people see when we walk together. And on occasion he is my bodyguard and aide-de-camp. In other words, without him I would get ignored more or missed more, or I would just have more trouble getting around.

So I can complain about someone who sleeps half the day and misses almost every free breakfast in exchange for a fast-food breakfast on the road, or I can be grateful that I have someone who will be there to part the crowds, who will be seen in the line-up, who will go to the check-in and look after the luggage and make sure the room has a toilet that works for me.

I choose to be grateful.

Thursday, 11 April 2013

Homeward Bound

Little Rock, Arkansas. It's wet outside, the residual effect of last night's tremendous thunder storm. The wind is still blowing although nowhere near as powerful as it was at the height of the tempest. It's a light wind, interspersed with moments of calm. The sky is a solid overcast of gray with the threat of rain but little chance of delivery on that threat.

I awoke this morning to a rhythmic pounding, a solid backbeat in the walls of my room originating from the room next door. The timing, pace, and duration was impressive enough to put the drummer of a rock band, a John Bonham, Keith Moon or maybe even a Ringo Starr, to shame. And it was 6:30 AM! Despite my vigourous pounding on the walls, begging cessation, the localized thunder continued until its natural denouement. By the time it was done, I couldn't get back to sleep.

Neither could my neighbours continue with slumber, as shortly after the completion of the morning announcement, the door next to ours opened and closed with a solid thump, seeming to trigger the same arising moment all across the floor. A dozen or so doors all opened and closed with the same solid thump within a few minutes of the first. Finally I acquiesced to gathering day and went for breakfast.

The talk around the breakfast room was all about the storm. It was big. It was impressive. It was the first major storm that Little Rock had seen in some time. I watched the news, anticipating the projected tornado to have done some horrific local damage to a rural Arkansas trailer park. There was nothing. The storm had passed, gone away with only a few lightening struck transformers blown to mark the event.

The drive yesterday was gentle, except for that time we spent navigating the sea of rain that deluged the region as we drove into Little Rock. It was a near tropical downpour of Biblical proportion, but not sustained enough to cause one to need the Ark. It made driving "interesting", especially when Ricky decided that speeding up to get through the rain blast of a passing semi-trailer was a good idea. I didn't think it was. We resolved the issue; I stopped expressing my opinion and he slowed down. We survived.

The landscape from the Gulf Coast of Louisiana to the rolling hills of Arkansas is an easy, steady rise. The flats of the coast give way to slow, loping hills; the short scrub and grass slowly thickening and rising ever higher, moving from short brush and swampy grass to a thickness of thatched trees, a blend of pine, oak, willow, pecan and countless others. Bayou turned to swamp, then pond, then small, clear lakes. These low hills will rise for hundreds more miles, eventually lifting and blending to become the great, oak covered eastern mountain ranges with names like Appalachia and Smokey.

Today we are going to Graceland; no real reason, neither Ricky nor I are giant Elvis fans. I believe Elvis is dead. He left the building in August of 1977, never to return. I do not worship his memory although I still enjoy his music, especially the more soul-felt ballads that slid out of him on occasion. After visiting Memphis for an hour or two, we will head for St. Louis.

We are homeward bound.

Wednesday, 10 April 2013

Killing Chickens

My brother, Adam, and I were talking about our childhood yesterday, and particularly our time in Stave Falls, and particularly the chicken shed. It got me to thinking...

I hate chickens. Not the dead ones; I like them,  mostly barbequed with a bit of extra sauce, fried is really good too. It's the live ones that I find so egregious, so repugnant, so detestable. This is most certainly a result of the chicken shed that was the bane of my childhood life in Stave Falls.

The chicken shed was a terror of terrors, filled with mean, nasty stupid chickens clambering about in the mud and shit, covered with lice, pecking and scratching at me as I came in to shovel the crap out of their house. The chicken shed looked just as nasty from the outside as it did from the inside, a ramshackled slant barely upright and certainly ready to tumble in any sort of wind, a board and batten vertical in its own insanity attesting to the undeserved staying power of hurried construction. Yet tumble it did not, stay up it did.

Turkeys aren't much better than chickens. What they lack in intelligence they certainly make up for in plain, bloody minded meanness. I know this because every year my Dad would bring home a live turkey that we would fatten up for Thanksgiving or Christmas, one or the other. One of my chores, a chore shared unwillingly by the other children too, was feeding that big, pecking, poking monster in the bowels of our dirt floored basement.

I liked the barn better. It had cows and horses in it. Pigs too, although your basic grunter is so non-discriminating in his or her eating patterns that you always had to be careful not to fall into the trough when you poured in their food. My brother Peter had a pet pig at one point but it never made it to full size. It developed some sort of anal prolapse and was pronounced "dinner" early on. There is more to that story and I am sure my brother Peter can make up better lies than I in that regard.

Cows were relatively docile and rarely bit. Plus they were fun to ride because they just aren't designed for the sport. Horses, while well designed for riding and often gentle, still have nasty teeth and more than once decided to use me as a target.

The ultimate victory in all these things likes in the ultimate end of most of these creatures. We killed them and then we ate them. Life in Stave Falls taught me that the food we eat doesn't just come from Safeway. It also taught me that if you wanted something good, you generally had to dig through the shit to get to it.

Life can be like that sometimes. Not always, but often enough. I think that bad stuff is important. It makes the good all the sweeter. The sunrise looks all the more beautiful when you know there aren't that many left. Food tastes richer when you know that eating is something you have a limited time to enjoy. The warm breeze after a storm, a hot coffee on a cold day; it all works.

Life is good, even if bad things happen, except possibly for a chicken. But then again, how would I know? I'm not a chicken.

Tuesday, 9 April 2013

Now I Know

It's been two years since I began showing symptoms of ALS; it's probably time for an update with a bit of retrospective. About two years ago I was out for a walk with two of my daughters. My granddaughter was in her buggy and her mother, my middle daughter, was pushing her along as we strolled the sidewalk in an easy breeze under a clear spring sky. I stumbled and fell. It wasn't the first time I had fallen in my life but this was a solid, substantial fall from which I could not recover. I slammed into the sidewalk, very nearly taking the buggy with me.

That was when I really began to notice that I was not as strong as I once was. I have had a bad left knee for many years. In fact I had arthroscopic surgery on it only a few years before this all started. I was used to that knee buckling. In the past I could always catch myself with my right leg. Now I noticed that my right leg was no longer strong enough to hold me up when my left gave way. I attributed this to getting older; little did I know.

Over the next few months I fell a couple of other times, always attributing it to a bad knee. As spring turned into summer I found myself unable to walk as far as I had in the past, and less able to stand for long periods of time. I found that when standing I needed to sit, and when I sat I went down quickly. I attributed this to being out of shape; little did I know.

I went sailing for the summer, something I have done for more than the last decade in varying vacational durations. While sailing I found it harder to stand for long days at the helm and had to spend more time sitting. When taking the motor off the back of the sailboat, I fell and the motor fell on top of me. I had a compression fracture in my spine and was in pretty bad shape. I attributed the accident to being overweight; little did I know.

I spent a few days in my bed on the boat and managed to get into good enough shape to head out. As I headed down Tribune Channel from Kwatsi Bay in the Broughton Archipelago, I hit a submerged log hard enough that it severely damaged my boat. I fell again and it hurt. From then on I found myself having more and more difficulty walking, doing stairs or standing. I attributed this to a back injury; little did I know.

Finally in the fall of 2012, almost 20 months after that first tumble on the sidewalk, I fell hard in the sidewalk at Costco. I decided to go into Emergency, as suggested by my GP, and seek help. That's when I found out I had ALS. My diagnosis was delivered to me on November 23, 2012. Now I knew.

It's been two full years since that first fall on the sidewalk; my condition has continued to decline. I have lost about 80% of my ability in my legs. I am beginning to feel that weakness again, only this time it is in my arms. It hurts to lift myself up and down out of my chair, something that used to be difficult but not painful. I'm getting clumsy, knocking over glasses or cups of coffee, banging my hands on doors and other furniture. It's not major; it's minor, miniscule, inconvenient, a small change. This is not getting older, this is not being overweight. There is no injury or accident to blame. This is ALS.

Now I know.

Monday, 8 April 2013


I am in Louisiana, sitting in a chair in my brother's living room, tears rolling down my face as I read the emails of support and kindness from those I work with at the CBE. They are helping me with my campaign to raise money for ALS research. I am touched more deeply than words can say by their kindness and a generousity beyond my comprehension.

What I hope they know is that they are doing more than just that. I have struggled over the last months with how my life would end, how it would move towards its inevitable conclusion. I have wondered about meaning in my life, the loss of my marriage, the impact on my children and so many other things. Yet underneath it all was a deep abiding sense that I had lost my worth, the limited value I had in my life.

These people are uplifting me, showing me that my life meant something and that they cared that I came along, cared that I was part of their life, cared that I existed as a part of their experience. I am a man on death row, encaged by the damage of this pernicious pestilence, slowly suffering the destruction of my body until it ultimately fails me completely. I am a prisoner locked inside the iron bars of weakness, each day losing incrementally more and more.

The simple act of joining my team, of making a donation, of saying "I care" has an incredible impact on my spirit. I am uplifted, strengthened in spirit, not by the donation but by the act. Something so simple, yet so powerful; something so easy yet so important. It says "I care".

You see, I didn't realize this effort would have this impact on me. I thought I was just another project. After all, I am a Project Manager. Emotionally it is becoming more and more about redemption, release from the prison of ALS. My body may never leave this jail but my heart and spirit become freer every day.

In my brother's house I am cared for, not just by him and his wife but by each of the people who reaches out to me in kindness, who demonstrates that compassion which means so much to me.

Sunday, 7 April 2013

Dreams and Rambling

Every once in a while I have a dream that is extremely simple to interpret; almost literal. Last night was one of those nights. I dreamed I was involved in some sort of international spy ring. It was dangerous and involved all kinds of odd characters, too strange to go into detail about here.

The main theme, however, was that I was forced to choose between living in one of two places. In one place, I was safe and home. In the other place, I was with a woman I loved, a woman I longed for. My home country was where I was safe; my lover was in the other country. Neither place was bad; one was my home and one was where my lover lived.

Beneath all of this, I had great knowledge about some sort of secret. In the dream at one point it was knowledge about food and health. This knowledge was so powerful and important that I was constantly on the lookout, on guard against being killed because of what I knew. I was constantly aware of the threat of death, and its inevitability. This knowledge permeated the dream.

At the end of the dream, the woman I loved came to visit me. Then she was leaving. She boarded a plane, but as the plane pulled away on the runway, she was still standing there only she had a gun in her hand and it was pointed at me.

Okay you dream analyzers, have at it. You tell me what this all means.

Now, on to reality. Yesterday was not as boring as I feared it might be. As we left El Paso we drove once again across the dusty, dry plains and rock hills of West Texas. As we drove east the land slowly changed, or at least the vegetation changed. We moved away from a surface covered in sage, bunch grass and cactus. Slowly the colours changed. Green crept into the grass. Sage brush turned purple-edged. Small flowers blossomed in yellow and blue beside the highway. The bushes slowly became larger and turned into small trees. The surface moved from dusty grey to light brown and and easy lime green grass, and finally into a lush, low rolling countryside covered in green grass and low trees.

Underneath all of this verdancy there still lies the sandstone rocks of Texas. The surface has changed. Strip that surface away,a thin peel, and you once again find those hard, grey, dusty rocks. San Antonio, with its beautiful RiverWalk, is an oasis, a verdancy slowly climbing out of the dirt and grit. We dined on the RiverWalk and enjoyed the lushness of the surroundings. Today we will explore the Alamo, then it's off to Lake Charles to visit my brother Adam, his wife Lisa and my various nephews and step-nephews.

Oh, and we destroyed another tire yesterday. That's three flats on this trip so far, two of which have resulted in condemned tires. I am pretty sure my tire insurance will cover them. If not I am going to have a conversation with the Ford dealer. Oh well, just another thing in life.

Saturday, 6 April 2013

Road Weariness

Texas today. Some yesterday. Some tomorrow. Texas is big, no doubt about that. So far it's been boring too, a dull dusting, slowly sloping terrain that passes by almost unnoticed. The drive from Gallup, NM to El Paso, TX was not too long of a day. We got here at about 3:30 PM and checked into our hotel fairly quickly. Ricky and I have a routine about most of this by now. We pick a target, drive, pick a hotel, eat, drink, and sleep. Then we get up and to it all over again. Only the destinations change.

If I sound a little blasé, it may be linked to the relatively uninteresting nature of the Texas and New Mexico landscape as you head towards Mexico. El Paso is a border town, more Mexican than American. Spanish is the default language and Hispanic is the default culture. The city itself looks like a giant rock pile as you come in from the west, with barren rock hills all around and grey industrial sites lining the highway.

El Paso is where the Rio Grande River, or Rio Bravo as the Mexicans call it, becomes the border for the US and Mexico. It is a small, dirty, muddy river, more of a creek in most places at this point along its meandering path to the sea, having picked up more and more sediment from its start as a clear stream in the Colorado Rockies, crossing the New Mexico sandstone desert. The river gets bigger as it drop further and further to the ocean, and dirtier too.

Ciudad Juarez, or just Juarez, sits right across the river. The newspapers say it is one of the most dangerous cities in the world, heart of the Mexican drug cartel wars. Oddly enough El Paso is one of the safest cities in the US with one of the lowest crime rates. Ricky says it's because the drug lords all live here and don't want that nonsense in their neighbourhoods. He may be right. He refused to go there, refused to even go look across the border. We can see Mexico from our window and that is enough for him. Me? I would have gone, just for the adventure of it. What could they do? Kill me?

It's hard to believe that "down in the West Texas town of El Paso" we are still relatively high in the mountains and plateau, about 3,800 feet. The drop in elevation is gradual and slow, just like most other things around here. Our peak elevation on the Colorado Plateau was about 7,000 feet, so we have come halfway down. By the time we do the 500 miles from El Paso to San Antonio, we will drop another 3,000 feet. It's all downhill, but not noticeably, so far.

Let's hope I can stay awake for the drive today, or at least fall asleep when Ricky is driving.

Friday, 5 April 2013

Monument Valley

Yesterday wasn't so bad after all. Once Ricky and I had a bit of breakfast and got ourselves organized, we managed to make a pretty good day of it. That's the way things go some times; you think you are off on a bad start and it turns out good, or you think you are off on a good start and it turns out bad. All it really means is that expecting any given outcome does you no good. You control very little in life, and I control even less than most, so just point yourself in the right direction and take it as it comes.

What came yesterday was a very interesting drive. Our first touch point was a place called Monument Valley on the Utah-Arizona border. This fascinating land formation is the one you see in some of the great old Western movies, films like "She Wore A Yellow Ribbon", "Stagecoach" and "The Searchers", all of them John Ford classics starring John Wayne. This locale was featured in "Easy Rider" and "Forrest Gump" and even showed up in a couple of "Dr. Who" episodes recently!

The stone tower sentinels guarding this region of the massive Colorado Plateau rise up to 1,000 feet in the air; that's 320 meters for those of us who think in metric. They stand, solitudinous, alone against the desert sands, large massifs of layered rock and stone. These columns were formed eons ago when this part of the planet was beneath an ancient sea. The monuments are actually shafts of lava, magma that pushed up into cracks in the sea floor or pipes in the rock beneath that sea. Then, as the land rose and the sea retreated, erosion wore away the softer sandstone surrounding these shafts of hard rock. Now they tower against the landscape, distant watchers, soldiers guarding the endless desert plain.

We drove through this valley, in many ways a different world and certainly different from our home terrain, with giant rocks and rugged walls, through the rolling floor of the plateau, cut as it is with canyons, cracks, arroyos and creeks, crossing any number of small bridges and large, through towns built into the landscape with names like Bluff and Mexican Hat. Our drive took us in a spiral starting in Arizona through southeast Utah, then on through southwest Colorado and finally into northwest New Mexico. We eventually ended up in Four Corners, the only place in the US where the borders of four states - AZ, UT, CO, and NM - all meet.

We stopped at the Four Corners monument and took some time to shop at some of the local Navajo vendor's kiosks. I picked up a few trinkets as gifts plus a wonderful urn and plate, handmade by the same person selling them. She was working behind the table on new pottery as she sold completed works, her husband helping her present and package her artwork. We chatted. Her story, that of her husband too, had its own tragedy; she had recently lost her eldest son to a stabbing in a fight and was now contending with the trial, every day reminding her of the loss of her child. We are born, we live, we die; it's universal.

Our original plan had been to go to Albuquerque. By the time we got to Gallup, New Mexico on the original American highway, Route 66, I was exhausted. We decided to find a motel and stay. This time we each got our own room. It's nice to have privacy every once in a while.

Thursday, 4 April 2013


It's starting out to be a tough day. I woke up after a very difficult night's sleep to the sounds of thumping and trampling on the floor above in the motel. As Ricky says 'What have the got up there, a dance floor?" I didn't get a good night's sleep, nor did Ricky. He is grumpy but then again he starts every day that way. I am grumpy too, something that comes from lack of sleep and general distress over the difficulties of getting a day started with ALS.

We drove from LV to the Grand Canyon yesterday, then onward further east through the desert. Last night we got to Tuba City late, at around 8:00 PM. It was a long, late day. It's tough to get started in the mornings; Ricky usually sleeps until around 10:00 AM, and I usually get up at around 7:30 AM. Most mornings it's okay, since I take that time to get dressed and write. This morning we both got up at around 9:00 AM. Now he's pissed off because I "bugged him to wake up early" and now he "has to sit around and wait". Patience is not his long suit. He gets that from his Dad.

When we got here, late, he was too tired to get all the luggage out of the truck. So this morning I had to dress in my dirty clothing from yesterday. When you are 22 this is apparently no big deal; it's a big deal for me. When I asked about clothing this morning he said "you can just get changed later". What he does not yet understand completely is that a simple task like getting dressed is a major event for me. I simply am not up to doing it twice in one day.

Now, rather than eat the free breakfast at the hotel, he wants to get fast food on the road so we can get going. This hotel offers a full restaurant breakfast. We would have to pay for fast food. It's easy to make that choice when you don't have to worry about money. Regardless of what I am trying to teach myself, I still worry about money. It's ingrained. This makes me grumpy too.

Now he is sitting on his bed, or rather lying on it, typing away on his computer. He is unhappy. Me too. It's going to be a long day. Pray for us.

Wednesday, 3 April 2013


I am an explorer, a wanderer, always wondering what is around the next turn in the road or point in the shoreline. I have always been this way, restless and ready to go. I just love the simple pleasure of the open road or open sea, the ease of get up and go, the joy of seeing something for the very first time. I am pretty sure it's genetic and that both parents contributed.

As children living in Stave Falls our pleasures were simple. We could explore the woods, fish in the beaver dam, ride horses, climb trees and just plain run around. With a dozen kids at home there was pretty much always someone around to play ball or tag. On a few occasions running was necessary to escape the wrath of an angered sibling.

One of the things we used to do in summer was walk the five miles to Stave Lake, past the main dam and generating station and on to the diversion dam. There we would scramble around the end of the dam, through the bush and down to the lakeshore for swimming. The big kids would jump off the dam while the smaller kids, myself included, would brave the chill water to swim out to the log booms.

Stave Lake, like many mountain lakes in BC, has a history as a killer. Every couple of years someone dies on that lake even now. As a kid I remember the locals talking about other kids who had drowned in the lake. People boating on that lake ran the risk of hitting partially submerged logs that could easily tip a boat. Others would find themselves in the middle of the lake when the weather turned and the wind swept down the lake fast and hard as a broom over tile, tumbling their boats or canoes, leaving them afloat in an icy lake in the midst of a darkening storm.

Yet when I was only 14 I asked my Dad if I could take our canoe and go up the lake, solo, for a few days. To my amazement, he said yes. So I packed and planned and prepared. On the designated summer day in question, we loaded the canoe and my gear into the truck and drove down to the foot of Stave Lake. My Dad helped me unload the boat and load the gear.

With a brusque "Be careful and don't do anything stupid", he helped me slide the whole shooting match into the lake. He stood there for a bit while I paddled off, then he hopped back into the truck and headed back to the 11 other children and the dozens of things that needed doing back on the farm.

It's important to remember that at 14, I was barely five foot tall and weighed less than 100 pounds. It was a strong 100 pounds, a result of cutting firewood, hauling logs, hefting hay and feeding livestock. Nonetheless, I was mostly a small boy, alone in a canoe on a dangerous lake, paddling off to places without communication or company. We had arranged my return for three days hence, although timing would be interesting since I didn't have a watch. Still, noon was easy to tell and mid-afternoon was a wide target.

I survived with stories to tell. Mostly it was uneventful, like a Boy Scout weekend only without any other Boy Scouts. I had food; I caught fish; I found shelter from a storm; I explored the woods and water. Years later I asked my Dad how he could let me do something that. He said "What was I going to do? Say no? How would that help you?" Then, in the way he did, so I could never be sure if he really meant it or not, he added the capper. He said "And besides, I had lots of other sons at home."

I was never sure what he meant. These days I don't care. His actions were most important. He showed confidence in my abilities; he showed trust my skills; he had faith in my survival. Maybe that's why he was so cavalier about the rest.

Tuesday, 2 April 2013

Hustler Heaven

I slept in until 10:00 AM today. In part that is due to my over-indulgence last night. In part it is due to my staying up until midnight last night. In part it is due to the fact that I simply can. As the days go by without a specific schedule or requirement, as the nights come on without my needed to be concerned with getting up in the morning, I find myself sleeping longer.

This is good. I have found that I need more sleep lately. Getting up has been very difficult for some time now, not simply because it is morning, but more with how difficult it is to get out of bed, get dressed and get going. Now, without the requirement, I am taking more time in that process. It still tires me out, but now I get to go back to bed for a bit in the midst of the process. I like that.

Both Ricky and I find the desert drives boring. Mile after mile of dust, dirt, cactus and occasional sage brush, a monotone beige, broken rocky ground. He slept through much of it while I drove. From Los Angeles to Vegas took about 4.5 hours, much of it done across that barren desert on the interstate at around 80 MPH. At one point I saw a CHP car sitting beside the highway. The officer had his radar gun at the ready and all the cars were zipping by. He must have been looking for someone doing over 90 because people were passing me and I was doing 80.

So now we are in Las Vegas, that city in the desert dedicated to removing cash from its visitors in the shortest and most efficient manner possible. It is the Holy See for gamblers, the Mecca for hedonists, a hustler heaven where moving bulletin boards advertise girls that will come to your hotel room and every corner store, mall and gas station has an attached casino. Even the airport has slot machines and when you land here, you are only minutes away from Las Vegas Boulevard, aka "the strip".

Our hotel room is on the 23rd floor in The Palazzo, right beside The Venetian. From our hotel window we can see pretty much the whole of the city, sitting on the brown, dusty plain edged by serrated, layered rocky slabs that push up and border the flat desert. You could eat at a different restaurant every night for a month and never leave the hotel complex. They want you, and your money, to stay indoors. The casino floors serve free drinks as does the club floor in the hotel. They want your judgement to be impaired. Mine certainly was!

Oh, and we came out ahead about $40 at the BlackJack table last night.

Monday, 1 April 2013

The Human Condition

It's April 1st today only ALS is no April Fool's joke. I wish beyond wishing and hope beyond hoping and pray beyond praying, yet each morning I wake up just a little bit worse. There is no funny punch line and the disease doesn't take time off for holiday weekends. Ask me how I know.

On the other hand, I am not the only one with challenges. There are two kinds of people; those who are facing immense personal challenges and those who have those challenges ahead of them. Challenge is a fact of life, just as are love, joy, happiness and excitement. My personal goal is to keep that in perspective.

Today I had breakfast at the Embassy Suites just south of LAX. Ricky was with me and we both enjoyed a hearty breakfast while planning our day. The hotel staff has gone out of their way to ensure I had what I needed and that I did not struggle with lineups or tables or carrying stuff. They were wonderful to me.

After breakfast I headed off to the Business Center, from whence I now type this missive. Along the way a woman asked if I would take a picture of her and another woman who I am pretty sure was her mother. "Sure", I said, "After all I am at the perfect height." From the seated position in the wheelchair you can take better pictures.

While focusing on the two woman, I noticed the older woman seemed slow and a bit off. Then I realized she was facing her own personal struggle. I am guessing it was a stroke. Now she, like me, was dependent on a child when she travelled. Now she, like me, had to be helped and guided and cared for. I watched them for a moment after taking the picture, watched the slow gait and the limited motion.

Given the vast panoply of human illness, ALS sucks. But other diseases and human conditions are no better. Imagine a person in the prime of life struck down by a stroke with irreversable damage. Imagine knowing that you would live for many years, perhaps decades, dependent on care and support, unable to live with any form of independance. That sucks too.

I know that people can recover from a stroke, or from cancer, or from lots of other things. I know they can live happy and fulfilled lives. I know that my condition will worsen and my disease cannot be cured. It doesn't mean I am the only one suffering.

It's part of the human condition.