Saturday, 31 October 2015

Ouch! My Arms Hurt!

Some mornings are tougher than others. This morning it is my left arm and shoulder. They hurt, a lot. Of course I have nobody to blame but myself for this. I spent yesterday chauffeuring Katherine around San Francisco, driving in city traffic, all stop and go, up and down hills, parking and unparking. It's no wonder my arms hurt; they spent the day working. It's like I was swinging a sledge hammer all day.

It wasn't intended to be this way. Our plan was to go to Ghirardelli's for ice cream and chocolate. Then we were going to head back to the hotel and spend the afternoon exploring the Fisherman's Wharf area. We drove the mile over to Ghirardelli Square, parked the truck and went upstairs. There we successfully completed Step One of the day's operation. We ate mass quantities of ice cream and chocolate.

Then it happened. As I pulled out of the parking lot, I said to Katherine, "The Marina is just a few blocks over from here. Let's go take a look." It's a marina; of course I had to go look. So off we went, just a few blocks away. Katherine got out and took pictures while I sat in the truck and looked at boats. When she came back I said, "The Palace of Fine Arts is just over there. Let's go take a look." Unfortunately I missed the turn and we ended up in the Presido, right next door. So we spent an hour or so exploring the Presidio.

After that, it was nothing to head over to Land's End so Katherine could check out the view, followed by a look at the beach and the surfers. Then it was a short drive through Golden Gate Park, with its beautiful urban forest setting and wonderful grass areas for family gatherings. That complete, we headed for Alamo Park, home of the Painted Ladies of San Francisco, a set of beautifully painted houses famous from the opening scenes of the TV show, Full House.

I parked again while Katherine explored. Once she was done, it seem logical that we should go to Lombard Street, where Katherine walked down the hill. I parked and waited at the top for about five minutes, then headed down the nine twisting turns of the hill to pick her up at the bottom. Stop and go, stop and go, stop and go.

Not yet finished with my personal driving torture, I took us over to the Coit Tower on Telegraph Hill. There Katherine leaped from the truck to take more pictures while I found another parking spot. Photos complete, we headed down, or so I thought. Just round the corner from the top of the hill is a great spot for taking pictures of downtown San Francisco. Unfortunately it is not a great place to stop a truck. She jumped out to take pictures while I drove halfway down the hill, turning around where I could to return for her. This, of course, meant I drove all the way to the top again, turning around up there, and heading down.

We wanted to have dinner in Chinatown, just a few blocks from the Coit Tower. So off I went on another lurching effort through the streets of San Francisco. Stop and go. Stop and go. We made it to Chinatown finally. There, however, were no parking spots to be had, especially for a wheelchair vehicle, especially for a giant F-150 from Alberta. After circling through the narrow streets of Chinatown several times, I finally said "I give up."

Katherine is completely understanding of my limitations. I had hit the wall and she knew it. We went back to the hotel where I gratefully tossed the keys to the valet. Unfortunately it didn't get that much better. We wanted sushi. There were two choices, one a block away and the other on Pier 39, about 4 blocks away. We choose nearby. We choose poorly. When we arrived we found three giant steps between us and the restaurant door.

It's not that we gave up at that point. We didn't. We just headed the now 6 blocks to Pier 39. More walking and pushing for Katherine. More wheeling for me. More work for her legs and my arms. Once there, we dined well, then headed the four long, very long, blocks to the hotel. Needless to say, exhaustion set in as soon as we got to the room. Neither of us had any strength left. My arms were killing me from all the driving. Her legs were aching from the exploring up and down hills, from pushing me about.

This ache still carries over. This morning is the price we pay for yesterday. It's noon and I am still in bed. I will get up shortly. We will head out again. We are gluttons for punishment. Ah, what the hell. It's only a bit of pain. Tylenol will take care of that. How often do you get to explore San Francisco? Unless you live here, like my friend Sarah Coglianese. She choose wisely.

Friday, 30 October 2015

Deserve's Got Nothin' To Do With It

There is a scene in the movie "Unforgiven" where Will Munny, played  by Clint Eastwood, is standing overtop of an injured Little Bill, played by Gene Hackman. Little Bill says "I don't deserve die like this..." Will Munny says "Deserve's got nothin' to do with it." I thank my brother Adam for reminding me of this.

That quote says a lot to me, both from the positive and the negative side. I didn't "deserve" to get ALS. I didn't "deserve" a failed marriage, financial ruin, the complete physical loss of my body. Deserve's got nothin' to do with it. This is just the way it is. On the other hand, I don't deserve the love of Katherine, of my children, of my brothers, my parents, my friends. I don't deserve the incredible opportunities that have come my way in the last few years; opportunities to travel, to eat fine food, to drink fine wine, to laugh, to enjoy life. Deserve's got nothin' to do with it.

Today I am sitting in the window of a luxury hotel, albeit slightly less than perfect for me, but excellent nonetheless. I am looking out the window towards San Francisco Bay, brilliant under the warm California sun. I'm ready to go explore in my truck, fully decked out for handicapped use. I'm sitting in a customized wheelchair, lightweight, easy to push around the city streets. Deserve's got nothin' to do with it.

We'll start our day of exploration with Ghirardelli Square, scarfing down a gigantic ice cream treat. Then we'll drive around the Marina and through the Presidio, eventually making our way across the streets of San Francisco to Chinatown, where Katherine will no doubt order us a completely sumptuous meal. Then we will come back to the comfort of our hotel, have a glass of wine and relax for the evening. We might even walk back down to Pier 39, or roll in my case, just for the fun of it. Deserve's got nothin' to do with it.

I am going to enjoy this day. Katherine will enjoy this day. Neither of us deserves it. I, most certainly of all, have done little in my life to be given this gift, this opportunity to end it reasonably well. I think of people I know fighting cancer, living with MS, dealing with the loss of parents or children. They don't deserve any of that. It's just how life works. Today, I plan on making this day, and every day, worth it, as if I really did deserve it.

Thursday, 29 October 2015

Hotel Frustations

It's late, at the end of a terrific day. When I awoke this morning, I was still carrying the residual frustration from my last hotel experience where the promised roll-in shower turned into a bathtub and the bathroom counter was standard height instead of wheelchair height. I get a lot of that at hotels, where they simply don't understand the difference between handicap access and wheelchair access.

This trip is a good example of the issue. We'be been out for a week now, staying at different hotels and chains along the way, including one independent resort hotel. Here is a run-down of our experiences.

Spokane, Comfort Inn - The room was setup with a bathroom door which opened the wrong way for wheelchair access. In this situation, the door opened outwards, normally not a bad thing. However when the door opened, it blocked all access to the bathroom. In order to get into the bathroom, I had to position myself just perfectly and Katherine had to operate the door for me. In addition, the bed was sufficiently high that I needed help to get onto it.

Lynnwood, Embassy Suites - Almost perfect. The bed was a bit high, but I managed. The bathroom was a bit small, but I managed. The biggest issue was that I could not turn around in the hallway space beside the bathroom, so I had to go into the bedroom or into the living room if I wanted to turn about.

Seaside, Coast Motel - Mostly okay. The room was a bit small so I had trouble getting past the bed. As Katherine says, if I stayed on one side of the room, it was good.

Gold Beach, Gold Beach Resort - The shower had a 6 inch lip on it and the toilet was sunk into a cubicle. I wrote about the toilet adventures yesterday. This meant I could not use the shower at all, and the toilet took a great deal out of me in terms of energy when I used it.

Fort Bragg, Holiday Inn Express - Another promised roll-in shower turns into a bathtub. The counter was standard height and the mirror even higher. Another fight in order to get clean. Another hard transfer. Another chin rest while I brushed my teeth.

San Francisco, Sheraton Fisherman's Wharf - Another hotel toilets in cubicles and showers that turn into tubs. My choice was to have a tough time with the toilet or a tough time with the shower. I choose shower; I'll be using the toilet more often.

None of these things, in and of themselves, is critical. All of them can be worked with, even the cubicle bound toilets. It's not the individual inconvenience that does it to me. It is the persistent torture, the complete inability of hotels to understand, their consistent failure to deliver what they promise. It is a continual water torture. I am forever waiting for the next drop.

The frustration of ALS is bad enough, with its continual loss and constant weakening. Then there are the other frustrations in my life, some brought on by ALS, others by wheelchair life, and others simply because I am getting older. I really don't need more frustration in my life, especially one where I am paying the bill, at a hotel

Wednesday, 28 October 2015

Toilet Transfer Adventures

Yesterday I wrote about adventure. It's pretty bizarre when that adventure becomes whether or not you can get on and off the toilet in your supposedly ADA compliant bathroom at a hotel. I continue to be amazed at what designers do when they design rooms for wheelchair access. Clearly the person doing this room did not understand the need for clear access beside the toilet in order to effect a safe transfer. Instead, they built the toilet into a small cubicle, one which would not pass ADA compliance in any situation.

What you do in a situation like this depends a lot on your physical ability. If your upper body is reasonably strong, you can do what I did. First, you fold up the footpads on your wheelchair. Then you roll at the toilet with a slight angle off to one side or the other. Once your wheelchair is in place and locked, you adjust your feet, which have dragged along with you for this ride, such that they are beside the toilet and sort of in front of your wheelchair. Now, using your arms to lift and rotate your body, you make a controlled crash off of your wheelchair and onto the toilet seat.

Once you are on the toilet seat, you have to get rid of your wheelchair before you can completely re-position yourself on the toilet seat. This is a special point of caution. If the floor has any sort of slope, as all floors do, make sure your wheelchair doesn't roll across the gigantic bathroom all on its own. This is especially true if you are on your own in the hotel room. Fortunately for me, all was well this time. I caught the wheelchair before it left town, locking the wheels in place so the chair was just in front of me, the fourth wall in the world of my toilet.

Now that the wheelchair is safe, you can turn your body around on the toilet seat so you face the front. This is where you discover the truly incredible power of adhesion between bare skin and toilet seat. If you are wearing boxer shorts or full underwear, it's only a partial problem. On the other hand, if you've made the mistake of disrobing before toileting, or you are wearing small, tighty-whiteys, then you will feel the full power of the sticking process. Nonetheless, you must use all the energy you have to rotate frontwards, or you can just sit there sideways and make the best use of the toilet in that position.

Now you are ready. By this time, of course, you are far to tired to do what comes naturally. Either that, or the process started without you, while in some awkward rotational position. It doesn't really matter, you are there and eventually you will do what you need to do.

After all is done, and by that I mean whatever you can do, you simply reverse the process to get off the toilet. Now if it were really that simple, I would leave it at that. Instead, the only suggestion I can make for the return trip, after you are tired from the work on the toilet, is that you wait for a while to regain your strength before doing the needed acrobatics. Oh, and don't forget to wipe. That's when you find out how high the now polluted water is in your toilet. Be sure you wash your hands afterwards; they're gonna need it.

Tuesday, 27 October 2015

More Adventure

I'm sitting in bed with my computer on my lap, my very uneven lap. My left leg has substantially less muscle mass than my right leg. It went first, so it's lost more. My left side has been ahead of my right side throughout this disease process, whether legs, core muscles, arms, shoulder or neck. Even my mouth has followed that pattern; my word formation issues and the biting of my lip and tongue are all worse on my left side.

Notwithstanding these immediate observations, I am at a minimum sitting up, still writing, listening to the ceaseless pounding of the surf, able to gaze out at a seemingly limitless horizon of ocean. Katherine has been busy this morning, peeling oranges for our drive, packing food into cooler cases, packing her luggage. I am now officially the only delay in the morning process.

We start on another adventure today, headed even further down the Oregon Coast, our goal being Gold River. Along the way we'll go through Coos Bay, stop by the Sea Lion Caves, and most likely stop for any number of pictures. Katherine will hop out of the truck here and there, while I remain in, unwilling to fight with the transfer to my wheelchair in order to see another view of the ocean.

Each of us is having our own adventure. It is a reality of life that each of us will have our own adventure, regardless of who we share that adventure with or who we share it. Life is such an individual voyage, completely perceived from within ourselves. The same views, the same sounds, the same smells; each of us interprets them through our own filters, compares them with our own internal palette of memory.

I cannot speak to Katherine's adventure on this trip. I know she is enjoying it. I can see her smiling, exploring, excited with her pictures and experiences. Yet I don't know what she is feeling inside, how this trip is impacting her within. That is the nature of the human adventure, that so much of it happens inside ourselves.

As for me, I am still here, still driving, still laughing, still loving. This is the greatest part of my adventure.

Monday, 26 October 2015

Getting Weaker

Lincoln City, Oregon. Surftides Inn. Room 322. It is almost exactly six month since I was here last; only a difference of a few days. I am in the same room, looking out at the same surf. The weather is nearly identical with the weather of that day six months ago. Were it not for the date on the calendar, one could not tell that this was the fall and that was the spring, until you turn your gaze from the ocean to the shore, looking at the trees and flowers instead of listening to the ever present whir of wave hitting beach.

There are a couple of things that are different on this trip. First, and foremost, Katherine is with me this time. It makes a great deal of difference to have her along for this trip. That's because of the second major difference between then and now; me.

It's hard to notice the changes in me if you just look at my body. My weight is about the same. My frame is just what it has always been. People constantly tell me how good I look. If only my body reflected my loss in strength and the ongoing battle with chronic fatigue. I may look the same, but I am not the same.

The most noticeable things are the transfers and lifts required in my daily life. When I came here on my own back on May 13th, I was able to transfer myself from my wheelchair to this high bed without assistance, without even using the transfer board. Now, not only do I need the transfer board, but the transfer itself is a near run thing. I need a bit of help at the end, making the final shift from the board to the bed, and removing the board once I am up there. I could still do it on my own, but barely. At least the transfer off the bed is a downhill event; that one I can do without assistance.

Then there is the shower. Last time I was here, I used my shower bench. I positioned it in the middle of the roll in shower so I could reach the controls. It's one of those pieces of brilliant anti-handicapped design where shower controls are at one end of the five foot long shower stall, with the built in bench at the other end. You can't reach the controls when seated on the bench.

This time, instead of using the shower bench, I sat on the built in bench and Katherine operated the controls. Could I still have used the bench? Sure. Could I still have done this myself? I am not so sure. Controlling my wheelchair on a slippery floor has become much more problematic, much more difficult.

Six months have gone by. I am getting weaker. I didn't need a visit to Surftides to tell me that. It's just made obvious something that was already clear to me, but may not be clear to those around me.

Sunday, 25 October 2015


Seaside, Oregon. It's a small, aging resort town hanging off the far western end of the Lewis and Clark Trail, one of many small, seaside towns strung out like fruit along the vine of the Oregon Coast highway. Thank goodness for Sacagawea, without whom these great white explorers would have been lost in the plains and mountains between the eastern USA and the then unknown great Oregon Territory.

It's raining today, an intermittent kind of rain going from umbrella thumping, wind driven bluster to a light misting, typical of the northwest coastal region. We think of this being the western shore of North America, either USA or Canada. When it comes to the Pacific, this is the eastern portion. This ocean reaches halfway around the world from here, a massive distance unfathomable to most as they walk the local promenade, watching the waves pound on the shore and the seabirds race by in the wind.

Just as the Eskimos have a hundred different words for snow, we of the rain have a vast vocabulary to describe the ever changing nature of this coastal precipitation. Rain here, driven in off the Pacific, can be light, almost friendly at times. It can be merciless, brutal, pounding. It can be on and off, intermittent, like a rhythm in some mysterious tune, playing for our attention then leaving us to wonder. It can be anything in between, and everything in between, often all in the same day, sometimes even at the same time.

Our hotel room is on the first floor, with a massive room wide window, making it easy for us to look out and just as easy for the strollers to look in. We are the caged; they are the free. We are safe from the elements; they have braved the breezes pushing the heaving waves to shore. Looking out this window, watching that pounding surf, those gulls whipping by, the sand and shore, it's easy to forget the world out there, easy to fall into reverie. That's a good thing.

Saturday, 24 October 2015

A Call From The Royal Bank

I got a phone call on Wednesday as we were driving through Banff National Park, into Kootenay National Park. It was a call I had been expecting, a call I had been very worried about. It was a call from RBC Visa, the credit card company to whom I am indebted something to the tune of $31,000 or more. I was very worried about what they might say or do when I could no longer make any payments to them. That day arrived about three weeks ago. This day, the phone call, was only a matter of time.

The young lady was very polite throughout the call. She started by reminding me that I was supposed to make a payment on my Visa card. I said "Yes, unfortunately that won't be possible." Then I gave her the full rundown on my personal and financial situation. As Katherine said, I unloaded my burden and gave it all to her. By the time I was done, after she had asked a few questions, it was clear to her that there was no money, that there would be no money, that I had outlived my savings.

I let her know that I wasn\t supposed to outlive my money, that I actually had a plan which involved my death, my estate, and some possibility of payment for creditors. Now, however, thanks to the vagaries of ALS and my unwillingness to die early, things were not working out well, at least not for RBC Visa. What is good fortune for me is bad fortune for them; I continue to live yet have no more money.

Then I asked the big question. "What can we do in this situation?" Of course I really meant what could the Royal Bank do. I'm certain she knew that. Her comment was that she would refer it to management who would call me back in a week. Most likely they would pass it over to collections and just write the whole thing off. She said they would probably not go after my home; they didn't hold the mortgage anyway,

After the call, I almost felt giddy. I laughed out loud. It was not a sense of good fortune so much as it was a relief from the stress. Debt is a burden; I have enough of those already. Whatever they do this week, whatever decision they make, it is out of my hands. Once again, as Katherine said, I shifted the burden from me to them. I'm pretty sure they can manage it a lot better than I can. Now I can get back to living, even if it is with ALS.

Friday, 23 October 2015

Too Much To Write About

It's funny how yesterday I couldn't imagine what I wanted to say, and today I have so many things I could share. It's not that the days are any different; it's that I am different. I, like everyone else, have my up days and my down days. Today it's up. I don't feel any less or more alive, nor am I particularly elated or enthused. I am just reminded of all I have, of all I can do, of all I can be. I am feeling like I have something to say today.

When I get into these places where I feel morose, it's not always a pity thing. Lots of times I just feel empty, there there is nothing left of me, as if my mind was conceding defeat in the battle for living. On those days where I am still in struggle, where I am still working hard to enjoy the moment, I do my best to stay upbeat. It can be a very difficult thing. Some days it works; other days it does not. I'm not very different from anyone else out there. I just keep going.

There are times when I get angry at what ALS is doing to me. I try to remember that I still have a choice, that I still get to live my life. I remind myself that I've had a pretty good run at things, the kind of life people write books about. I remind myself that I am over 60 years old; my Dad's Dad died at 63. My Uncle Peter died in his late 40's. My friend Bert was murdered at age 22. I remind myself that there are many people, much younger than me, fighting terrible illness; cancer, ALS, neurological disorders, physical disorders. The fact that I have ALS simply means I have a pretty good idea what will kill me and when. That's all.

I often say that dying is easy; it's the living that's hard. In fact that is what makes it interesting, that it is not easy. If living was easy, it would be boring. I get to choose. I get to live some more. I maintain my power of decision. I have some, at least a modest amount, of say over my life. It may be hard living with ALS, but it beats the hell out of dying from it. I need to remind myself, on those days when I feel in a fog, that the light is there for me. All I need to do is switch it on. Some days I find the switch. Some days I don't. But it's always there somewhere.

Thursday, 22 October 2015

Not Much To Write About

I'm not even sure what to write about this morning. The warm sun settles on my shoulder as I sit next to the window and write. The hotel is nothing special; in fact our room is on the first floor, recessed into the slope on which the property is built. The slope is steep enough that the window actually looks out at the embankment, onto a rocked and gardened grade running steeply up to the parking lot.

Katherine is busy bustling about getting our gear ready for another day on the road. She's made coffee and our morning breakfast of Swiss cheese and Proscuitto. We never seem to make it up on time for the free breakfast at these hotels. They want you out of the room early, so they end breakfast at 9:30 or 10:00 AM, long before Katherine and I get going. This morning I was up early, dressed by 10:00 AM, and even that wasn't good enough for the free, terrible food they throw onto a self serve counter, a repast which is in name only a breakfast.

Our drive yesterday was relatively uneventful, unless you count the rafter of wild turkeys we encountered at the border crossing, or the zebra we saw in a horse pen in northern Idaho. The road from Calgary into the Rockies, that thin strip of concrete pushing from the level prairie into the stern and high mountain fastness, the deepness of those rising monoliths of stone and snow, that road, those mountains, leaving me forever in awe, near speechless in their beauty. That first hour of our drive is always eventful, perhaps one of the most beautiful mountain approaches on the planet. Other than that, and perhaps the amazing, wonderful scenery along the way, there was not much of event to account for the day.

I suspect the highlight of the day was the mere doing of it, the transfer from home to road, from stationary to moving, from idle to travel. The adventure of the road forever calls, forever beckons me. It's not enough to see new places; old places are equally demanding in their insistence that I come.

I suspect today will present a similar problem. We will see amazing scenery. We will visit interesting and unusual places. We will gaze upon familiar and unfamiliar places. Then, tomorrow, I won't have much to write about either.

Wednesday, 21 October 2015

Wandering In My Mind

We are on our way, or rather almost on our way. I feel like I am channeling the spirit of Willie Nelson, about to sing "On The Road Again". This time we are headed for the Oregon Coast, by way of Spokane, then Seattle. We'll go all the way down to San Francisco, then over to Sacramento, then back home again. It's a loop I've done before, once already this year alone. Katherine, one the other hand, has seen none of this. Every stop, every town, every road, every sight will be a first for her.

I'm an old hand at road trips, having been the driver for myself, my family, my friends, and now for Katherine. Perhaps it is the only thing I do really well; not so much the driving part but the planning and execution of a road trip. I've done so many that parts of them are automatic.

Right now Katherine is bustling about readying our "en route" snack kit. She likes to bring cheese, proscuitto, pre-peeled oranges, and other snacks to feed us as we make our way down the highway. We already know that our first stops will be just down the hill, one for gas and the other at Tim Hortons. Our route is planned for the day; we are heading out to Banff, through Radium, and down the east Kootenay valley, past the headwaters of the Columbia and Kootenay rivers.

Day two are three are already planned as well, with a stop in Seattle for a full day. It will give Katherine a brief opportunity to get a sense of the city. We'll do Seattle Center, the Space Needle, perhaps the museum, and almost certainly Pike's Market. What we don't know is our route there; I get to decide that tomorrow morning. There are several ways to go, and I've been on all of them.

Beyond the first couple of days, the best road trip plans turn into a fun combination of specific and vague. We know specifically where we are headed. The route plan is rather vague. We know with some degree of certainty what time we would like to leave in the mornings. We are not completely sure what time, or where, we will arrive at night. That's how a good road trip works.

It's time to go, time for me to stop wandering in my mind and start wandering in my truck. On the road again.

Tuesday, 20 October 2015

Here In Canada

I woke up this morning to a change in government here in Canada. The sun was shining. People were at the mall across the street, parking, shopping, walking about. There was no sound of gunfire in the streets. There was no smoke on the horizon, no burned out businesses, no death toll. There was only a simple change in the people who run this country, hopefully for our benefit, but not always. It was, as has always been and I hope ever will be, another peaceful transition in a history of a nation dedicated to the idea that change can be peaceful.

It has been an interesting election campaign, one in which the sense of the need of Canadians to change their government became increasingly evident as the days wore on. This was a long campaign, one of the longest in Canadian history. We, as a nation, are not much for this politicking. We prefer our elections short, your politicians respectful, and our business not bothered by it all. The harshest things we see in Canadian campaigns are a few damaged signs and the odd shouting match. We like it that way; that's one thing we didn't want to change with this election.

There are very few ways in which a federal election touches me personally. The greatest impacts on me, on all of us, start at the municipal level. We want our roads paved. We want our garbage taken out. We want our police honest and diligent. We want firefighters to save us. These matter in our daily lives. For me, however, the provincial government also has a great impact with its approach to health care. Alberta has long had one of the best health care systems in the country. I hope it stays that way.

At a federal level, the issues are much more esoteric. I ask myself, "What kind of a country to I want to live in? How do I want my nation perceived abroad? How do I want it to respond to the least able of its citizens; the poor, the sick, the uneducated, the unemployed?" These are not rhetorical questions. These questions matter, to me and to all Canadians. And for starters, I want to live in the kind of country where politics is reasonably respectful and honest, where governments change without violence, and where the people of the nation come before the needs of those in power.

That's where I live, here in Canada.

Monday, 19 October 2015

A Little Yellow Slip

It has been a very hectic day today. It wasn't meant to be. It wasn't planned this way. It just was. It all started with the Home Care Aide coming an hour late. That impacted my ability to get to my driver's test on time at 2:00 PM; I made it about 15 minutes late. That impacted my meeting with the ALS Clinic Manager down at the South Health Campus on the other side of Calgary. I made my 3:30 PM appointment at 4:00 PM. By then, the highways were jammed and traffic was nasty, so we decided to go a different sort of way home, up Stony Plain, across 17th, up to Memorial and on home from there.

That's where it happened, on 17th Avenue, in the middle of rush hour traffic. I am usually a very safe driver, more than responsdent to traffic lights and pedestrian crossings. Only this time I completely missed the blinking yellow lights at a crossing. I knew I missed it when I looked in my mirror and saw the blinking lights and the guy crossing the street. That is also when I noticed the Calgary Police Service vehicle in what would have been the lane next to me.

As the lights stopped me at the next intersection, he pulled in behind. I knew what was going to happen; it happened. His lights went on, so I pulled into a parking lot, out of traffic. The CPS pulled in behind me. As the office got out and walked towards me, I made the first move, saying "I'm sorry, officer. I am completely in the wrong here. I truly missed that light completely, and I apologize. I know you have to give me a ticket, but is there any chance you could make it a warning? I am usually a very safe driver."

His response was interesting. He looked at me and said "Give me your driver's license, insurance, and registration. We'll see what we can do." There was hope! Then he looked at my truck and asked, "How long have you had your truck rigged up this way?" I said"Three years. Is this business or are you just interested?" He said "I'm curious."

Now, I get all kinds of stares at my wheelchair rig in my truck. EMS, fire department, even random people in parking lots; they all stare at it. They are all curious. It makes sense that it would interest the cop. And hey, it's not his fault I blew the pedestrian light. So I gave him a run through.

I opened the door to show him the hand controls. At that moment, his partner, who had been carefully guarding Katherine on the passenger side, walked briskly around the truck so he could see too. I showed them how the controls worked, how the lift seat got me in and out. I showed them how the wheelchair crane worked, even dropping the wheelchair to the ground so the cop could unhook and hook it up again. The we tucked it all away.

I also took the time to explain ALS to the both of them, to help them understand why I was in the chair. I told them my story in the briefest possible way, so they could see how fortunate I was to still be driving almost 3 years after diagnosis, when I should have long lost this ability. The officer stood back for a moment, saying nothing. It was almost awkward, so I said "I know you have paper to write. Do what you have to do."

The two officers returned to their vehicle. After a suitable wait, the officer came back and said, "The fine for running that light is $776 dollars." My jaw dropped. "Why?" "Because you put someone else's life at risk when you did that. What if he had walked a bit faster? At your speed, you would have killed him if you had hit him." I swallowed hard and said, "I understand." I was prepared to take my lumps and learn my lesson.

Then he handed me a ticket and said "This is a warning." There were other things he said, perhaps a shorter story for another time. When all was said and done, we parted, his partner giving us a bright smile and a wave as we drove out into traffic.

Sunday, 18 October 2015

Oregon Coast! Again!

Katherine wants to go on another road trip, this time down the Oregon Coast!

Of course I am the one responsible for this desire. I introduced her to road trips. We've spent much of the year wandering around the continent. We went to Tofino recently and she saw the ocean there. Now she wants to see the whole of the coast line, or at least as much as we can before she has to be back in Calgary. Right now that looks like November 6th.

It's not as if this is a new trip to me. I went down the Oregon Coast without her in the spring, and this upset her very much; she later admitted she should have come along. I love a good road trip and there are very few as good as the Oregon Coast, even at this time of year. I know, summer is best. I know, winter has storms. I also know that Katherine wants to leave as early as Tuesday, so this is it.

Even though I did this trip only a few months ago, I know we will have a wonderful time, and I know I will be happy along the way. There are three very good reasons for this. First, I will be with Katherine, a state of being I have come to enjoy greatly. Second, I will be on a road trip, a state of being I have long enjoyed. Third, I will get to show Katherine some of the more unique and out of the way places along the coast, places I have come to discover in my previous wanderings.

She is going to have a great time on this trip, although she is more than a little worried about rain. The Tofino weather has her worried. I did point out to her that the further south we go, the better the weather will get. I'm hoping that once we get to San Francisco she gets to liking the idea of San Diego, regardless of the extra time it will take.

Her major concern is for me. The truth is that I am fast waning in upper body endurance. I can still do it, still make the drive. Her concern is how I will do in the evenings. To moderate this, we have a different kind of a plan this time. We will be staying longer in a few key places along the way, taking the time for me to rest and for her to explore, places like Lincoln City, San Francisco and a few more.

She has the budget. She has the time. She has a driver. I get to spend more time with her. I get to do a road trip. I get to share experiences with her. It's a pretty great thing.

Saturday, 17 October 2015

Katherine's Home

Katherine's home. She's been in Toronto for the last couple of weeks, visiting with family, attending her niece's wedding. I picked her up at the airport at around 6:00 PM. Knowing that she had been in flight for hours, and that there was likely no food service on the plane, I had the foresight to pick up a tray of sushi at the Superstore on the way to the airport. I think she was happier to see me versus the sushi, but the jury is still out on that.

She wanted to spend last night here, at my place, so we dropped off her luggage at her place, then came home. She is a funny woman. Not more than a moment after getting in my apartment, she starts tidying up, rearranging the kitchen, putting things away. I asked her what she was doing, to which she replied "This is my kitchen. I have to put it the way I want." I pointed out that this was my kitchen, at which comment she giggled slightly and said "Maaaybe."

The truth is that when Katherine is around, I eat better, I sleep better, I do a better job in taking care of myself. When Katherine is around, her almost constant hugs make me feel so much better. Her laughter, both wicked and cute, makes me smile. She is fun to be around.

Then there is the whole motivational thing. This morning she got up earlier than me, as usual. I heard her banging around the apartment, once again setting things up "how they should be". A while later she came into the bedroom and said "Get up!" I asked why and she said "You promised you would make French Toast for me this morning. You have to cook." I moaned a bit and she said, "If you don't get up, I will go home. If I have to cook, I cook at my place." Needless to say, I got up, immediately. We made French Toast together.

Katherine won't let me be lazy. Nor will she push me too far. She seems to innately know where my limits are, how far to push me in order for me to stay active and alive. The funny thing is that she is not using sex or money or power as a motivator. She knows that I want her around, that I want her near me. She knows that I do better when she is here. She motivates me with her presence.

I know what is good for me. She is. She's had to go home now, finally, to get ready for a group from her church coming to her home tonight. My apartment feel empty already. I know she pushed it to the wire to spend as much time with me as she could. She likes it too. I suspect I am good for her. I hope so.

Friday, 16 October 2015

Driving Test

I am about to go and take my driver's test, or at least I am going to try. I don't have an appointment; they agency suggested I just come by and see. More than likely I will end up arranging a specific time and date for early next week.

The whole driver's license thing is another example of a hidden cost associated with ALS. I have to do a driver's test every year. It makes sense; I have a deteriorating condition. The government of Alberta wants to be sure I can still safely operate a motor vehicle. The only way to really do that is to test my driving skills. Fortunately I don't have to pay for the test. All I have to do is drive to the testing station, wait until I can be tested, drive around for the test, and then, if successful, drive home again.

The hidden cost in this is the small cost of gas for the test, and the time I use to take the test. In addition, there is the stress of the whole process. There's nothing to be done about this; it is what it is. It's important that I not be danger to other drivers on the road, or at least not more of a danger. It's not that I am unwilling to do this; I am more than willing. It's just that this is another thing healthy people don't have to do, at least not every year.

It's not just ALS that might cause me to fail this test. I might just make a mistake, not see a sign, not do something I should do, any number of regular bad driving habits that we all have. If I fail, regardless of the reason, I get to have Learner's Permit and have to pay for the next test.

All of this is a reminder to me that there will come a time when I will be unable to complete this test, when I will have to hang up my keys. There will come a time when I can no longer drive. This will be a very bad day for me. I suspect, however, that my inability to drive will have less to do with the actual act of driving and more to do with my ability to get into my truck. That ability is leaving me quickly. I would like to drive for another year; I always hope for more. We'll have to see what happens.

Thursday, 15 October 2015

Energy Requirements

I'm up. I'm moving about. I've had a bowl of cereal and a half cup of coffee. I'm even partly dressed; I managed to pull a shirt over my head. It's 4:00 PM in the afternoon and I am finally feeling lifelike. That's the thing with ALS; it leaves you constantly tired. I know one pALS online who regularly posts his nap schedule. He naps a lot. I know other pALS who seem to be able to withstand a longer day on a consistent basis. I envy them.

This doesn't mean that I cannot get up earlier. In fact I do, every Monday, Wednesday and Friday. Those are the days homecare arrives at around 10:00 AM to help me shower, and to do Range of Motion exercises with me. Nor does this mean I cannot do a long day now and again. Just the other day I did the 11 hour run from Vancouver to Calgary in a single go. I just means that, given my preferences and no other immediate requirements, I would sooner stay in bed and sleep the day away.

I suspect all of us have had those kinds of days, those lazy days where sleeping the day away seemed the finest and best use of time, those kinds of days where doing nothing seemed like the most that was possible. Even the most energetic of us must get those days, those days where their energy seems to take a break. The challenge I have is that each day is one of those days.

There is an upside to this, however. There is a certain freedom in knowing that if I am tired, I can rest. There is a wonderful sense of luxury in letting myself sleep, instead of forcing myself to get up. My reality is that once I am up, I just keep going. Once I am active, sleeping is always on my mind but need not take up a lot of room up there. Once I am headed into my day, it's not often that I head back to bed. Just some days.

Last night I dreamed about work, about missing work. The dream had elements from all of my past work life. I can vividly recall the part of the dream where I asked my old friend and one time boss to give me a work assignment. In my dream he said I was not terrified of the alarm clock. I asked him to give me some work that terrified me, that would keep me awake, even a small coding assignment. Then I fell asleep on his briefcase. The dream had lots of other weird stuff in it, but that quote stayed with me after I woke up.

I guess I am no longer terrified of my alarm clock. It isn't even set, nor has it ever been. I just don't need it anymore. When I have to get up, I manage to get up. Other than that, I sleep. I don't see how you can beat that. I just wish I had more energy.

Wednesday, 14 October 2015

Change In My Social Life

I think the time has come for me to reduce my social calendar, to cut back on my nights out. It's just getting to be too much, from a financial perspective and from a physical perspective. I find myself spending money I don't have on beer I don't need, only to get too tired to enjoy myself.

It's not always like this; some nights are better than others. Some nights are lots of fun, but even those nights are expensive. When I go out at night, I usually try to limit myself to two or three beers over the three hours at the pub. The two events I go to regularly, both Trivia and Name That Tune, run about three hours or so. Sometimes I like to stay later, just to watch the evening settle down and to enjoy the quiet ambiance of the nearly empty pub.

So if I go out at night and have three beers, the bill usually comes to just over $20. Add a tip and the bill is now $23 or $24. On the other hand, if I stay longer the bill gets higher. Even with the generosity of the bar, I still can end up with a bill in the $35 range on a late night. Do this a couple of times a week, and suddenly I am spending more than $200 a month on going out at night. Given my current financial situation, this is more than I can spend.

I can reduce this expenditure by drinking less beer. For example, last night I had only 2 beers while at Trivia. Then, about halfway through the evening, I got hungry. I ordered fries and gravy. When the bill came, it was $20.25. Add a tip and it's $23. I probably have to go down a single beer and then choose between food or a second beer to really get that number further down. Or I have to just stay home and drink wine, my own homemade wine, which costs me about $7.00 a bottle to make.

The advantage to staying home is that it reduces my exhaustion level as well. It is taking more and more out of me to go out at night. Getting dressed, getting into the truck, getting out of the truck at the other end, doing the same thing over on the way home; all of this takes energy. If I'm tired to start with, as I always am, it takes very little to push me over the edge. Staying home is just easier.

The one real problem with all of this is that I like to go out. I am a social person. I come alive in company, most times. There are days when I should stay home. Unfortunately I usually discover that once I have gone out. Mostly though, going out is an important part of what keeps me alive. I need to find that balance; just enough going out to enjoy life, with just enough staying home to save some money and preserve some energy. I'll figure it out. I always do.

Tuesday, 13 October 2015

A Sleeping Experiment

I just got out of bed a few minutes ago, at 5:20 PM in the afternoon. Today was a kind of experiment. I wanted to see if I could out-sleep the constant exhaustion that seems to be with me, a part of living where I feel like I can sleep anytime, regardless. First of all, let me say that I did not sleep constantly during the day; I had periods of wakefulness, mostly shorter than 15 minutes, where I could check my phone, go pee into my jug, or read a bit of news. But almost immediately after even this small effort, I was ready to sleep once again.

At the end, the experiment failed thanks to my body. It demanded that I get out of bed to comply with that most base of physical needs; I had to go to the toilet. I got up. Once up, having done what had to be done, I have decided to stay up. After all, tonight is a Trivia night; I don't want to miss that. It's one of the highlights of my week.

What I learned from all of this resting and sleeping is that I cannot out-sleep the exhaustion of ALS. No matter what I do, whether it is 8 or 18 hours of sleep, I am still tired when I wake up, still wanting to go back to bed. Even now I find myself more than willing to adopt the idea of returning to rest on the mattress.

I won't. I've long ago discovered that since I am going to feel this exhaustion, I might as well live with it and keep going. I've also learned that there is a fundamental difference in being tired and living with exhaustion. I can function with this exhaustion. I can be very alive, very alert. When the time comes, tiredness will take me off to sleep. Exhaustion is simply that ongoing feeling that I need more rest, regardless of how tired I may or may not be.

There was one interesting by-product of this experiment. Most mornings when I get up, my first thought is one of disappointment at not having died in the night. It would solve so many things, take away so much difficulty. My body, however, will have none of that. What happened today that was interesting. was that this thought didn't enter my mind in the least. In fact, as I was sitting doing what I had to do, the thought drifted into my mind that I really didn't want to be dead, that I really wasn't ready to go yet.

It usually takes me quite a while to get this positive in my day. I usually need an hour or two to get past the feelings of disappointment with my life and living. Yet today, after all this rest and sleep, I didn't feel this way. Perhaps that is the lesson from this experiment, that I will feel psychologically better if I sleep more. We'll have to wait and see, to try this experiment again. That's how science works.

Monday, 12 October 2015

Canadian Thanksgiving Day

It's Canadian Thanksgiving Day today. While it may seem hard to believe, Canadian Thanksgiving Day has very different roots, and an earlier origin, than our US counterpart. The first Canadian Thanksgiving can be traced back to 1578, while the first US Thanksgiving is generally considered to have occurred in the fall of 1621.

As with much of Canadian history, this day is wrapped in that greatest of explorations, the search for the Northwest Passage. In 1578, Martin Frobisher held a Thanksgiving celebration not for harvest but in thanks for surviving the long journey from England through the perils of storms and icebergs. On his third and final voyage to the far north, Frobisher held a formal ceremony in Frobisher Bay in Baffin Island. Needless to say, it was cold and there was no turkey to be had.

I have much to be thankful for, this year and for many years. It would be easy to list a trite sampling of things for which I give thanks, things ranging from the silly to the sublime. Yet most of what I have to be thankful for is drawn from my good fortune at being born in this time and place in human history. This is not to say that I could not have been thankful for much in times past. It simply means that most of my thankfulness is wrapped up in material things.

The things for which I am truly thankful, the things which I do not attribute to an accident of time and place of birth, are the most intangible of things, those which cannot be touched or held, captured or purchased. The things for which I truly give thanks are those ephemeral things such as the love of family and friends, the care and compassion shown to me daily, the laughter and happiness that surrounds me regularly.

As to material things, I have been blessed to have been born into one of the wealthiest generations in human history, in one of the wealthiest places on our planet. I have been blessed to have been born in one of the safest and most tolerant liberal democracies on earth, a place and society which is the envy of most of the world. Freedom is a given for my life, as is the opportunity to say what I want, within reason, to vote as I wish, to believe in whatever religion I choose, or none at all should I choose.

As to my illness, I am fortunate to live in a community and country where medicine is a matter of science, not superstition; where health care is considered a right, not a purchased commodity; where our society and government adhere to the principal that a just society cares as much for the least of its citizens as it does for the wealthy and powerful.

Perhaps the best way to express my thankfulness is to say I am thankful that I am here, still breathing, still living, still enjoying life. I am thankful to be.

Sunday, 11 October 2015

Another Bad Arm Day

I'm having a very bad day today, one of those "bad arm days" I get every once in a while. Spasticity is very bad; I'm shaking like a popcorn maker in a movie theater. Weakness is exaggerated; I'm stronger than this, I know I am. I just feel really weak today, especially in my arms and shoulders. Even my fingers feel tired, the act of typing is wearing me down.

The exaggerated weakness is the worst part. I am stronger than this; I know it. I just picked up a 15 pound turkey out of the sink where it was thawing and put it into the lowest shelf on the fridge. It may not seem like much when compared to times past, but the past is gone and this is today. Admittedly it took almost all I had to do it, but I did it. I know there are pALS who would love to be able to do even this, to be where I am. The problem is that I am headed to where they are, not the other way round.

I've had a lot of fasiculations in the last couple of days as well, especially in my shoulders and upper arms. This is the current battle ground; this is where the action is. Oddly enough, though, I was having these random quivers in the one or two muscles still working in my upper legs. This disease never quits, until everything is dead.

This is not an unexpected event. I wonder, in part, if my time on the river, the long drive back from Vancouver, the exertions of travel have something to do with it. There is certainly a correlation between stress, even good stress, and ALS progression. Hard work is bad for me, weird as it may sound. Once again, ALS is the upside down disease.

Notwithstanding all of this, I am up. I am out of bed. I will go to the bathroom, get dressed, start making food for tomorrow's dinner. I've already had some breakfast and a glass of eggnog. My day, shaky as it is, has begun.

Saturday, 10 October 2015

In The Driver's Seat

I drove home yesterday in one shot, from Vancouver right through to Calgary. It's about 10 hours behind the wheel, although I managed to make it 11 thanks to a detour through Kamloops and a couple of Timmie's stops. You might think for someone with a exhaustive illness that this might be difficult. It is; it's also important to remember that my body is failing, not my mind.

When I drive, I work very hard to take advantage of all the energy saving tools in my truck. For example, I use cruise control extensively, whenever it is safe to do so. I don't get out of my truck en route unless I absolutely have to; thank goodness for my jug. My truck is an automatic, thankfully, so I don't have to worry about shifting gears. Mostly I just sit there in the driver's seat, point the truck where it should go, and make decisions.

It's that whole driver's seat thing which makes the big difference. It is designed to cradle my body, the body of the driver, in a position which supports both the back and the sides. There are arm rest positions on either side, so I can rest my arms when they get tired of the 10 and 2 position. The controls are all on the steering wheel, so my focus is on driving instead of on switches and knobs. All in all, sitting in that seat is very restful, making the long drive far easier than you might expect.

That ease, that cradled seat, is all the more important now that my back and core muscles are weakening. I can sit up straight all on my own, but leaning one way or the other is almost impossible. That's how I fell off the bed the other day, by leaning too far. These days the support from the car seat, my wheelchair seat, my shower bench, all these seats are important to me; they all have safety features I use.

Here is an exercise for you. Sit on the edge of your bed, legs dangling down over the side. Now, lean sideways. How far did you get before you fell sideways? I get nowhere; the first tilt and over I go. How about leaning backwards? I can still lean about 1/3 of the way back before I fall completely if use my arms to counterbalance at the front. What about frontwards? If you lean over and pick something up off of the floor, can you sit back up? I cannot; I simply tumble forwards unless I have a restraint of some sort in the way.

My core muscles are dying. You can't see it but I can feel it. Sitting in that truck seat, those muscles are supported. It's easy. That's why I can still drive from Vancouver to Calgary in one shot. That, and a good night's sleep beforehand.

Friday, 9 October 2015

It's A Good Life

I'm headed home today, driving that long ribbon of road which connects my two lovers, Vancouver and Calgary. It's an amazing drive, one with endless possibilities for exploration and wandering. There are a multitude of side roads, alternate routes that can take you to places you might never explore if you were simply a commuter from one place to the next. The fastest roads are not always the best roads.

Whenever I leave Vancouver it is with mixed feelings. This week has been full of joy tinged with sadness, laughter touched with tears. Almost every moment has been an opportunity to love those who are close to me, a moment to share the making of memories, the telling of stories. I've seen three of my four children; Kate is in Calgary and I am truly grateful for her being there. Here in Vancouver I've seen Meaghan with her children, Mary with her children, and even Ricky had dinner one night amidst his very busy work schedule.

This was a week where I celebrated new things with my grandchildren. Charlotte caught her first fish, a salmon dragged up out of the Chilliwack River. Rose explored the Kids Market on Granville Island. While Quinn and Orson are too young to remember, I enjoyed the time I spent with them too. It helps me to know that life will continue on regardless of what happens to me. While it is wonderful to see them, I cannot help but wonder if this is the last time. I think that whenever I leave them.

At the same time as I am sad to leave Vancouver, I am looking forward to coming home to Calgary. I am looking forward to Thanksgiving dinner with friends, and especially with Kate. Katherine remains in Toronto; I am looking forward to her return home next week. I'm looking forward to my Tuesday and Thursday nights out, although my ability to participate is dwindling. I'm looking forward to my own bed, my bathroom with all its amenities, cooking in my kitchen, making my wine.

In some ways I am very lucky. I have two places which are home for me, two sets of family and friends surrounding me, two lives of activity which I can live. Not many people get that, the opportunity to have such a full, rich, life. While I may complain a lot about ALS, I certainly cannot complain about my life these days. It's pretty good.

Thursday, 8 October 2015


My daughter, Mary, is visiting here are Mom and Ray's today, along with her two children, my grandchildren, Rose and Quinn. She has taken the effort to get them onto the ferry in the morning, dropped off by her husband, Albert. I met them on this side, where they piled into my truck and headed for the Granville Island Market in downtown Vancouver.

After an hour of looking in the main market, we wandered across to the Kid's Market, a world of "I want" from Rose and a place for Quinn to rearrange every possible item on every possible shelf within his reach. Quinn is walking, just enough to be dangerous. He's 16 months old, with a vocabulary of a few words and targeted noises. Rose, at three and a half, is an energetic girl who would rather push my wheelchair than ride on it. Today it was half and half, some riding, some pushing, all fun.

We exhausted the ;possibilities of the Kid's Market, then wandered back to the main market, stopping in to buy some gelato for Rose. Cup in hand, we made our way to the waterfront benches where we discussed the nasty and noisy of seagulls. Those birds are pushy, completely unafraid of anything we might try to do. Rose had fun watching me chase them off with my wheelchair. After gelato was done, or at least as much of it as was going to get done, we hopped back into my truck and headed for Mom and Ray's place.

It was on this drive where I learned that "tickle" is one of Quinn's words. Sitting next to me in his car seat, he reached out as I was driving and began scratching at my side, saying "tikka, tikka, tikka", all the while smiling at his own impishness. He smiles a lot, as if consumed by the continuing humour of his own making. He is a happy boy, gaining smile upon smile from the simple act of tickling Grandpa. I smiled along with him, trying to stay focused on driving while this supine distractor scritched and scratched at me from the safety of his car seat.

Now we are at Mom and Ray's. Mary is nursing Quinn. Rose is enjoying a treat purchased at the market. It's a quiet time. Soon I will take them to the ferry. The day will end. Good byes will be said. I will come back here, looking for the next time Rose helps me with my wheelchair and Quinn tickles me. These are the joys of grandchildren.

Wednesday, 7 October 2015

Taking It Easy

Autumn has arrived here in Vancouver. Outside it is raining, that dreary chill, that thin soak which sits in the coastal air from now until next April. The rain will persist. The temperatures will fall. For one week, perhaps two, there might be snow here in the city, and will definitely be snow up in the valley, starting in Abbotsford and working its way up into the mountains. Yet the snow will pass quickly, floated away on the ever present rains that make the weather here a misery for half the year.

This is the price of the amazing spring and wonderful summer that they have here in Vancouver; the rain. It isn't constant; there a beautiful days here in both the fall and winter, days where the sun breaks through the clouds, where the air is crisp and clean, where the call of outdoor activity is irresistible. People golf here in December. I've been sailing as the New Year arrived. Runners run and walkers walk. This is a lovely place when the rain goes away.

Even this week's forecast has a break in it. The forecast calls for rain tomorrow, then a day of cloud, then rain for another four days. The long term forecast is for sun and cloud about a week away. But then again, most forecasters will tell you that forecasting that far out is really just a guess, so they guess for sun. It makes people happy to think that there might be sun out there somewhere.

I've seen weather in Vancouver. I've seen weather in Calgary. I've felt the warmth of the winter sun in the Middle East, along with its humidity. I've walked on the beach in Mexico while snows covered the ground at home. In all of these things, I have found both joy and disappointment. I've learned that it's not so much the weather as it is what you do with it. Some days are meant for being outside, for enjoying the smell and sound of nature. Some days are meant for snuggling up inside, staying warm and spending time to relax.

Today is a relax day, not because of the rain but because that is what I will do with this day. Every day we make that choice. Today I choose to take it easy.

Tuesday, 6 October 2015

Shower Tales

I had a shower this morning. It's a difficult thing to do when I am down here on the coast. My Mom's bathroom is constructed in such a way as to make using the bathtub and shower impossible. So when I visit here for any length of time longer than a few days, I make sure to get a hotel room for a night, one with a roll-in shower and safety bars. The one I am in now is the Sandman Inn in Abbotsford, which makes it convenient for visiting with Meaghan, Lewis, Charlotte, and Orson.

Showers are a wonderful thing for me. I love the feel of the hot water coursing over me, the sound I hear inside my head as the droplets smack onto the top of my skull, the warmth all round as the heated water heats the shower stall. Yet a shower is also a frightening thing for me, a subject of hard work and difficulty.

When I want to shower, I must first undress. When I shower in the morning, this is easy. When I shower at night, it's a bit more difficult. Nonetheless, I have to undress to go to bed, so all in all, it is a must in my daily life. What is more challenging is the transfer from my wheelchair onto the shower seat. At home, I have homecare to help with this somewhat dangerous assignment. Here on the road, when I am solo, I face the challenge of transferring onto what is often a wobbly shower bench, from an unstable wheelchair resting on an un-level shower floor. It can be exciting.

Even with a successful transfer, I am at the point where I am unstable on the bench. I need those safety bars to ensure I remain upright while cleaning myself. I don't need them full-time; I can shower with both hands at least some of the time. On the other hand, if you will forgive the pun, I need to hold onto those bars whenever I reach, lean, or turn sideways. If you find yourself in a shower soon, count the number of times you do just those things and you will see how often I need to hold on for the sake of safety.

The transfer at the end of my shower is no easier than the beginning, only now the floor has the added value of being wet and slippery. This is no matter for me; I sit. It is, however, a matter for my wheelchair, which has a tendency to slide across the well watered shower floor. I can do it; I prefer help when I do it. I did it this morning. I am safely in my wheelchair. It doesn't make it easier or better knowing I can do it.

This whole process is still just scary enough that I sometimes skip it, just to avoid the risk. But not today. Today I am clean, no longer smelling of the river, dead fish, sweat, body odor and all that. Today I am ready for polite company. I wonder how my Mom and Ray have put up with the last couple of days. At least they will have a clean guest tonight.

Monday, 5 October 2015

Coming Home

My shoulder and left arm hurt, or rather they are stiff, and not in the usual way. My back hurts; not in the place it usually hurts, but on the right side. I must have twisted it when I fell off the bed yesterday. My experience with muscular pain, even this muscular pain, is that it will go away with time, as long as I don't over work it today. Of course, given my situation, all bets are off on that one. One bad transfer and I am back pain again.

I awoke this morning and, with much increased caution, got my clothes out of the suitcase, the one still resting on that table at the end of the bed. I've moved the case closer. This way I don't have to reach too far to get my underwear, shirt, socks, pants, whatever. It all worked; I didn't fall over.

As I returned to vertical, I found myself sitting, looking out the window, beyond the slowly fading leaves on the trees lining the street outside. I found myself, as I often find myself, engaged in that 10,000 foot stare, the kind of stare prisoners get after too long in their confinement. I was looking at nothing, my mind empty, seeing nothing. Every moment or so, my focal point would shift. I would see the yellow tinged leaves hanging limply from the maple outside the window, awaiting a fall wind to shake them from the branch. I would see the tree beyond, already clothed in brilliant red, as if in sympathy for some political cause.

After a few minutes, my mind would re-engage, re-entering the real world, then, after another moment or two, my mind would wander again. As the moment of mental vagueness passed, I dressed, at least some of me. Dressing myself means taking plenty of rest in between various elements of clothing. Once again, in those rest periods, my mind would wander off into the great blue yonder. In and out, in and out, slowly getting dressed along the way.

I don't really know what I was, or am, thinking about in those moments. I've left the room, wandered outside somewhere, someplace. After a bit, I come home again, once again to engage in my reality. I understand that prisoner's stare. I am a kind of prisoner too. Many of us are that way, prisoners in our own lives. I prefer not to think of myself that way; I prefer to be free. I like coming home much more than leaving it.

Sunday, 4 October 2015

I Fell Out Of Bed

Yesterday I wrote about my inability to stop, my unwillingness to give in to ALS, notwithstanding the challenges this illness forces on me. This morning I learned another object lesson in the risks associated with pushing myself.

I've been losing the strength in my core muscles for some time now. I've mentioned this loss in its impact on my ability to "bear down" while sitting on the toilet. Another effect of this loss has been my increasing inability to maintain my balance or lift my core body up when leaning over without the aid of a rail or something to push on. This morning, this challenge became all the more clear.

I fell out of bed.

It wasn't really a fall out of bed so much as it was a slow tumble sideways as I reached for my suitcase from which I had hoped to retrieve a pair of jeans. I've been staying at my Mom and Ray's place for a few days. My suitcase has been sitting on a kind of wobbly little folding table stuck into the corner of the room. To access my clothing, I shift myself down the bed to the far end, then reach into the suitcase for whatever it is that I need. I've done this several times already, even in the middle of the night when I've been compelled to change underwear.

This time, however, I seemed to get the whole balance wrong. I slid down the bed, but not quite far enough. I leaned over to grab my jeans from the suitcase, a bit too far. My balance shifted sideways on the soft corner of the bed. I was unable to correct, so I went over, ever so slowly, like a giant cedar cut by the loggers saw, gaining momentum as I went.

A moment later I was on the floor, my head aching from the soft bang on the carpet. I was flat on my back in the space between the bed and the window, stuck, hurting, embarrassed, afraid, shaking, unable to move. It took me a few minutes to get myself together. I called Mom and Ray for help. Thank goodness I at least had my boxers on.

Of course neither Mom nor Ray can lift a 240 pound man. We needed the fire department. So we called 911 and asked for help. Then, in the ultimate of making use of idle time, Mom made a coffee for me and I took the time to regain my composure. I was barely done my coffee when the fire crew arrived. We made a plan.

Even in the rescue process, there was another reminder of my increasing weakness. We agreed that I would slide out from the narrow space between the bed and the wall, to where they fellows could more easily pick me up. As I was doing that slide, I lost my balance once again, falling over backwards into the legs of the firemen. At that point, they said stop. It was nothing for these strong, young men to lift me back onto the bed.

I'm shaken, reminded once again that ALS is working in ways unseen as it destroys my muscles. I am not as strong as I once was, no matter how strong I was once. My legs are gone and ALS is working its way up my core, slowly taking what it can at every moment. Regardless, once I stop shaking I'll be fine. Then it's back to the river. There are salmon wanting to be caught.

Saturday, 3 October 2015

Unwilling To Stop

ALS is not a disease for the weak. I know that sounds trite, but it takes an awful lot of strength to face up, to keep going, to fight on. As arrogant or self-serving as it may sound, I think the reason I am surviving ALS as well as I am is because I started strong, very strong, in mind, body, and spirit. It's just the way I am, still am. Strong, tough, unwilling to stop.

I didn't know it, but even when I was on the ALS pathway, well after initial symptoms had begun, I was still doing things like picking up trees, hauling out moose and deer from hunting, solo sailing on my boat, climbing hillside, dock ramps, stairs. I was still picking up cases of wine with one hand, still picking up furniture and moving boxes,  Even as I was diagnosed, I refused to give up on stairs; I would crawl up them if I had too.

Now, as I am well down this pathway, I still find myself doing far more "than I should". The mere act of getting dressed causes me to break into a full sweat. Going to the toilet makes my body shake as I engage in full muscular exertion. Transfers to and from my wheelchair leave me out of breath, once again shaking from the work out. Yet I still keep on keeping on. I still keep going.

It's not that I don't think about giving up. In fact I think about giving up every day. There is not a morning goes by when I don't think about just staying in bed. There is not a bathroom moment when I don't think about Depends or a bed pan. There is not a transfer in my day when the thought of staying put doesn't seem more attractive. The problem is, I just don't.

There is one thing I know for sure about ALS; once I stop doing something, I will never do it again. Once I stopped walking, I never walked again. Once I stopped standing, I never stood again. Once I stop getting out of bed, going to the bathroom, feeding myself... once these things are over, they are over for good. I am, as yet, unwilling to stop.

Friday, 2 October 2015

Another Hotel Fail

Hoteliers do the dumbest things, especially when it comes to handicapped access. It is impossible to believe that anyone with any experience or knowledge of wheelchair life actually looked at the room I am in here at the Pacific Inn in Kamploops. It's simply stupid.

They've spent a good deal of money on a hotel room, making wider aisles, making a bathroom with a somewhat accessible toilet, making a shower with a sloped edge to overcome the lip built in to the insert. I think they really tried, until someone put in the beds. These beds are a foot higher than the seat of my wheelchair!

I showed a staff member last night and she couldn't believe it either. However she also couldn't come and help me into bed when needed. Thank goodness I am in Kamloops; I called Mike and he came over to help me get into bed. It's important to remember, though, that once in this bed, or rather once high upon this mountaintop, I was trapped. To leave the bed was to be, is to be, unable to return to it. So once in, I stayed in until morning.

Since I dress while sitting on the bed, it also means I cannot have a shower. It am unable to make the transfer in order to get dressed afterwards. All in all, it's a complete fail, regardless of the other amenities in the room. The best I can say is that I slept here, and the rate was decent.


Thursday, 1 October 2015

A Long Day

An evening blog for a long day; it has been a very long day. It started at 7:30 this morning when I awoke to get ready to take Katherine to the airport. I did the same thing yesterday, only then it was Katherine's sister and brother-in-law. The whole Tsui family is headed to Toronto for a wedding, and general family get-together. I volunteered for airport taxi duty.

After I dropped Katherine off at 9:00 AM, I headed straight out for Vancouver. This trip is mostly a gift from Katherine. I want to go fishing for a few days in the Vedder and Chilliwack Rivers, perhaps the Fraser River too, and maybe even the Stave or Harrison River. So off I went, headed west into the amazing show of colour amongst the trees on the hillsides of Calgary, a palette of yellow, gold, buff and even a bit of fading green.

What I have not mentioned so far is that I had only about 3 hours of sleep last night. So this morning was exhaustion waiting to happen. The first bout hit after about 30 minutes. I didn't even make it to Canmore. I pulled over in a rest area and rested, taking about a 1 hour nap.

The second stop was at the Spiral Tunnels pullout near Field, BC. Exhaustion hit once again, so I pulled out and once again slept for about an hour. When I awoke, I had this dreadful feeling, a rumbling in my lower bowel. I tried to contain it. I put all my efforts into keeping the dragon contained. Alas, I failed. Now I was not only exhausted, but a mess with no place to change. Getting cleaned up would have to wait until I got to my hotel.

I managed to make it to Revelstoke before the third exhaustion hit. This time I slept for about 90 minutes, still uncomfortable, still a mess, still needing to get to a hotel to clean up. After waking up, I headed out once again, this time with a target of Kamloops. I managed to survive. In fact my energy level seemed to rise in the late afternoon. By the time I got here, I was more than ready to clean myself, and my clothing, and head out to dinner with Mike.

So now it is 11:15 PM Calgary time, 10:15 PM BC time. My day is almost done. All I need do now is get into a bed which is about a foot too high. I'll do it. After all, I've only been up about 16 hours. It's a piece of cake, right? Tonight I suspect I will sleep well. Tomorrow will be easier.