Saturday, 31 August 2013

Stop Curing Me

In July when I foolishly thought I could still spend a summer on my boat, Ricky and I pulled into a little place called Genoa Bay. A woman was tending dock and coordinating tie-ups. We got to talking after Ricky slung me out of the boat. Most people were interested in that process and how we managed. Then she asked about how I ended up in a wheelchair. I told her. She replied, "You can get acupuncture. They can cure ALS with acupuncture."

My response was that I didn't really think that was the case at which point she launched into a dissertation on how "eastern medicine" could cure all kinds of things but "western doctors" didn't want to know about it because it would prove that they didn't know everything. She went on about the conspiracy of big companies in the west and how they withheld "traditional" medicinal ideas because they could not make a profit on them.

I was polite. I did not ask her why Mao Zedong died from ALS, something the Chinese Communist Party kept hidden for many years, in spite of having access to all the traditional Chinese medicine he could ever have wanted. I did not point out that most western doctors would be ecstatic over any treatment they could offer for ALS given the frustration this disease caused them, no matter where that treatment originated. I did not ask her the simple question, how if she, an acupuncturist, could cure so many evils, why was she docking boats in Genoa Bay instead of helping a suffering world?

Another of these encounters happened in the hotel lobby as I checked in last night. It happens on a regular basis, people saying I should do this or that and it will help with my ALS. Yesterday it was another of my favourites, the "massage" message, where people say something like "You should see a massage therapist. My massage therapist does wonders for my back and legs." I tend to say "I'll trade you. You can have my legs and I will go to your massage therapist." Another challenge is my food intake. Once again the well meaning say silly things, like "You need to change your diet. That will make a big difference in your quality of life", assuming things like organic carrots will cure every illness known to mankind.

There's other stuff too, people talking about exercise for my upper body as a way of prolonging my life, or "specialized therapies" or "Lyme Disease" or "toxins in the environment", as if they knew the answer, as if they thought I had never researched a thing about this disease. All they are really telling me is how ignorant they are about ALS, that they haven't done any real research into this dreadful conundrum.

I have done the research. I am a science kind of a guy. Give me outcomes that show improvement and I will accept the inputs, whatever they may be. The numbers matter, data matters, studies with proven, consistent outcomes matter; good information matters, bad information is harmful. Anecdotes mean nothing; people have an amazing ability to misinterpret outcomes, often ascribing miraculous results when in fact nothing really happens at all. It's called the placebo effect.

Yes, I want hope. Yes, I want to live to see my grandchildren grow. Yes, I want to sail again, marry again, live again, love again. Yes, I want a cure. But please stop trying to cure me with hocus-pocus, unproven, psuedo-science answers that your Aunt Mabel used to use. All you are doing is demonstrating how little you really know about ALS.

Friday, 30 August 2013

A Bend In The Road

Yesterday was a long drive. I left Labrador City early, at about 8:00 AM. About 10 minutes later I crossed into Quebec, into the Eastern Time zone. That meant I was on the road at around 7:00 AM Eastern. The trip through to Baie-Comeau took until 2:00 PM. My original plan had been to stay in Baie-Comeau for the night but when I looked at the clock and realized the Les Ecoumin ferry, about 2 hours down the road, had a scheduled 5:30 ferry to the south shore, I thought, "Why not?".

So here I am on the south shore of the Saint Lawrence River at Riviere-du-Loup. I got here at about 8:00 PM last night after what turned out to be a 13 hour marathon. The driving part of that was only 10 hours; I spent an hour an a half waiting for the ferry and the same amount of time crossing the river. Today I plan on exploring the Eastern Townships of Quebec.

The most interesting part of the drive yesterday was over the gravel road that is Quebec Route 389. Parts of it are paved but large portions remain rough. The term "road" barely applies; it's more a track than a road. Large portions of it a very lightly graveled; mostly it's dirt. The finished portions, though hilly and greatly in need of repair, are mostly straight and well engineered. The unfinished portions are a serpentine slither through the back woods. It looks for all the world as if the road contractors scoured the country for the drunkenmost catskinner available, supplied him with endless whiskey so as to ensure no segment of straight entered the road, started him at the Fire Lake Mine, pointed him towards Labrador City, and said "Have at 'er".

The road has more twists than a John le Carré novel. The road roughly, very roughly, follows the path of the railroad; the engineered, planned railroad with minimal twists, turns, rises and drops, covering mostly the same route in a sedate, level manner. This snake of dirt manages to cross this railroad not once, not twice, not three times, but nine times! Each crossing is attended with its required squaring up to cross the tracks and a stop sign as these crossing for the most part are un-signaled. And remember, this is the main road to the mines, so it hosts all kinds of large trucks whose drivers seem to feel that sharing the road means you watch out for them, not vice versa.

Still and all, I made it. I am out to what we laughingly call civilization. At least I should be able to get full service gasoline here, maybe. I certainly haven't been able to get a room with a wheelchair shower yet, something I could readily get in the wilderness of Goose Bay, Labrador.

Thursday, 29 August 2013

Labrador City, Ugly To The Bone

Have you ever been in a place that was so nasty, so ugly, so unwelcoming that you got up early in the morning just so you could get out of town sooner? If not, come to Labrador City. This has to be the ugliest place I have ever been. It is definitely not a tourist town. While the people may be nice one-on-one, as a group their main message seems to be that they want to get out of town as quickly as possible, and so should I.

As you arrive in Labrador City, you get a sense of the town by its main architectural feature, the mine. Built in the 1960's by the Iron Ore Company, whose most famous president was Brian Mulroney who later went on to become Prime Minister of Canada, the town takes the industrial architecture of the mine and stamps it on virtually every other building in town. Tin and concrete warehouse looking structures house everything here, from the schools to the hospitals and even the shopping malls. I'll bet you Brian never actually lived here.

The housing is equally stamped out in square, small, yardless utilitarianism although some credit must go to those few locals who have typical family homes with yards. At least they try, or rather some of them do. The rest have given up to the ever present dust in summer and snow in winter.The predominant colours are grey and greyer. The roads have all the planning of a battlefield and the idea that someone in a wheelchair might one day come to town seems to have completely escaped the good burghers of this dirt-encrusted encampment.

On arriving at the hotel here, aptly named "The Two Seasons", for there is nothing in this town between summer and winter except an afternoon where the wind blows the leaves from the trees at the autumnal end and another afternoon where the trees leap to leaf again in the spring, one parades past a barrage of posters and pages on the wall with the litany of hotel rules, the most oft repeated being the demand that guests "CLEAN YOUR FOOTWARE AT THE FRONT DOOR". Dirt from the mine seems to be the key issue here, not guest comfort or service.

The mall here is equally bad, a tin-clad box enlivened only by the signs from Wal-Mart and Canadian Tire, the cornerstone tenants; it hosts the Tim Hortons too, along with the only place in town serving draught beer, all with doors that open only on the interior of the mall. The ramp is not unreasonable and there is handicapped parking, I will give them that. When you get to the entry doors, aside from the lack of a wheelchair opening button, the doors are all 32 inches wide, making entry with a 30 inch wheelchair a knuckle-scraping squeeze. And there are two sets of doors, the better to keep out the dust and snow, along with several yards of "mud mat", deeply set rubber mats that make progress all the more difficult.

Buying gasoline here is well nigh impossible. The sign on the station says "Full Service" and prices are at a premium. However full service here does not really mean full service. It means they pump your gas buy you must get out of your vehicle and go inside the store to pay if you have a credit card. If you have cash, the attendant will carry it inside for you. The problem with going inside is once again the ever present fear of snow and dirt; all the gas stations have 8" curbs and no wheelchair access. So I cannot get inside to pay, unless I get cash from the nearby ATM, the one inside the mall with the impossibly narrow doors.

This morning I plan on taking a different approach. I am going to let the attendant fill my gas tank, then present my credit card. When he says "You have to come in to pay", I will show him my wheelchair and ask him what he might suggest. Most likely, given that even those with the weakest intelligence can work in the mine here rather that as an attendant at the gas station, he will look at me blankly and simply say, once again, "you have to go inside". It will be interesting to watch.

Wednesday, 28 August 2013

Happy Valley - Goose Bay

Yesterday I drove for 8 hours on a gravel road. It's difficult driving, especially when the road is cut and carved through the Labrador portion of the great Canadian Shield. It was 8 hours of ruts, bumps, and shakes; 8 hours of focus on a road where distraction would quickly lead to disaster, where the price of inattention is high and even careful driving takes a toll on man and vehicle.

The Trans-Labrador Highway is one of Canada's last remaining wilderness roads, where hours can pass without traffic and where distances are marked in hundreds of kilometers. The landscape along the way varied from tundra to taiga to boreal forest to full on timber country, all set in low mountains and hard rock. Yet it is not a lonely road. There is traffic, occasionally. There are grading crews maintaining the road bed. There is construction of new roadway on the Goose Bay end. Before the road turns inland, there are side roads to rough and ready Labrador fishing villages nestled deep in the long bays and fiords of the Atlantic coastal shore.

The drive gave me little time to think. Each curve demanded attention, and there were a few. I drove as quickly as I could. While the speed limit is 70 KPH, it would be fair to say that I may have exceeded it along the way. It is interesting to note that at 100 KPH, a full sized truck begins to "float" over the gravel, rather like hydroplaning over water. Corners at that speed can be interesting. Meeting other vehicles, with the attendant dust clouds from the dirt road bed, is equally interesting. Flying forward at high speeds with the roadway obscured by a fog of dust can turn a moment into a white knuckle terror. Then the dust settles, and off you go again.

I saw no wildlife yesterday in spite of countless signs warning me about caribou and moose. There is little "high country" here so it is unlikely they are up away from the heat in the valleys. Remember, to a moose, 20 degrees Celsius is plenty warm. Perhaps they have learned to stay away from the dust and noise of the highway. Some would suggest I was lucky to have missed them; others have not been so lucky.

Today I head from Goose Bay to Labrador City. I am told that the road is "mostly paved", all but about 100 kilometers. I look forward to it. Tomorrow I will do the run from Lab City to Baie-Comeau, mostly unpaved. Today will be the hole in the doughnut.

Tuesday, 27 August 2013


I slept poorly again last night, this time not due to shoulder or knee pain, but stomach cramps. I don't know if it was the poutine on the ferry or the beer before bed, but something was, and still is, bothering my belly. I've awoken, after such sleep as I could get, to a misery of a day. There is a grey mist blowing in off the Atlantic, a cold shower lightly soaking and seeping into everything out of doors. It's cold; last night the mercury fell to below 10° Celsius. The short Labrador summer is drawing to a close.

My life is slipping into winter, all to quickly moving from summer to autumn. The seasons of my life are drawing to a close. This emotional realization is difficult, like a weight on my spirit. It bears down on me, holding me from so many things. Each day I see a bit more slip away, I feel a bit lessened by this damnable disease. Sometimes the emotions if this illness are harder than the muscle damage; sometimes the psychic damage is worse than the physical.

The other night I had a dream, an odd dream as so many of them are, the free association of a mind unfettered by the annoying realities of wakefulness. In that dream I was still happily married to Carla, and we were looking for a new house. We needed the house because I was in a wheelchair. This was my first dream where I was no longer walking, the first dream where even my subconsciousness recognized the grim realities of my condition.

When I hit the road yesterday, I drove straight to the Labrador ferry terminal. Then I spent a half-hour just sitting there, wondering if I was doing the right thing, taking off into a remote region where the roads were all gravel, where the people were few and far between. I left, thinking to myself that this was just too risky. It was not a completely new feeling for me, to react to my fears and leave an adventure behind, giving up a new and untraveled road for fear that I might not find a place to sleep at night. I reacted to my fears, something I don't do lightly. Nor was this a panic reaction. This was a lengthy internal battle.

I left the ferry terminal and drove for 45 minutes, continuing this internal debate, the argument of fear over adventure. Then I stopped and asked myself, what would I do if I did not have ALS, if I was not in a wheelchair? I would simply sleep in the cab of my truck, wearing an extra sweater and jacket. So why was I letting fear run my life? These were problems I could solve.

I turned around and headed for the ferry terminal, got on the boat, and here I am in comfortable motel on the Labrador coast. I did not completely give in. I got on the Internet and phone, and for the first time on this trip, I have reservations for the next couple of nights, one in Goose Bay and the next in Labrador City. Fear is not winning; I am responding to risks with a mitigation plan. I am in Labrador, driving a road on which I have never been.

Monday, 26 August 2013

L'anse aux Meadows

I am a bit of a control freak. Some of you who know me well may be laughing right now; I get it. Still, if there is anything I have learned in the last few years it is about the chimera of control, the myth that you can actually make things happen or not happen. ALS in particular is teaching me more and more about that every day. At best I can influence things, nudge them along, shape them somewhat; true control is impossible and even partial control is rare. Mostly we just careen through life, bouncing off of events and occurrences as they happen. Yesterday I drove from Corner Brook to L'anse aux Meadows. Nothing happened; it was just a great drive. And I saw a moose, finally.

To understand the geography of Newfoundland, take your left hand, palm up and make a fist. Then extend your index finger, pointing straight out. This, in gross oversimplification, reflects the shape of this island. Port aux Basques is in the bottom left, at the base of the ball of your thumb. Corner Brook is at the beginning of the crook of your thumb. L'ans aux Meadows is all the way at the tip of your index finger, on a peninsula ridged by the Long Range Mountains. St. John's, the capital of the province, is on the other end of your fist, tucked in just where your little finger touches your hand, at then end of a superbly protected Atlantic harbour. It is as far from Corner Brook to L'anse as it is to St. John's, about 500 kilometers either way.

The road to L'anse aux Meadows follows the coast almost all the way, the ocean ever on my left. At the very tip of the road, just as it is about to run into the Belle Straits, where the coast of Labrador comes into view some 25 miles away, the road crosses over from one side of the peninsula to the other, taking you to St. Anthony and L'anse aux Meadows. It is a six hour drive with amazing ocean views all the way.

L'anse aux Meadows has always called to me, ever since first hearing of it in grade school. It is the only documented Viking site in North America, an overwintering station where the traders of Greenland and Iceland came to stay while gathering wood, a precious commodity on their treeless islands, and trading with locals for furs. They stayed for only about a decade, then retreated first to their home islands and eventually into history.

The name "L'anse aux Meadows", the conflation of English and French that you see a lot of here on the rock, is most likely an Anglicization is "L'anse aux Medea", Medea or Medee being a common name for French fishing vessels. This area is called the French Shore; through treaty it was where fishermen from Quebec and France could land on English soil. It's an interesting place with interesting people and interesting history.

Sunday, 25 August 2013

A Poor, Bald Rock

It's early here in Corner Brook, Newfoundland. I awoke even earlier, driven out of slumber at 4:00 AM by the pain in my shoulder and a full bladder. Fortunately I managed to get back to sleep for a few more hours. Here in Corner Brook I am in the Newfoundland Time Zone, that odd little snippet of standard times zones, the system of time adjustment developed by Scottish-born Canadian Sir Sanford Fleming  in 1879 in order to solve scheduling problems for the CPR.

In Canada, thanks to the CBC's unwillingness to do a time adjusted schedule for this thinly settled province, everything is "half an hour later in Newfoundland"; it's time zone is UTC - 3:30, three and a half hours earlier than Greenwich, England and a half hour later than the rest of the Maritimes. Canada's other time zones are Atlantic, Eastern, Central, Mountain and Pacific; each of them separated by an hour. In other words, 7:30 AM here in Corner Brook is 3:00 AM back in Vancouver. It's a big country and I am closer to London right now than I am to home.

Joey Smallwood, the premier who negotiated the permanent ferry link as an article of Newfoundland's joining the Canadian Confederation in 1949, famously, or infamously if you will, described Newfoundland as "my poor, bald rock". "The Rock" has become permanentem referuntur here in Canada when discussing our eastern-most province. It's an apt description that springs immediately to mind as you arrive on the ferry from North Sydney, Nova Scotia to the small outport of Port aux Basques, NL. The solid rock shore rumbles up out of the Atlantic, sparse and bare at the shoreline, covered with only a bit of moss, some short grass and a few frightened bushes swept hard by the incessant winds. Not all of Newf is barren like this, just lots of it.

As you leave Port aux Basques the highway weaves along the coast, just enough inland to find a fairly steady run of rock and bog on which to build a road with minimal bridging. One of the advantages of moving inland is that there are trees, safe from the battering wind. Here, as in the rest of the Maritimes, the trees are short, spindly affairs suited only for pulp. In fact the main industry here in Corner Brook is the pulp and paper mill, a struggling survivor often held aloft by direct government subsidy over the years in order to provide employment to the folks on the rock, especially after the cod fishery collapsed.

I plan on exploring up to L'anse aux Meadows today. It's where the Vikings landed sometime around 1,000 CE, around the same times as others of their ilk were ravaging much of Europe. They didn't stay here long. Like Joey said, it's a poor bald rock.

Saturday, 24 August 2013


I have decided to go to Newfoundland. After all, I may never be able to make a trip like this again so I am going to go all the way. This will mean that between last July and now I will have visited every capital in Canada, including Whitehorse and Yellowknife, driven every major highway in Canada, taken my truck from the Arctic Circle to the Gulf of Mexico, and, oh yes, been diagnosed with ALS. That last little detail never seems to leave me.

There is a cost to this decision and I had to think about it. First of all, there is the money. It will mean another $1,200 - $1,500 to cover ferry, food, fuel and lodging. Secondly, there is the fact that I an really starting to miss home, family and friends. Doing this trip alone takes a fair bit of personal pushing. In some ways it would have been much easier, and much less expensive, just to have stayed at home, enjoying my summer in Calgary. Yet both of these costs seem small in comparison to the outcome. It also helps that those very friends and family are encouraging me to go.

I've made a value decision, comparing the cost of this decision with the costs of other potential decisions, and the with the benefits of this decision. Each of us makes these kinds of value decisions. We decide daily, almost by the minute, if the "cost" of something is worth the "benefit". I don't mean this in purely financial terms. I decided that the cost of staying with my wife, in emotional terms more than any other, was just too high when compared with the cost of leaving, the negative consequences which I knew would be there, both financial and emotional. I paid the price of leaving even though I am deeply committed to the concepts of marriage, commitment and responsibility.

For me, the price of going to Newfoundland is missing my friends and family for another four or five days, as well as the extra money; I spend about $250 to $300 a day on the road, all costs in. After sleeping on it, I realize that there may come a day when I really need that money, but there will never come a day when I will regret this one last time on "the rock".

Money can be made; I might go to work again in the fall, I might win the lottery, I might write a book and sell a million copies. You never know. What I do know is that life is short and precious. The cost of not living, of not doing what I can when I can, of some useless sense of self-denial because of some potential risk at some point in the future, that cost is just not worth it. There is a price for everything, and everything has its price. I have decided that this one is worth it.

Friday, 23 August 2013

A Night At The Beach

This is one of my rare afternoon blogs. I could talk  about my drive on the Cabot Trail today but I want to save that for tomorrow. For now, it might be good to let you know how I ended up blogging so late today. It certainly wasn't laziness on my part, nor was it lack of planning; I have no plan to lack. It was, as it happens, a nice happenstance.

Yesterday when I left Halifax, I stopped in at the ALS Nova Scotia office and had a terrific chat with Kim, Terry and Joe. We talked about ALS research, how people are living with this infliction, and how ALS patients are in general more positive and supportive than those with other illnesses. Of course the last part of that sentence is pure opinion; I have no facts to back it up other than my personal observations. As I have said in the past, the plural of "anecdote" is not "data", so please forgive my view if it collides with any facts you may have.

While at the ALS NS office, the team there mentioned a lady in New Glasgow named Kim, saying I should stop by and see her on my way through. Little did they know that Kim and I had already been in contact; she has been reading this blog. Kim had made the offer as well. Unfortunately my plan was to go up the outer coast of Nova Scotia then cut over to Antigonish before heading up to Port Hawkesbury for the night. I had let Kim know this already and I shared that plan with the ALS NS folks as well.

After an hour at the ALS NS offices in Dartmouth, I headed out on the highway intending to make the turn to go up the outer shore. Somehow I got turned around and headed west instead of east. It can happen, even to me. I wasn't lost so much as not going where I first intended. I drove for about thirty minutes or so before realizing where I was going. By that time I was halfway across the province; yes, Nova Scotia is very narrow. So instead I said to myself, "let's see where this road goes". I ended up in Wolfville, home of Acadia University. I checked out the campus, then checked out my map.

From Wolfville, with a bit of back-tracking, one can pick up the Glooscap Trail along the inner shore of Nova Scotia, which takes one to Truro and then on to New Glasgow. This one did just that, and once there I called Kim. She and I had a wonderful evening talking about her husband Joe, who passed away last year from ALS, her family, her recently deceased mother and all kinds of other stuff. Then she said "I have some friends down at Melmerby Beach. Let's get some food and go to their place."

We went to the beach where we ate, and drank, and then drank some more. I stayed the night, as did Kim, with Duck and Donna, sleeping on their fold out couch. Yes, "Duck" is his real name. In the morning they had to go to work and I had to drive Kim home. There was no time for writing a blog! By the time I was in the truck and underway, I didn't feel like stopping, unloading my computer, finding a seat in a Timmie's where I could get electricity, et cetera, et cetera, et cetera. Hence, a late blog, along with a wonderful night at the beach.

Thursday, 22 August 2013

Peggy's Cove and Lunenberg

I went to Peggy's Cove yesterday, and then on to Lunenberg. Both of these locations are famously picturesque, classic Canadian tourist spots. Both of them are on the seashore. Both of them are set in steep shoreside locations. Neither of them is particularly wheelchair accessible.

Peggy's Cove is home to a beautiful light house, famously set out on the giant round rocks of Nova Scotia's Atlantic coast. The rocks are smooth, buffed by ten thousand years of waves washing over them, water pushed high by storms and tide, sometimes snatching from their perch a soul too brave or too unknowing, a person unaware of the reach of Poseidon's hand. It happens often enough that there are numerous warning signs advising tourists not to go on the outer rocks. Yet go they do.

I, one the other hand, was completely unable to go anywhere past the parking lot of the tourist reception centre. The path is simply not well set out for a wheelchair, nor could it be. These hardened foreshore rocks lump up and down, making all but the narrow access road impassable for anything with wheels. Rather than simply get out and wheel round the parking lot, I watched the sea from my truck for a few moments, then, accepting the limits of my mobility, moved on.

The next stop in my wander was Lunenberg. Direct on the inland highway, Lunenberg is about 40 minutes from Halifax. If you take the coast road, the one that follows the edge of every beach and bay, the ride is more like three hours. I took the coast road, the road more likely to show me the water, the boats, the small marinas and towns along the way. It took almost two hours along this drive to get from Peggy's Cove to Lunenberg. It was likely the kind of drive only I would find interesting.

Lunenberg is built up on the steep slopes of the Fairhaven Peninsula, in a cove cut into western side of Mahone Bay, one of many beautiful, photogenic towns on the South Shore of New Scotland. It is a village of stately old homes, many converted to small botiques and restaurants to serve the tourist trade, where narrow streets are hacked into the rocky up-slope. It is also not very wheelchair friendly.

I tried getting into one restaurant. They had a ramp which was hauled out when a wheelchair showed up. The doors were narrow, the hallway was narrow. There was no wheechair washroom but if I wanted, I could try the staff washroom. It was in the back, past the piles of dirty tablecloths, around the corner from the washing machines, opposite the ironing board, with standard, hard to get to fixtures. I felt like a second class citizen being hustled to the back of the bus or a hidden room somewhere. I said "No thanks" and left.

My second choice of location proved much, much, much better. It was in a converted fish warehouse. There was a handicapped washroom on the main floor, set up as a part of the fisheries museum housed in this building. The restaurant was on the second floor and there was an elevator. I got a table by the window, overlooking the docks and the cove. Boats sailed by as I drank my beer and ate my seafood medley.

It proves the value of not taking the first option until you have seen the second, and sometimes the third. Being in a wheelchair does not define me; it simply limits me. Being in a wheelchair should not make me a second class person, yet at times it does. I refuse to accept that; I demand to be treated like able bodied people, with access and services that I will be happy to pay for..

Wednesday, 21 August 2013


I am getting off to a slow start today. As morning ablutions become more challenging, as does dressing, I am just taking longer to get up and about; the change continues. It's not a bad thing; it's just a thing. So far I have made it halfway this morning. The other half is getting pants, not an insignificant issue in that I try to stand when I pull up my pants. Standing only happens once or twice a day now, usually with lots of effort and assistive devices like bars or the lift in my truck.

Yesterday was an interesting day, driving from Charlottetown to Souris and then to Wood Island on PEI. From there, I took the ferry to Caribou, NS . My plan had been to drive north in Nova Scotia, heading up the Sunrise Trail yesterday and then on to the Cabot Trail on Cape Breton Island today. On a whim, however, I decided to go to Halifax instead. It is the one advantage of not planning; I can do things on a whim.

Yesterday was interesting in another way. I met a couple of people, each with their own stories. The first was a woman in the lobby of my hotel. She was waiting for her husband; he had taken a couple of sleeping pills the night before and he was having trouble getting up. She went on to talk about why he took the pills. He has terminal cancer. It had begun as colon cancer which was successfully treated, or so they thought. It has metastasized, relocated to his liver and multiplied. Now he has numerous liver tumours. His doctors can only offer palliative chemo-therapy in an effort to reduce his pain. He is 58 years old, the same age as me.

Later in the day I found myself at the Wood Island Ferry terminal with an hour or so to spare. So I went to a local institution, Crabby's Seafood Shack, where I met Mr. Crabby, or as I was to discover later, Kip. Kip had come to PEI in 1973, not to escape the draft as he was quick to point out, but because the election of Richard Nixon soured him completely on the wisdom of his home country.

In 1986 after working in a variety of jobs on the island, Kip and his partner John got themselves this fishing shack on the dock next to the Wood Island Ferry and began selling fresh, local seafood. They did well and ended up buying a brand new commercial fishing boat. They fished for cod and when the cod ran out, they fished for redfish. They did well selling their catch along with local seafood from others in their neighbourhood. Mr. Crabby's expanded; they started selling cooked seafood as well as fresh.

Then, in order to spend more time on the shore side of the business, they hired a skipper for their fishboat. That first season with a hired crew, their boat went to the bottom just off Newfoundland. Fortunately the crew got off safely; unfortunately the boat was only partially insured, a not uncommon situation here on the East Coast. The boat had been John and Kip's retirement plan; they were going to spend summers here, fall coasting down the the Antilles, winters in the Caribbean, and spring coming home. Now that was lost to them; both Kip and John were working well into their sixties to keep things going.

Two men, two life plans that changed, randomly. Everyone's life is like this. Things change, sometimes completely randomly, sometimes good, sometimes bad. Life begins, changes, and ends. That's the way it is.

Tuesday, 20 August 2013

Being Green

I feel old this morning, like a pair of torn and faded jeans too well worn to be of further use; old before I am ready, like my truck with so many miles on it in so little time. I feel old and tired this morning, so tired my eyes don't want to focus, so tired that my feet won't move. I feel old, tired and alone this morning, alone as one can only be when staring into the abyss, seeing nothing and knowing that you stand singly staring into this bleak tomorrow. And the ever-present pain in my shoulder drives me closer to that edge, deeper into that gloom.

Some days are like this. Some days the pain and the difficulty of even the simplest of things is more than bearable. I look around me and everyone in the room is younger, or if not younger at least more mobile. It was amazing the other day to see a room full of young, strong, vibrant men all in wheelchairs. This morning I was in a room full of people, all jostling for the breakfast line and all looking at me with some vague sort of pity flickering quickly across their faces. All standing. It is such a contrast.

Last night was like that too. I went out for a dinner in a restaurant where everyone else was with someone else, where I was the only singleton table. I had a great dinner of mussels and lobster, leading, as unlikely as it may sound, to one of the more ironically humourous moments of my day. The waitress, having served my big bucket of mussels, came to check after I had begun eating. She said."How are your mussels?" If course if you write it, it makes sense; if you say it out loud to a person with ALS, the irony becomes all the more evident. I almost snorted a spoonful and started coughing as I choked on the mouthful I was eating. Then I had to explain.

After dinner I wheeled uphill into downtown Charlottetown. It's always uphill from the docks, no matter where you are. If it were not, the docks would not be the docks; they would be a sinking obstruction. It is the nature of water that land rises away from it, seeking to escape its lowest common point. So up I went. A few people offered to help and in one or two cases I said yes. Sometimes it is easier just to accept the help rather than fight solo. No, not Han Solo; just solo.

As I sat in one of the outside bars, I thought of Europe and how much this setting reminded me of being there; the musicians playing, the lights strung into the trees, the liveliness of the crowd, with one notable exception. In Europe, folks of all age and scale sit out in the evenings, enjoying the cool air and listening to whatever entertainment comes by. In Charlottetown, the young far and away out-measured the old, the couples far and away out-measured the groups. And of all, I was the only single to be seen anywhere.

I feel this way a lot these days, alone, standing out in my singularity, a mis-colored crayon in a Crayola box, lime amongst the crimson. As Kermit the Frog says,  "It ain't easy being green".

Monday, 19 August 2013


I am in PEI; that's Prince Edward Island for those of you not withing the Canadian cognoscenti; Green Gables, home of red haired Anne; birthplace of our Canadian Confederation, covered in the rich red mud that so produces such a perfect potato as to make PEI synonmous, and the McCain family both famous and wealthy.

PEI, with its gentle winds and sweeping landscape, is so different from its coastal counter, New Brunswick. Driving across the bucolic island is rather like driving through Devon in the south of England, that rural home of Dumnonian Celts famous even back into Roman antiquity for its farmlands and hills. PEI, though not of that age, is rooted in English tradition with a countryside that rolls along squared into farm after farm, neatly separated by hedgerows of small conifers; short, stubby trees suitable for nothing other than wind breaks.

The drive yesterday through the moose infested backroads of New Brunswick was uneventful to say the least. It was an easy day of driving, so necessary after the night before. The roads were unhurried, the speed limits lowered by the rural nature of the drive. The sea was ever on my left, sometimes there to see and others hidden but those same short, stubby conifers populating its neighbour island and the surrounding maritime regions. It's stick logging here, mostly for paper mills, along with the ubiquitous yet decimated commercial fishery. If you want to buy an old fishing boat, this is the place.

To leave New Brunswick for PEI, one has two choices; the old ferry run from Caribou, Nova Scotia over to Woods Island, PEI or over the relatively new Confederation Bridge. I say relatively new because this massive bridge over the Northumberland Strait, the 8 mile gap of water that separates PEI from the mainland, was under construction, halfway completed, when we came here in 1995.

The 8 mile long curved, two lane bridge replaced the old ferry service, the ferry we had taken when we made our trip over. The dock for the ferry on both sides provided terrific view of the construction and when we came here many of the cement pylons were already in place. Confederation Bridge, a project delivered and funded by the Canadian government, is the longest bridge in the world over ice-covered waters, for the strait has a tendency to freeze clear across in the worst of winters and freeze out a far distance from shore in even the mildest of Maritime winters. It is one of Canada’s top engineering achievements of the 20th century. and I have now driven over it.

Today I get to explore, visiting place I remember and some that are new. I am staying an extra night here just to give me time, needed time, to visit, to rest, and, oh, yes, to get my truck serviced. It's all good.

Sunday, 18 August 2013


Okay, I am up. That is not as trite as it sounds. Last night I stayed up late, very late, late enough to say I went to bed today, not last night. It was just after 4:00 AM when my head hit the pillow. I woke up to pee at 8:30 this morning and promptly went back to sleep until 11:00 AM. Checkout here at the hotel is noon; I might not make it.

Last night I got to talking with the fellow who owns the hotel and bar here. He was shutting down at 12:30 last night while I was still watching the BC Lions game in the bar. There was a wedding in the hotel and it was going late; lots of noise, music pounding. The hotel had warned me that this might be a problem since my rooms is right beside the main banquet room. It is a special handicapped accessible room on the main floor of the hotel, very well laid out and brand new. When they told me about the wedding party, I figured I would just watch the game in the bar until either one or the other ended.

When the owner came in, I mentioned that the party was still going strong. He said, "No worries. Let me buy you a beer." If you know me at all, you know that was a clarion call to action. Beer was to be had and I was to have it. He sat with me and we watched the last of the game. Then we got to talking.

We talked about Campbellton, the town were I am right now. We talked about business, about being an entrepreneur and how the skills of building a business are not necessarily the skills of running a business. We talked about children, his and mine, about family, his and mine, about life. It surprises me the things people will tell me, how much they open up in conversation with me. I wonder if they talk like this, so openly and frankly, to other people. I wonder if they talk to me like this because I am a stranger, without grounds for judgement or opinion of them.

It doesn't really matter that much. People talk to me, most probably because I talk to them. One thing leads to another in conversation; the next thing you know it's 4:00 AM. It's going to be a late start to my day, after a late finish last night. It will be another thing to talk about with someone else.

Saturday, 17 August 2013

The Risk of Adventure

There's only one or two things that beat a good night's sleep. I leave it to others to fill in the rest of that aphorism. Last night I had a good night's sleep here in Gaspè, Quebec. My arrival, late last night, was not according to plan. Of course, given the complete lack of planning involved in this trip, it would be pure hubris to say anything had gone according to plan or not. I am simply here and awake. This is a good way to start any day.

Yesterday I took the ferry from Baie-Comeau to Matane on the Gaspè. My thought had been to stop and stay there in a local hotel. The hotel had one wheelchair room and it was occupied. They had other rooms with easy access but their idea of easy access was across a lawn, up a 2" step and steep ramp. I declined, thinking I would stay in the next town up the road.

That fateful decision lead to a couple of things which you could see as bad or good, depending on your sense of adventure. I choose good. First, it meant discovering the truth about not only the Gaspè but most small tourist regions. It has created a truism for me. All small motels have big stairs. That's all. From Matane to Gaspè I stopped at about 10 small, local motels and called about 20 others, some overlooking the sea, some overlooking the forest, some overlooking the highway. Many of them had ramps into the office; all of them had ledges, porches, steps or other such imprecation generating hurdles before the guest room door. Hour upon hour, village after village, mile after mile, motel after motel, all with stairs.

The next thing this did for me is enforce a night drive, prefaced by a sunset roll along the coast road of the Gaspè. This was a true wonderment, a show beyond all expectations. The road was smooth, clear and nearly empty. As the sun slowly settled in the west, it found it's recess in the waters of the Gulf of St. Lawrence. It's leisurely journey brought on a sunset of the purest hue, a gentle light seen through amber, throwing all of the water, the mountainsides, the trees, the rocks, the road itself into this scene of gold tinge, brightened by the soft setting sun. A single tincture, brushed surely by the hand of God, shaping a vision that I had never seen and may never see again

Then came the night, slowly through dusk and dark, and onward I drove. This too was a new creation of this amazing coast. Town after town, twinkling in their man-made starlight, seen afar round curves and capes as the highway winds, showed themselves distant and welcoming. Lighthouses, bright beacons for the sea, the holding posts of the heavens, rose up and shone their pharos out across the open water. Small boats and large, reds and greens dangling so near the cold seas as to seem near drowning, made their way into small, breakwatered harbours, ready to bring safely home those aboard. Each town had its harbour; each town had its lights; each town had its own picture to paint both in the late dusk and full darkness.

The road wove in and out, climbed up and down, rolled forth and back, sometimes so close to the sea that there were warning signs to alert motorists to the dangers of waves from a storm tossed sea that might come crashing onto and over the roadway. And in the end, the road brought me here.

Who needs a plan? I'll take the risk of adventure any day.

Friday, 16 August 2013


I woke up early today, a start to my day which has a certain irony to it. Today is the day when I take the ferry from Baie-Comeau to Matane. The ferry leaves at 2:00 PM. My hotel checkout is at noon. Breakfast at the hotel goes until 10:00 AM. I awoke at 7:00 AM, a full 2 hours earlier than needed on a day with no demands and easy timing. Ah well, that's just how it goes. At least I managed to lie in bed for another 90 minutes before launching myself into the day.

The drive yesterday from Quebec City took me along the north short of the St. Lawrence River, or if you are from here, fleuve Saint-Laurent. The road along this side of the river wanders, at times following the close shore of the river, at times winding up into the bluffs of the high bank, at times wandering up into the low mountains of the Canadian Shield. There are a myriad of small feeder rivers and streams, many of them falling over the bluffs virtually at road side. Other times the road is low aside the main river and these falls are off to the side, sometimes in view and other times hidden just enough upstream that the only hint of their existence is a tourist sign.

It is a pretty road with the river on the right all the way, moving along the flats where the smell of the river slides its way into the truck through the air conditioning, moving up into the low mountains where small farms have been carved out of the ancient boreal north, moving ever northeast while the river widens into the broad inlet of the Atlantic we call the Gulf of St. Lawrence. At this most distant end of the road, the river is strongly tidal with mud flats at almost every turn. The shoreline is rock strewn, random boulders tossed as if mythical giants were playing dice with them. This coast, this river edge, is a navigator's nightmare, sometimes steep-to and other times creeping out far into the river.

Most of the small towns along the way are marked with their spired Catholic churches; the larger towns evidencing their lucre with dual spires and churches copious in space and appointment. The Church is failing here as more and more people turn their backs on this increasingly irrelevant institution, haunted by suspicion and betrayal, looking firmly into the past and seeing the damage this system has left behind. In some of the smaller hamlets the local church is closed, de-consecrated and waiting to be sold off.

The major towns and cities along this line of land, this vast region of wilderness, are resource towns. Baie-Comeau is a paper town, the most prominent welcoming being the two major dams sealing the mouth of the Manicouagan River so that power would be ready and cheap for the mill. Cheap electricity fueled the growth of other industry including an aluminium smelter. It's also the departure point for the ferry to Matane, the eastern-most crossing of the St. Lawrence River. After here, it's nothing but ocean, except for that small interruption of Newfoundland.

Thursday, 15 August 2013

Backwards and Forwards

Writing this morning is a pain, quite literally. My left shoulder continues to trouble me to no end. It simply will not stop stabbing and pinching and pulling and hurting. Never in my life have I had this kind of difficulty recovering from injury; never before has healing taken so long. This is just plain annoying.

The only way to shrug off this kind of pain is to manage it in my mind. Today I plan on doing that with more road tripping, with the distraction of driving and the stimulation of new places. In fact today will be my first day covering truly new places to me. The furthest I have ever gone up the north shore of the St. Lawrence has been Saint Simeon, where in 1995 we caught the ferry to Riviere-du-Loup on the Gaspé side. This time I plan on going all the way to Baie-Comeau and then catching the ferry to Matane on the Gaspé.

Slowly I am coming to realize that this trip is my farewell tour, my memory tour. I am combining my love of the new with the many amazing memories I have of our family road trip eighteen summers ago, when my children were young, a time when being a Dad was probably the most important part of my identity. The new places are things I wanted to do then but could not. The memory places are spots along the way that trigger something special. So rather than Montreal, although it was fun and interesting, I chose Quebec City where I will always remember dinner and exploration in the old city, a time wonderfully shared with Carla and the kids.

It is also why Peggy's Cove means more to me than Halifax, why the beaches of Cavendish pull so strongly. Yet the new pulls too. I want to drive the Cabot Trail. I want to round the tip of the Gaspé. These are places that we could not get to back those many summers past. These places, places where memories are yet to be made, pull me as strongly as the ties of memories from that summer, so much like this yet so different.

It's funny how the past can be so near yet so far, like fruit on a tree just slightly out of reach, ready to be plucked, too far away. I have never really lived in the past. Perhaps this road trip is recompense for that, payback for a mind always looking forward to the next destination. This road trip is a perfection where I drive backwards by driving forwards.

Wednesday, 14 August 2013

Quebec City

A funny thing happened on my way to Montreal. I kept going, right through to Quebec City. I love this city, it's ancient charm in the old quarter, the food, the river, the funicular. It is a city that reminds me tremendously of Europe. So when I got to Montreal and was having trouble finding a decent hotel room, I said "to hell with this nonsense", started the truck up and moved on east.

The drive along the St. Lawrence River valley is an easy one. Gentle slopes, long slow curves, good roads; all this keeps the driving easy. The scenery at this time of year is a variegated green, from fields of corn and grain to small bush lots, all bounded by neat fences. Small towns dot the landscape, mostly built around small industry, agriculture and tourism. It's simply a nice drive.

On leaving Montreal the skies darkened. The clouds had been behind me the whole way and they finally caught up with me. The heavens opened and the tears of a thousand angels descended upon me. The rain was torrential. Lightening flashed and thunder crashed. The highway was a sea of water waiting for my truck to surpass hydroplaning speed. I simply slowed. took it easy and enjoyed the light show.

The evening delay meant a late arrival in Quebec City. My entry route was unfamiliar to me; I've been here a few times by car but the gaps between are long enough that roads have changed, buildings have changed and the city has grown. Yet still, with all this, I found myself somehow right at the old city, looking up from the St. Lawrence at the familiar turrets and stone of the Chateau Frontenac. I took the river road to Battle Park, below the famous Plains of Abraham, went up the embankment road, the self-same route used by Colonel James Wolfe on 13 September 1759 and headed back to Vieux Quebec.

The Chateau Frontenac was full so I took a room in the Delta Hotel just outside the old city wall. Today I plan to change to the old hotel, that great dame of the CPR chain. That is, I plan to do so if the politicians and conference goers leave any rooms behind. This is a busy part of town, with the parliament buildings right here along with most government offices. And we all know how politicians like to live on the public purse. Wish me luck!

Tuesday, 13 August 2013

Life and Death

We live in a world of life; children playing on a beach, families laughing over dinner in a restaurant, workers building and artists creating, the wind blowing warm life across an open field, the rain bringing needed moisture to a parched land. We live in a world of death; children born with death as their only end point, families mourning the loss of loved ones, the icy chill of a killing winter wind, floods destroying needed food. There are two parts to every life story; the living of it and the dying of it. Yesterday was a day of two parts.

Yesterday morning I went to visit Ellen. She is a vibrant, funny, intelligent, artistic woman whose body has failed her. Ellen was diagnosed with ALS just five months after the birth of her twin daughters, siblings to her older daughter, then just three years old. At that moment, in the face of this devastating diagnosis, Ellen made a tough choice. With three small children and a disease which she knew would steal her body and her life, she made the powerful decision to live for her children, to leave her bucket list, her dreams of travel, her personal wants and needs, and to commit to doing whatever was needed to see her children grow.

Ellen is fully confined these days; the disease has taken her legs, her arms, her voice, her movement, even her ability to breathe. It has not taken her spirit, her smile, her love of her daughters. Her hospital room is a patchwork of carefully arranged photographs and children's drawings. Her bookshelf has one small box entitled "Ellen's Stuff" and the rest is given over to toys, books, stuffed animals and everything else three precious children could want when spending time with their hospitalized Mom. Five and a half years have come and gone while Ellen has endured and fought to be with her children. She is truly brave. She is truly giving, truly alive.

The middle of my day was spent visiting with my niece and having dinner with my daughter. Both of these young women are at the start of their lives, the beginning of careers. Both of them are energetic and intelligent. Both of them are filled with dreams and ambitions. Both of them have a family member living with ALS.

When I got back to the apartment where I am staying in Toronto, I checked my email and Facebook only to discover that my online ALS friend, Jean Kent Unatin, had died. Her death took me by surprise. I had been chatting with her just a couple of days ago. She was online talking with friends just the day before. There was no indication that death was imminent. Yet she is now dead.

Life is in all of us; death comes to all of us. Jean lived, loved, had a son, got ALS, and died. This is the cruel order of things. It does not tell her story, illuminate us as her art did. Ellen is alive, living vibrantly in her spirit and mind. Her story will continue, as will Jean's story. Life is a new beginning of things, one that we all are blessed with. Death is not the ending of things, it is simply a passage, one that we all must make.

Monday, 12 August 2013

A Series Of Random Thoughts

I don't have anything profound to say today; I almost don't feel like writing. The sky is grey and overcast. I have this light sense of ennui. I am not sure if I want to go further east or go home. Yet none of these feelings is enough to generate any sort of scrivener's direction; no worship for the written befalls me. So I thought I might just share a few random thoughts, a couple of complaints about life. After all, if I can't say something nice, why not complain?

Did you ever think about the unfairness of doing laundry? When you do laundry, in the very act of doing it you are wearing the clothes that become the next load of laundry. I know; this is a first world problem. Personally I think it is some sort of conspiracy run by the laundry detergent companies. I mean, I could do laundry naked except it might bother the other people in the laundromat. I've seen movies where people do their laundry in their underwear and then, after their clothes are dry, they change into clean underwear and wash the last pair in the sink. But even then you are wearing clothes and those clothes are getting dirty. It's just a never-ending circle of laundry. You can never get ALL your laundry done. It's just not fair.

And how about when you want to go on a vacation? I don't know about you, but when I hit the road I want to leave a neat, clean house behind me, especially if I am going away for more than the weekend. I like clean sheets to come home to, so that means doing the sheets in the laundry before I go. But that means either doing them the night before and leaving dirty sheets on the bed, or getting up in the morning and spending half the day doing laundry before leaving. Either way, it's just not fair.

Pumping gas is another thing that bugs me. Oh, for the rest of you it's no problem. You hop out of your car, grab that hose, hit a couple of buttons and away you go. For me, I have to get myself out of my truck with my lift, then get my wheelchair out with the crane, setup the chair, get my cushion onto the chair. Then I reach UP to the self-serve buttons so I can slap "Regular". Oh, and at that point I realize two things. First, I can't actually see the screen that says how much I am putting in, so full is always what I get. You might not thing that's a bad thing, but what if you only have $20 on you.

The next thing I notice is that the gas pump island is "kidney" shaped. That means the front and back poke out further than the pump. For you, it makes it easier to get closer to the pumps. For me it means I can't roll backwards or forwards to get the hose, which is always shorter than a 16-year old's mini-skirt, from the pump, where it is always up about as high as a basketball hoop, to the fill spout on my truck, which is also somewhere above my head. All in all, it's just a bad deal. And where they will pump my gas, they want to charge extra! I'm terminally ill and in a wheelchair for God's sake! Give me a break here!

There's more, you know, lots more! I know, I shouldn't complain. I have a lot to be thankful for. But I just don't feel like writing today.

Sunday, 11 August 2013

Niagara Falls

Life never goes as you expect it. That may sound more than trite coming from me; my life certainly isn't going as I had expected it. Nor am I going from my life the way I expected. I was fairly sure I would die from some massive heart attack or stroke, hopefully in my sleep, hopefully not behind the wheel with a carload of passengers. Well that might still happen. ALS does not give you a free pass on anything else in life. It's just part of my life.

Yesterday my daughter Kate and I went to Niagara Falls. We took along a friend of hers, a new Canadian who had never been to the falls. Our 75 minute drive turned into a three hour marathon thanks to traffic. It seemed like everyone in Toronto decided to go out of town on Saturday morning, and everyone outside of Toronto decided to go into town at the same time. We made it, after an obligatory detour down to Fort Erie thanks to my inability to read exit signs while nattering at my daughter. That unplanned re-routing had us head downstream along the Niagara River, approaching the falls from the top, seeing the mist rising from the gorge long before we saw the river cascade over the edge, watching the water turn from blue to green to white, then disappearing over the precipice.

I've done this before; so has Kate. Her friend had not; she had a wonderful time, as did Kate and I. Seeing the falls for the first time is an impressive experience. Seeing them for the second or third is still pretty good. I've seen them a half a dozen times and it is still a fun thing to do. After the required pictures, we went for dinner in the restaurant in the Visitor Centre overlooking the falls. This is something I have wanted to do every time I've been to the falls, have dinner in that restaurant, and had yet to do. It was the kind of experience you don't get to have all that often.

Dinner in the restaurant is vastly overpriced; after all, someone has to pay for that amazing view. Some might chastise me for spending so much money on that dinner, money that might be needed in the future. Some might think going to the casino and dropping $100 just for fun is silly; that money might be needed in the future. I thought about it for roughly a millisecond and then decided to do it anyway. After all, what is the future? So far mine has not gone according to plan.

It's better to live for today, to live in the moment. It's better to enjoy the company of my daughter in a unique time and place, something I may never get to do again. Money comes and goes; experiences like this happen so rarely that you must grab them, seize them, take them up and cherish them. To hell with the money.

Saturday, 10 August 2013

The Internet

It's amazing to my how much the Internet has changed our lives. The advent of things like Facebook, Twitter, Google Maps and a host of other applications connected through the Internet have broadened my world in ways I would never have expected. It has brought loved ones closer, rebuilt lost connections and enabled me not only to share my ALS journey with others, but allowed others to share theirs with me. The Internet has enabled my writing, my learning, my growing; the list is near endless and it just keeps getting longer. It is an amazing tool.

Consider the political changes we see happening in the world around us, or the oppression we know goes on in places like Syria, Russia, and sometimes even here at home. These ills of the world can no longer be held quiet, hidden in the dark places of society, struck in the breast of night and suckled by its darkness. The power to communicate empowers the individual, something those in power hate to think about.

Yet perhaps the best thing about our modern communications is its ability to enable people like me to share my experiences and to meet others with struggles like mine; to meet, virtually and sometimes physically, those who understand the pain and difficulty of my illness; to meet people who are going through this and who have helped a loved one through this. It is a powerful thing to know that you are not alone, that others understand what this damnable disease does.

I met one of those people yesterday, a young woman whose mother has passed away, another victim of ALS. For this young lady it was a clarion call to a life of action. She has become an advocate, a warrior on behalf of those of us too tired, to exhausted, to worn to fight. She is a bundle of energy, compassion and enthusiasm; one of a kind.

She is one of the first I have met outside of my medical team and the ALS Society of Alberta who I can be with and not have to explain why I have to eat, why I suddenly get so tired, why I want to be pushed in my chair sometimes and not others, why driving is so important to me. Thanks to the Internet, I get to meet her and others who understand my journey. I love this; it makes me happy.

Friday, 9 August 2013

Sadness, Loneliness

I awoke this morning in an emotional hue tinged with sadness. I had a dream last night, one filled with rejection. Some details are so personal, so self-revealing that even for me it is too risky to expose them; these were in my dreams. Suffice it to say that, on waking, I was just plain sad.

Recently one of my online friends said I sounded lonely in my writing. This is true, I am lonely. I am walking this road solo, just like this road trip. It is not easy; it is a time in my life when I should have had a loving wife by my side, my children around me. I do have family in my life but there are still large emotional gaps that I must full on my own.

I don't blame anyone for this. After all, I chose to move to Calgary, leaving BC, leaving Mom and Ray. I chose to leave my wife; my divorce has forced some tough choices and my wife has managed to ally most of our ex-friends to her cause. They were probably never really my friends at all, but still it is another brick in the wall of solitude. My children have lives of their own and they are still dealing with the damage of this divorce and my illness. My brothers have lives of their own. My friends have lives of their own. There are very few people who can just put their life on hold simply because I want to go on a road trip.

This road trip is a good example. I don't like travelling solo, in fact I deplore it, I detest it. Yet given the alternative of being alone while travelling or sitting home alone, I choose to explore and travel as much as I can while I still can. It will end soon enough and the sadness of alone is less than what I will know will be the sadness of leaving these adventures undone. Aside from the obvious logistical challenges of driving across the country alone, being the only driver, struggling with hotels, loading and unloading; aside from these physical things there are emotional challenges. My hotel here in Barrie is a good example, a view in specific of the general stabs that my psyche takes as I travel single.

My room has a Jacuzzi tub set nicely into a tiled corner. It looks so inviting, so much like it is calling for someone to sit in it, enjoy the jets of hot water, have a glass of wine, a bit of chocolate and share a romantic, sensual moment or two. I am alone; romance and sensuality are difficult as a singleton. So I look at it an remember a time when I was not alone, when I had someone to share these moments.

Even though I am in a wheelchair I think these thoughts. When I realize how difficult it would be for me, I think to myself how nice it would be for someone to use that tub even if I could only share the moment vicariously, listening to the rush of the water, hearing someone tell me how it felt, how it relaxed. I could still share the wine and chocolate. Perhaps this is why I dreamed my dream. Perhaps this is why, this morning more than most, I feel sad and lonely.

Thursday, 8 August 2013

Research Cohorts

Long days at the wheel give me time to think. I don;t know that this is always a good thing. Yesterday was one of those days. Driving through northern Ontario, along The King's Highway 11 as they call it here, was a multi-hour stretch of soft twist and turn on a road cut through the rocks of an ancient mountain range ground down to rock, across hundreds of small rivers and streams, around dozens of lakes, all surrounded by scrub green trees of mixed hue and type. For most of the day it was a drive in the midst of trees, rocks and water, with the odd village sprinkled along the way for distraction. There were a few larger towns of course, but mostly it was wilderness. It was neither boring nor monotonous; it was smooth and easy.

So I got to thinking, and yesterday I thought about the challenges of ALS research. It is a numbers game more than anything. Researchers estimate that roughly 1 in 10,000 people will get ALS. Compare that with cancer where researchers estimate that 1 in 20 people will get cancer. According to the CDC, there were roughly 12.5 million Americans with cancer, all types combined, while there were between 20,000 and 30,000 people with ALS.  No wonder cancer gets more press, and more research. For every PALS there are 500 cancer patients.

You might wonder why the ALS numbers are so "approximate". Firstly the ALS population is not well measured. It is a disease that masquerades itself; diagnosis is difficult and in many cases, incorrect. ALS is a guerrilla fighter in the disease jungle, a small moving target, mostly hidden, unseen, terrorizing only a few. People have ALS and don't know it until long into their progression. Secondly, we die at a persistent and consistent rate; about one-quarter to one-third of PALS die each year. Some live longer, some shorter, but the mortality rate across the group is fairly steady. We die at an alarming rate.

This makes research very difficult. To understand a disease, researchers need a consistent and relatively large "cohort" to study; this means a relatively large group of PALS with similar onset, similar symptoms and long enough life-spans to study. As PALS with a disease that is highly variable in onset and progression, with a short life expectation, it is almost impossible to get a decent sized research cohort for any given research site.

Take my case as an example. The doctors think I have PMA, a form of ALS that affects about 4% of all PALS. Of the roughly 500,000 people globally with ALS, my variant has a cohort of approximately 20,000 people. That is globally. Imagine trying to arrange a world wide research study with that population, and then imaging roughly a fourth of them dying every year. In the US there are only 1,000 PALS with PMA and in Canada only 100. There just are not enough PALS, and I thank God for that.

This is just some of the thinking I did yesterday. There were many more hours to think, many more hours of trees, rocks and water, many more hours to calculate and wonder. All I could conclude was that I am unlikely to live long enough to see any major advances towards a cure for this awful illness. That will come for someone in the future.

Wednesday, 7 August 2013

History or Geography

I am about spend a day driving across the top of Ontario; well, not the top really but more the lower middle. It is, however, the top as far as highways are concerned. Highway 11 in "northern" Ontario is as far north as the major roads go. From Nipigon to Timmins, infamous as the home of Shania Twain, the road is fairly new. I recall coming through here by train in 1973 and being told there was no road to Kapuskasing, only the train. It's rather like Churchill, Manitoba in that regard.

The Canadian Shield here is old, really old. The rocks along side the road are primarily Pre-Cambrian, about 550 million years old although some of the landforms are more than 2.5 billion years old. These rocks where here when the continents were one giant mass. These rocks were here when the first creatures crawled out of the primordial ooze. These rocks have seen the rise and fall of the dinosaurs; they have seen the rise of, and will likely see the fall of, mankind.

You might note that I am interested in geology and geography. My geographical interest lies primarily in geomorphology and orogenics, the process of mountain formation, especially by the folding and faulting of the earth's crust but also through volcanic action. This means tectonics intrigue me too. This interest began in 1975 in a night school class where my research partner just happened to be a girl named Carla. We took geography together and I worked very hard at getting her as a partner. I wanted her for the same reasons all young men want a woman as a lab partner. I am still not sure why she wanted me, yet she did.

We were different; opposites attract. I was a vibrant, wild, outgoing young man who would say and do almost anything. She was a quiet, introspective young woman who chose her words carefully and stepped into the world cautiously. She was calm and quiet, critical and insistent. I was mercurial and anything but quiet; I was outspoken, quick-witted, and intelligent. She saw calm and quiet as rational; she saw my emotional outpourings as irrational; they were anything but calming. I was insecure and uncertain; I believed her. We married, had children and ultimately divorced, some 38 years after we met. We were different then and we are different still. I cannot speak for her, but I have grown wiser, changed, and now see our points of view through newer lenses, lenses with more balance in them.

Carla and I did our geography project together. We were to collect soil samples and make observations regarding the local geography, to identify localized structural and formation differences. We spent hours dashing around together to various local geographical landmarks, drilling soil and taking pictures. We did research together and in that process got to know each other. We dated, and dated some more.

Once we were done our research, we were to create our own conclusions and report on them. We were required to write separate research papers using the same results. Carla worked on her report for weeks, writing and revising, researching and editing, preparing a work of art. The day before the report was due, she asked me where mine was. At that point I realized I had to start writing something, so I spend that evening and much of the night reading, writing and concluding.

We turned our papers in; they were important, 40% of our grade depended on the mark we got. A couple of weeks later we got our papers back and Carla was incensed. Her work and efforts had earned her a "B"; my dash and dare had earned me an "A". Even then we had differing views on how life should work. She felt she should be rewarded for effort; I felt I should be rewarded for the outcome. We were both wrong.

Tuesday, 6 August 2013

All Canadian

It is a cold, dark morning here in Northwest Ontario. The skies are closed over with a chilled steel sheet of cloud. The rain is falling steadily giving proof to the name Rainy River and Rainy Lake, the water courses on which Fort Frances is placed. The price of this beautiful green landscape is cool days like this in the midst of summer. It will be one of those days, those dragging kind of days where the road is a slick and every stop is a wetting. It's not depressing but it could be if I let it.

I slept in this morning, not arising until after 8:30. The drive from Winnipeg to Fort Frances was not all that long, only 6 hours. But after the pain of yesterday and my decision to have a few beers while watching the BC/Winnipeg CFL game, I needed some extra rest. The cloud cover outside didn't help either; it's 9:00 AM and I have to turn the lights on in the hotel room in order to see my keyboard.

The change from the open prairie of Manitoba to the closed confinements of the Canadian Shield make for a dramatic and sudden transition. As you drive east, you move from wide four lane highway with broad medians and smooth terrain onto a sharp, rolling, cutting, curving two lane road that trickles its way through bog and muskeg, lake and river, where the rocks blasted from one section are used to fill the swamp of the next section. From a land with few trees you are thrust into a scrubby mixed forest of deciduous and evergreens all too short and thin for any timber logging; the logging here is pulpwood and firewood.

Northwestern Ontario is a misnomer. This region is right on the border of the US. Fort Frances is a border town. It is the far west of Ontario, and certainly it is north of Toronto, the centre of the known universe, but it is the southern edge of this massive province. To get some sense of the scale of this country, consider this. Yesterday I crossed the longitudinal centre of Canada, the geographical point where a vertical slice would cut this country in half. This is my fourth day on the road.

Ontario is big, as is Quebec. To get from the Pacific coast to this point, you cross BC, Alberta, Saskatchewan and Manitoba. To get from here to the Atlantic, you cross Ontario and Quebec. You could certainly include the Maritime provinces, those tiny siblings on our eastern shores, but you don't have to. You can reach the sea by driving out the north shore of the St. Lawrence River as far as the road goes. It stops along the shores of the eponymous gulf, an intrusion of the mighty Atlantic.

I will take as long crossing Ontario as I have crossing the three "western" provinces; for those of you who don't understand the geo-politics of Canada, BC may be the most westerly province in Canada but is a stretch to call it one of this nation's western provinces. It is most often referred to as either "the west coast", or laughingly "the wet coast", or the Pacific province. BC is different; that's all one can say about it. Of course every part of this patchwork country is "different"; that's what makes us all Canadians, we're different and in our differences we are so much the same.

Monday, 5 August 2013

Pain Again

I had a really rough night last night. An awful combination of intensified pain in my left shoulder and nausea woke me at 4:30 AM and simply would not let me get back to sleep. The nausea may or may not have arisen from the pain. The pain arose all on its own, defeating all attempts at self-calming and all attempts at chemical pain management. It was bad enough that the muscles in my neck cramped up completely. I could feel the pain all the way from my left eye socket down to the fingers in my left hand.

Eventually I managed to get back to sleep, sometime around 6:00 AM only to awaken again at a little past 8:00 AM. The pain is still here although slightly lessened. Moving is a painful experience but so is lying here, so what the hell, I might as well get moving for the day. If I am going to be in pain, I might as well be up and about while I am at it. Maybe the distraction will help.

I have never had a pain problem like this. While I have had painful events in my life, such as the year I spent with a broken scaphoid bone in my right wrist before it was properly diagnosed, this level of pain and this persistence is a whole new experience. It has been a month now, a month with a constant, nagging and regularly stabbing pain, a pain that limits movement, makes a good night's sleep more a dream than my dreams themselves. It is an ever-present, hulking, drooling, slobbering, slathering monster pleasuring itself in my discomfort and distress.

Drugs have helped but not all that much; they call it pain management, not pain elimination, and it's very poorly managed right now. I have had x-rays and ultra-sound scans to no avail. I am going to get a bone scan in September if this keeps up. Immobilization is pointless as the pain seems to care little about whether I move my arm or not. I just hurts, all the time.

One thing I will say for ALS. It doesn't have this kind of pain, at least not for me so far. Some have trouble with cramping pain, others have lung pain. For me that has not happened yet. When I think of the immense pain caused by cancer or arthritis, when I think of those who suffer persistent back pain, I suppose I am lucky in that regard. Still, this sucker hurts something fierce.

Sunday, 4 August 2013


Yesterday was the long and tedious drive across that vast open land we call the Canadian Prairies. It's a tremendous stretch of farms and fields where the major variation is nothing but the weather. The drive takes hours and hours passing farm after farm, interrupted by small hamlets clinging to the side of the highway, their economies driven by local agriculture and the odd tourist stopping by, curious to see the small museum or the old grain elevator.

The drive took me from Calgary along the Trans-Canada Highway through the southern parts of Alberta and Saskatchewan, the latter province named for the South Saskatchewan River flowing through it. The name of "Saskatchewan" is taken from the Cree word "kisiskāciwani-sīpiy", meaning swift flowing river. Personally I think it really means "Holy crap, there's a lot of empty space out here!" The only breaks in the slow, rolling landscape are the high, towering grain elevators, the new shiny steel ones, and the odd potash mine.

Hour upon hour passed. The drive from Calgary to Regina took over six of them; my nap and food break took another. At Regina I made a hard left to head northwest, nearly reversing my direction, following a check-mark shaped path, to head north to Saskatoon, once again a Cree word, like the province's name, this one referring to the velvet coloured berries that grow along the river banks and in the plains, the aptly and famously named Saskatoon berry. The drive from Regina to Saskatoon is another two and a half hours of open, mostly flat prairie along a highway once again interrupted only by the occasional small town or moose crossing.

Here in Saskatoon I spent the evening with a long-time friend, a man whom I have seen grow from teenaged youth to a dedicated father and family man. He is a decade younger than me yet he too has been through the challenges of raising children into teenhood and now faces the work of ensuring those teens survive into adulthood themselves. We had a terrific evening comparing notes about how our respective divorces worked out, how our children had grown and were growing, and how our lives were changing.

In the end it is friends and family that make life worth living. Family are the friends you don't get to choose. The bonds in family are deeply intertwined, holding together through time and space, keeping you linked to your heritage and history. When all else falls away, family remains. Friends are precious because you choose them, even more precious because they choose you. Friends may come and go in your life; true friends go and come back. For this I am grateful.

Saturday, 3 August 2013


I am struggling with anxiety this morning. I shouldn't be; I have nothing to be anxious about, I mean, other than having a terminal illness, not working and thus not making money, travelling thousands of miles alone in my truck, needing wheelchair accessible hotels and restaurants, and just life in general. But those really aren't things to be anxious about, except perhaps the terminal illness part.

That's the goofy thing about anxiety. It's not fear, nor is it worry. Both of those require something specific. Anxiety is a generalized sort of monster, picking on no particular things but picking on them all, generating that discomfort within that leads not to action but perversely, inaction. Anxiety makes you want to walk, but only in a small circle. Anxiety makes you want to lie down and sleep yet it keeps you awake. It leaves you unable to pick what to do and unable to do what you pick.

I know I can, and will, drive safely and arrive at my chosen destination. I know I have enough money for at least a couple of years and my recent experience with ALS has taught me that any horizon longer than a few years is pointless. I know there are plenty of restaurants and hotels and motels strung like little square box commercial pearls along the string of highway on which I will be driving. I know I can do this alone. Yet I am anxious.

I want to go on the road yet I want to stay home. I want to run from this awful disease yet no matter where I go, there it is right along side me, or inside me for that matter. At some point I will no longer be able to do road trips solo; this is the time to do them. As soon as next summer this kind of life may end for me, much like my sailing life ended this summer. I know I should go, but I am anxious.

I will miss my friends and the safety of home. I have learned how much I like it here, how much it means to me to have my friends around, how great a life I have. What am I thinking, going away from all of this when I am so comfortable here? What kind of idiot spends lots of money to go on a drive when he has a perfectly good life without going anywhere? Why?

You see, that's anxiety for you. No matter what question you answer, there will be another to follow it. Anxiety has nothing to do with solving anything. It's just worry without purpose. So what I will do is load my gear, get in my truck and start driving. Then, having made a decision, my anxiety will fall away like the unneeded cloak it is. I just have to get started.

Friday, 2 August 2013

ALS or PMA or Both

When you first get diagnosed with ALS the medical community, especially the neurologists, are extremely reluctant to get specific about the diagnosis and prognosis. This is, in large part, due to the mysterious nature of this illness. It strikes in so many different ways, moves in such a random pattern, and takes its targets in such a relatively short time. Making any sort of generalization is dangerous. The best they can do is to tell you, based on your current condition, is that you have ALS and most people with ALS die within 36 months of diagnosis or 5 years of symptom onset.

There are a few early signs, elements which help refine that diagnosis and timeline. If you have Bulbar ALS then your prognosis is worse. If you have upper limb onset, then your prognosis is also shortenened. If you have lower limb onset, as has happened in my case, then your prognosis is better by a few months, perhaps a year.

You get your diagnosis and they send you home to deal with your life. They watch and wait, measuring those points of the graph, measuring your FRS and FVC, noting where the signs of atrophy occur next. After about 6 to 10 months of watching, waiting, testing and re-testing the medical community begins to form a better picture of what variant of ALS you might have.

In my case, my doctors are beginning to class me into a type of ALS called "Progressive Muscular Atrophy". This is a rare group, a class of PALS with an unusual progression pattern. With PMA, the primary focus of the disease tends to be in the Lower Motor Neurons. These are the neuron sets that control most of the body's muscular functions. The Upper Motor Neurons control the brain and spinal functions.

PMA is thought to account for as few as 4% of ALS cases. PMA is more prevalent in men whereas Bulbar ALS is more prevalent in women. PALS with PMA tend to live longer however the eventual outcome for the disease is always the same. In addition virtually all PMA patients end up with UMN failure, creating the same ultimate outcomes. Basically PMA is ALS for beginners.

When I was diagnosed the neurologists said I could expect 36 months. Based on my own research, I realized that the first 12 would be reasonable although I would need the chair. The second 12 would be difficult and I would need assistance for daily living. The last 12 would be tough and I would probably require full time home care.

Now those expectations are more difficult to measure. If things go slowly I could live for 5 years, perhaps longer. If things go slowly, I could have as much as 3 years of viable time. If things go really slowly, I could be around for even longer. This is a good thing, it just requires more planning.

Thursday, 1 August 2013

We Shoot Those, Don't We Daddy!

Let me warn you ahead of time. This is a story that my Dad told me. This is important to note as one of his aphorisms for life was "Never let the truth get in the way of a good story." It has become a family motto for me. So without regard to veracity and subject to correction by my Mom, who was definitely there, here goes.

On March 31, 1960 my Mom went into labour with her fifth child. She was to learn that it was another boy, my youngest brother, Matthew. My Dad duly trundled her off the the hospital in Halifax, Nova Scotia with their four other sons duly in tow. On arrival at the hospital the medical team said to my Dad, "You take those boys and go off somewhere for a few hours. When you get back we will be done here." That's the way it was done in those days.

My Dad, trapped with four squirmy little boys, decided to take us to the new Disney movie which had just come into town, an animated feature called "Bambi". He proudly marched his four sons, or more likely marched three and carried one, into the theatre and sat us down in the midst of a horde of other children, pretty much all accompanied by their mothers. There we were, in the middle of the theatre, two boys to one side and two to the other.

The movie began and a beautiful deer dashed its way across the screen and I turned to my Dad to speak. Now, before I go any further, let me share with you something about my lung capacity. I have always had a loud voice. Even as a small child I had a loud voice. On top of that, I have never had really good volume control. Mostly it has either been on or off, and that's it. Plus, we were in a noisy, crowded theatre with music and movie and children galore.

So, in my loudest outside voice, since I was, after all, two seats away, to compensate for all the ambient noise and simply because I had no volume control, just as this wonderful antlered creature burst across the screen, leaping to life before my young eyes, I hollered to my Dad, "We shoot those, don't we Daddy!" My Dad said every mother in the theatre glared at him.

I have always had good lung capacity. Now ALS is stealing that from me. My voice is softening, weakening and becoming more "breathy". My Forced Vital Capacity, a simple measurement of lung volume capacity, is on the decline. When I was diagnosed almost nine months ago, my FVC was 90% of "normal"; I am fairly certain it was well above 100% before ALS. Yesterday at the clinic my FVC was measured at 81% of normal, a loss of 1% a month.

I am losing lung capacity because ALS is weakening my diaphragm, the muscle below your stomach and lungs that controls breathing. Eventually I will lose all ability to breathe; life will depend on a respirator. Eventually this is most likely what will kill me. Along the way, at some point, I will need breathing assistance with a BiPap. There is a more important gatepost here, however. At 50% FVC you no longer qualify for surgery. So if I want a PEG feeding tube, I will be forced to decide once my FVC hits that mark, even if I don't yet need it. At my current rate of decline, that will be sometime around Christmas 2015; I will be 60. This choice will be life's Christmas gift to me.

It may seem an easy choice, get the surgery and live longer; let me assure you there is a lot more involved here than you think. One issue is the potential for a "crash" in my FVC; it happens a fair bit where some incident triggers a more rapid decline. Another issue is the complicated question of quality of life, living with a BiPAP and a PEG.  There are lots of other concerns, too many to cover in this short blog entry, things like care requirements and risks, impact on daily living, food and drink requirements, and so on.

For now, I will remember the story out of my past. It makes me laugh. The story I see in my future? Not so much.