Wednesday, 30 September 2015

Private Tears

I cried last night. I cried for most of the evening, yet nobody saw the tears. When I was out, I kept the tears in. When I came home, when I was in, I let the tears out. I do that a lot, cry on the inside while seeming happy on the outside. It is a trick I learned long ago, perhaps even as a child. I suspect many of us learn that skill, that ability to seem in good spirits while dealing with an internal tragedy.

It started last night with my trip to trivia. My regular group has been shifted by circumstance to a location where the trivia night is held upstairs in The Libertine Public House in Calgary. There is no wheelchair access to the upstairs. When I brought this up to the manager, he said they would figure something out. So I took him at face value and showed up last night. The duty manager apologized and said there was no way they could get me upstairs with the rest of the trivia players. I would have to go elsewhere.

This was not really a surprise. I knew it would happen. I really didn't take the manager's word for it; I've been through this mill more than once. What I was really doing was laying the groundwork for a Human Rights case. It contravenes the Alberta Human Rights Code for a business to offer a service or event which is exclusionary to handicapped individuals, like me, without making a reasonable accommodation for that handicap. I was prepared to go through the embarrassment of having to be carried up the stairs; it seemed reasonable and was the suggested solution by management, a solution which was not delivered. However before I can raise the issue with the Alberta Human Rights Commission, I have to attempt to attend the event, even though I knew it would be a failure, a humiliation.

What really hurt me, though, was that my friends all still went up those stairs, some passing by me on the way. In other words, just because I couldn't go didn't mean they wouldn't go. My exclusion didn't seem to make that much of a difference to them, beyond, perhaps, the smallest amount of feeling bad for me. I could not go up those stairs, so I went somewhere else, tears on the inside.

I was texting my brother about it last night, at home, in the midst of those tears. He acknowledged how much that hurt, and agreed with me that if it had been him, or any of my other brothers, they would have gone elsewhere with me. Sadly, it made me miss him, and my other brothers, all the more.

It's getting so I don't know what to do with my sadness and anger. I don't know where to put it. I can't keep it inside forever. Sooner or later, it's going to come out. I suspect, eventually, that I will stay home a lot more, where I can cry in private rather than hiding my tears in public.

Tuesday, 29 September 2015


How often do you want to shout at things, inanimate things, things that happen to you for which you have no response? How often do you sigh, resigning yourself to a reality from which there is no escape, no liberation?

It happens to me almost every morning, especially those mornings when my body is having a rough start, like it did today. I often say that mornings are not easy for me. Mostly I get into the physical part of why that is so. This morning, however, beyond that most troubling of starts to a day, I felt more of the emotional, psychological anger, more of the frustration, even though I was mobile and alive.

I started out with a non-verbal shout. It wasn't quite a scream; that would take to much energy. It was more like a bark, the kind my Dad perfected when seeking to gain the attention of a houseful of unruly children. There were expletives, that's for sure. And it was all inside my mind. I yelled internally, quietly, that I was sick and tired of all this shit, and I didn't want to do it anymore. Then, a few minutes later, I sighed, not out loud but in my mind, saying to myself in my saddest Eeyore tone, "Oh well. It's not like I have any choice in this."

That's the real psychic strain with ALS, that I simply have no choice in the matter. I can't fight it with treatments. I can't stop it with surgery. Unlike almost anything else in life, I have no way around it. I have to go through it. There is nothing I can do, no plan I can make, no tactics I can take. I just have to get up each day and accept that this is what is happening to me.

Of course the rest of the world has that same situation. They wake up each morning with their reality. The only difference is that, for almost all of them, there are choices, perhaps even an end in sight. For pALS like me, there is also an end in sight. There just aren't a lot of choices.

There is one choice I do get to make, the choice to get up, the choice to keep going in spite of that internal voice yelling at me to give up. This is, perhaps, the toughest choice of all. Oh well, as Eeyore would say, it's won't make any difference. I might as well get up.

Monday, 28 September 2015

Meadows In The Sky

There are roads out there that call to me, singing that siren song of exploration, a whispering insistence from the woods clinging to their side. The very names of some of these byways, names like "Going To The Sun Road" or "Top of the World Highway", shout of adventure. There are roads which demand that you drive them in respect of history, roads like Route 66, or roads from popular culture, like Hollywood Boulevard or Fifth Avenue or Bay Street. There are roads with names that go to destinations only the familiar can find, roads like The Dempster Highway, The Alaska Highway, the Mackenzie Highway or the Trans-Labrador Highway.

I find roads that call to me. Some calls I can answer, others I cannot. Time and travel do not always make for good companions. There is never enough time to see it all, never enough time to explore at the whisper or song of a sign tantalizing you with what might be up that road. For many years there has been a road I have longed to explore. It's not a long road, nor a distant road. It's right outside of Revelstoke, part of Revelstoke National Park here in Canada. it is the "Meadows In The Sky Parkway". Just the name is enough to make me want to see what is up there.

The MITS Parkway is a snake that slithers its way 26 kilometres along and 1,000 metres upwards towards the peak of Mount Revelstoke, from an elevation of 470 metres at the base to 1,500 metres at the summit. It is a narrow, winding road, barely wide enough to two vehicles to pass, so narrow that RV's and trailers are not permitted. This spaghetti strand up the mountain side has 16 switchbacks, hairpin turns cut into the mountainside where the road must go upwards, as it can no longer go along the mountain's edge.

This road has called to me for many years. Every time I would drive through Revelstoke I would say to myself, "I have to go up there some time." I even tried it earlier this year but the roadway was closed due to the still heavy snow on the mountaintop. Finally, yesterday, we drove that road, from base to summit.

It was a fascinating drive, going as promised, from the dense rainforest at the base to the open alpine meadows at the peak, passing amazing viewpoints of the surrounding valleys and mountains at virtually every turn. The wildflowers, running riot with colour in the late summer, had gone, leaving only the frost turned leaves to splash yellow amongst the green of fir, pine and cedar. The crisp, cold air atop the mountain was exhilarating, a breath of chill just enough to remind me that I was outdoors.

At the top, Katherine explored, walking some of the shorter mountain trails, taking pictures, smelling the air. I, trapped as I am in a wheelchair, could do little of this, so I made the best of it I could, opening the windows of the truck, sitting there reveling in the cool air, gazing at the meadows and rocky crags surrounding me. I sat there remembering other summits, other mountains, other climbs, other days.

Then we drove back down the mountain, the roadway seeming so much fast going than coming. Another adventure ends. The road had called to me. I had driven it. That's what matters.

Sunday, 27 September 2015

A Bit Of A Wander

We didn't make it home yesterday. That's not a bad thing. We decided to wander a bit on our way out of Vancouver. We wandered over to Maple Ridge and stopped by to see Chris and Dianne at home. That certainly took more than a couple of minutes. Katherine got the tour of the house and I chatted with Chris for a bit. By the time we got underway again, a half an hour had passed, a happy half an hour.

We wandered further up the Dewdney Trunk Road in Maple Ridge, right through to Stave Falls where I showed Katherine where we lived for those tumultuous years, in a 900 square foot house with a dozen kids. I tried to show her the old pond, the back pasture, the yard, the barn and sheds, but they were mostly overgrown with alder and brambles. The place isn't the same, but it's been nearly 50 years so what can you expect.

I took her to see Rolly Lake, one of my favourite places in that part of the world, a perfect little mountain lake, filled with trout, small enough to swim in and even across, with a terrific pathway all round. Fifty years back it was a bit more rugged, with a lot more fish, and bigger fish, but that might just be my memory playing tricks on me. No matter, it is still a beautiful little lake.

Our road finally took us out through the forests and back to the highway in Mission, where we crossed the Mission Bridge. I told Katherine stories of before the bridge, when we crossed the train bridge, and how the old wooden ties caught fire at least once every year. I told her about when they built the new bridge, and how they have added to it over the years.

We made our way to Lepp's Farm Market, where we had a wonderful snack and coffee with Meaghan, Charlotte, and Orson. She chattered on, and on, telling us all her stories and asking us for ours. The Charlotte said "I wish they could make your legs well so you could walk again." I thought how much I would like that too.

Our wandering journey continued as I showed Katherine the Vedder Canal and the Chilliwack River, ripe with spawning salmon at this time of year. There were plenty of people fishing, plenty of pink salmon spawning, and plenty of dead fish on the riverside. It's her first experience with this fact of nature; she didn't care for all the dead fish. She also commented on how easy it seemed for people to catch them. At this time of year, it's not difficult.

Finally we headed towards Calgary on the freeway, but instead of taking the newer, faster Coquihalla Highway, we wandered up the Fraser Canyon on Highway 1, the original Trans Canada route. We stopped at Hell's Gate, then again at Lytton where the Thompson River joins the Fraser River. After the requisite photographs, we finally wandered up to Kamloops, where we spent the night.

Not every road trip has to go as planned. Not every destination must be achieved. In fact, the more I get used to what ALS is doing to me, the more I realize how pointless any plan really is, for the most part, at least when trying to plan your life. I have goals. I have ambitions. They are just more of a wander now than a direct route.

Saturday, 26 September 2015

Driving Home

It's another road day today, this time the long haul from Vancouver to Calgary, a drive which I plan on making longer in order to show Katherine where I lived as a child and to take her up the Fraser Canyon on Highway 1. This will turn the drive from Vancouver to Hope into a five hour affair instead of its usual three hour tour.

I'm actually looking forward to this, not just for Katherine by for myself too. I enjoy taking a look at some of these old haunts. Then the drive up the canyon is always beautiful. I suspect Katherine will really enjoy some of the scenery, and she might even enjoy seeing where I once lived. Perhaps the fact that the old two-room school is now a Buddhist sanctuary might amuse her. Things change, especially after nearly 50 years.

All of this means we might actually make Kamloops by 5:00 PM today, a bit later than would be good, but timely enough that we might be able to stop for dinner, or at least for coffee, with Mike again. Then it will be a seven hour push through to Calgary, with our beds waiting for us when we get there.

I am confident I can do this; I am a lot tougher than I seem sometimes. While this disease wears me out, I still have some reserves of energy that I can call on when needed. Sometimes those reserves even respond; other times, not so much. On many days, driving is as revitalizing for me as resting at home. I'm hoping for one of those days.

On the plus side, if I cannot make it, Revelstoke is a nice place to stop. The Hillside Inn there is lovely, if we can get a room. If not, there are plenty of other rooms in town, as well as rooms in Sicamous, Salmon Arm, or even Golden if it comes to that. We have choices, such a good thing. It will be a great drive today.

Friday, 25 September 2015

Playing "If"

If. It's a game I play in my mind. It's a torture I live with every time I think of the future. Whenever I plan something these days, something more than a few months off, I add the conditional of "if". I said it to Katherine this morning. We were talking about coming to Victoria again and I said "if", not "when". If I am well enough; if we can afford it; if I can travel; if I am still alive; all if's, Of course these "if's" apply to most of us. The only difference is that my "if's" have more of a tinge of actual to them, not the possible that applies to so many.

The other 'if" I torture myself is the "if" of a positive future. What would I do "if" they found a cure for ALS? What would I do "if" they found a way to stop the progression? What would I do if I had strong legs again, if I had strong arms again, if I had a future once again?

If my legs were strong once again, if I could walk once again, one of the first things I would do would be to walk over to Katherine's place, walk up here stairs to her living room, walk into her kitchen. If my legs were strong once again, I would walk up the stairs to her bedroom and make love to her, fully, completely.

If my legs were strong again, I would jump in the pool with my grandchildren, catching them as they leap from the edge into my arms. If my legs were strong once again, I would take them for a walk, or for a sail on my sailboat, showing them the wonders of the woods and the beauty of the ocean. If my legs were strong again, I would chase after them in the park, playing tag, throwing a ball, giving them piggy-back rides.

And then there is my arms, should they return to strength. Fishing, camping, even something so simple as picking them up; all these I would do, and more, if my arms were strong once again. If I were whole again, I would go back to work, but only part time. After all, I have a lot of living to do yet. If I were whole, I would continue to adventure, only then it would be to places where I cannot go today.

This game of "if" is a torture, tantalizing me with things I most likely will never do. They might find a cure for ALS on time for me, but it is doubtful. There might be a miracle for me, but they don't happen very often. The real game I have to play is not the torture of if, but the pleasure of now. I don't do "if" that often; mostly I do what I can do when I can do it. If is a dream; now is a reality.

Thursday, 24 September 2015

Finding Humour

There is humour to be found everywhere in life, even when you are living with ALS. Each morning I have to empty my jug from the night before. Each morning when I wake up I struggle with excessive shaking, clonus, as my motor neurons try to coordinate themselves. This morning I got out of bed rather quickly, something I don't usually do. I grabbed my jug and went to empty it into the toilet. As I poured out the contents I noticed that my hand was shaking so bad it helped empty the residual drops which almost always remain behind. Clonus wins!

Then, as I was reading the comments in one of the many ALS groups I follow, I saw a line from one fellow who is clearly further down the road than I am. He said, "My wife doesn't want me to have a second cup of coffee cuz it will make me poop again." Clearly his wife is somehow invested in maintaining, and even limiting, his regularity. She must be responsible for getting him on and off the toilet. Thankfully I am not that far gone yet. But it's a funny line.

Both of these situations, and many more on any given day, show the absurdity of this illness, how we can lose our physical capacity yet keep our intellect, and more importantly, our sense of humour. Truth be told, I laugh every day. I laugh often. I laugh over the smallest bit of silliness and the ridiculousness that happens to me on a daily basis. Given that there are no other medications for ALS, laughter truly is the best, and only, medicine.

It's difficult some days, keeping this perspective, realizing that life is how it is right now, not how it was yesterday or how it might be tomorrow. Tragedy plus time equals humour. I'm certainly dealing with personal tragedy. And given that my time is short, I need to find the humour as quickly as I can. It's worth it.

Wednesday, 23 September 2015

Rain On The Coast

It's a quiet day here in Uclulet today. There is a typical West Coast rain falling, thin drips in a thick spread, small enough to seep into every crack, crevice and pore. It's almost sheet-like, leaving no patch of ground nor creature untouch. Dry is only found indoors; the rain here manages to find a way into everything, even the shelters designed to keep the rain out. It's not cold outside, until you factor in the wind and rain, then it is the Devil's own version of cold, a chill that drives right to the deepest bone within.

I know a lot about this kind of rain. I've worked in it for days on end, sometimes only 8 hours, sometimes 16, outdoors, swinging a sledge hammer on an open mill deck. I've walked in it, too and from school, sometimes only a kilometer or so, sometimes more. I've stood on the deck of my sailboat, holding the tiller, helming my way up and down the coast of BC. In all of my time, I have never felt anything so knife cuttingly cruel as this kind of West Coast rain.

Today we are going out for a bit of exploration. I plan on showing Katherine the Pacific Rim wonder that is Long Beach. I'll also take her up Radar Hill so she can take a look at the old radar site. Then we will head off to Tofino to take a look at the town, some of shops, and, ultimately, the Weigh West Pub, a favourite hangout of mine over here.

My friend Chris Gordon likes to call me from the pub whenever he and his wife are vacationing in Tofino. He likes to ask which is the sand bar that I ran aground on while sailing into Tofino Harbour. Sometimes I will respond, other times I will not. Grounding or no, I am blessed to have sailed my own small boat into Tofino Harbour, one of many wonderful stops as I made my way around Vancouver Island in 2006. It's almost a decade ago, and certainly a lifetime ago; only one of so many adventures I've been fortunate to have and survive.

Today I will sit in the truck while Katherine explores in the rain. Today I will stay dry while Katherine feels that drizzling rain and biting wind. Today I will get out of the truck only when I have to. It takes a lot for me to get in and out of the truck. I want to save that energy for something that matters, like a beer in the Weigh West Pub.

Tuesday, 22 September 2015

To Tofino, Almost

We are staying at my Mom and Ray's place in Vancouver. It is a pleasant place, with Mom and Ray watching TV and Katherine sitting next to me at the table. The bathroom here is a real challenge for me; I am unable to make the transfer to and from the toilet without assistance, and the bed is a bit of a challenge too, tightly fitted as it is into a small bedroom.

The reward Katherine and I enjoy by staying here is the time to visit, not just with Mom and Ray, but with other family and friends too. Yesterday we spent the afternoon with Meaghan, Lewis, Charlotte and Orson. Our adventure took us to the Aberdeen Centre in Richmond, with its Daiso Store, a veritable treasure trove of all things Oriental. Katherine and Charlotte had a field day, finding excitement after excitement on almost every shelf, in almost every department. We managed to get away with just slightly less than a truck load of stuff; Charlotte did very well.

For dinner, Mom opted for KFC at home, a real treat for her. Chris and Dianne drove over from Maple Ridge and, surprisingly unexpectedly, Meaghan and family decided to stay for an extended visit. Charlotte charmed us all with her antics. Chris and Dianne told us of their adventures in the US while on vacation. Orson, not yet six months old, posed quietly for pictures and tolerated the hand off from person to person. Of all the pictures taken by Charlotte, my Mom and others, the best from my perspective was the photo with Mom, me, Meaghan, Charlotte and Orson; all four generations in the picture.

An evening of rest followed. I needed to catch up on sleep after my marathon drive the day before. As Katherine noted, I was likely only able to do this because I was well rested before we left. It was only the first day of the trip. Today we will head out again. Once again I am well rested. Only this time it will be a short drive to the ferry followed by a three hour drive to Uclulet, near Tofino. We are on the road adventuring once again.

Monday, 21 September 2015

For Just One Moment

I am in Vancouver, having made the long trek down from Calgary in a single day of driving. Not only did I do the drive in one day, we managed to stop for breaks in Canmore and Revelstoke, along with spending a wonderful hour with my friend Mike, having dinner at the White Spot in Kamloops. If it sounds like I am proud of myself, I am. I can still do it, still make the long drive.

What is more interesting is the kind of mental space I can get into on these drives. After a day at the wheel, when I really settle into "the zone", with the cruise control on and a long, easy highway in front of me, there are times when I actually forget that I have to use hand controls, that my legs are paralyzed, that I have ALS. For a few, blessed, peaceful minutes, I forget about the disease and slip into a place of calm where I think I am just like every other driver on the road.

It's an amazing thing, this mental space I get into. I forget that my legs will not move on command. I forget that they are dead, completely unable to respond to the call of my mind. For a brief, inconceivable moment, I think they actually might move if I asked them, that they might magically recover their strength, that I might actually get better. Then, as if to deny myself the joy of this brief reverie, I try. That single instant, that minuscule effort, reminds me enough. The spell is broken.

The funny thing, though, is that the feeling lingers on in spite of the reality. I continue, for the shortest of time, to not think about my legs, to not wonder about my arms, to not worry about progression. Even though I know it will happen, the thought of it leaves me. For one, brief, shining moment of glory, I am whole, complete, at peace. Then traffic drags me back to reality.

I may not be able to beat ALS, but I sure as hell am not going to let it beat me. I will continue to live, not in the hopes of a cure, nor in the belief in treatment, but in the wonder of living within that moment, that moment of peace and contentment. No wonder I like a good road trip.

Sunday, 20 September 2015

I'm In A Grumpy Mood

I'm grumpy this morning; not really angry but that middle of the road pissed off that you get when things not only don't go your way, but seem intensely perverse in making life difficult. I'm crabby, and I have two very good reasons for it.

Let's start with last night. I did very well last night. I did all the laundry, folded it, and put it aside so I could use it for packing later in the evening. I was done the laundry before 6:00 PM when my friend Anisa came over to help me with some winemaking tasks. I had been given a white wine kit the day before, so our first task was to make this new kit. Now I have Katie's "blush" rose wine in a carboy, my two red wines in carboys, and Anisa's white wine in the primary fermenter. That's 120 bottles of wine on the go. Plus we racked one of my batches of red and added clarifier to another. We finished by 8:00 PM. Then I packed. Everything was done and in place by 8:3- PM, well ahead of plan.

Even though I had said to myself and Katherine that I would go to bed early and not have alcohol last night, I thought I might celebrate my hard work with a glass of scotch before bed. So in I went to get myself a glass. Of late I can no longer easily reach the scotch glasses on the second shelf of my cupboards. What I do instead is use my "grabby stick" to slide a glass over the edge of the shelf, catching it into a soft receptacle, most often the blue plastic colander I use for straining pasta. Only this time I missed the receptacle, not once but twice! Needless to say, both off target glasses shattered on my counter neath the cabinet.

I was upset, embarrassed about this further loss of ability, about the reality that I am no longer consistently able to do something as simple as hold up the colander and drag a glass into it. I was so upset and embarrassed that I made up a lie to tell Katherine so I didn't have to admit I broke the glasses while trying to get at a scotch glass. Alas, I am no good at lying, so the truth will come out.

In that state of distress, I had my scotch, and another, then went off to bed. When I sleep, sometimes I keep the window in my bedroom open to allow the cool morning air to come into my room. Most times I can sleep through the traffic below. Most weekends, especially on Sunday mornings, there is almost no traffic until nearly 10:00 AM. So mostly I can sleep until at least that time.

This morning, however, is the morning of the Ronald McDonald House fundraising run, the one that starts with pounding music while they do setup at 8:00 AM, followed by pounding loud music starting at 8:30 AM, all spiced up with speeches intended to motivate and enthuse the runners. Now I know that my life is different than most; I know that normal people get up at some God-forsaken hour in the middle of the night, some as early as 8:00 AM, some even earlier! But really, can I not cut a break anywhere?

So I was awoken early by the noise across the street, on a day where I am looking at an 11 hour drive to Vancouver. I woke up still upset from the broken glass incident last night, an incident for which I had left the cleanup for this morning when I could see better. I woke up remembering that I had forgotten to put away three towels I had folded last night. I woke up realizing I had lied to Katherine just to avoid admitting I had scotch last night. I think I have a couple of reasons to be upset with life.

I am awake now. I have written. My gear is packed. Katherine will be here in moment or two. It's time to get the hell out of here, grumpy or not. Oh well, at least I have a coffee beside me and Katherine coming with me. That is the good part of my morning.

Saturday, 19 September 2015

Colour Blindness

I often wonder about how I did as a father, how I was for my children during their younger days. I know I was absent a lot, at least emotionally; it was the best way to avoid fighting with their mother. On a great many days, hiding in my office and staying away from Carla was the best way to ensure peace in the home. In fact I often feel I abdicated in my role as father, leaving the complete field open to Carla, just so as to keep the fighting down.

There is, however, one area where I feel I did a really good job with my kids, the area of colour blindness. I have always believed in the words of Martin Luther King, Jr., that a person should be judged not by the colour of their skin but by the quality of their character. I truly wanted my children to grow up in a household where race, creed, colour, ethnicity or sexual orientation had nothing to do in choosing friends or companions. Sometimes I had to work hard at this, building my own character. I wanted my children to strive for higher ideals.

Mostly I think I was successful. Certainly the model of my own life is a reasonable example. I have friends, people I love, of every possible ethnicity and religion. I have Christian friends, Jewish friends, Muslim friends, Hindu friends, Sihk friends, Wiccan friends, and even a few Athiest friends. I strive not only to respect but to support their beliefs whenever I can; where we differ, I do my darnedest to respect the differences no matter how strong that disagreement.

It makes me proud when I see my children reflecting that belief in their own lives. As youngsters and teenagers, friends of every background were welcome in our home. As adults I think, and hope, their catalogue of companions reaches far and wide. As adults, my dream for my children is a world where this kind of inclusion and understanding is universal. This is a dream which can only be built one child at a time, in homes where people celebrate the multicultural difference which make Canada a truly wonderful place to live.

I want my politicians and government to reflect this dream as well; none of this "old stock" Canadian nonsense. That's just a code word for "white". I have Chinese friends whose families have been here longer than mine; their Canadian stock is much older than mine. I have friends whose families left India before the turn of the 20th century; their Canadian stock is much older than mine. There are black families in Nova Scotia who have been there since before the US Civil War. And all of this says nothing about the natives of this land who have been here for millennia.

We, as a people and as a nation, can only win the battle for peace through peace. We can only win the battle for acceptance by accepting. We cannot expect our culture to be respected if we don't respect the culture of others. All that I ask is that those cultures strive for, and educate their children to, the same kind of standard as all Canadians; that we be judged not by the colour of our skin but by the quality of our character.

Friday, 18 September 2015

I Just Never Thought

Every morning when I get up, after spending a good deal of struggle to get vertical and into a sitting position, the first thing I get to see is myself, reflected in the full size mirror doors of my bedroom closet. I get to see my misshapen body, fat belly, flabby thighs, skinny calves, swollen and discolored feet. And I say to myself, "What the hell happened to me?" Perhaps the mirror doors were a bad idea.

After I manage to struggle into my wheelchair, I roll into the bathroom. There I transfer to the toilet, an effort which leaves me seated on the toilet while still wearing my underwear. So I fight to get them off. At that point, sitting there on  my toilet, while I wait for gravity and nature to take its course, I need only turn slightly sideways to see myself in the full wall width mirror on the wall above my sink. I see the cottage cheese musculature that remains in my arms. I see the chicken flap of loose skin hanging where once muscles held sway. I see the sagging eyes, sad with the weight of ALS. And I say to myself, "What the hell happened to me?" Perhaps the full width wall mirror in the bathroom was a bad idea.

After nature finishes what it can, and I finish cleaning up the rest, I get to go back to my bedroom and stare at myself once again. The question changes to an admission. "I never thought it would end this way. I never thought I would finish my life in poverty and shame, struck low by the cruelest twist of fate. I never thought I would be dependent on the charity of my family, of my friends, of the woman I love. I never thought..."

Mornings are not good for me. It would be easy for me to spend a lot of time in self-pity, sadness, even misery, were I to stay in that frame of mind. It would be simple to crawl into a self-created prison of unhappiness. Yet that is what I cannot do. For in so doing, I truly surrender myself to what I have lost through ALS. So I get dressed, once again make the transfer to my wheelchair, once again look in that god-damned mirror, and then I leave that room, and those feelings, behind me.

By the time I am out of my bedroom, by the time I am at the keyboard, by the time I have my first sip of coffee, I begin to look forward instead of backward. Morning is my time of mourning. The rest of the day is for living. As to what the hell happened to me; ALS. As for ALS, I try not to give it much thought.

Thursday, 17 September 2015

This Land

I'm home, back from an absolutely wonderful stay down in Waterton. I am so fortunate that Katherine not only loves these adventures as much as I do, but that she also cares so well for me on our travels. I am certain I can still travel solo; I just don't think I want to anymore. I certainly would not enjoy it as much, nor could I do as much. Even the small help she gives me getting in and out of the truck makes a world of difference to my energy level as well as my enthusiasm level.

The drive back from Waterton was as wonderful as the drive there. I am unsure as to which is the prettier; the drive down through the Porcupine Hill to the edge of the Rockies, or the push eastward from Waterton to Cardston then upwards across the prairie to Calgary. Both are the kind of countryside that can at once calm the mind along with stimulating the imagination.

As you move away from Waterton into the rolling hills so close to the Rockies, you move into cattle country. It's easy to look out, changing in the palette of your mind those cattle into buffalo. As the land quickly levels from rolling hills to flat ground it reminds me of a half-made bed, where one side is all rumpled blanket and the other side is a smooth, flat sheet. Once again the easel of my mind repaints the scene in front of me, wiping away the fences, houses, powerlines, barns, all that the white man has put on these plains, replacing them with nothing, converting the cattle to buffalo and the grain bins into teepees.

It's easy to see how this land so attracted our forefathers; they committed such crimes to take it from the natives and I am the benefactor of those crimes. It's also easy to imagine the land when the railroad did not run hard across the plains, cracking into the Rockies in a cultural explosion which would sweep away those who once called this place their home. It's easy to imagine a million buffalo, herds as far as the eye could see. It's easy to imagine mile upon mile of endless sweeping prairie grass, green in the summer, brown in the fall, snow covered in the winter.

It's also important to remember these things, that there was a time when the railroad did not run, when the white man did not shape the land through industry and power, when the wind blew unstoppable from the Rocky Mountain ramparts clear through to the Ontario border, but for a few hillocks and thickets of trees. It's important to remember that, even though seemingly tamed, this remains a wild landscape in so many places, while we, men and women of power and industry, are still creatures in the food chain. Just as we can live off this land, this land can live off of us.

I love this country, what it once was and, for the most part, what we have made of it, cities and wilderness alike. I love the way this land has shaped us as a nation, and the way we as a nation have shaped this land. We have so much to treasure, so much to enjoy, so much to be a part of. I am happy that I have lived here. I will be happy to die here.

Wednesday, 16 September 2015

Prince Of Wales Hotel, Waterton

Katherine and I are sitting the Tea Lounge of the uniquely beautiful Prince of Wales Hotel here in Waterton Lakes National Park, next to the high, narrow window reaching up to the second floor balcony, offering a stunning view over the hotel patio and down the long sweep of the glacially cold lake. The hotel, a 6 story gingerbread hotel which could be right out of the Swiss Alps, is old, quaint, with a deeply grained wooded interior. it's iron chandelier reaching up all five of the interior floors contained within the central atrium which hosts the Tea Lounge.

The staff here, mostly younger people working the summer season, are dressed in the Royal Stewart kilts and flashes, reflecting the regal naming of this unusual gem nestled against the Rocky Mountains in southern Albera. A harpist gently plays in the background as the staff serve tea and sandwiches. Outside it is chilly, mountains driving the wind down the lake. Waterton Lakes National Park is sufficiently south that the lake itself is shared with the US Glacier National Park, as are most of the surrounding mountains.

The village of Waterton is a summertime town, closing down in late September, opening again in early June. In these long days yet short months, thousands of people visit here. Waterton is a very busy place in the height of summer. Now, as the fall approaches and the hotel readies to close for the season, there are still plenty of guests even though the season is near ended. Soon almost every business in town will shutter and close; most summer residences are already closed. Staff will leave and the town will be near empty.

In winter, so rapidly approaching here in the Rockies, Wateron is a small idyll of snow and ice, popular with the winter hiking and cross-country ski crowd. Only two of the town's many hotels and guest houses open for that cold, dark season. Instead the town becomes the haunt of deer, mountain sheep, elk, fox and whatever else decides to wander through. Even the quaint, eclectic Prince of Wales Hotel will close this weekend, a skeleton staff remaining to care for the building during the cold months.

Then, in June, all here will spring to life once again. The grass will green. The lake will thaw. The snows will flee. The trees will leaf. Once again, summer will come to Waterton. Would that this could be me, that I could enter the winter of my life certain in the knowledge of spring, certain in the rebirth offered by a new summer. For now, I will enjoy this fall season, this slow closing down. For now, both Waterton and I are getting ready for a rest.

Tuesday, 15 September 2015

Back To Waterton

I'm in a hurry. I have to finished packing and loading the truck for a short road trip. Katherine and I are headed to Waterton Lakes Park for a couple of nights. This is a make-up trip, where the Waterton Lakes Lodge has given me a coupon for two free nights as an apology for what happened on February 24, 2014. I want to say a special thanks to Waymarker Hospitality for making this happen.

The drive, about 3 hours or perhaps a bit longer, will be a wonderful exploration today. The skies are a mix of blue and cloud. The rain has stopped. The air has that fresh autumn smell to it, that breath of crisp coming winter mixed with the promise of a few more days of summer sun. It's that time of year when nature is busy packing away the summer and getting out its winter clothes.

We'll head south from Calgary along the southern portion of The Cowboy Trail, that highway in Alberta that skirts the edge of the Rockies, keeping just close enough to be in the foothills, and just far enough that the snow-capped peaks and sharp edged ridges visible only as an idea. This time of year might bring out the moose, the grizzly and black bears, the elk. Who knows what we might see along the way.

The drive itself, with nothing more than the cursive of the Porcupine Hills shaping the road, is both a pleasure and a treasure. Whenever I head south, this is the road I want to take, far enough from the busy freeway for traffic to be light, open enough for the cattle to roam freely. We'll head down to Pincher Creek, and then head even further south, and west into the mountains themselves, until we come to Waterton Lakes National Park. Then, for a couple of nights, we will watch the lake, enjoy the mountain scenery, marvel at how tame the deer are in town, and perhaps even see a Mountain Sheep blocking the road as they do. It will be a lovely break from "normal" life.

Monday, 14 September 2015

I Want To Cry

I want to cry, but I can't. The tears won't come. I go through this a lot, as the cycle of frustration with ALS ebbs and flows. I'm pretty good most of the time, although I constantly fight with the negative feelings and emotions that come from my situation. I take medication to help with the emotions, but even with that they come full on some days, hard and strong, pushing me downwards, backwards.

Often these strong feelings are triggered by an event or significant change. I've seen a lot of change in my upper body strength in the last few days and weeks, especially while my body was fighting infection recently. I was reminded through that battle that things lost, regardless of how you lost them, do not come back when you have ALS. I still suffer from pain in my left knee from when I fell in my boat almost three years ago. Repairs don't happen when your body is spending all its time fighting the illness.

That is what I am dealing with right now, the emotional impact of realizing that I have now become completely unable to lift myself fully and freely out of my wheelchair. No matter how I approach it, my flaccid thighs seem to be gravitationally attached to my wheelchair cushion. Never mind that I can no longer transfer to and from my bed, what I have to do to get off my shower bench is the real story.

When I shower, I sit on my bench. The transfer to the bench is downslope, and mostly works even though I actually slide off my cushion rather than lift off. The transfer from the bench back to the wheelchairs is, however, upslope. This means the cushion prevents me from making the trip. In order to make this transfer, I have to take my flabby thigh and lift it ever so slightly over the edge of the cushion, preventing the combination of cushion and thigh from curling up and blocking my sideways motion.

Of course this movement of my thigh flab also impacts my butt cheek on whichever side is in action. That spread of cheek means I am more likely to hit my more sensitive posterior parts on things like wheelchair bits, or the edge of the shower bench. In other words, I regularly end up with hard pieces of wheelchair shoved into my ass, and not the broad ass area, but the specific, small opening. Even though I use towel to protect me during the passage, it seems to happen regardless, often enough. Aside from the simple pain of it all, it's another humiliation in a humiliated life.

And it makes me want to cry.

Sunday, 13 September 2015

Trees And Leaves

It happens here in Calgary, these sudden changes in temperature. Last night, when I went to bed, it was still 24C outside after reaching a high of 30C in the afternoon. This morning, or rather at noon today, it's 10C outside and unlikely to get much warmer. Fall has arrived, with its cool temperatures and intermittent rains. It will warm up this week, but only to the high teens. We have seen the last of summer.

The trees knew this was coming, that the season of warmth was ending. The leaves of many had already begun to yellow, some as early as a few weeks ago. Others held out, keeping their green shade steady until last night. Now, even the most hardy of these has begun the turn. The rain has them, their soaked, sodden leaves hanging limp, ready for the first whip of wind to strip the branches bare.

Autumn outside my window is a duo-chrome; a choice of green and yellow, this being the hue of the most common trees in this area, birch, ash, poplar and aspen. Still it is enough. I can see the tawny shift in colour in the treetops near Nose Hill, off in the distance to the north. They fight, some of these trees, some of these leaves, hanging on as long as possible, defying the weather gods, keeping their attachment. Not all of them lose the battle, whisked off the branch by autumn winds; some hang on until the bitter cold of winter freezes them in place, until a wind snaps them brittle from the branch.

Life is kind of like these trees. All around me they are changing. Some have gone from the brilliant green of summer to the yellow of death early, some as early as a month ago. Some are hanging on, fighting the cold and rain, grasping every bit of life until yellow is forced upon them by the cold and frost. Even within the tree, some leaves seem to have more strength than others, some seeming to be able to withstand so much, others withering before their time.

Yet life is a zero sum game; it all ends. Each moment spent on one thing is a moment lost on another. All of the leaves will fall, eventually. Even the strongest, even the one with the greatest attachment to life, will finally give up its all and drift away on the wind. While my tree is passing into winter too soon, other trees continue on, still green, still growing. Perhaps the best thing is the persistence of life. Even as this season ends, life is preparing for the next. New leaves will replace the old. New life will come.

Saturday, 12 September 2015

Frosted Flakes For Breakfast, Or Lunch, As It Were

On November 29, 2012, just one week after I was diagnosed and given the terrible news that I had ALS, that my life would change in cruel and uncertain ways, that I would die without achieving my full life's potential, just a mere seven days after all of this crushing weight was added to me, I wrote what may have been my first blog post that found an upside to having ALS. On that day, I wrote that I was having Frosted Mini-Wheats for breakfast. After all, a healthy, weight loss diet made little sense with ALS.

Now, here I am, almost three years later, enjoying a bowl of Frosted Flakes for breakfast. The odd thing is that in between, I returned, almost naturally, to a healthy, light breakfast filled with protein and nutrition. My normal morning, or noon, feeding consists of a piece of cheese, a slice or two of Prosciutto ham, a boiled egg, and perhaps a Baby Bell Cheese bit as well. Of course I ruin all that healthy goodness by having one, and often two, cups of coffee to go along with it. Oh, and some water too.

Over the last week I have had this incredible craving for some sort of sweet breakfast cereal; not too sweet, like Cocoa Puffs or Lucky Charms, nor one of those pseudo-healthy nut and crunch cereals. And oddly enough, I didn't want my good, old standby, Frosted Mini-Wheats. I wanted something in the Goldilocks zone, not too sweet, not too plain. So Frosted Flakes it is.

You might wonder why breakfast cereal is such a big deal. Actually, it's not. The big deal is that I can have a craving for something like this, and happily give into it, still enjoying my ability to eat, to swallow, to taste, to savour. The end is nigh; a time is soon coming where eating will be too much of a challenge. That's why enjoying this moment is so important. I need to live while I am still alive.

That's the only way to defeat ALS. I learned that in an epiphany almost at the same moment as I was diagnosed. After that stunning news, merely a few days later I was finding ways to live my life fully, even if it was a something as mundane as breakfast cereal. I don't believe in a glorious afterlife; I believe in a glorious present life. I want to live. I want to live now. I want to eat foods that are bad for me, drink too much wine, watch TV all night, drive as far as the road goes. That's how you win against this disease.

Friday, 11 September 2015

I Got Excited Last Night

Last night Katherine uttered to me those precious words, a sentence guaranteed to send me into a paroxysm of pleasure, hours of energy and intensity unlike any other. She seems to know when to say these magic words, these words of love so sweet as to wipe away any other thoughts, words so emotional to me that my body is filled with power and strength. That's right. Last night she cuddled up next to me and said "I want to go on a road trip. I want to go to the Oregon coast."

If you know me well enough, you know that this little sentence drove me into an evening of frenzied spreadsheeting, charting out distances from destination to destination, planning stops and rest days, finding hotels and interesting places to stop, budgeting, estimating, fine tuning. She merely mentioned this idea at dinner and I was off and running, all gears going, until 10:00 PM. I barely noticed as she slipped away from the table and into the shower. I hardly heard her say she was going to bed. Then I looked up, and she was gone.

It was then that I realized that perhaps there were other things she had wanted to do with our evening. Perhaps watch some TV, or even perchance to spend an hour talking with one another. Yet there I was, head down into my vision of a road trip, planning to my hearts content. You will notice, as she pointed out to me later, that there was no commitment in her original statement. She didn't say we were going. She didn't say it was definite. Cruel woman that she is, she dangled rapture in front of me then snatched it away by saying the harshest thing possible. "Let me look at the budget and think about it."

I was heartbroken, shattered in my remorse. Once again I had confused a woman's question for her promise. Once again I had mistaken desire for intent. Once again I had launched myself into emotional space without ensuring I had a landing pad beneath me. I had this beautiful, big spreadsheet, tumescent with travel, bulging with data, filled with destinations, ready to explode off the page; and she was telling me to wait. Oh, the pain of it all.

On the other hand, I got to spend an evening with an idea; not just one idea, but two. She wanted to know if we could somehow work a side trip to Vancouver and Tofino into the mix. I'm pretty sure we will at least go to the coast. All I have to do now is get her excited enough to commit, to put aside petty worries, to go where the road takes us, as long as it takes us somewhere... stimulating.

Thursday, 10 September 2015

It's All About Getting Up

It's all about getting out of bed. I went to bed at 9:00 PM last night; I was tired. Still, I couldn't sleep right away so I read until 9:55 PM, whereupon I put aside my book about T. E. Lawrence and his WW1 years in the Arabian desert. I closed my eyes. Sleep came to me quickly.

Notwithstanding the awakenings for my usual night time micturitions, I awoke the next morning, reasonably refreshed, at 9:00 AM. Yes, that is 11 hours of sleep, not something unusual for me, especially when I am tired. Yet even this allocation seemed insufficient. I decided to rest for a bit more. When I next awoke it was noon, or slightly thereafter. I was now at 14 hours of sleep, still feeling the same level of refreshment as I do every morning. No gain, no pain.

At this point, I faced two equally impalatable choices; remain in bed for no further gain, or suffer the pain of getting out of bed and making it into my day. One requires simply that I do nothing while gaining nothing from either more sleep or less painful activity. The other requires that I suffer the vicissitudes of arisal, the work of sitting up, the struggle to dress, the pain of the transfer, all so that I can do... nothing. Well, perhaps not nothing. I can write, I can have a coffee, I can eat something. Yet even these benefits have limited appeal when faced with the immediate effort of getting up.

There are no plans for my day, at least nothing with any certitude. I have some paperwork I should deliver downtown sometime over the next week. Today would work, as would tomorrow, or even next week. There's Name That Tune tonight, an optional event where I spend money I don't have on beer I probably don't need. Katherine might come over; she said she would come and help me rack some wine, but that can wait for another day. There really is no urgency or immediacy for me to be up and about.

Yet I get up. You see, I know one thing for certain. This disease is a long, slow, slide. Yet unlike the turkey who is fed each day and knows naught about tomorrow, I know that Thanksgiving is just around the corner. I know that there is an end to the daily constancy of this slow transit. I know that getting out of bed is what I have to do because one day I will no longer be able to do it.

It's like the story of the fellow who jumps from a 30 story building. When asked, halfway down, how it was going, he replied "So far, so good." I know there will be a sudden stop at the bottom, even if the ride down seems to be going slowly, if not all that well. I wonder if others realize this, that what seems to be taking forever will suddenly stop, seemingly without warning, seemingly for no good cause. Yet there will be cause, the first sign of which will be that day when I decide I just cannot get out of bed, when I no longer have what it takes to get up.

Wednesday, 9 September 2015

A Continuing Trend

My emotional state is taking a bit of a pounding this morning. This isn't uncommon for PALS, me included, when we think on what's happening to us and what has happened to our lives. Often it is alone time that gets to me, time when I sit and contemplate things.

Last night I was sitting alone at my favourite pub, most of the patrons having gone home. Marty, the bartender for the night, was shutting down, switching off the TVs, mopping the floor, turning off the lights. A couple of other staff members were sitting at the bar, discussing the events of the evening. Nothing big happened; just another Tuesday night at trivia. I sat there, the room ever darkening as Marty turned off bank after bank of lights. He wanted to go home; the lights were a cue for me to leave.

Yet I sat there a few more minutes and thought about Tuesdays. Next Tuesday will be a major event in my life here in Calgary. I will be unable to attend my regular Tuesday night trivia group. The location has changed; it's upstairs in a bar where access is only by a lengthy flight of stairs. There is no way for me to attend unless I am physically carried up and down those stairs, a dangerous, risky proposition for both the carriers and the carried. So I will not go.

I've been going to trivia with this group of people for more than five years, a half of a decade. It's not all that long in the grand scheme of things, unless you put it into perspective by considering the changes in my life during that time. Five years ago I was married, living in Abbotsford, working in Calgary while flying home for weekends. Five years ago I was strong and healthy, or at least so I thought. Five years ago I could care for myself, my family, and others too, both financially and physically. At lot has changed since then.

There are other PALS who would love to have the ability to spend an evening at any pub, with anyone, rather than being trapped in their beds, stuck in their homes or hospital rooms. I am very fortunate to be able to do this. Yet I am also mourning the loss of one of the most significant parts of my life, that special time each week with the people I've spent so much time with over these last five years.

Last night, I started thinking about it. Those thoughts, that sense of sadness and loss, remain with me today. Once again my life is changing because of ALS. Once again I am losing something. To some it may not mean much. To me, it's part of a continuing trend. I just wish it would stop.

Tuesday, 8 September 2015

It's 4:45 AM. Time For A Haircut

I had an event last night, a messy event, the kind I will only describe in euphemism. It all started when I woke up at 4:25 AM and realized I had to go pee. I have learned a new method for going pee at night, one which does not require what is now the difficult task of sitting up. It's different than my old method of going pee laying down, where I lay on my back. Now I roll to my side and pee, meaning I can see the jug and adjust myself as needed. It's much less prone to accident.

I woke up feeling the urge, so I grabbed my jug from the dresser where I keep it along with a full set of cleaning supplies should there be a problem. I undid the lid and put it gently beside me. This is where the fun all began. The lid, seeming to develop kinetic powers, leapt off the bed and skittered its way across the bedroom floor, rather like a large white puck on a skating surface of laminate. Instead of panic, I relaxed, went pee, and safely put the jug on the dresser. Then I used the trappings from my sling to flip out and slide the puck, or rather, the lid, back to me. It was a bit of hockey in the middle of the night.

At that point, however, I realized that I would have to sit up in order to bend down and pick up the lid. Notwithstanding the significant effort involved, I sat up, then using the M-Rail as a brace I leaned over and picked up the jug lid. This is where my natural anatomical processes kick in. When I wake up every morning, I sit up, transfer to my wheelchair, and go to my toilet. My body knows this routine. Unfortunately it doesn't know that 4:30 AM is not the time for this routine. I had slept, I was awake, I was moving about. Something else had to move with me. That's it.

I spoke to my lower bowel rather intensely, pointing out that it was still the middle of the night. I thought I had convinced it to go back to sleep, so I set about doing the same. That's when it hit me, or at least that's when my body hit back, letting me know that there was no way in hell it would put up with this spurious interruption. It said "I don't care what time it is. You woke me up, and now I am going to do the same for you."

As you might guess, urgency in my situation is not something I can respond with. I did my best, managing to sit up halfway before action began. I managed to forestall further action, but I was a mobile mess by this time. I continued moving, all of me. There was nothing else I could do. By the time I transferred to my wheelchair, there was a substantial stain on my bed. By the time I transferred to the toilet, there was a smaller stain on my wheelchair cushion. As to my underwear, I am sure you can guess what they looked like. Nothing is easy, nothing is fast.

I sat on the toilet, finishing what had already begun. Then I took an extended amount of time to attempt a thorough cleaning of my nether regions. It was not a fun task. Nonetheless, having finished the best I could, I said to Katherine that I could either have a quick shower, or we could put a towel on the bed and I could look after things in the morning. She said "Shower".

Then, at 4:45 AM, while I was sitting in the bathroom wondering about the oddness of my life, she said something even more shocking. She said "I cut your hair". It's important to understand that this was not a simple suggestion, nor a request, nor even something for discussion. This was a statement of fact; Katherine had decided that my hair was too long, that it needed cutting before I had my shower. There was no argument or agreement involved. I was getting a haircut.

As she started the clippers, I said to her, "Who is more crazy? Me, or you?" "You", she said back in rapid reply. So I sat there as she did her work. Then I got my shower. While I was showering she changed the linens on the bed and cleaned my wheelchair cushion. By 5:20 AM we were back in bed, my body cleaned and clipped, her sensibilities intact.

That's what I did last night. How about you?

Monday, 7 September 2015

Financial Plans

Part of my emotional challenges these days are the feelings I have when asking for financial assistance from family and friends. My first feeling is embarrassment, or perhaps shame; that I should have to ask at all means that I have failed somewhere along the line in my financial planning. The next feeling is fear; I am afraid if I ask they might say no. There I would be, still without help, but now with the feelings of failure doubled. After I get up the courage to ask, I feel humbled by the whole process, brought low by my own hand.

The feeling which gets me most of all, however, is the sense inside that I must justify my spending if I plan on asking for help, that I must prove to whomever I ask that I am not spending frivolously, wasting their precious gift to me on unimportant things. The really bizarre part is that I feel like I owe an explanation of my past spending, perhaps my whole life of spending, just so they know that I didn't get here out of foolish behaviour, that I got here in spite of what looked like a pretty good financial plan for my life.

My brother Peter says this feeling is nonsense, that just because someone helps me financially does not mean I owe them a debt of responsibility or a report on how I spent their money. My brother Adam recently said that he wouldn't ask me to justify myself, but it would help him be less concerned about me if he knew I had a long term plan for my finances.

Both of these comments have helped me a great deal in dealing with this sense of shame and guilt in needing help at this time of my life. Peter reminds me that gifts should be freely given and freely accepted, without restraint, no strings attached. Adam reminds me that if I don't have some sort of plan, people will get tired of being asked, seeing no direction or thought.

I once had a very good financial plan. It was predicated on my working until 65, and perhaps part time thereafter, maybe even for another 10 years. It included a plan for a home, savings for retirement, the strategic purchase of a few "big boy" toys, and most of all a plan for my sailboat. My plan called for me to work 8 or 9 months a year, then take summers off, along with a few strategic weeks in the fall for hunting and fishing. I had it all mapped out.

Then I got ALS. It changed all my plans. It made every investment decision moot. It made mincemeat of my boat and any other toys. It made working an impossibility. That's what ALS does; it destroys all your plans, for money, for life. Please forgive me for not planning for ALS. Please forgive me if you disagree with some of my financial decisions along the way. The truth is that I am now making it up as I go along.

In some ways, the only thing I have misjudged is how long I will live. It's another cruel twist of ALS, that what you think will happen is not what actually happens. Like the rest of humanity, you don't know how long you will live. You just know it won't be as long as you would like, and longer than you can afford. And that is hard to plan for.

Sunday, 6 September 2015

I Can Be Thankful

There is an interesting thing which happens to me almost every day, usually within an hour or so of getting up, sometimes, on a particularly bad morning, later in the day after I'm up and about. It's a moment of gratitude, a feeling of good fortune, happiness which creeps into me in spite of the tremendous difficulties I face, not just first thing in the day, but throughout my day. Usually it's a couple of things which drive me to thankfulness. This morning I began to think more about it. I have a lot to be thankful for.

Even in my first moments of waking, I can be thankful for the ability I have to live in my own apartment. This sense of home and belonging is the most powerful thing in life which keeps me going, followed closely by my truck, another thing I am thankful for on a persistent basis. As I roll over in my struggle to awaken, I can be thankful that my bed, bedroom, and my whole apartment has the tools and accouterments which allow me to remain mobile, things like my M-Rail, my sling, the grab bars in my bathroom, and even the simple transfer board, a mere piece of wood, which aids in my motion from bed to wheelchair. I am thankful for the ALS Society of Alberta which provides me with so many of these tools.

As I sit and look at my feet, almost always in good shape thanks to a night in bed, I can be thankful for my compression socks, acting as they do to keep the swelling down, to keep the iridescent purple from blotching its way across my feet. I am thankful for government funding by AADL which means I only pay 25% of the cost of these socks. I can also be thankful for the quilt made by my Mom and friends covering me, keeping me warm all the while reminding me of my life at sea. I can be thankful that friends have helped me setup my room so I can get at my clothes, especially my socks, underwear and shirts, without having to get out of my bed.

When I go to the washroom, I can be thankful for the laminate flooring, so much easier than the carpet which once rested underfoot. I can be thankful for the wide doorways and large bathroom which my brother Jim, along with my friend Mike and many others, built for me to make sure I could live independently for as long as possible. I can be thankful that I had the financial resources to pay for these modifications, albeit most of it ended up on Visa. I am thankful I had a high limit on my Visa.

As I dress, I can be thankful that I can still wear regular clothing, still dress myself, still choose what I want to wear when I want to wear it. As I roll into my kitchen, I can be thankful for my stove with front control knobs, also paid for with Visa. I can be thankful for the coffee maker my Mom gave me, especially now as the energy to use my cappuccino machine leaves me. I am thankful for her gifts to me, and the gifts of so many others.

I am thankful for so much, for Katherine, for family, for friends, for the emotional and financial assistance without which I would have left this life long ago. I am thankful for my ability to move about, knowing full well that there will come a time when that will not be true. And when that happens, I will be thankful for those who help me move about, their kindness and compassion contributing once again to my will to live.

There is only one thing in my life I am not thankful for. I can leave that alone for now. There's enough good stuff that I can pretty much forget the bad stuff. And when I can't, I can be thankful for the friends and family who listen, who care, who are there for me.

Saturday, 5 September 2015

Making Martinis

When ALS was destroying my legs, my ability to walk, I noticed a pattern in the way it went about its business. I would be fine, stable for a long time, then, over the space of a few days or a week, I would experience a substantial change in my legs. I used to refer to them as "bad leg days". There was no consistency in the pattern, no minimum or maximum duration of the stable period, no measure of rapidity for the decline. It was just a sort of ebb and flow thing, where I was good for a while, usually a long while, then I was bad for a short period of time, then I was stable again with a new, lower level of normal.

This is happening in my arms now, right now. I am going through a period of rapid decline in my arm strength. They were going slowly for a long time. Now, in the last couple of weeks, I have noticed some fairly dramatic changes. I don't know how long this period of decline will last, or where things will stabilize. I just know that I am sliding right now, sliding downward in arm strength.

The obvious elements of this slide are my increasing inability to pick things up. Yesterday I went to pick up a bottle of gin. We had company over and I was making martinis. I thought to myself, as I picked up the bottle, "Gee, this thing is heavy." It's a thought which I never would have had in the past. I noticed when I made lasagna the other day that it was becoming increasingly difficult to lift up the full lasagna pan.

It kind of topped off yesterday when one of my young friends came to borrow my camping cot. I can barely pick it up anymore. Yet she, tiny little slip of a girl that she is, just grabbed it and hoisted it around like it was nothing. She said it was heavy, but it sure didn't look like it when she picked it up.

This slide will stop somewhere. I will stabilize for a while someday. Then, thanks to the joy of this disease, I will go through this process once again, losing and seeing the loss. On the other hand, I'm still here. And what the hell, someone else can carry the gin; I can still make the martinis, for now.

Friday, 4 September 2015

It's Different In Other Countries

I have a swollen throat this morning. It's inside my throat, probably a swollen gland near the Eustachian tube beneath my right ear. The left side was bothering my last night, now it's the right side. I'm worried that the infection which hospitalized me recently may be making a repeat performance. My brother Adam tells me that after his recent trip here he ended up with bronchitis when he got home.

As Adam noted, as we age it takes us longer to get over these kinds of things. Add to that the generalized weakness from ALS and you have perfect recipe for long, slow recovery from almost any illness. Once again I have come to realize that ALS does not give me a free pass on the rest of life. The aches and pains of aging, the general joint trouble from a body well used over the years, life's illnesses and opportunistic infections; I am just as prone to these as any other person of my vintage.

On the other hand, I continue to be grateful for the care that I get, both from the medical system here in Canada, and from my family and friends. This morning the Home Care worker came and helped me with my shower, then did my Range of Motion exercises. As she was stretching my body, ensuring that my limbs were limber, she talked about her life in India as a young woman. She was a nurse back home, a somewhat different role than nurses here in Canada.

Her most powerful observation was that there was nobody, nor any system, to help care for aging or sick family members in India. It was up to children to care for their parents, brothers to care for sisters, wives to care for husbands, all unaided by the kinds of care systems we take for granted here in Canada. She talked for a while about how our system in Canada was so much better than that in India, especially for those who come from a poor background.

I hurt again today. My arms hurt. My fingers hurt. My legs hurt. My throat hurts. But none of that really matters, and the pain is mild compared to what I have been through in the past. What really matters is that I don't feel this pain alone. I don't carry this load by myself. I don't know what the future holds, but regardless of how I might feel, I am grateful for the present.

Thursday, 3 September 2015

IBC One Year Later

This weekend is the unofficial end of summer in Canada; it's arrived a few days early here in Calgary. This morning's sunshine has been replaced by a rapid plummet in temperature, grey clouds, rain, lightening, and thunder near enough to rattle the windows of my apartment. August is gone.

Last year was the August of the Ice Bucket Challenge, that organic, viral sensation which swept the globe, raising millions for ALS research, raising awareness of this illness, and, along the way, raising the ire of the naysayers, those who would rationalize away something as emotional, and fun, as the Ice Bucket Challenge. Those inside the ALS community tried to replicate it again this year, with a slogan of "Every August Until A Cure". It didn't have the same affect; it's hard to replicated that one of a kind contagion.

This is not to say that the Ice Bucket Challenge failed; quite the reverse. The money raised has already lead to important breakthroughs in research, extensive new drug trials, and a massive increase in awareness around ALS. Perhaps one of the most significant advances has been the increasing understanding of the role of the protein  TDP-43 within the context of how it allows damaged neurons to repair themselves, a part of the broken process which underlies not only ALS but many other neurological illnesses.

It has long been understood that TDP-43 had something to do with failed neurons. There are studies going back nearly a decade which discuss its potential importance. The problem has been money; there wasn't enough to fund ongoing, focused research in this area. Then the Ice Bucket Challenge came along. Prosaically, a year after that money was raised, we have a major advance in understanding the relationship of TDP-43 to neuron repair, an advance which may lead to treatments not just for ALS, but for Alzheimer's, MS, and a host of other neurological disorders.

This doesn't mean something will happen right away. There will be no magic cure tomorrow. Right now, fixing the TDP-43 protein only works in mice, and what works in mice often doesn't work in people. What it does means is that there is now enough money in the pot to advance this research, something which was missing in the past. It may not be on time for me, but one day ALS and all kinds of neurological diseases will be not just treatable, but curable. That's worth a bucket of ice over my head.

Wednesday, 2 September 2015

I Need To Relax

I'm up, dressed, and at the table. Home care has been and gone. I'm showered and stretched. Yet try as I might I cannot seem to find a good thing to say. I'm tired despite plenty of sleep last night, from around 1:00 AM to 10:30 AM, with the usual short wakenings along the way. My fingers hurt; I'm not sure if it's ALS or age related arthritis. All I know for sure is that I don't want to type.

My perfect solution to how I am feeling would be to go back to bed, to stay there for the day. Before I tumble that far, first I am going to have a cup of coffee, and perhaps something to eat. After that, we'll see. Except that I don't have the energy or enthusiasm to make the coffee or to make something to eat. I don't really see the point in it. I have plenty of stored fat on board. I can use it to keep me going.

I took my glasses off for a minute to rest my head in my hands. My arms began shaking, spasms from the weight of my head being held. I tried to shake it off, but it came back. I'm not sure what is happening today. Part of me wonders if this is still from the infection; maybe it's coming back. I hate this disease; it looks like so many different things that you can't trust your own body to tell you how it feels.

This will be a day of rest. I'm gonna sit on the couch and watch TV, maybe eat something, drink some water, some coffee too. I don't feel like having any wine or scotch; I'm just not up to it today. Nor do I really feel social. That takes energy, energy I don't have. I just need to relax.

Tuesday, 1 September 2015

From Good To Bad In One Day

One of the most annoying things about having ALS is its variability. Yesterday, I woke up feeling good. Today, I didn't wake up feeling bad so much as I woke up feeling blah. I felt weak, unable to lift myself, unwilling to go through the efforts required to sit up. I woke up at 9:30 AM, and managed to lay in bed doing nothing but dozing or checking Facebook until 2:30 PM. Then, finally, I got out of bed.

This is not to say that I go ready for my day. I took my medications, for sure. But this morning, I didn't bother to get dressed. I put on clean underwear, a habit which I am unlikely to change any time soon. Beyond that, I did not fight with compression socks. I did not wrestle with blue jeans. I did not haul a shirt over my head. I haven't yet gotten that far.

Of course, without compression socks my feet have turned a brilliant shade of purple. The swelling from edema is well underway. I've had some coffee and a couple of English Muffin sides with egg salad, so you could say I've had some lunch. But I don't feel in the least hungry; eating was automatic, not enjoyable.

I just feel crappy today; tired muscles, tired emotions, tired spirit. How is it that I can go from feeling good yesterday to feeling so crappy today? It's just the way of ALS.