Saturday, 31 May 2014

A Good Day

Yesterday was a good day; I'm pretty sure today will be a good day too. In a way it is kind of a shame that I write first thing in the day. The rough start to every day, the wish that it would not start as it does, the struggle to dress and get going, these things make for a tired and somewhat depressed state once I come to the keyboard. All days start difficult, but many, very many, end up pretty good.

What makes for a good day is usually a combination of two or three things, activities and events that remind me of a full and active life, a way of living that goes beyond the limitations of my wheelchair and disease. It's not just one thing; it is the combination of these things, a day with more than one focus, a day focused on something other than myself.

Almost always, good days involve other people. These are the days where I interact, engage in conversation, share stories and ideas, thoughts and feelings. I am a social person, an extrovert who truly comes alive in the company of others. Mine is not the solitary existence even though this chair and disease force solitude upon me on a regular basis. It's not that I must always have people around; indeed there are days when I just want to be alone. It is that my true self is best seen in the company of others, with the light of social activity lit brightly on me.

The need for social engagement does not always mean getting away from my apartment. Sometimes, as will happen today, the party comes to me. Today we are bottling wine, which is just an excuse to get together, share food, laugh, talk, make fun of one another, and generally have a good time. Yet there are times when I must get out, when the four walls of this apartment are a prison to me. These are the times when I go for a drive for no good reason whatsoever. When I can no longer drive, even going across the street to the mall using my power wheelchair will get me out. Once out, I am alive again.

A good day almost always involves accomplishment of some sort, the completion of important tasks in my daily life, the doing of things needing done. My friends tease me about my lists, yet I keep none written. They are mostly in my head, the things I know that I need to get done, or need to have in hand. Years of parenthood, consulting and project management have taught me the power of knowing what needs to be done, and gives me the satisfaction of still being able to do it.

Add these things together; people, activity, getting out of myself and my prison of ALS, getting something done. These are the ingredients for a good day.

Friday, 30 May 2014

The Crow

I lay abed alone this morn, scarce dragged myself from sleep,
Thinking I might stay here, this my place to keep.
I thought about the work and toil, simply myself to clothe,
Then I, with mounted effort, bade myself arose.

I am the man who cannot walk, the one who cannot stand,
Yet flung my useless legs bedside, my curled up toes to land.
Twist and turn and pull and slide, I wiggled into pants,
Then saw with hopeless, sad dismay, I sat in jeans askance.

On I went or went on me, compression socks atight,
I own two pair, and that is all, I wash them other nights.
My shirt I pull with tired hands, hands that were once proud,
And in the mirror, see myself, at once I sigh out loud.

But push I must, and push I do, to get the moment past,
For time is short, for me at least, I have not much to waste.
With push and lift I move myself into my waiting chair,
Its black and steel look back at me, an empty cruel stare.

Yet with its ease I glide along, across the wooden floor,
A simple push and off I go, it doesn't take much more.
Kitchen bound to break my fast, to eat just what I please,
Coffee, egg, cheese and ham, a tray across my knees.

Off once more I go a roll, a place to rest my eyes,
Where threatening clouds of grey and black roll cross the prairie skies.
I see them there beyond the pane, out and past my tree,
A slash of blue peeks here and there, to come and comfort me.

So now I sit, the birds a-chirp, singing me their song,
Then suddenly, and all at once, fleeing in a throng.
And black it comes, the bird of death, driving them from play,
Its hooked beak, its harshness speak, its greed to take away.

He hangs upon a branch or two, he doesn't see me yet,
He looks with hunger, looks around, to see what he can get.
Here I am, awaiting him, I sit alone and gaze,
Know I this, that it will come; the crow will end my days.

Thursday, 29 May 2014

Kindness All Around Me

I have a lot of kindness in my life. It is something that I am completely grateful for every day. There is not an hour that goes by when I am not reminded of the kindnesses given to me, or not receiving one right at that moment. These kind acts come in all sizes, from those that take but a moment and make such a difference, to those gestures that will stay with me for years, or for as many as I have, helping me in my daily life.

Each morning I awaken to see my floor, my walls, my bathroom. I switch on my lights, roll up to my sink, take a shower. Each of these reminds me of the kindness of my brother Jim, who did so much work here, my friend Mike who did the same, and so many of my other friends who pitched in when I desperately needed them, who stepped up to paint and clean and help. These kindnesses I treasure each moment, I am reminded of them each day.

There are the smaller kindnesses, the ones that are not so obvious, things like friends lifting me up and down the stairs each Tuesday night at our Trivia event, or when a friend drops by "just for a visit" but does a little shopping along the way, or when someone comes for dinner even though it isn't really convenient just because they know how much I love to cook and want their company. I am the fortunate receiver of these kindnesses almost daily, and they too mean so much to me.

Then there are the random, unexpected kindnesses of strangers. One day last winter I was in my power wheelchair, trying to cross the street. I was stuck in the snow, leaning on a dangerous angle, when two young men came across the street in the opposite direction. I asked them for help. Not only did they virtually lift my power wheelchair down the sidewalk slope to the road, but they walked me across the street to ensure I didn't get stuck on the snow in the middle or on the other side. While doing renovations, the mailman saw that my shower seat had arrived and saw how big it was, and how heavy. He took his personal time to go across the street to the Canada Post outlet in the mall where it had been delivered, picked it up and brought it right to my door. And there was the woman at Safeway who offered to bring my groceries home for me since I just live across the street.

Kindness is not always from those you know, not always from family or friends. Kindness is all around me. I am not sure if I would have learned this quite so strongly had I not been in this wheelchair, fighting with ALS. I am not asking for this disease; I don't want it. I want a cure. In the meantime, I really appreciate the kindness I have been given. Thank you all.

Wednesday, 28 May 2014

Guest Blogger, Beth Popa Castelvetere - I'm Pissed!

There is a very active ALS support community on Facebook, with many groups and a lot of information shared back and forth. It was in one of these groups that I first encountered a woman I now happily call an online ALS friend, Beth Popa Castelvetere. Beth is a young mother, not even 40 years old, with a young son and a husband, both of whom she adores. She is struggling with ALS.

Beth posted the following as her Facebook status the other day. I found it so powerful that I asked her if I could post it with her as the guest blogger for today. She kindly said yes. Here is what Beth has to say about her battle with ALS.

This will not be a typical post from me, just a warning. If you have specific views and are easily offended maybe you shouldn't read, if you read and get offended my apologies in advance, I hope it doesn't deter you from reading my future posts. Tonight, "I'm pissed." 

A year ago I was still working, driving, walking with a cane, now I'm in a wheelchair and can only bear weight to transfer. I'm pissed. We all die, yes. But I and the others with ALS are guaranteed a death so gruesome, each muscle will die we become paralyzed, unable to speak, swallow and breathe on our own, while our minds stay perfectly in tact. I'm pissed. Trapped with no place to go. I'm pissed. 

My son has to witness his mother's body deteriorate something so ugly and horrific, please don't say it will make him a better man. I'm pissed. It's May and ALS awareness month but I don't see one damn public service announcement on TV yet I see several times a day animal cruelty/shelters. Guess what ALS is what's inhumane. I'm pissed. 

ALS is named "Lou Gehrig's Disease" yet what awareness does MLB do CONTINUALLY? I'm pissed. We spend time and money thrashing each other's political, social and religious views when we could spend our energy and money on helping find treatments and cures. I'm pissed. 

My muscles wave through my entire body like leaves waving in the wind every minute reminding me it doesn't get better only worse. I'm pissed. I strived so hard to be healthy, thin, in shape prior to ALS, now I wish I was overweight and how my once "good body" is now the worst I could be. I should be fat. I'm pissed. 

I'm ashamed I didn't know much about this disease prior to, and still people don't know. I'm pissed. My list could go on...maybe another night. Don't feel sorry for me, it is life. And I'm pissed. If you want to help and I inspire you then DO SOMETHING. Inspire others, give to others, help each other, teach your children this way and hey educate others on ALS. Start somewhere just start. I'm pissed and I'm alive. 

Real facts. Real life. Real me.

Tuesday, 27 May 2014

The Ship Keeps Sailing

The last 24 hours or so have touched every corner of my emotional fabric, reached into every nook and cranny and crevice of my feelings, poked every sore, pinched every soft spot. I've dealt with fear and pain and sadness and joy, worried for myself and my family, wondered what I have done wrong, congratulated my self on what I have done right. All in all, ALS continues to be an exhausting roller-coaster ride, with higher highs and lower lows than are possible to imagine.

Yesterday morning I awoke to the Palliative Care Nurse calling to set an appointment with me; she is coming this afternoon. Yesterday afternoon the care workers came to exercise my body and clean my apartment. My friend Mike came over and we did a few mindless chores and errands. Then, as day wore into evening, I got word that another ALS friend of mine, Robert Boulton, from Edmonton, had died. This was unexpected, except that death is never unexpected for PALS.

I was immediately gripped with sorrow and sadness, knowing that another life had been taken too early. He was a young man, much younger than me, diagnosed with ALS on May 10, 2010, only a year earlier than my first symptoms. Instead of withdrawing from his diagnosis, he embraced it, attacking ALS with all the enthusiasm which was naturally his right up to his last moments, and all the strength that he had remaining. Yet the disease gave him no quarter, no respite, no grace; it stole his strength and his life, as surely as it is stealing mine. 

I went to bed last night wrapped in sadness and sorrow, pummeled by the day and by death. You see, other PALS have died in the last couple of days too. In fact at least one dies each day from the online ALS groups. It is the nature of this disease. Not even Bob expected to outlive the illness; he knew his reality just as I know mine. Yet we all live with a willing denial of death. Were it not so, we would all quit far too early.

Then, at 6:41 AM this morning, I was lifted from slumber by the message alert on my phone. It was my Mary daughter announcing the arrival of my new grandson, Quinn. He and his mother are both healthy and, at 9 lbs. 10 oz., I suspect he will do very well. The next generation continues to grow.

From one to the other, one gets off the ship, another gets on, and the ship of life keeps sailing.

Monday, 26 May 2014

Not Normal

There are things about living with ALS that are different, the kinds of things that one would not find in a "normal" life, even a normal life for a paraplegic, which is what I have become with the progress of this disease. There are things that are striking, that will never leave my memory, like hearing the diagnosis for the first time, the prognosis and projections, having to tell my friends in what some of them now refer to as "the night of crying", having to tell my Mom and Ray and my children.

Since those moments of striking abnormal, moments that stand like a pure black marble obelisk on the gentle white plain that was once my life, a beacon of difficulty, I have worked hard to make my life as "normal" as possible. The transition from walking to wheelchair, I told myself, was something lots of people go through. They still live a full and normal life. The loss of my career was simply retirement, something everybody does. The DVT and Warfarin were not all that unusual; even my son-in-law, near 30 years younger than me, had these kinds of issue.

I've tried to create a normalized framework around my life, one that recognizes what is happening to me while still letting me live a regular kind of life, a full life. I've tried to live with the internal lie, like the rest of humankind, that death was far from me. I've tried to pretend that it was at bay, that I could live as long as I wanted.

Then, every once in a while something happens, another dark shaft arises, striking from the depths to cast a black shadow, burdening the landscape of my life. When my Case Manager arrived with my first wheelchair and walker in preparation for what was to come, when I went to my first ALS clinic; these kinds of events are not normal, even in the most generous of contexts.

Today I got a call from Home Care; it was the Palliative Care Nurse. This is not normal. No matter who you are, no matter what illness or affliction you have, no matter how young or old you are, you don't get a call from the palliative care nurse unless you are dying. This is the kind of thing that steals my normal, that shakes me and reminds me that I am not just living with ALS, I am also dying from it.

When she called, we talked for a moment. Then, in a rather desperate attempt to preserve what normal I could, I said "I don't think I need palliative care yet." It's rather a pathetic try by me to preserve my internal myth of immortality. She replied "I don't think you do either, but it's probably a good idea for us to meet and talk about things, to make some plans." We agreed that she would come to see me tomorrow afternoon.

I can do this; I will do this. It is a part of my process, the process of living with ALS. It is something which must be done, something that I must do. I wonder though. Is this where I stop living with ALS and start dying from it?

Sunday, 25 May 2014

Writing Is All I Have

I am beginning to filter what I write, to be cautious about what I say here in these entries. I've started to keep some of the darker thoughts, the more challenging realities, out of my content. I am worried about this.

The why behind this troubling development is simple. People near me, physically and emotionally, are reading my blog. When I write something difficult, if I tell of something challenging, they assume it means they should be doing something to help me, checking up on me, finding out if I am okay. Lately I have begun to worry about what I say, what response it might trigger, how it might cause them to worry, to think I am crying out for help or need some sort of response or action on their part.

The problem is that their desire to care for me is taking away my ability to be honest, to be frank about how I feel and what this journey entails. I write because it is therapy, because it helps me. If I have to curtail what I write, to limit my thoughts and words because I am concerned about the response of others, then I can no longer write. In the perversity of this disease process, to try to help me, to respond to what I write as if it is a clarion call, is probably the worst thing to do.

Some of my friends and family living both near and far seem to know this already. They read, I know they read. They comment to me in our social meetings about what I have written. They ask how I am doing. They confirm that I am still alive and well, that the dark spots are just that, spots. Then we get to go on with our lives as normally as possible. I truly appreciate these people; these are the same ones I call when I need help with something. They are there when I need them. They know that helping me does not always mean helping me, that sometimes the best help for me is to be able to vomit out my feelings in text, to let them fall away from me like poison, healing me in the process.

I understand how difficult this disease is for people who love and care about me. It is the most difficult thing to imagine, the pain that they are going through. As one of my friends once said, "This is our disease too." The best therapy for me is to write, to tell my story, day to day, in my own words. This is my cure, my defeat of illness. If I have to self-censor, the cure weakens. Writing is all I have; don't take it away from me.

Saturday, 24 May 2014

Just Plain Tired

I am tired this morning, exhausted beyond all exhaustion, even after sleeping more than a dozen hours. I am tired enough that my eyes can barely focus, tired enough that even typing these few words seems to take a herculean effort. I did not want to get out of bed this morning, the tendrils of sleep and weariness within my body reaching up and continually pulling down on my eyelids. Even here, as I sit before the keyboard, my eyes want to close and my body wants to rest.

This is not the tiredness that sleep defeats. Sleeping longer does not make it better. Nor is it the tiredness of clinical depression. It's not that I would not get up; it's that my body simply cannot make it. Yet here I am, out of bed, typing on my keyboard, against all odds, awake, barely. I did not get up because I wanted to. I got up because I knew I should, in spite of the defeating combination of fatigue and frustration. My bed continues to call me. I am not yet dressed. I could still go back after typing for a bit.

My tiredness follows me everywhere, from bed to bath, from bath to kitchen, from kitchen to table. As I turned on my coffee maker this morning I looked at the dishes on the counter. I put some in the dishwasher but lack the energy to finish the task. I put a coffee cup under the spout of my coffee machine and hit the start button. Then I rest my head on my hand, elbow on the counter, and close my eyes while I listen the machine gurgle and growl, spitting my caffeine booster into my cup.

When it stops, I open my eyes and languidly lift the cup from machine to the opposite counter where the door of my fridge dares me to open it. I gather the strength, open the door and slide out the nearly empty, small milk jug. I no longer have the strength to easily lift the big ones; I really don't need that much milk anyways. I pour milk into my black potion and put the jug back. With a burst of energy I roll back to this table. While waiting for hot coffee to cool, I type, and every few moments rest my head in my hands, seeking to find energy from somewhere deep within.

This is the exhaustion of ALS. It is nothing else. This disease takes more than just your muscles. It takes your strength and vitality. It forces you to focus the energy that you retain into small accomplishments, doing those things you can still do, leaving behind the things you cannot. For today it means I need to rest. I have cancelled all my social activities for the day. Right now, I am just plain tired.

Friday, 23 May 2014


I've already been busy in the kitchen this morning; I was busy yesterday too. For dinner last night I made Baked Pork Chops in Mushroom Sauce; yes, real mushroom sauce with real mushrooms that I sauteed first. I also made a massive layer salad with lettuce, tomatoes, cucumber, strawberries, mushroom slices and cheese on top. Alongside I made up some Cinnamon Rice in my rice cooker; it's easy, it's just regular rice with a cinnamon stick tossed in.

Today I am making Chicken Korma in the slow cooker. Later this afternoon I will make Chole, a kind of chickpea curry, and some saffron rice. There's plenty of salad left from yesterday, so I think dinner will be in good shape. None of these dishes is terribly difficult to make, unless you are in a wheelchair and can\t stand up to reach the high shelves in the kitchen. That's where planning and a good grabbing tool come in handy.

I like to cook. It is, for me, a process of creation, to be able to take a batch of disparate ingredients and, along with appropriate spices and cooking methods, make something that people enjoy. The ability to build something from bits and pieces that you can serve to others is a basis of real accomplishment for me. I don't cook for myself; in fact if left to my own devices, alone at home, I rarely cook. It is for others that I enjoy this exercise in food preparation.

It's long been a social grace, during times of joy and times of sorrow, to offer food. When a child is born, you bring food so the mother doesn't have to cook. When a family member dies, you bring food so others can focus on their grief instead of their kitchen demands. When you to a party, you bring food. When you host a ceremony, you provide food. It is the universal way of expressing support and care for others around you.

When the Occupational Therapist was here yesterday, along with a student learning the profession, I offered them an iced coffee. As I reached into the freezer for ice, she asked me if Home Care had been doing meal preparation for me. There are a lot of meals in my freezer, all in sealed plastic containers. I said "No, that's all my own cooking". I said that with pride, pleased that others would assume I cannot, and yet I still can; pleased that I can prove to the professionals that there are still plenty of things I can do for myself.

There will come a day when I can no longer function in my kitchen. Slowly my freezer will empty of my own creations, their places taken by meals made by others for me. When that day comes, I will miss cooking. For now I plan on doing lots of it. Cooking makes me happy.

Thursday, 22 May 2014


About 15 years ago a friend of mine asked me "Do you think we are past halfway?" I asked him what he meant and he went on to say that, at our age, at that time our early forties, statistically speaking we were halfway through our lives. I commented back that, given modern medicine and health care, there was no reason we would not live into our mid-80's, so yes, we were at about halfway.

On November 22, 2012 I sat in a hospital room while a very well educated neurologist told me that I had ALS with a life expectancy of about 36 months. Suddenly my "halfway" was about age 30; there was a fair bit of reasonable doubt that I would make it to 60. He asked me if there was anything special I wanted to do in my life. Given the kind of life I have lived and the opportunities I have had, I said "not really". His answer was "Well, if there is anything, do it sooner rather than later."

Today is a new kind of "halfway". Today is exactly 18 months to the day, and nearly to the minute, from getting that fateful diagnosis, that harsh estimate of 36 months. Since that day I have lost my ability to walk, my ability to stand, my ability to spend summers on my boat and fall traipsing in the bush. I have lost my job and have had to commit most of my remaining capital to creating a living space where I could still function.

It seems appropriate that today should be that halfway day, filled as my day is with visits from occupational therapists, sizings for new slings and lifts to help my failing arm, having my wheelchair serviced and getting a "free wheel" attachment to make my trip to Europe easier. I am not declining as quickly as expected. I seem to have plateaued for many months, with only small changes in my arm strength. I can still drive; I can still travel; I can still cook and entertain. There are changes, continuing changes, in my arms but they are so small as to seem immeasurable. I can see them; others probably cannot.

So am I really halfway? I think my prognosis may be somewhat longer than the next 18 months. I am hoping for an additional year. I am hoping to be one of those PALS, the 20% who get past that five year wall. My first symptoms were in the spring of 2011, three years ago. I have already beaten the 50/50 odds on three year survival. With any luck, I will see 60 yet.

The reality, of course, is that none of us knows the number of our days. All I know for sure is that my halfway was somewhere around age 30. Where I am now is a different kind of halfway, a halfway into the unknown. Instead of looking at that halfway, I am focused on today. Each day is a gift from here on out, as is has been up to now. In my case, halfway may be the whole way. I'm okay with that. Half-way is better than no way.

Wednesday, 21 May 2014

Predicting Trouble On Air Canada Rouge

I am headed to Europe in a couple of weeks, actually 18 days to be exact, but who's counting. I love to travel, to explore and re-explore, both the known and unknown. This trip includes stops in London, Paris, Milan, Florence, Santorini and Athens. It will be an amazing adventure. I am prepared already for the potential difficulties of this trip, including things like no washroom access or cobbled streets. I am ready for the challenges of wheelchair access in these older European cities.

While I am ready for the ground portion of the trip, it is the air portion that worries me. On the ground, if one way doesn't work there are always other ways. If you can't get into a restaurant or shop, there are always other restaurants or shops nearby. On the other hand, flight choices at a reasonable cost are limited, and once you are on the plane you are a prisoner until they let you off.

Fortunately a great many planes these days have on-board wheelchairs and accessible toilets. However my life's experience is that what some describe as accessible is anything but. Add to that the challenge of space on an airplane and I doubt that there will be wheelchair access to the lavatory. I am already considering my alternatives, including having my urine jug with me at all times, or possibly looking into a catheter of some sort for when I am on a long haul flight.

Our route will take us from Calgary to Toronto and then Toronto to London. We are doing most of Europe by train except for the leg from Rome to Santorini, another airline experiment, but one that will only last 90 minutes. I can probably handle that; I already have on other flights. On the longer haul flights, Air Canada assures me there will be washroom access. To be honest, I don't really believe them. These flights are only five or six hours in length, so I think I can manage. I've even paid the extra for "premium seating" so I can have a bit of extra legroom.

It's the flight from Athens to Toronto, our homeward bound leg, that worries me. It is an 11 hour marathon aboard Air Canada Rouge, an Air Canada brand already beset with bad press and poor reviews. I've paid for "premium seating" on this flight too; I'm not expecting much. Premium seating on AC Rouge is the same as regular seating on almost any other airline. They jam the passengers in on these flights, declaring it a "vacationers airline", as if people on vacation don't want or deserve comfort. The food service is less than regular Air Canada flights and they probably charge more for a glass of wine on board.

If there is going to be a problem, I predict it will be on the Air Canada Rouge flight.

Tuesday, 20 May 2014

I Like The Opportunity

As I sit here this morning, or more correctly this afternoon as the noon hour has long past me by, preparing to type my daily missive, I notice my left arm, or more particularly the muscles in my left arm, near vibrating from fasiculation, twitching and jumping about as the nerves try desperately to maintain contact with their partners in life, the muscles they manage. One would think I should be annoyed about fasiculations and at a very surface level I am; they are a constant reminder of what is happening to me, to my body.

On the other hand I am grateful for them, for these twitches as nerves fight madly to maintain their relationship with my muscles, their union and connection responsible for my mobility and ability. These twitches are reminders of how hard my body is fighting to keep itself functioning, how much it is working to give me the strength I need to stay alive and able to live. With neither wish nor interference on my part, my body fights to live, demanding that life be won in the battle in spite of the inevitable outcome.

I think about that a lot these days, about the inevitable connection between life and death, how there is no life without death and how death is so important in bringing about new life. I wonder how many people really ponder how much around them must die so that they may life, how the plants and animals they eat were once living things, how the mere act of walking on a grassy path can cause death to the minute creatures living there. For me to live, something must die. When I die, the molecules and atoms, shaped as they are into muscle and bone, will decay, or in my case be burnt, and once again return to the gaia that is all around us.

Life and living is a wonderful thing, an experience made all the more wonderful by our ability to understand and appreciate it. It is all the more incredible when I consider the fleeting nature of all that we are, how short our years are, how fragile our bodies are. To have even the opportunity to live defies all odds, except that life is so persistent were it not for me then there would be other life in my place. I am a wonderful experiment in existence, short in span, surrounded by a world experience, a universe that's one big experiment in life, unremitting life.

As persistent as life is, so is death. Without one you cannot have the other. If I could, would I have given up the opportunity at life to avoid the necessity of death? If I could, would I wind back the hands of time and stop my birth so that I would avoid this end? No, I think not. I have had a chance at life, a chance that is shared both by so many and yet so few. I have an opportunity, a moment in the sun, and I like it.

Monday, 19 May 2014

Pain In My Left Hand

In the fall of last year I began to notice a persistent pain in the bicep of my left arm. It wasn't a lot of pain, nor was it widespread. In fact I could point to the location of the pain. The pain was there at a low level almost all the time but became especially apparent when I made heavy use of my left arm. After a while I noticed a similar pain in my right bicep, only at a lower and weaker level. Just as with my left, the pain in my right arm increased when I worked the muscle hard.

A couple of months after the pain started I went to the ALS clinic and the neurologist noticed a loss of muscle strength in my left arm, but not in my right. ALS had started to affect my upper arm muscles. Since then I have probably lost about 25% of the strength in my left arm. My right arm is beginning to show signs of muscle loss as well although the weakness, while there, is not yet as apparent as my left arm.

I am coming to learn that the pain I feel in the muscles is a precursor to actual muscle loss. It is the harbinger of the loss of nerve connectivity, the warning that something is about to happen. Like dark clouds warn of rain, this pain warns of loss to come. The pain is not difficult to manage. I take nothing for it. It's just enough to tell me that, in a few months, things will begin to change. After the change begins, the pain doesn't go away immediately, just eventually.

It is important to know that this pain is not consistent with all ALS patients although pretty much all PALS suffer from some sort of pain associated with this illness in spite of what the literature says about it being a painless disease. Nor can this pain be dismissed as "arthritis" or "just getting old"; it is specific and related to the advancement of ALS. I know this to be true.

This morning I got up and noticed that same pain in my wrist and at the base of my left thumb. It's not the aches and pains of aging, nor have I overworked my hand or wrist or thumb. It is a warning, telling me that ALS has decided where to go next. I have a few months, maybe less, when weakness in the thumb will be measurable, when dexterity will begin to fail, when my grip will weaken and I will become even clumsier. I hope I am wrong; I am probably not.

Sunday, 18 May 2014

Betty's Run

I suffer from fatigue. My body is fatigued, my nerves are fatigued, my emotions are fatigued. There is another kind of fatigue stalking me these days - donation fatigue. The world around is filled with worthy causes these days, people asking for help with almost every thing you can imagine. With the advent of professional fundraising companies and online donation sites, almost every moment of my life is filled with messages from someone requesting my financial help, or at least that is how it seems.

When I was doing renovations I worried a lot about money. I wondered about cost and how much I would have left. I even considered one of those online fundraising campaigns. I didn't, for three specific reasons. First and foremost, I realized that many of those who would support me are those who already support me, my friends and family, those closest to me who have already given me so much. Second, there are so many good causes out there and mine was really all about me, a selfish kind of thing when I already have so much. Third, I just didn't feel all that good about asking for help when I had not yet exhausted all of my own resources.

Still, in the midst of all this donation fatigue there are some things worth asking, some causes sufficiently important to me to get above the noise of it all. Obviously ALS is one of these, a cause so personal to me as to raise its head tremendously above the crowd of other causes. Each of us has one of these, a personal cause driven by personal impact. Either you have had cancer or know someone, you have had a special injury or unique health challenge or someone you love has it; for each of us there is that cause that touches us directly.

With ALS, it is sufficiently rare that many of us have never been touched by it. For many, that touch is only peripheral; a friend of mine's Dad had it or something like that. For me, I have ALS. So, in the midst of all of this donation fatigue, I am asking for help in raising money for research and treatment for ALS patients.

This year, for my second year, I am taking part in the ALS Society of Alberta's major fundraising effort, Betty's Run, on June 8th. Given the nature of ALS, it's unlikely that I will participate in many more, but I am hoping. This year I have once again formed "Team Terrific" and I have my own fundraising page. My hope is that you will help me help others. It is unlikely that there will be a cure in my lifetime but I have already benefited from the support and care of the ALS Society.

If you are able and would like to support me in this effort, just click on the link to Team Terrific or to my fundraising page. Some of you will have done this already; I thank you. Others will do so too; I thank you. Others will suffer from donation fatigue, just as I do, or will have other causes to support. I understand; there's a lot out there.

Saturday, 17 May 2014

Milk In My Coffee

It's difficult for most people to see the weakness in my arms; I can still wheel my wheelchair and can still pick things up that most people would find challenging to lift. I have, through my life, been blessed with a strong body, a body able to do whatever I asked of it. That has changed with ALS and even though it might not look like it, my arms are definitely weaker than they were six months ago.

The thing is, this increasing weakness in my arms has not made a difference in my FRS so far. That's because the FRS that most of us use is fairly "coarse grained". The limited number of data points lack the ability to show smaller, less obvious changes. So it looks like my FRS has not changed in some time even though my arms are getting persistently weaker. What will happen is one day I will reach a threshold, a place where one or more of the data points gets triggered and there will appear to be a sudden change. The change is not sudden, the tools just don't measure the slow slide.

Of course the FRS is a "Functional Rating Scale", rating the ability of my body to function. Given the solid pre-existing strength in my arms and the comparison with a general population on which the scale is based, I started with a pretty big "Functional" reserve. I was really strong, so this new normal for me is probably not all that much different than normal for a lot of people. It's just a new normal for me; I still function quite well in my arms in comparison with the general population.

The best way to show the slow loss of strength in my arms is through a couple of recent incidents, things that have been happening lately that make the loss clear and visible. First there is my ability to wheel my wheelchair up slopes and slants. I am simply not able to quickly make some of the slopes I used to do easily. Now it takes longer, making me work harder. Now I am grateful for help with even the easy slopes, the slopes that seem "invisible", like the cant on sidewalk or the grade of a parking lot.

Then there is the soap dispenser on the dishwasher. The other day I was telling one of the new home care workers that the lid on the soap dispenser was difficult to close. She put a soap packet in the dispenser and with apparent ease closed the lid, something that took a bit more effort for me. I am still functional; it's just not as easy as it once was to close the soap dispenser lid.

Finally there is the milk jug test. It used to be easy for me to lift a 4 litre milk jug. Now it is difficult. These days I find the difficulty in lifting the 2 litre jug of milk about the same as it used to be for me to lift a 4 litre jug. I am losing arm strength but it's not all bad news. I am still highly functional; I can still put milk in my coffee.

Friday, 16 May 2014

All These Things

This morning I got up early, at least early for me. I was awake at 8:30 AM, getting dressed by 9:00 and in my chair by 9:30. Of course I have yet to put on pants but there is a whole 'nother story to that, having to do with my uncertainty about that to wear, sweatpants or jeans. I will be forced by the clock to make up my mind in a moment or two.

You see, I am about to head out to get fitted for compression socks. You can't just walk into a store and buy these things; you have to be fitted and the compression level has to be correct. It's another one of those additions to my life, changes in what I wear or how I live, for which I feel no immediate affection. I have been wearing temporary compression socks for a few weeks now and I admit that they work. The swelling in my feet has gone down; my ankles are almost once again visible.

Unfortunately the livid purple colour will never go; in fact the pooling of blood in my feet has begun to create a continual discoloration as the iron leaches from the blood into the surrounding skin. I have a permanent yellow-brown tint to that skin, a kind of faux tan or simulated nicotine stain. Once again, another side-effect from ALS, not a result of ALS itself.

Some days I get tired of all this nonsense, just wishing it was over and I didn't have to put up with so much crap. Some days I wonder what might happen to me if I stopped taking all the pills, got rid of the socks, stayed in bed and just waited for an outcome. Of course in the end no amount of medication or socks or wheelchairs or lifts will stop the disease. In the end I will ultimately discover what happens; I already know.

I shall go and get the damned socks. I will pay what must be paid for this new thing in my life; fortunately 75% of the cost is covered by Alberta Health Services under the Alberta Aids to Daily Living program. Still, I have a choice; I can do without or go with a temporary solution for a while longer. In fact I may have to go with "tubigrip" socks for a while yet if the socks I need are not in stock. Regardless, it's just another thing in a series of things. I am tired of all these things.

Thursday, 15 May 2014

Staying Home

My apartment is hot. I am not sure what it is about the alignment of this apartment with the sun, the way the building is insulated or whatever, but this building retains heat, far more than you would expect. The heat in my apartment is off, completely off, yet this morning I am sweating already from the limited sun shoving its way through the filter of overhead clouds.

Even in the depths of winter this apartment remains warm, heated as it is on all but one surface. I have people living below me, people living above me, people living on both sides, and a heated hallway on the inside. The outer wall, east facing as it is, gets plenty of sunshine and warmth, even on the coldest days of an Alberta winter.

Last year I didn't notice it, mostly because I wasn't here for the late spring and summer. Last year, in my last flinging attempt at something vaguely like normal, I headed out to my boat in May, then after coming home for a couple of weeks, returning to the sea again in late June, the first trip a preparation and trial run, the second the start of my summer sailing season. We all know how that ended. Even after the heart attack on July 4th, I was not ready to give up on my summer exploration so I headed to the East Coast on a 6 week driving exploration of the rest of Canada, financed by the sale of my boat. That put me back in Calgary in September, long after the heat of a prairie summer.

This year my disease has taken my boat and much of my financial capacity. Thanks to the generousity of a friend, I am headed to Europe in June. After that it will be a return to summer in Calgary, with weddings to attend and Stampede making the city one giant party in early July. August will be hot, mostly, although you can never be sure here next to the Rockies. I am going to have to buy an air conditioner to keep my place cool.

I am not complaining about summer; I love it. Nor am I complaining about hot weather; I love that too. I'm just getting used to the idea that places not by the sea, days not spent on the foredeck of my sailboat, weeks spent at home in the summer will be different than I am used to. Staying home during July and August this year is a first in many years. It's just another change that I have to get used to.

Wednesday, 14 May 2014

Fashion And The Wheelchair

Part of dressing up worked well yesterday; I felt good about the way I was dressed and enjoyed the time in nice clothes. Part of dressing up did not work well yesterday; I discovered that the swelling in my feet means none of my good shoes fit anymore. It was not a real surprise that my shoes didn't fit; I expected that even though I had hoped for something vaguely resembling success.

My expensive, fancy shoes that I bought a few weeks before my diagnosis have only been worn a couple of times. They are "fashionable", one pair an Italian design with long toed fronts and the other a classic brogue. Both were purchased to fit; neither does these days. The more durable Walmart shoes I wore almost every day to work are a larger, more generically sized shoe with bigger uppers. At least my right foot could get into the right shoe, albeit with substantial discomfort, so much so that I didn't even bother with my left foot.

After an series of attempts and adjustments, I had to admit that these shoes no longer fit my feet. The changed shape thanks to lack of walking and standing along with the swelling from edema mean my feet are too big for these shoes. So it was back into my trusty running shoes, the footwear that is now an integral part of my daily ensemble. Unfortunately the whole effect of nice clothes is somewhat diminished by running shoes.

Another lesson was brought home to me yesterday, once again. I have often wondered why people in wheelchairs tend to dress down so much, myself included. I was reminded yesterday that being in a wheelchair is a fundamentally dusty and dirty business. There's a lot of dirt out there. It covers the ground and everything else with a thin layer of dust, something we work hard to eradicate from our homes. Unfortunately outside there is no eradication; it's a dirty world out there.

Dust and dirt are a challenge in the wheelchair because you use your hands for mobility, touching the rims and wheels which in turn come in close contact with the ground beneath. When you walk, you lift your feet and move about, keeping your hands free, as well as most of your body, from the dirt and dust below. Only the wind brings it up about. In a wheelchair the very motion brings your hands into close contact with the grime of daily life, touching it with every push of the wheel.

I wear gloves to keep my hands clean. Unfortunately the dust and dirt collects on my gloves. When I rest my hands in my lap, tired from the constancy of pushing or taking a break while others push me around, that dust transfers from my hands to my lap, making my pants dirty in the process. No matter what I do, the area of my pants where my hands come to rest is always dirty. Some pants, in particular my darker coloured jeans, hide the dirt well. Others, like nice dress pants, show the dust and dirt in all its glory.

Dressing up while in a wheelchair means you get your nice clothes dirty all the sooner. So the best thing to wear is clothes that hide the dust and dirt, or a highly unfashionable lap pad or cover. Add to that the challenge of getting dressed sitting down, and suddenly dark sweatpants seem a highly desirable option. Fashion and wheelchairs just don't make a good pair.

Tuesday, 13 May 2014

Dress Clothes

I got dressed today. I don't mean the simple act of putting on clothes. I mean getting dressed into the clothes that I used to wear when I worked, the clothes that fill my closet, now supplanted by the perpetual blue jeans and polo shirts that have become the fundamental tools of my wardrobe these days. I got dressed into "dressy" clothes. I can't say why, I just did.

Perhaps it is in rebellion to the loss of my career thanks to this disease. Almost every PALS I know has had to leave his or her chosen profession thanks to the exhaustion and limitations of this illness. The uniform of my work life meant a lot to me, identifying me as a professional, as a person with unique skills that were wanted in the business world. While I still have those skills, my body cannot deliver on what my mind proposes. Perhaps getting dressed is just my way of saying to myself that I am still that professional, still that person with unique and useful skills. It's my body that is failing, not my mind.

Another alternative is that this need to dress up is a rebellion against the constant dressing down that I have come to. With no reason for anything in particular, I just don't bother to get dressed up. The sadness is that in not bothering to get dressed, I am giving up a part of my identity. Perhaps today is about reclaiming a bit of myself through the clothes I wear, demonstrating that this disease can't take it all, that I can still look good, even in my wheelchair. The blue jeans and polo shirt can stay in the drawer for now.

Personally, I think it is about the pain. Lately I have been having a lot of it, in my back, in my knees, in my arms, and now in my shoulders. It is perverse, this pain. It comes when I lie down, not when I sit in my wheelchair. It comes at night, wakening me with discomfort. When I lie down stretched out straight, my knees stop hurting but my back starts to ache. When I curl up my knees, my back stops aching by my knees stop hurting. The rest of me just hurts from moving my legs around half the night.

I am not going to give in to this part of ALS. I will find a way to make a life even with this discomfort, to live each day as much as I can in spite of the aches and pains. There are lots of things I cannot do, but I can still dress decently every now and again. This morning I chose to dress up. I am going to put on some nice dress socks and perhaps even my dress shoes. I will forget about the pain for a moment, and look decent. I might even get a haircut today!

Monday, 12 May 2014

A Care Plan

It's only been a month or so but Home Care seems to be finally getting itself organized. The home care nurse is at last bringing a "care plan" to my apartment so that the home care personnel will know what to do when they get here. So far, visit after visit has been cancelled or very short because there is no care plan. Now, at least, there will be a reason for them to be here.

I see this as one of the most significant results of the loss of a case manager. Not having a case manager means I am left to my own devices in handling the vagaries of our health care system. It is not that I am ungrateful for the care itself, I most certainly am. It is simply that care becomes more challenging to manage and more inconsistent without a coordinated approach. Left to be my own coordinator, I am at a loss in many cases to understand both the services and the system. So things persistently get delayed or go off the rails.

There are a lot of challenges with this or any other serious illness. For me, any kind of care has limited benefit in terms of disease prognosis or cessation. With ALS, care is not about cure; it is about quality of life. The professionals in this area don't talk about extending life as much as they do about making sure that you have reasons to live and good quality of life.

For me, there is a lot of "why bother" creeping into my daily existence. Why bother getting up? Why bother getting a haircut? Why bother cooking breakfast? Why bother getting dressed? Well, oddly enough, having a care worker come in on a consistent basis will help with a great many of these things. I will bother to get up because the care worker is coming. I don't want the care worker to find me naked, so I will get dressed. If I don't feel like making breakfast, I can ask the care worker to do it for me. As to the haircut, I'll get there.

A good care plan involves a lot more than simply the actions of the care giver. If done well, the attention itself improves the quality of my life. Having someone help with my exercises to keep my muscles loose will reduce the cramping and pain when I sleep. Having someone tidy the kitchen and empty the dishwasher means I feel better about working on food preparation.

I know my friends and family care about me. The time has arrived when I also need someone to help care for me. I'm not happy about it; it is another stage in my illness and it must be this way. I am happy that it will improve the quality of my life, or at least I hope it will. Let's see what happens over the next few weeks.

Sunday, 11 May 2014

The Pain Gangs Up On Me

For a disease where pain is not supposed to be a problem, this disease sure has its fair share of aches and pains, and not just mild inconvenience pain, but the kind that wakes you up at night and makes you groan and cry. Last night was a good example of that for me. I didn't sleep well thanks to the pain in my back and my right knee.

The back pain started a couple of days ago. It's like the muscles in my lower back were seizing up from over use or rebelling from being overtaxed, like when I picked up a tree a couple of years back, before ALS. I was showing off in hunting camp and picked up this monster log. In the process I hurt my lower back. In those days, the halcyon times of health and strength, I could just go to bed and by morning it was better. That's what happened; that's what I did. I was fine the next morning.

These days are not quite so kind to my body. I am fairly sure this back pain is from loss of muscle strength and difficulty maintaining verticality. I've noticed of late that I wobble when I sit unsupported, a result of weakening muscles in my lower back and in my butt. These muscles still work, but they are leaving me, slowly and steadily. This increasing weakness means that when I do use them, for example to sit in the shower or when transferring to my bed, they get strained and stressed. Then they seize up at night, causing me this wonderful back pain. Technically it's not the ALS causing the pain; it's the use and overuse of muscles that can no longer do the job.

The other issue is that this pain is not evident immediately. The cramping and crying of muscle takes place while I sleep, while the muscles experience the release of rest yet at the same time are stretched linearly as I lay down, as opposed to being positioned for seating. So it gets painful as I sleep.

My knee pain is opposite side of the same coin. My knees are in one position almost all day. I move them about periodically just to unlock them, but they sit bent in one place all day long. At night I get into bed and stretch out my legs, using my arms and hands to move and position them. Then, as I sleep, my knees lock into the vertical, the ligaments and joint seizing up from the change in position. The swelling and collection of fluid thanks to edema doesn't help either.

To move them once locked is to jab a giant needle into my knee. Fortunately, once moved the pain dissipates quickly. The pain is not a direct result of ALS; it is a side benefit.

So last night both parts ganged up on me. Pain in my back and pain in my right knee; lots of it. It was an uncomfortable sleep.

Saturday, 10 May 2014


Katie is coming today, relocating from Toronto to Calgary. She prefers to be called Kate, especially professionally, and in that profession she has taken a contract with Alberta Health Services. Kate tells me she feels she has better opportunities here in Calgary; I think her relocation here may be something more. Regardless, I am thrilled she is moving here, closer to me. I am thrilled that I will, once again, have one of my children nearby. They are an important part of my life, even at this distance.

In thinking of her this morning, I grabbed another of the cards she made for me Christmas before last. I still have a few remaining and use them to nudge myself into writing when my thoughts fail me or my motivation is lacking. The card today asks about things I appreciate, both in my life and in myself. It's an interesting thought, one we don't have often enough, that appreciation for self is as important as appreciation for those things external. I believe that you cannot take care of others if you are not taking care of yourself, you cannot love others if you cannot love yourself. This is a new corollary, flowing from those thoughts; you cannot appreciate others if you cannot appreciate yourself.

I appreciate, beyond measure, all those people around me who give my life meaning and make it full. I appreciate, more than simple words can say, the level of care, affection, and even love, that comes from those in my daily life. It is these friends and family who give me a reason to live, providing me with the motivation to keep going. It is these people who ensure I am never truly alone, checking in with me on a daily basis both in person and through emails, texts, phone calls and social media. The people in my life are all that I have and without them I would be truly bereft.

There are a great many other things I appreciate which still remain in my life, even though I will eventually lose them. I appreciate my ability to travel, good food and wine, books and good TV, a nice bed and a warm, comfortable home. In fact there are so many things I appreciate that there simply is not enough room to list them all. But mostly, above all other things, it's the people in my life.

About myself, I appreciate my own generousity and compassion for others. While not evident often enough, I like that I can share both my emotional self and all that I have. I like to share, to give to others as best I can, to be kind to others as much as I can. While I most certainly fail on a regular basis, I appreciate that I have enough life and energy in me to try again, and again. I don't believe in giving up on life, on growing, on learning. I have an opportunity each day to live, love, learn and change. That is who I am, and I appreciate it.

Friday, 9 May 2014


Most times I can manage the emotional distress that comes with having ALS. The anger that rages inside of me is not all that difficult to keep under control on any given day. It's deep in the background and I don't want it up front, messing up my daily life. It's there; it's just not in charge of me. Then there are times when I simply cannot bear it any longer, when the anguish leaps up and drives itself to the front, times when I simply cannot control the tears.

This happens to lots of ALS patients, where they go through times of grief and anger and fear and emotional pain. It shows up in massive, tearful displays. Some even have an expression for this; they call it the "ALS Ugly Cry". All that we can no longer do, the future that we measure in months instead of years or weeks instead of months, the limitations of our failing bodies; these become front of mind, top of mind. These become the forces that drive our emotions, at least for a bit.

It's hard to let this anguish out even though it is just beneath the surface, barely below the other emotions that I have in my daily life. The process of tears and crying just isn't something easy for me, other than that caused by PBA, something that is now chemically managed in my bizarre body and brain. The process of releasing this monster needs time and prompting, it needs help coming out. I need to cry; it's just not easy.

I have episodes like this periodically, perhaps every couple of months. I cry. I cry like you wouldn't believe. I rage in anger and tears. I wail in grief. Then it is gone; the beast is released and it runs from me, wild and free, escaping my emotional management. Unfortunately there is little real release in this. Unfortunately the carthartic effect is short. I have to get up the next day and start living again, living with ALS.

Thursday, 8 May 2014

Late To Rise

I am not a fan of mornings; they've never been the best part of my day. In fact in my younger years it was not at all uncommon for me to work much of the night, getting to bed as the sun rose, sleeping until well past noon. Even when I was in school I worked better at night than I did during the day. Now that I have no framework for getting up early, no reason to rise in the mornings, I once again find myself drifting further and further into late bedtimes and midday risings.

When we first got married, Carla struggled with this, insisting that, as husband and wife, we should go to bed at the same time and get up at the same time. When my working schedule demanded early risings and late nights in those early years, she pushed me to change these patterns so they matched what she felt was "normal". Since I wanted to have a marriage that made her happy, I worked and found ways to change things, although not without effect on both my income and my career.

As the years moved on and I began private practice consulting in training and skills development, I was often working on a project at home with a client on the east coast or in Toronto. It was not at all unusual for them to want meetings early in the day, not just for them but for me too. In order to work well with my clients, I once again adjusted my natural rhythms, often arising very early for an important phone call. Fortunately most of my work was on my own schedule, so I once again drifted towards pulling "all nighters" and working afternoons instead of mornings.

Over the last few years I have worked on an "office schedule" here in Calgary, a nine-to-five pattern with variations based on the needs of a particular project. Once again my life was regulated by the needs of others, by the demands of work and business. I awoke as late as I could in order to make it to work on time, often skipping breakfast or showering at night just so I could laze about for those last few minutes before tumbling into my day.

Now this has all changed. Now I get up when I want to. I am finding less and less reason to get up in the mornings, especially given the amount of sleep I now need. I am finding it easier and easier to stay up later, watching TV or reading a good book. My rhythm is mine once again, and it looks like one that would make Benjamin Franklin unhappy. But what the hell did he know anyway?

Wednesday, 7 May 2014

Home And Away

I am home, returned once again to the quiet and familiar of my modest apartment here in Calgary. Just as much as travel and exploration is exciting, coming back to the safety and stability of home is comforting. To sit without agenda, no need to move or be moved, no requirement to get up and go or pack up and leave, this is the calm that home delivers.

This is not to say I don't like travel and adventure. If you know anything of me, you know how much I love to see a new place, to re-explore an old place. To know me is to know I am an adventurer, forever seeking the road not yet driven, the site not yet seen. I love to go where others have not considered going, to do the uncommon thing, to see the place less traveled. What is more true is that my love of adventure and travel have made home all the more precious.

If all of life were adventure, there would be no adventure, for without the knowledge of hearth and home, adventure simply becomes the norm. In the same breath, to never leave home, to fail to explore even the closest of adventures around you, is to learn little, to live in fear of the unknown, the unexpected. The power of home is its predictability and safety; the power of travel is its unpredictability, the unknowns, the risks. Both of these things, in measures that fulfill, mean more than each on its own.

My home is a meaningful place to me, a place where I belong, where my few possessions surround me, I possessing them rather than them possessing me, so it's easy for me to both be here and to leave. My home is a place where I have a place, where I fit, not just in these four walls that surround me, but in my community and social life as well. There is a peaceful rhythm to home, where each day is known and each night is similar. It is where I fit, where I belong.

Travel and adventure is such a powerful experience, made all the more powerful not by its plan and perfection but by it's lack of plan and imperfection. The excitement is when it takes you to a place unknown, to see that which you have not yet seen, the wonder of arriving in a place where you never thought you could or would. The amazing part of it is that this adventure can take place as close as a short drive away, or as far as halfway around the globe. The new is not just the far, often it is the near as well.

I will head off to Europe in a few weeks, an adventure for sure. Yet this adventure will take me to both the familiar and the unfamiliar. Soon this kind of travel will be more than I can do. Then my adventures will become closer to home, to the mountains and backroads where a friend can drive me for an afternoon. And even then, returning home will be as good and fulfilling as leaving it.

Tuesday, 6 May 2014

Tapping My Toes

It was a tough drive home last night, through near white-out conditions and a spring blizzard on the stretch from Field in BC to just before Cochrane here in Alberta. It was a long, brutal stretch of driving mostly borne by Micheal; after Canmore he had had enough so I took over for the last stretch of tough driving. We finally got in after 1:30 AM and it was after 2:30 AM before I finally got to bed.

With Mike driving, I had plenty of time to look out the window and think. I spent much of the drive, especially after he took over in Salmon Arm, thinking about my week, my children and grandchildren, and my life in BC. I was sad; sad about what I was missing, sad that I would not get to enjoy being a grandfather for long. I was tired, and that added to my sadness.

Still, the day itself was not a sad day. It was only those moments of reflection that took me down that dark stretch. Looked upon in its entirety, my day was anything but sad. It was filled with funny and joyful, laughter and love. I got to spent a bit of Grandpa time with Charlotte, something I have never really had the opportunity to do in the past.

Yesterday, before we left Abbotsford, Meaghan and I had some paperwork to complete at the insurance office. When I arrived, Charlotte was excited to see me, thrilled to climb on my lap and say "I love you, Grandpa" and go for a ride with me. She noted our similarities; "I have a buggy and you have a wheelchair." She asked about why I needed a wheelchair and I simply replied "My legs don't work", an insufficient answer at best for a young mind that continually asks why. She asked, and I went on to respond that my legs were sick and didn't work, to which she responded, "But my legs work", as if that statement settled the matter. I was later to discover that it did not.

We went into the insurance office to complete the paperwork. My part consisted of signing, so on completion I asked Charlotte if we should go get hot chocolate while Mommy did her paperwork. "Yes", she said, "we can go now." It was not so much permission as instruction.

We went off to the coffee shop, her sitting steady in my lap as I wheeled us along. We discussed cake, a subject on which she was more than agreeable. So in we went; I ordered drinks, Charlotte got a Rice Crispy Square and I got a piece of Carrot Cake. We sat and discussed a great many things; why Mike was here, where I lived, how she would like to come with us to Calgary. Then the subject of legs came up again.

At this point she simply announced "My legs work, Grandpa, but yours don't." Not wanting to be completely bested by a three year old, I, having my right leg up and crossed over my left, pointed out to Charlotte that parts of my leg worked. "See", I said, "I can tap my toes", moving them up and down, my shoe tapping out an unknown rhythm.

"I can tap my toes too, Grandpa." Charlotte then reached down with her tiny fingers and tapped the toes of her boots, announcing gleefully "tap, tap, tap, tap".

I had no answer for that. She had me. What's more she had taught me a lesson. Just because I see the world and describe it in one way doesn't mean she, or anyone else for that matter, has to see the world the same way. She certainly could tap her toes. As I immediately realized, so could I, in more than one way.

I love children. They have not yet constructed the walls and windows we use to frame our world and protect ourselves. They simply see things and say it as they see it. I think I would be a good Grandpa; I am pretty sure both Charlotte and Rose will be wonderful grandchildren. They already are.

Monday, 5 May 2014


It's been a good week for me as a father. I got to see Meaghan and Charlotte while in Vancouver; I got to see Mary, Rose and Albert while in Victoria. Last night after we arrived in Abbotsford, Ricky and I went for a couple of beers at Moxies. This coming Saturday Kate is moving to Calgary; I get to pick her up at the airport. Children and grandchildren, plus Mom and Ray too, all in a few days. I don't know when this will happen again; I am glad it's happening now. In fact it continues; I'll be meeting Meaghan and Charlotte again this morning, albeit to do some paperwork and business but it's a good thing nonetheless.

Coming to Abbotsford is always problematic for me. I don't like being here; it reminds me too much of unhappy things. Yet here is where two of my children live, in the same house with my ex-wife, a woman and a house I hope never to see again. Here is where one of my grandchildren lives, also in the same house with her grandmother. I am jealous that she sees her granddaughter daily while I see her only periodically.

Once again I wonder about my decision to stay in Calgary, so far from children who are obviously so important to me. I am thrilled that Kate is moving to Calgary; she will be near and I will get to be a Dad again. I talked to Ricky about this last night and he said I was right to get out of Abbotsford. He calls it "a soul sucking hole." It's clear that he doesn't want to be here, yet he is trapped by history, circumstance, and cheap room and board from his Mother.

It is the classic dilemma with kids; sometimes the best way to help them is to make things harder, not easier. Sometimes to get them to fly, you need to make the home nest a bit less comfortable. This is certainly happening to Ricky. Some of the frustrations he is experience with living in that house are the same ones I experienced while living there. Meaghan has them too at times. It makes me wonder who is helping who in this scenario.

Ricky will be airborne one day, probably sooner than later. He worries that he will become successful after I am gone. I told him not to think that way, that I was happy knowing he was happy, that I was confident in his ability to make is own decisions and make his own way in life. I believe in my children. They're good kids. I miss them; I am sure they miss me too.

Sunday, 4 May 2014

The Last Time, Again

This is our second day in Ucluelet. It is also our last for this trip, and perhaps my last forever. That's part of the problem for me these days, and on this trip in particular. I've begun seeing things as "the last time I might do this", begun to start looking at things as if I might never see them again. Of course for some thing this is always true. Today is the oldest I have ever been, and I will never again be as young as I was yesterday. On a more practical note, this may be the last opportunity I have to visit Ucluelet, or maybe not.

I remember seeing my Dad this way in the last month of his life. His goodbye was short and sharp. There was no uncertainty for him. The last weeks of his life were certain; cancer was taking him and he knew it. Thanks to my brother Adam, my Dad got to spend time seeing things and doing things that meant something to him; going fishing, seeing the mountains, spending time on a boat. Thanks to my own unique long, slow goodbye, I am doing these things for myself so far, although Mike has been a great partner on this trip. Soon I will need help to do these things I may not do again.

Today's adventure will be a short one, or at least that is the plan. Our intent is to check out of our room and head over to Nanaimo, about a three hour drive, or perhaps a hour tour rather like the Minnow. The road between here and Port Alberni was a night drive on our way in. Today it will be a daytime drive, exposing to us the dramatic cliff and lake edges along which the highway runs, bordering Kennedy Lake, and then taking us through the mountains that make the backbone of this island, the western-most mountain range in BC, the one people forget about, thinking this island is all shoreline and gentle forests.

Once in Nanaimo, we will be forced to make a decision. Do we go onward, across the ferry to Vancouver, or do we stay the night in Nanaimo after a short road day? Either way, we are compelled to stop in Nanaimo for afternoon coffee so that Mike can have a Nanaimo Bar in Nanaimo. That's a lot of Nanaimo's in that paragraph!

I am not sure if this will my last visit to Tofino or Ucluelet. I am not sure that I will ever have the opportunity to make this drive again. I'm not going to worry about it, at least not too much. After all, nobody really knows when it's their last time for anything. At least I get some warning. At least I get the opportunity to think about it, to drink in the experience, to live for today, here in the now.

Saturday, 3 May 2014

Two Days In Ucluelet

It's cold and wet here in Ucluelet. Of course that is no surprise in this rainforested coast, where the Spanish Moss hangs limp and wet, high in the branches of the cedars and firs dotting the shoreline, where everything is green and alive with moisture, where even the sea creates its own kind of dampness as it reaches its glistening black rock barrier. It is raining; of course it is raining, the rainy season is not yet over. Much like winter in Calgary, the winter rains here hang on desperately, seeking unending dominion.

Our hotel room looks out over the rocky shoreline of a small bay, more like a cove. The edge is rugged with rocks, patched with areas of grass and small bits of sand, laced with logs shoved ashore by the unceasing motion of wind and wave. The diamond drips of rain hang onto the railing as I look out the window, protected from the small wind by the cover above. How did they get there? The rain here gets into everything outdoors, much like the sand in the Arabian desert gets into everything there.

Our hotel has been a bit of a disappointment. Mike called ahead to ensure there was a room with wheelchair access; they said there was. Mike asked the all important question as to whether or not there was a roll-in shower; they said there was. Unfortunately the only rooms so configured are their one-bedroom suites, selling for $280 a night. Regular rooms are half that price. Furthermore these rooms are far down at the end of the building, with much less view than a standard room. Still, we booked it.

We arrived late, checking in at around 10:00 PM. Our adventurous drive had taken us through all the back roads and logging roads from Victoria through Port Renfrew nearly all the way to Bamfield and then out to Port Alberni. From there we crossed the rugged twisting highway along Kennedy Lake and out to the narrow Ucluth Peninsula that is the home of Ucluelet. This is the southern end of the Pacific Rim National Park; Tofino is the much better known northern end.

After checking in, we began to relax, unpacking as we could. Mike is sleeping on the foldout couch in the living room. I, as a gesture to seniority and sleeping late on my part, get the small master bedroom, the one where my wheelchair has almost no room to turn around. Once we figured that out, we checked out the bathroom. There certainly was a roll-in shower. It even had one of those plastic shower chairs in it. Unfortunately there is not a safety bar in sight. The transfer from my wheelchair would not only be unsafe, it would be downright foolish.

Once again a hotel fails to understand the basics of wheelchair access. They certainly thought about it, at least with a roll-in shower. It would appear that those thoughts did not include safety bars. I plan on talking to the manager. Once again I expect that nothing will change. After all, I am only here for two days. On the other hand, the setting is beautiful. I am indoors, warm and dry. The adventure continues.

Friday, 2 May 2014

The True Adventure

I've just spent the last three days visiting with my children and grandchildren, along with my Mom and Ray. I've had a granddaughter read me a story and sit with me to talk about toys. I've had a granddaughter insist that I sit with her and watch Toopy and Binoo. I've seen them laugh and heard them chatter, watched them play and seen them run to their mothers and fathers. I've loved every minute of it.

One of the greatest sadnesses for me in this disease is that I know, with a reasonable degree of certainty, that I will not see these precious children grow into adults, that I will miss their first day of school and their graduation, that I will not be there when they choose husbands and have children of their own. This, and so much more, will happen long after I am gone.

One of the things I like to say about my life is that I have "lived the kind of life people write books about." I've stood on the sands of the Arabian Desert, sailed my small boat out into the open Pacific. I've fished the Arctic Ocean, the Pacific Ocean, the Atlantic Ocean, and the Caribbean Sea. I've hunted big game in the high mountains and plateaus of BC and Alberta and had it hunt me back. I've traveled this continent from top to bottom and east to west, and touched the soil of almost every other continent. It's been an amazing life, filled with wonderful adventures.

Yet the life that has been most important to me has been my life at home, my family and my children. All I have done pales in comparison to a small child sitting next to me, sharing thoughts and wants, playing games and telling stories. I have had, and still have, four wonderful children of my own. I was there when they were born; I've seen them grow into adults. Now they are having children of their own. This is the journey in life that I will miss the most, the adventure that I most regret not having the opportunity to take.

Today I will go on another adventure, up to Tofino and Ucluelet, out on the Canadian edge of the Pacific Ocean. I will see the seas pound the shore, hear the skewling of gulls, watch the white foam of breakers leave their mark on the rocks and sand. Yet this will be minute, miniscule, tiny in comparison with the laughter of my grandchildren. They are the true adventure.

Thursday, 1 May 2014

Pool Time

It's summertime here in Victoria, the flowers in bloom, the warm sun shining, a light breeze blowing. It was 24° C yesterday; we needed the air conditioning on in the truck as we drove the easy stretch from the ferry to our hotel. Micheal has worked a wonder and come up with a hotel that offers a roll-in shower for me. This morning, after writing, I plan on a relaxing shower.

As we arrived yesterday I called Mary and asked about getting together. She suggested that she and Rose come to my hotel and go for a swim in the pool. I wondered about this, as Rose is only 2 years old and Mary is about 8 1/2 months pregnant. But it was what she wanted to do. I said "Sure". I picked her and Rose up at her doctor's office, near where she lives, as she had an appointment late in the afternoon. Rose has not been sleeping well lately, waking up several times a night, and Albert needed a break. He stayed home to rest while Mary and Rose rode with me to the hotel.

Mary and Rose got into their swim suits and we all headed for the pool. It took barely a moment for me to realize that this was a terrific idea, a wonderful thing to do. Rose is a water baby, near fish like in her comfort with the water, with swimming, or at least her version of it, with splashing about. She leapt into the water, landing safely in her mother's arms, giggling and laughing, yelling with joy. She kicked and splashed, spouted and bubbled, and generally had a great time.

It eased the barrier between us as well. I was the keeper of the towel and her bottle of milk. Whenever her face got wet, whenever she needed a towel or a drink, she would clamber over the edge of the pool and come running over to me for the required element, whatever it may be. Then, quick as she could, it was back to the edge and into the water, trusting in her Mommy to catch her and keep her safe.

I had a wonderful time, seeing all this energy and fun in this small child of my child. I could not go in the pool, yet I enjoyed this pool time as much as she did. It was a wonderful idea.