Sunday, 31 January 2016

I Get Angry Sometimes, Even In Cuba

It's hard to believe that a month of the year has passed already. It's a difficult time for me, the way I am feeling these days. It feels like this will be the last good year of my life, if not the last year completely. I hate to see it pass so quickly, to lose these days in the sunshine, these hours of freedome. I hate the feeling that all of this is coming to an end, that I won't get to see what happens next.

There are a couple of reasons this is hitting me hard today. First and foremost, I've come down with a cold. I've got the full meal deal; runny nose, watery eyes, headache. It's hard for me to tell if the soreness in my muscles is a part of this cold, or a part of ALS. I'm tired and I feel weak, and I'm tired and I feel weak. I guess the reasons don't really matter.

The other reason has to do with the anger that is building within me. I'm angry at what this disease has done to me, angry that it has taken away so much. I can no longer walk on the beach and feel the sand slide between my toes. I can no longer swim in the sea and feel the waves lift me up and down. I can no longer sail on the open sea, feeling the tug of a sheet in my hand as I bind the wind to my bidding. I can't play golf. I can't ride a bike. I can't even go for a God damned walk.

Yesterday I wanted to go sit on the beach. The boardwalk to the beach ends as the sand begins, but the beach area and, more importantly, the beach bar, are further down the strand of sand. It means I cannot get there without help. Fortunately the sturdy young men who are lifeguards here have come to my aide and figured out how to carry me down to the beach area without too much damage to themselves or me. They've even figured out how to get me in and out of a beach chair. For this, I am grateful. With this, I am frustrated and angry.

Once I was on the beach, well settled with a Pina Colada and my book, I took a look around me. I saw this vastly overweight woman trudging by, smoking a cigarette, carrying a beer. Why does she get to abuse a perfectly good body while I lose mine? I looked after myself, mostly. She is a walking advertisement for heart attack, stroke, diabetes, and any other ailment you could ascribe to over indulgence and lack of concern for her own well being.

I saw two men walking further down the beach, one a young man, slightly chubby, also smoking away as he walked. Behind him came a man about my age, a little bit of a middle age paunch, yet strong, striding steadily, walking confidently on the sand. I know which one I would be, which one was me. I started to get angry. The randomness of this disease is maddening, it's outcomes miserable.

I'm sitting here in the lobby area, Katherine beside me. She is so patient with all of this, with my distress, with my upset, with my illness. She deserves better. I can't give it to her today. That makes me angry too.

Saturday, 30 January 2016

Cuban Crunch

Rest is needed, really needed, after yesterday's jaunt across the island of Cuba, roaring about in a 1957 Ford Falcon, rumbling over decripit roads transversing the island in a wander from village to village. The highway network in Cuba is neither a network, nor does it have highways, other than one, the main highway which starts in the west of Cuba, runs to the center before giving up to local roads, then picks up again fair on the east of the island. The rest of the roads are two lane affairs ranging from reasonably passable to completely forlorn.

It's not just the roads themselves which make a 260 KM drive a five hour affair. It's the other traffic, conveyances of every imaginable description, suddenly appearing from behind a hill or around a corner, inevitably well over the center line, assuming one exists on your particular stretch of asphalt. On a typical Cuban road you will find everything from the classic cars for which Cuba is famous, to heavy trucks mostly of Russian or Chinese origin, to buses crammed with touristas, to horse carts for farming or local transportation, to ox carts rumbling at oxen pace, to bicycles of every vintage possible. Pedestrians abound, generally assuming that thier space is right in the middle of the road, regardless of who or whatever else may be there. Then, of course, there is the perpetual presence of livestock; horses, cows, goats, chickens, dogs, and even the occasional pig.

This cacaphony of traffic exists not just during the day, but during the nighttime too. The key difference is that during the day you can see the others. At night, lighting of any sort appears optional for most everyone and everything except for the cars. And the others on the road assume you can see them, so why worry? It takes a great deal of skill and attention to drive in Cuba, especially at night.

Fortunately we had a good driver, and our guide from Wednesday. We were in good hands all day, and well into the evening. We ended up getting back to our hotel at 8:30 PM, a couple of hours later than planned. We have traffic, and a couple of wonderful stops to thank for this.

Our first stop of the day was in Trinidad De Cuba. Cubans know there are other "Trinidad"'s, so while the city is called Trinidad by locals, they well recognize the need for the Cuban distinction. This city is over 500 years old, the first established city in the New World, having been chartered in 1514. It is an old Spanish city, with cobbled streets weaving their way up the hillside on which the city is located, those cobbles pressed and pressured into undulations and warps by a million footsteps, tens of thousands of horse hooves, hundreds of cars, and wagons beyond measure. The stones, while not smooth in pattern, are worn smooth along their surface, creating an appearance of almost softness.

The town is built in the classical Spanish pattern, with a ancient central square with the obligatory church at the upper end, shops around the edges, and the governor's house at the bottom end of the stepped and gardened gathering place. Up and down from the square, and sideways too, small house crowd narrow streets. It's a tourist mecca, primarily serving those who come to see what Cuba was like before the revolution, before industrialization, back to the early days when sugar cane was king of the island.

We had a wonderful lunch in a small, local restuarant, and then heaved me back into the taxi. The rest of the crew clambered aboard and we were off to Cienfuegos. This relatively new Cuban city was settled in the early 1800's, primarily by the French, coming from Bordeaux and Louisiana. Eventually the Spanish absorbed the local French population, although many of the streets still bear their francophone names. The city itself shows it's blended heritage with a mix of Spanish and French architecture, splashed with faux Greek columns, overhanging porches and wide inner courtyards. You could be New Orleans.

It was in Cienfuegos where we had what I have come to see as a truly Cuban experience. I wanted a coffee, with milk. Katherine wanted an espresso. We stopped at a local coffee shop where we found we could get coffee, and espresso, but no milk. We stopped at a second coffee shop. Once again, coffee but no milk. Finally at a third shop, we managed to get a coffee with milk, and an espresso for Katherine. This is fairly common in Cuba, these random outages of normal supply. On day it's milk. The next day its eggs. The next day it might be cheese. Who knows? Welcome to Cuba!

Our drive home, as the evening settled into darkness, was where the real knuckle gripping adventure began. The horse carts, prevalent during the day, remained on the roads at night although in less number, most with no lighting whatsoever. The same with the bikes, pedestrians, horses, goats, whatever. They loomed out of the darkness, unlit, suddenly blocking the road, completely believing in their own invincibility. Lurch to a stop. Curse. Go around. Do it all again a few minutes later. At one point, on Cuba's ONLY major highway, a bicyclist slowly angled his way across three lands of high speed traffic, narrowly escaping death. We stopped and our guide called to him to get of the Autopista. His response was that he was going home, only a short distance away. I hope he made it. We did, late. Now I am recovering with a Mojito. This is how I need to relax.

Friday, 29 January 2016

Planning For No Plan

Some days are a wasteland of intention. Other days are an intentional wasteland. Such was yesterday, a full day of emptiness, a complete day of incompletion, a planned day of unplanning. It was that kind of day, where waking at noon seemed like the right thing to to, where coffee in bed provided to me by a more than generous Katherine was a wonderfully slow awakening, where nothing was the highest achievement of my morning.

The rest of the day moved on like that. We breakfasted at lunch. We wandered out to the lobby in a vain attempt to connect to the non-functioning Internet. We struggled with a couple of rum overloaded Pina Coladas while we discussed our non-plan for the day. Do we go to the beach? Do we struggle with the sand between the end of the walkway and the palapas surely beckoning us? Do we go instead to our room, sitting on the patio and hurtling comments at the passers by? Such indecisiveness. Such glory.

The beach won, sort of. We were unsure how to get my sorry ass over the sand, the way to the beach bar causing us to transit the sand dune between ourselves and the beach. Beyond the dune lay a passage of sand, much to much for me and Katherine. Instead we spoke to the hotel staff, where two rather sturdy young men muscled me down across the sand to a shaded palapa immediately adjacent to the purveyor of Pina Coladas on the beach.

With some effort I managed to transfer to a beach bench, slung out low across the sand, back rest perfectly adjusted by Katherine. My task, while she explored the warmth of the Caribbean Sea, was to holler for drinks and read my book. I managed, just barely. There we wasted the better part of the afternoon, I positioned so perfectly as to not have to move one iota as the sun slowly slid across the cloud spattered sky. One Pina Colada. Two. Three. Four. All of them seemingly growing stouter as the afternoon wandered on.

Then it hit me. I cannot drink endlessly while sitting on the beach. At some point, nature and my body will demand release from containment, not just of my body, but of my bladder too. Now what? Here I am, trapped in my beach chair, several drinks into a lazy afternoon, desparate to do that which I must do. I had to go. At this point three strapping young men from the hotel lifted me bodily into my chair and dragged me back to solid ground.

A short wheel later and I was ready for relief. I expressed to Katherine the importance of this need, to which she replied "I know. I went into the ocean twice." She left to my imagination what she did therein. After a bit of rest, dinner called. We went to the buffet hall and settled in to a surfeit of whatever.

In the midst of all of our food, one of the hotel staff found me, telling me that we had 8:30 PM reservations in the Lighthouse for a seafood dinner. Katherine was pleased. She was still in her beach pants. I was also pleased. I get to eat two dinners in one night. I may be struggling with the wheelchair here, but at least I am eating well.

Today will be a day of adventure as we wander through rural Cuba, our guides attempting to show us a side of their country most don't see. It's an early start, 7:00 AM, and a full day, with a return at 7:00 PM or so. We will be watched; we know that. We don't care. It's another day where we aren't doing the planning. Someone else will do that for us.

Thursday, 28 January 2016

Mosquitoes and Seguridad

It's a lazy kind of day today. No excursions. No need to get up early. Nothing to do be rest and relax. I'm sitting in the outer patio off of the open lobby of the resort, the ocean casting a far of line of green and blue, mostly blocked by the berm of sand and bunch grass right next to the beach. There is a steady breeze blowing from the west, making the palm trees wave as if in constant greeting. The breeze is a good thing; it keeps the mosquitoes down.

There are mosquitoes here, plenty of them. On our first night we didn't notice them, most likely because it was a very cool evening. On our second night, I discovered them, lots ot them, had gotten into our room while we had been sitting on the patio with our door open. This was a mistake. That night I ended up as a feast for the flying vampires. Last night I knew better. I put on plenty of bug repellent and it worked well. Katherine, having escaped the onslaught the night before, dispensed with the bug juice, deciding instead to assume that the mosquitoes would eat me, just as the had previously. She was wrong. This morning she is a patchwork of bites that itch.

The mosquitoes are endemic. The nature of the landscape here at the resort, along with the general geography here, means there will be plenty of them no matter how much the resorts sprays and works to keep their breeding places to a minimum. The very berm that keeps me from seeing the ocean also keeps the daily rains from escaping to the sea, creating warm patches of wetness where mosquitoes hatch out at a moments notice.

Geographically, Varadero is at the base of a long peninsula creeping about 15 KM from it's base outward into the Caribbean Sea. It is a low, flat peninsula, cris-crossed with small creeks and still swamps. The resorts have been built on back filled land, leaving plenty of wet space between them for natural mosquito hatchery. Varadero itself is not in the resort zone. The only reason we talk of coming to Varadero is because that's the local airport and the nearest landmark. In reality we are out on the tip of the Hicacos Peninsula, well away from the village.

That's another fascinating thing about being here; the separation of the local economy from the tourist economy. The government tightly controls interaction between locals and tourists, managing closely those who are permitted to work in the resorts or provide services to us gringos. Using the Internet is a perfect metaphor for this control. Here in the resort, I am permitted full and fairly unfettered access to the Internet. I have no doubt, however, that I am being monitored, watched to see where I go online.

On the other hand, none of the locals are permitted access to this, or virtually any other, Internet. For them to get online, they must go to government controlled Internet access points. There use is closely monitored, access limited to only those locations approved by the government. If you pay any attention at all, you cannot escape noticing that this is a very controlled society. Once you get with some of the locals, away from that control, they'll tell you all about it.

PS. This post has been monitored, reviewed and approved by my own, personal government agent. Her name is Katherine. She works undercover.

Wednesday, 27 January 2016

Old Car, Old City

It's 6:45 PM here in Varadero. We've just gotten back from a full day excursion to Havana, driven about in a 1957 Oldsmobile by a local driver, with a local guide alongside us. We were looking at the bus excursion but I cannot get on the buses here, so we decided to go the car and driver route. I did the same thing last time I was here.

There were two major differences between this tour of Havana, and my last tour of Havana. Last time I was on my own; this time I had Katherine to share the day with me. Last time I was in a new, modern cab; this time we were in one of the old cars for which Cuba is famous. The US embargo and the way the Cuban economy works means having a car is a very precious thing. These old beauties are maintained, fixed, nudged into action as much as is humanly possible. Gasoline engines have been switched out for diesel engines. Parts have been manufactured or jury rigged to keep steel and wheel together and moving. They are loud, uncomfortable, smelly... and an absolute blast for a day's adventure.

The tour consisted of pretty much the standard stuff. We went to the National Hotel. I stayed in the cab while Katherine went in and explored with the guide. There are a great many older buildings in Havana, the vast majority aging and desparately in need of repair. The city reminds me of an old roue, her makeup halfway gone, her foundations failing. This is a city desparately in need of maintenance.

We went to Revolution Square, which our driver and guide both referred to as the Liar's Square. These days most Cubans are somewhat less than thrilled with the outcome of their revolution back in 1959; the now know that much of what their government tells them is untrue. They can see it with their own eyes. After our lecture on the failures of the Castro family, we went off to Chintown. Yes, Havana has a Chinatown, all of a block or so long. As before, Katherine went exploring with the guide while I waited in the car with the driver.

Lunch was interesting. I got out of the car. We had stopped at a local restaurant situated in a house built as a part of the old military base, across the harbour from downtown Havana. The base itself was built around the old fort guarding Havana from ocean invaders. The restaurant itself is touted as a "fish" restuarant, however they were out of fish. No worries. Katherine and I shared a Cuban version of surf and turf, with grilled pork, chicken, lobster bits, and plenty of shrimp. The driver and guide both had chicken. There was an endless supply of black beans and rice to go along with the meat portions. We topped off the excellent food with a lovely Chilean Cabernet-Sauvignon.

After lunch, we all visited the old fort. There is a cigar shop right in one of the old fort buildings which boasts the longest cigar in the world. The cigar is encased in a lengthy plastic box twisting and turning around the room, attached to the ceiling. Katherine went in to look at cigars. I was stumped by the stairs, staying outside to enjoy the warmth and sunshine. After that, it was a quick visit to the Havana Cathedral and finally off home.

It was a long day, an interesting day. I loved seeing Katherine get excited about the old buildings, the military equipment, the traffic, and the people. She took a great many pictures, and we even have a few with both of us in them. All in all, it was such a good day that we are doing it again on Friday, only this time the plan is to head to the other end of Cuba, to see the rural nature that is the rest of this island.

Tuesday, 26 January 2016

Hola Cuba!

Who would have thought that one of the best handicapped room experiences I have had so far, amidst hundreds of hotel nights in hundreds of towns and cities, would be found here in Cuba, in a beaten up, 20 year old resort. Yet here it is, a sink lowered with a mirror angled so I can use them both, with well placed safety bars beside a toilet raised up to handicapped accessible height, with a roll in shower and built in seat all well drained completely to a central drain. This is not to say it's perfect. If I wanted to, there are things to complain about. Then again, no matter where you go, if you want to, you can always find something to complain about.

The resort itself is about 20 years old. Although it has been renovated over those years, there are plenty of cracks showing in the make-up of this old dame. Tiles are broken out of the floor and need repair. One of the safety bars in the bathrooom has been yanked halfway out of the wall. Doors need painting. Towels are thin. This is Cuba in all its glory, a third world attempt at first world quality. Over all, they do a pretty good job of it. The resort central areas have high ceilings; all the buildings are open concept, with birds flying about, chattering along side the guests, all of whom are after food and drink.

Safe arrival, safe vacation, safe departure; that is my goal. Most of the worries for my trip down were for naught, with the notable exception of the transfer from the airport to the hotel. We ended up with a cab, another added cost of life in a wheelchair. On the other hand, everyone from the airline staff to the hotel maids have been terrific in helping with my wheelchair. Katherine and I are well ensconced, the free bottle of rum in our room already partially consumed.

This resort is primarily populated by Canadians, with a few Russians and Japanese thrown in for good measure. I've already seen several people who were on our flight down with us. It's a mixed group, with everything from slow moving octogenarians to yummy mommies in teeny bikinis pushing baby buggies. There are young people out for a week of bachanal, drink by noon. There are plenty of kids of every age. I've even seen another person in a wheelchair, although it looked more like he got it after he got here rather than bringing it from home.

The dress code here at the resort is exactly what you might imagine; plenty of men in cargo shorts, t-shirts of every description, sun dresses covering damp bathing suits, beach wear covering a totality from nearly not there to almost transparent to down right demure. I, unfortunately, am still stuck with compression socks, although at a minimum I am wearing them with my khaki shorts. And it is warm outside, with a gentle breeze floating in off the Carribean Sea. It's do.

Monday, 25 January 2016

Going Worried

We are off to Cuba today. By the time most of you read this, we will be somewhere over the central USA, headed on a southeasterly path to Varadero, there to spend a week enjoying sun, rum, and local excursions. We plan on at least one day in Havana, at least for Katherine. I may take that day to sit by the ocean and drink rum punch. Or, if we can get a convertible old-time car and a local driver-guide at a decent price, then I will go along as well. I can sit in the car and drink rum just as well as I can sit at the beach and drink rum.

I know I should be excited about this trip. I know I am tremendously fortunate to go on this kind of adventure one more time in my life. I know I should be looking forward to the beach, the sun, the warmth, the culture, the experiences. Yet mostly what I feel as we get underway at 5:30 AM is worry, concerned for a million little variables which can make a day far more interesting that I would have liked.

I'm worried about our luggage, whether or not we will arrive at the airport this morning to find that it is overweight. I'm overweight already; at least my luggage should conform to some sort of weight guideline. I'm worried about whether or not my computer is safely packed. This machine is my lifeline, my link to a reality outside of ALS. To lose it, even for a week in Cuba, would be a disaster for me.

That's only the beginning. Arrival in Varadero causes me much concern. I worry about the transfer from the airport to the hotel. I know the tour company has nothing provided. Maybe I should have paid the additional $142 and had them arrange it. On the other hand, I know there are local cabs that can do the job just fine. That's what happened last time. But then I worry if they cabbie will gouge us, overcharging us for the fare just because we are touristas.

And of course, what travel adventure would be complete without a worry about the "wheelchair accessible room" at the resort. This is Cuba, not a bastion of handicapped awareness. I am almost certain, even as we are underway, that the wheelchair accessible hotel room will have a bathtub instead of an accessible shower. This will impact my cleanliness for sure. On the other hand, perhaps I can encourage Katherine to give me sponge baths all week. That might be fun.

There are so many thing which can go wrong when you travel with a wheelchair. I've experienced most of them already. My biggest concern is the one which has not yet happened. I've heard of it happening to others. What if Air Transat damages my wheelchair? That really scares me.\

Oh well. I'm the guy who fixes stuff. I'm the guy who makes things work. I'm the guy who looks at trouble and sees adventure. I've got to let that guy take charge. After all, we are on our way and there is nothing to be done about any of it. I might as well relax and enjoy the ride.

Sunday, 24 January 2016

I'm Late

It's 5:35 PM; I'm finally sitting down to write this post. I've had a shower, put the laundry in the washing machine, and I have a pot of water on the stove near boiling so I can make Kraft Dinner. This was not my plan for the day. This is just how it worked out. I had planned on being home at about 2:30 PM. We didn't make it.

When we woke up this morning in Edmonton, we did not have a workable shower in the hotel room. There was a plumbing problem the night before, so much so that we were considering changing rooms. However the hotel had no other handicapped rooms available, so we stayed, our plan being to shower when we got back to Calgary. As a compensation for our inconvenience, the Radisson Hotel gave us 50% off the room rate, plus coupons for Sunday Brunch in their restaurant.

We didn't plan on using the brunch coupons; we wanted to get home to our showers. After getting up, we simply got dressed, ready to hit the road. Then Katherine, at my urging, checked out the brunch before we left. As it turned out, we did stay for brunch after all; it was a terrific brunch buffet with all the stuff we love. So our 11:30 AM departure became a 12:45 PM departure, with an ETA for Calgary of 3:45 PM; it's a three hour drive.

There was a major accident in our pathway as we left Edmonton. ETA was now 4:00 PM. We headed out of town. By the time we got to Red Deer, Katherine needed a bathroom and I desperately needed to close my eyes for a few minutes. She went into Tim Horton's, all the better to provide me with coffee. I rested. Suddenly our 4:00 PM ETA became a 4:30 PM ETA. Still not bad, but getting later in the day.

The drive itself was lovely; beautiful clear blue skies, sun shining of the snow, glistening with a trillion sparkles against the brilliant white of the covered fields. That is, until we started talking about our plan when we got home. My plan was not Katherine's plan. I had planned on getting home and writing immediately. She had planned on getting me home and into the shower immediately.

Her reasoning was that she wanted to get to her place as soon as possible so that she could have her own shower, pack and prepare for Cuba. Then, when she had everything ready, she would come back here and we would leave together in the morning. I wanted my plan; she wanted hers. There was discussion, followed by a period of non-discussion. We decided that her plan was best.

So, I got home at 4:30 PM. I had a shower. She put on my various creams and powders. I decided to get the laundry started right away, and start on dinner too. I could have started writing immediately, but there you go. I didn't. So that leaves me finishing this post at 5:50 PM. I have a bunch of reasons why, but none of them seems really good. But there you go, again.

Saturday, 23 January 2016

Off To Edmonton

I'm taking it a bit easy this morning, taking my time to enjoy the breakfast Katherine made for me, a second cup of coffee, writing this entry. Once I am done here at the keyboard, I am off and running for a few days of road and air travel. I'll be busy until I get on the plane at 8:30 AM on Monday morning, where I can rest for about five hours as we wing our way south to Cuba. In the meantime, it's off to Edmonton this morning, there for the night, then back on Sunday afternoon. Sunday evening is shower, laundry and final packing for Cuba.

The trip to Edmonton is perfectly timed. It's a chance to see my brother Jim in an abridged version of Beauty and The Beast; he is playing The Beast. The show is a charity affair, put on by The Imperial Sovereign Court of the Wild Rose, the GLBT group my brother belongs to in Edmonton. He is the "G" part. The whole group began as a gay support group many years ago and has since become a significant fund raiser for a variety of straight and gay groups in Edmonton.

I've seen my brother Jim act, dance and sing in "straight" productions before; this is the first time I will see him in his GLBT group. I'm not sure that there will be a great deal of difference. His group, and he in particular, puts a lot of time into these productions with many rehearsals, set creations, staging and all the rest. It's no high camp spoof; they are going to sing and dance their hearts out for us. I'm expecting a good time.

For many years I had issues with my brother's sexuality. Eventually I realized it's none of my business. As the song says "Who we love, and why we love, is hard to understand." I am certain that the details of my sex life are just as icky to Jim as the details of his sex life are to me. Some things are just meant to be left alone.

While this disease has made me angry, difficult, and even more of a drama queen than ever before, I am fortunate to have family near me who care. I hear from many PALS online who are not so fortunate as me. I am grateful that my family is here. I am grateful that they put up with my wild emotional swings, my anguish, my tears, my needs, my frustrations, even my demands on occasion. I am grateful that they come to see me. I am grateful that I can share my life with them. I am grateful I can still go to see Jim sing and dance on stage up in Edmonton. It will be a fun trip.

Friday, 22 January 2016

Close Is Not Good Enough

In every system, in every group of people, there are some who are good at what they do, and others who are problematic. Even my Home Care has its problems. One example comes in the form of the HCA who cared for me today. It's not that she is incompetent. Technically she is competent; she knows what to do. However she is at the low end of that competency scale.

This particular HCA is one of those people who is continually slow moving; she moves at some pace based on an internal rhythm running at a tempo lento, a lifetime lentando. She shuffles, her feet dragging on the floor; if she had soft pads on her soles, she could shine the floor at the same time as she moves about. Her responses are slow, lethargic. She doesn't seem to want to, or care to, understand instructions unless I demonstrate them and repeat them. She's just plain slow and sloppy.

For example, today as I sat wet in the shower, she shambled her way from what seemed to be a tremendous distance, appearing hesitantly at my bathroom door, as if uncertain what to do next. After a clear pause for thought, while I sat and shivered, she grabbed a hand towel, passing it to me so I could dry my body. I pointed out the bath towel; the light bulb lit, she passed it to me. She helped me to my bed, put on my creams and powders, then disappeared into the hallway to play with her phone while I dressed myself. I don't need a lot of help dressing, but it's nice if the HCA is standing by just in case.

Oddly enough, while she was slow in every extent, she seemed to be in a hurry to complete my exercises, not that she moved quickly in any manner. What were supposed to be repetitions of five became possibly four, or so, maybe. What were supposed to be 30 second holds became 10 seconds until I started to count to 30 out loud. When I tired of counting, time shortened once again.

It's not that she is, or was, a bad person in any way. She seems fairly something or other. I just don't know what. All I can say for sure is that she is clearly not terribly interested in her job, or at least not interested in doing her best at it. She is a slow moving, close is good enough kind of person. Her care is not faulty, mostly. It's just not all that good. When it comes to health care, close is certainly not good enough. Unfortunately, since she is not doing anything really wrong, I feel like I cannot ask for a replacement.

Thursday, 21 January 2016

Extra Things

It is so easy for us in Canada to forget how fortunate we are. Here we are complaining about the price of cauliflower, while people in other parts of the world have never seen one. Here we are complaining about a store not having our shampoo in stock, while whole stores go empty in places like Somalia, Ghana, Cuba, and a whole host of places around the world.

Of course my focus is on Cuba right now. I'm putting together some personal care items along with few extra pairs of jeans to take with me as gifts for people I meet. These things are almost impossible to purchase in stores. There are whole market places with virtually empty shelves, thanks to the US embargo. I've been told that people in the tourism industry, particularly those who receive tips or gifts from tourists, are some of the wealthiest on the island, while many of the true local people have little or no access to things we think of as normal, even essential.

In some respects, spending time on my boat in summers past, time away from grocery stores, Costco, Walmart, has left me with at least a limited appreciation for provisioning stops with limited supply and high prices. I remember going into one general store up the coast only to find most of the fresh goods depleted, along with canned goods which were well onto a year old. It was hard to get fresh supplies, and what they had was too pricey for most people. The next time I went back, the store had closed forever.

We live in such a rich country. On almost every street corner there is someone offering wares which would seem near impossible in so much of the world. I live in a place where I can get specialized wheelchairs, when so much of the world lives with no access to any sort of wheelchair. I live in a place where I can choose from a dozen different stores when I want to buy apples, while so many places have never seen an apple.

Certainly many places have local goods. Certainly many places have their own national produce systems. It is the variety and plenty that makes it different for me, for us in this country. The people in Cuba are by no means poor. There is food, plenty of it, although not much in the way of variety. There is education for all, health care for all, housing for all. They just can't get toothpaste or tooth brushes all that easily. Or electronics, or books, or most of the other things blocked by the US embargo. And that's why I am packing some extra things.

Wednesday, 20 January 2016

Deferred Consumption

I've just returned from having new tires put on my truck. Timing between Home Care and getting the tires was tight, turning my morning into a squeeze. My wallet got squeezed too, but thanks to some financial help from Katherine and my daughter Kate, I managed to make it. Although I wonder if new tires on my truck were the best possible investment. It gets even tougher when I consider that I likely won't be driving anymore after some point within the next few months.

I think of a lot of things that way these days. I look at the potential life of the object versus my potential life for using it. Then, as with the truck tires, I look at the risks of not having a particular thing in places, as well as the utility of the object. With my tires, for example, safety is an important factor. We are headed up to Edmonton on Saturday to see my brother Jim in a play; driving on Alberta roads in the winter with worn tires does not seem like a good idea. Safety beats out the desire to spend the money on something else.

My TV is another example of this. One column of pixels has failed on the left side of the screen. It's easy to see when there is a white background, but more difficult to see if there shade and or colours in that area of the screen. It doesn't make a lot of sense to spend $500 to $1,000 on a new TV, just because of one column of pixels. Especially since my usage amount and usage time for that TV is limited.

There are more examples, things like buying a new mattress or looking at a new TV stand or should I buy new towels. There are shorter term decisions like this too. A friend asked me recently if I was still buying green bananas; no, but not because I am afraid of them timing out. I don't buy green bananas because I only buy bananas when I want to eat them, and I don't like having them hang around on the counter or in the fridge.

On the other hand, my wine making is an excellent example of deferred consumption decisions. When I make wine, it often has to be left for six months to a year before drinking it. Given my expectations, should I be making a wine that won't be ready to drink for a year? Probably not. I can barely see past three months, the amount of time it takes to make the wine. Then, I'll have to wait a couple of more months before drinking it. That puts it out there a ways, out past my certainty date.

Not making wine will be a tough decision, but it will have to happen someday. Once that happens, you'll know the clock is ticking loudly.

Tuesday, 19 January 2016

Unexpected Return

I have to be careful when I talk about never doing something again. Certainly it's notthing with my legs. Anything associated with full use of my legs will never come round again, short of a cure for ALS that includes recovery of dead muscles. There are things associated with my weakening arms which I will never do again, like pick up a wine kit all on my own, or make a complete lift and transfer without sliding.

On the other hand, I forget that loss of strength can sometimes be replaced by willpower and creative thinking. Other times, it's just plain good fortune. About five months after my diagnosis, shortly after going into my wheelchair full time, I decided to go to Cuba. I had a great time there; the people were wonderful, the setting fascinating, and the bar was always open. When I was checking out, one of the staff said they hoped to see me again. I demurred, explaining my situation and saying this would be my only trip to Cuba.

Nothing in life is certain, not even failure. I am headed to Cuba again! Katherine said a while ago that she would like to go to Havana. I told her about my trip to Cuba, the benefits of staying outside of Havana instead of in the city, the beauty of the beaches, the many excursion options from the resorts out in Varadero. She said "let's go".

Of course it would be unlike me to take a simple thing and leave it simple. I struggled greatly with having Katherine pay the full costs of both of us going on a vacation. I don't mind some subsidy, but these days I have no ability to contribute whatsoever. So I fussed and worried and stressed and needled. In the end, I just had to realize that she was in the lead on this, that she would make the decision.

After all my emotional wrangling, she decided, once again, that we would go to Cuba, preferably before the end of January. So we booked a package trip to Varadero; we leave January 25th and return February 1st. She will go back to work shortly after that.

I'm very excited about my second trip to Cuba. I did not think, did not even suspect, that I would get to do this again, get to travel on such an adventure. Katherine is making this possible, for herself and for me. It's going to be so much fun. I can hardly wait for next Monday.

Monday, 18 January 2016

New Ways For Old

My left arm and shoulder are hurting. I would like to say that this is a result of my Range of Motion exercises, but that would be a lie. They were hurting before the HCA arrived. They were hurting last night. They pretty much hurt all the time now.

I've noticed a deterioration in my left arm of late, moreso than in my right arm. I know both of them are slowly failing me. My right side, however, is stronger than my left, so I notice the loss less, and it seems to take longer to lose it on my right side. It doesn't really matter. My arms are well engaged in the process of failure.

I notice this loss in couple of specific ways. It's extremely difficult for me to get into my truck these days, although driving is not difficult at all. It's the transfer, the lift up from my wheelchair cushion onto the lift seat of my truck. I can't make that lift and transfer any more, unless someone helps me. Mostly it's Katherine who does that, grabbing my jeans at the back and giving me a bit of a boost. Other people help too, in the same way. I know it's a bit more awkward for them, and they shall remain unnamed, but they help, for sure.

When I am alone, it gets interesting. As well all of these problems, I have to learn new ways to do old things, so I can keep going for as long as possible. With the truck seat, I have developed a solo method which will work for a while. What I do is get close to the seat, as close as possible. Then I lift my right thigh up out of the wheelchair and put it over the lift seat. The lower part of my leg comes along for the ride. My posterior lifts, ever so slightly, creating a sliding angle from wheelchair to lift seat. Once my leg is in place, I pull myself off of the wheelchair and onto the seat using the steering wheel as my grab point.

It's not elegant. It's not easy. It's not fast. In the winter, that "not fast" part is a bit of a problem. I can get rather cold in the process. If it's snowing, I can get a bit wet as well. It's not that big a deal, a small price to pay for continued freedom. Once I am on the lift seat, everything else is relatively easy. It's the transfer that counts. It's that new way of doing something which will keep me going. There are other changes too, but more on them some other time.

Sunday, 17 January 2016

I Smell Funny

I smell funny. No, I don't need a shower. Yes, I wash myself regularly. The difference is not so much in the level of my personal aroma, as much as it is in the quality. My scent has changed over the last year or so. Plus other parts of my body smell now, not just my armpits. I know there have been times in the past when my body odor was noticeable, but it was still mine. Now I notice that it's not just more pervasive, but it's not my regular smell.

We all have some sort of body smell. This goes all the way back to the our ancient history, when smelling one another was an important part of our survival. We all have the ability to distinguish the finest differences, the lightest of differences, between one smell or another. It's a remnant of when we once were animals not all that long ago. Body odor was a fact of life until Madison Avenue and modern marketing convinced us that the human smell was repugnant. We may be less attuned to it these days, but we all still have it; our own personal fragrance.

What's happened with me is that, over the last couple of years, my personal fragrance has changed. I smell different. I am convinced that this has to do with having a full body illness. There once was a time in our history when we could smell illness. These days we even have dogs that can smell cancers. Our body changes when we are ill, and that means our scent changes too. I think I smell different because my body is too busy dealing with ALS to worry about scent balance. On top of that, I suspect my chemical balance in my body is all out of whack thanks to the drugs I take for heart disease and ALS side effects.

This change in the way I smell is not just in my underarms. The more private areas of my body smell different now too, perhaps a function of forever being seated, those areas never having a chance to fully air out. It also has to do with my failures in going pee, leaving me almost constantly, just slightly, ever so slightly, damp. It's no fun, this wheelchair life.

I wash regularly. Oh how I wash. I scrub, shower, rinse, and dry thoroughly more often than most. Yet that damned smell is still there. And it's not my smell. It's different. Yuck. I hate it.

Saturday, 16 January 2016

A Lazy Laptop

Katherine has her own unique way of torturing me. This morning, after getting up and making breakfast in bed for me, she announced she was leaving to go home to her place. She has a church function every first and third Saturday afternoon each month. Today is the day, and she likes to get a head start on things. No worries, I knew this was coming. So I said to her "I'm gonna have a lazy time today. I'm just going to sit up in bed and watch the snow fall outside." She said what I chose to do was up to me.

The problem was that my laptop was out in the kitchen, sitting on the table. So I asked if she wouldn't mind getting it for me. Now this was in the midst of her cleaning up after breakfast, rushing around to get out of here, making sure I had an extra quilt for the cold day and night to come, and generally doing her stuff. She did it, though. She stopped what she was doing to get my computer for me. She brought it into the bedroom. Then, wicked woman that she is, she placed it on my wheelchair, just far enough away that I would have to get up from my lazy-ass position to get it.

Then she giggled, and left.

I sat here for a while and tried to levitate my laptop towards me. No luck. So finally I got up and got my laptop, and promptly returned to my warm bed. I'm here still, looking out at the snow and wondering about the chill outside. It's -16 C out there, with a skinny snow falling, brittle, hard flakes wisping in and out, coming going. The energy of the air is sapped by that cold. But I have my blankets, and now my computer too.

Of course she laughed at me when she put my computer just slightly out of reach. It was her way of reminding me that there is a lot of difference between not being able to do something and simply not wanting to do it. She constantly reminds me of all I can do, and supports me in doing so much of it. At the same time, she does so much for me, so many of the things I might do, but might not be able to do.

Of course I laughed too. Our sense of humour is close. We both find the same things funny. That's one of the reasons I love having her around. We laugh with each other. We laugh at each other. We make fun, of ourselves and of each other. Yet in all of this there is absolutely no malice, no meanness, no judgement. We're just having fun. The laptop thing was funny. That's all there is too it.

Friday, 15 January 2016

Happy Anniversary

Katherine and I are celebrating our first anniversary today. One year ago, on January 15, 2014, a miracle happened; Katherine fell and broke her arm. That is not really the miracle. The miracle is that she called me to say she could no longer be my caregiver, that she had to quit because she broke her arm. The miracle is that, when I asked her if she wanted to come over and talk, she said yes. The miracle is that she did not walk out when I made my advances.

I've been really lucky with Katherine. It's not like it's all free and easy; we have relationship challenges just like anyone else. The thing with Katherine is that she doesn't keep things in her mind and bring them out later. When something comes up, we deal with it. When it is gone, it is gone. Most of the time we laugh, talk, work things out. Most of the time we discuss; agreement is not a requirement. She just asks that I accept responsibility for my actions, just as she accepts responsibility for hers.

In the last year, we have spent more time together than most people, traveling thousands of kilometers on road trips, staying in dozens of hotels in dozens of towns, eating in just about every kind of restaurant you could imagine. Mostly it's the hours and hours in the truck, driving to virtually every corner of the North American continent. At home we are together almost all of every day, most nights too. Those nights when I am alone, I miss her.

Notwithstanding our tight relationship, she has her own life and I have mine. She makes sure that I get out to my Trivia nights, and that she maintains her commitments to her church life. I support her in her life; she supports me in mine. There is time enough for us to be together, and time enough for us to be apart.

Perhaps the best thing in our relationship is the absences of judgement, or at least the absence of judgement-based behaviours. If she does something I don't agree with, that's her business, and vice versa. I respect her, and her decisions. She respects me, and mine. When I do something foolish, she may scold me, but quickly lets it go. If she does something that annoys me, I just put it down and leave it. There is no need for anger. We may disagree, but we rarely fight, if ever. Our willingness to forgive and move on is what makes it so worth while.

In all of this, a year does not feel like a long time. At the same time, it feels like we have been together forever. We like to be with each other. We love each other. That's a pretty good anniversary present.

Thursday, 14 January 2016


Katherine is standing at the window, looking out at the snowfall. It's been snowing all morning, periods ranging from thick and heavy to light wisps. But it's here, and the Chinook wind has gone, the cold Arctic air creeping back over southern Alberta, the chill of winter once again falling over the land.

Most people who haven't experienced it really don't understand what a Chinook, or more properly a Chinook wind, really is. Leonardo Dicaprio experienced his first when he was here filming a movie last year, fearfully attributing the dramatic weather change to global warming. He didn't realize that these weather patterns which bless Calgary with wonderfully warm days in the midst of an icy winter have been happening for tens of thousands of years.

The Chinook wind is a wind off the Pacific Ocean, heavy with moist air, which rises up the slopes of the Rocky Mountains. As the air rises, it loses its moisture as rain or snow. Pressure from more air coming behind pushes the air mass continually higher and higher, until, now a dry, warm air mass, it tumbles down the eastern slopes of the Rockies, funneling through the river valleys, blasting out over the flat prairies, raising temperatures dramatically in a period of hours, or even minutes.

Calgary and environs sit right in the path of this wind, right in the midst of the Bow River Valley, a natural funnel, concentrating the winds near the mountains and exploding them over the plains at forces sometimes nearing hurricane levels. These winds have been known to blast windows out of office towers, flip over trucks on the freeway, and melt a foot of snow in little more than a few hours.

Coastal sailors know of these winds, and their cousin the Katabatic Winds. Katabatic winds are cold air masses rushing down from glaciers, typically out to sea. Adiabatic air masses are warm, rising winds which climb inland over the mountain tops. Both produce rugged air over inland waters, sometimes dangerous enough to destroy boats and bring death to the crews, both hit the ground hard, pushing down trees and destroying buildings. Both happen in BC and Alberta.

I'm glad to see a Chinook. I love the warmth, the sun, the arched cloud patterns which rarely rain. Unfortunately the Chinook turns the streets into muddy slush, the playgrounds into puddled pools of melt. Fortunately the cold returns soon after, sometimes bringing fresh snow, turning the melt into ice and, when there is no snow, drying out the roads.

I love the weather, here, at sea, on the coast, in the mountains. It's forever changing, forever renewing, forever molding our life, and our planet.

Wednesday, 13 January 2016


I'm going for a drive today, an attempt by Katherine to get me out of my apartment, out of the depressive funk I've been in for the last few days. We are headed to a small town southeast of Calgary called Vulcan. It wasn't named for Star Trek, but it certainly enjoys its notoriety. They have a model of the USS Enterprise at the Tourist Centre, and a couple of small Star Trek museums around town.

Along the way, we plan on grabbing a burger and milkshake at Peter's, a famous Calgary drive-in, one to which I have not yet favoured myself. It's about time. Then, a wonderful drive through the wintry Alberta countryside, a stop at the Vulcan museum, and a drive home by a different route. It's the perfect afternoon adventure.

I need to get out. I need to escape, if only for the afternoon. While not technically housebound, I am feeling increasingly trapped these days, caged by ALS. This is a breakout, a prison break of sorts, where I leave the four walls of my apartment behind me, and, for a few hours at least, I forget about ALS.

It's the kind of day I need now and again.

Tuesday, 12 January 2016

A Caged Lion

I am an old lion, trapped in a cage, pacing back and forth across the confining boundaries, glaring balefully through rusted iron bars at a landscape encrusted with dull grey concrete, fat with indolence and inactivity, tired of the constant sloughed march from end to end yet not knowing what else to do. Once I was king of the savanna, ruler in my domain, master of my own destiny. Once I was free, able to run wild without this metal containment.

Would that I could even pace, for that would make this metaphor all the more telling. But I cannot. My cage is not one of iron bars, yet I too look balefully out on the world beyond my windows, crusted in it's own icing of snow and concrete. I can see, off in the distance, a forested and grassy hillside, once open to me in all seasons, now closed to me completely, too much for my weakened body, too difficult for a wheelchair. My freedom, my domain, my destiny are all ripped from me, leaving me weary of this metal containment.

Katherine deserves more than this. She loves me, cries when I talk of life "after", cradles me up and holds me in my sorrow. She deserves someone who can give her so much more than I can, someone who can share her life for so much longer than I will. She, filled with energy and enthusiasm for life, laughing and ready for love, sharing, kind, giving, deserves someone who can return all of that and more. All I have is my cage, my containment, the old, rusting bars holding me in.

There is no dignity in this end, no march into the sunset, no sail over the horizon. There is no gentle evening of life awaiting me. This slow slide into ignominy, this ever increasing encagement, this dying body supported by metal and machine, leaves no time for sitting on a porch, holding hands, watching the sun go down. I am stultified, my mind alive, my body dying, my voice no longer able to rage at the dying of the light.

I am tired, so tired. Like that old lion, I am simply pacing out my days, waiting for an end which I know is coming, glaring at all in life I cannot do, angry with how trapped I feel, sorrowful for the way in which I must live. Like that old lion, I would once again feel the grass beneath my feet, the wind on my chest, the tug of life in my arms. Like that old lion, I would once again climb the hill, stand amongst the trees, and then lay down my body in peace, resolute in the knowledge that I had, just one more time, been the master of my own life.

Monday, 11 January 2016

David Bowie Is Dead

Death comes to all of us. It came today for David Bowie, a cultural icon, a man with millions of fans, a man of whom a great many articles and stories have been written, a man who will be remembered for his artistic creativity. Another man died today, a man nobody knows, a man with ALS, a man with a wife, with children, with grandchildren. History will not note his passing. He was an ordinary man.

There are so many ordinary people out there, living and dying lives of ordinary pace and style, leaving behind their mark on history in their limited way. A hundred years from now, people will remember David Bowie. His mark will be written, read, rewritten and re-read. His life was one of extraordinary pace and style.

I wonder at times when we make this big event out of the death of a cultural icon if we remember our own, personal icons. I ask myself constantly if these great icons truly deserve the fuss and fury surrounding their passing, that most natural, and unfortunately, most human of all things. Did this happen when Shakespeare died? Did this happen when Da Vinci breathed his last? Was there global mourning when Mozart struck his final note?

Much of our collective grief over the passing of David Bowie is based on our modern media culture. This technological age has given us the global ability to feel like we have a relationship with someone whom we not only have never met, but in a great many cases, never seen in person. It also gives us a great cultural community, much greater than ever in history, a global culture where we can truly celebrate artistic talent.

For many of us, our lives were enriched by David Bowie. We feel a kinship with him because his music touched us. The notice of his death is sad, his passing a moment of sorrow. Yet I am compelled to ask, is it more sorrowful than the death of that unknown man, the one with ALS? Is it more sorrowful than the death of a child from cancer?

Maybe it doesn't matter. Death is the great equalizer. Just as David Bowie will, that unknown man will pass into history. Both are gone. Both left something, someone behind. Both knew sadness in their life. Both stared into the face of destiny. One did it on a global stage. The other did it at home, with his wife, with his children, with his family, with his community. That's the only real difference.

Sunday, 10 January 2016

Advice You Didn't Ask For

Each day on Facebook I see these posts offering guidance for living, memes talking about how to be serene, how to be happy, how to live a good life. There are longer posts with the 10 or 20 things you need to do to achieve success in life, or to be the best you can be. Advice is so easy to give. Saying something profound is not as difficult as it appears. So I don't give advice very often, especially not in my blog. Yet today I will break that rule and offer a few thoughts garnered across 60 years of life, thoughts and things that keep me going, in spite of it all.

When one of my brothers was going through a divorce, my Dad said to him, "You're gonna do shit. Forget about it." While I don't necessarily agree with my Dad in full, there is a kernel of wisdom in that statement. The past is the past, whether it is yesterday, last week, or a decade ago. Learn from the past, but leave it behind. Don't let the shame or guilt from what you did in the past ruin the life you have today. You were there. Take what you learned from being there and be a better person here.

Stop punishing yourself. Forgiveness is in your own hands. All to often I have berated myself mercilessly for my mistakes, for my errors in judgement and deed. I have felt shame long after, where no shame was needed. If a sin calls for atonement, then atone by all means. After that, forgive yourself. Put it down and move on. Do your best to leave the baggage behind and take the lesson forward. The first step is self-forgiveness. Remember, the world will value you only as you value yourself.

Look inward and learn about your spirit, your soul. For many people this means going to church, seeking God in traditional ways. For others it means meditation and self-awareness. For me, my greatest sense of spirituality came from being out in nature, on the sea, in the forest. It was there, far from the noise of daily life, where I could contemplate my relationship with myself, with the world around me, with that spirit which transcends my corporeal form.

Seek help. As the author John Donne said "No man is an island entire of itself; every man is a piece of the continent, a part of the main...". In today's rapid fire, interconnected, always on world, it is increasingly difficult to make and maintain those human connections. I cannot stand alone. Whether the help I seek is physical, spiritual, or psychological, I must reach out and ask for it. Whether that help is from those I love, from a spiritual guide, or from a trained therapist, I must seek out that aid and let it uplift my life each day.

Make amends. The French word for "fine", such as a highway traffic fine, is "amende"; you pay for your misdeed. It goes much further than that in life. If you have wronged someone, do what you can to make it right. As my friend John Oddy use to say to his children, "Don't say 'sorry'. Do sorry." If it is so badly broken that you cannot make amends, then seek forgiveness, forgive yourself, be sorrowful in spirit, seek help.

There are so many more mundane, trite things I could offer. I will not. My treatise is simple. Forgive, but don't forget; you can leave the past behind but it is still a part of your life. Stop punishing yourself; there's always someone out there willing to pile it on. Develop your spirit and soul; in the end it's all your really have. Don't try to do it all alone; there are people out there who can help you, no matter what your situation. Where you have harmed others, ask them to forgive you just as you forgive yourself; love starts with forgiveness.

Saturday, 9 January 2016

Wine For Life

I'm shaking badly this morning, my fingers wobbling so much as I hold them over the keyboard that I am scarce able to type. Re-type and correct is the order of the day. Slow down, rest between words, take time to breathe, get ready to type again; this is how it's going. I can feel the spasticity right into my core, as if the whole trunk of my body is shaking somehow, only in small vibrations, not the big ones I can see in my hands, nor the wild tremors of clonus.

There is no reason for this shaking today. I went to bed at 10:30 PM last night, finally falling asleep at around 11:30 PM. I slept until noon today, at which point Katherine brought me coffee and breakfast in bed. I am well rested. I was well behaved with respect to food and drink last night, having an excellent dinner with plenty of meat, potatoes, and vegetables. I only had two glasses of wine last night, or three if you measure them in smaller portions, spread out between dinner and bedtime. I had plenty of water to drink; Katherine made sure of that. Yet still I shake.

Since there is little I can do about it, I might as well get on with my day. Today is wine bottling, or as Katherine calls it, my wine harvest day. It would be nice if I could claim to have put in all the work of making the wine, but I have not. It is well beyond me now. Bottling is the same. A group of friends will come over today and help. By help I mean they will take over my apartment, hustle me out of the way, bottle the wine, and most likely make dinner too.

Katherine and I have provided the needed supplies although everyone attending has asked if we need anything for the day. My simple role throughout the day will be to ensure that things are there when needed. I don't even need a plan; Brad and the others will take care of it all. Wine will be racked, filtered, and bottled. Labels and caps will be added. Cases of wine will go into the closet.

I asked Katherine what will happen when I can't do this any more, when I can't contribute to making the wine. She pointed out that I do little already, that others do most of the work. Then, jokingly, she said "You won't have any more wine." That is a frightening thought. I hope to keep enjoying days like this for a long time. When I can't enjoy them, I'll still try to drink my wine. When I can't have anymore wine, what's the point in living? Maybe that's why I'm shaking today. Fear of not having wine. There's no better reason.

Friday, 8 January 2016

Linens And A Nazi Salute

Since when did bed linens get so heavy? I noticed it today, when I got out the clean bed linens so the Home Care Aid could make up my bed. Those sheets and pillow cases weigh a ton! Actually, the weight of them probably hasn't changed at all. It's my strength which has changed, my ability to pick them up and carry them. That's what's different now.

ALS is like this. It sneaks up on you, incrementally decreasing your strength without you really noticing, until you do something that you haven't done for a while. Then, suddenly, you realize that your body really has changed, that you really can't pick up that stack of sheets and pillow cases, or at least not without some substantial effort. Then you get your surprise.

We did my first round of Range of Motion stretches for my arms today. This was another surprise, although not as much as the linens. I have known for a while that my loss of strength has impacted my upper body flexibility. I've felt the increasing difficulty in lifting my arms above my head; I avoid it these days. I've felt the pain of a frozen shoulder increasing as the weeks have gone by. I knew it was getting worse.

The exercises proved what I suspected, only it was worse than I thought. Even on a flat surface, laying down with no load on my arm muscles, I was barely able to rotate my arms into a vertical above my head. Remember, I wasn't lifting them in the air, I was rotating them while laying flat on the bed; no weight on them. Yet still, my muscles screamed at me, my shoulder joint raging in pain, as I attempting the final third of the full upward rotation.

By the time we had done this two or three times, I could complete the upward rotation on the flat. Then we tried another angle, where I rotated my arm as if in some bizarre Nazi salute, except the attempt was a full rotation. I managed to make it most of the way, but I still looked like something out of a bad war movie. It hurt, too.

These two activities demonstrate the two parts of this disease. You can see the change as it happens, but you don't really realize it's happening until you get there. Along the way you make little compromises, like only picking up the bottom sheet, then the top sheet, then the pillow cases. Along the way you limit yourself to what doesn't hurt, like not making a Nazi salute, or better yet, not reaching for the second shelf in the cupboard.

Slowly but surely you do less and less, until you can't do anything at all. That's how ALS works.

Thursday, 7 January 2016

Dim Sum For Breakfast

I was laying in bed when Katherine arrived this morning, my eyes closed, still ready to sleep, wanting to continue in my slumber. I heard the door open, heard her entry, her light footsteps padding about the entry hall. This gently rumble of noise woke me from my partial slumber, her voice softly asking me if I was ready to get up.

Outside my window, the snow is falling, ever so lightly, almost a white mist in the wind, tiny flakes blowing sideways as much as they fall down. The air is a brittle chill, snapping at the pedestrians, clinging to the cars going by on the street below. It's the kind of day where staying in bed seems like the best thing to do. Yet here she is, telling me to get up.

She asked me if I wanted Dim Sum. In my barely wakeful state, I said "no". I simply did not want to go through the effort of getting warmly dressed, driving to a Dim Sum restaurant, parking, unloading, wheeling in, wheeling about, wheeling out, loading, then driving home. I'd already decided we were not going out today, at least not if I had something to say about it.

Katherine disappeared, leaving me to slowly rouse myself. I could hear her clinking and clanking about in the kitchen, pots going here, water running there. I called out to ask what she was doing. She told me if I wanted to know, I would have to get up and see. She knows I cannot resist the curiosity. So I get up, struggling with the M-rail, forcing the transfer, ignoring the chill in my room which filters in from the winter outside.

I arrived in the kitchen to see what she had meant. She didn't want to go out for Dim Sum. Instead she had prepared it here at home, a full Dim Sum lunch with several selections of small goodies to eat. It was wonderful, sitting there just out of bed, smelling and tasting the bits and bites she had steamed up for us to eat. I ate too much. She ate too much. We both know that Dim Sum cannot go back in the fridge. Katherine actually admitted that perhaps she had made a bit too much.

Dim Sum did not survive our attack on the serving tray. It went, fast. I can still work my chop sticks, still feed myself, still eat more than I should. I am now replete, typing what I can while my body is busy digesting the morning's event. She is an amazing lady, doing so much to surprise and enthuse me, doing so much to make life interesting and good. Imagine it; Dim Sum for breakfast, at home. I don't get no better.

Wednesday, 6 January 2016

Frozen Shoulder

My left shoulder has begun to freeze. No, it's not something due to Calgary cold. No, putting on a sweater or moving to a warmer climate will not help. Frozen shoulder, medically known as adhesive capsulitis is a painful and disabling condition where your shoulder becomes increasingly stiff, unable to engage in a full range of motion without substantial pain. The pain is typically constant, getting worse with cold weather. I have that pain.

Frozen shoulder is usually a result of some sort of trauma which limits mobility. Over time a lack of lubricating fluid causes increasing stiffness in the joint. In my case the lack of mobility has nothing to do with trauma; it's ALS. The loss of muscle tone in my arms means that I am not actively engaging in full use of my arms. This loss of use is typified by my inability to reach upwards and the inability to rotate my arms through any sort of extension.

It makes sense that it would be my left arm that would experience this first. It is my left arm which is failing first, and fastest. The loss of muscle tone in my left arm is not just measurable, it's visible. If you were to inspect my arms, my left in particular, you would find flabby skin with withered muscle underneath. The freezing effect also helps explain the constancy of the pain in my left shoulder area. It is a combination of sore muscles and frozen shoulder.

The response to this condition is to add Range of Motion exercises for my arms. These exercises will ensure my shoulder joint remains lubricated, adding flexibility where my muscles are failing. We were going to start them today but the HCA wisely decided that the first time for these new exercises should involve a nurse, just in case something went wrong. I have enough pain in my life. I don't need more.

Range of Motion exercises have been keeping my legs flexible, my hips well lubricated. These exercises for my legs ensure my knees still bend, that my ankles rotate, that my toes straighten out. Actually the toes on my left foot don't straighten out. They are frozen into a permanent curl. We started ROM exercises too late for my left foot. I don't think we are too late for my left shoulder.

Tuesday, 5 January 2016

Why Bother

I'm feeling good today, better than I have in the last few days. I know why. It's because Katherine was with me last night, and this morning. Whenever she is around I feel better. She is a strength in my life, a reason to keep living. She keeps me alive.

The last few days have been tough. More than once I have thought "why bother?" I would say that the single greatest intellectual struggle I have, on a day to day basis, it the struggle with one basic question. Do I want to live like this? Why bother?

There are a great many things which impact my quality of life and my desire to live, not the least of these being the people around me, the people who make my life worth living.Yet, notwithstanding this incredibly positive influence in my life, I struggle on a daily basis, asking myself if what I have is worth living for, if the life I have is worthy of the continuance thereof.

Given the pain, the challenge, the frustration, and ultimately the aloneness of it all, I am compelled to ask myself if it matters if I am here for one week, one month, one year. I wonder if all of this is worth it. Dying is easy; it's what will happen at the end of my life. Living, like this, is hard. It takes so much out of me. So often I want to give up.

Then, Katherine comes along. She sits with me, hugs me, tells me everything will be okay. She nestles against me at night, rises up with me in the morning. She makes coffee and breakfast, brings them into me on a tray, sits beside me and shares this time with me. She gets me going in my day.

It's very easy with a disease like this to fall into a well of self-pity. It takes almost nothing to throw me off keel, to push me over the fine balance line between feeling alive and wishing I was dead. Falling off that balance hits hard, leaving me drowning in my emotions. I need help to get out of that wallow, help to come back to balance.

Katherine does that for me. She is why I bother.

Monday, 4 January 2016

Another Humiliating Start

Home care came today, but I did not do exercises. They were put aside in favour of cleaning up after another one of my humiliating body failure moments. This morning I went to the toilet. When I was done, or at least when I thought I was done, I transferred to my wheelchair. At that moment my body decided to release further contents. After transferring to the shower, I cleaned up my wheelchair.

I had my shower and made my way to the bed to get changed. I asked the HCA to check my rear end to ensure it was clean and tidy. She did. It was. So I got dressed. In the middle of that process, once again my body decided to release further contents. My sheets were soiled. We needed to change the linens. At this point, thoroughly embarrassed by my inability to control my own shit, I asked the HCA to just change the bed linens and we would call it a day.

This failing in the process of ablution has to do with my weakening core muscles. Since I can't fully push out my colon contents, I am having to learn to patiently wait for the process to self-complete. Alas, I am not a patient man. I think I am complete. The rest of me feels complete. Unfortunately now and again, I am incomplete. Embarrassment ensues.

I know that the HCA's are supposed to be trained to handle this kind of situation, even a brand new HCA like I had this morning. That training failed to take hold; she sort of looked at me, dumbfounded that I had shit on my own sheet. I found myself issuing instructions to the HCA as to what to do and how to do it. At the end, I just didn't have the emotional energy to not only guide the cleaning but manage her through the exercise process as well.

It should come as no surprise that I am more than ready to be done with this life. Katherine is the only thing that keeps me hanging on; that and the fact that I am really too chicken to take my own life already. Even so, the level of humiliation, embarrassment, and shame I feel over this completely failing body is enough. I'm sick and tired of being sick and tired.

Sunday, 3 January 2016

I Want To Stop

This blog is not easy for me. It's a tough thing, having something to write each morning, even tougher getting it from brain to keyboard. You would think that someone with so much to talk about would have no trouble coming up with a subject each day. The problem is that the subject is pretty much always me, and I am simply not that interesting anymore. Perhaps I never was.

What started out as catharsis for me has become almost mundane at times. Sharing my life was good when I had a life. These days the biggest accomplishment in my days is putting on pants. Going to the toilet is up there too, but that happens whether I want it to or not. Having something interesting to say becomes increasingly difficult when my biggest interest is sleeping, staying in bed.

It's hard work, with little obvious reward, and even fewer not so obvious rewards. There is no fame, no adulation, no adoring readers. There is no money, no wealth for the written word. It's an unpaid self-assigned responsibility, the only compensation these days being a record of my existence.

I think about that often. When I stop writing, I will be gone from the stage of life, if not dead in reality then most likely dead in spirit. If I write, I live. If I stop, I die. Nowadays the dying part seems increasingly attractive. When I stop, who will notice? Who will care? There are roughly 100 people who follow my writing on an irregular basis. They might notice; some will surely not. There are a couple of dozen people who will definitely notice; I suppose I should feel good about that.

Maybe I should just stop for a few days. The problem is that when I stop it's more than likely I will never start again. That's the way it works with ALS. When you stop doing something, you almost certainly stop for good. There is no coming back. But I really want to stop sometimes, like today.

Saturday, 2 January 2016

I Love Wine

My bathroom smells like a winery. I love it. I love to make wine. I love to serve it to my friends and family. I love to drink it. I love just about everything about winemaking. If I could, I would grow my own grapes, in my very own vineyard. I would hand pick them, carefully selecting only the best clusters, ripe and ready for the press.

Unfortunately my life has not gone this way. It's not necessarily a bad thing. I can still get a decent wine kit from my local vintner store, still smell the power of that first ferment as it bubbles away in my bathroom, stored as it is, under the linen shelves. I can still enjoy the racking, filtering and bottling process, even though I cannot do as much of the work as I did in times past. And I can most certainly still enjoy drinking it.

The biggest problem I have with making my own wine is the cost. Over the last couple of months I have lost more than half of my income thanks to depletion of my savings. I still get my pensions, yet even with this generous government support, I am still substantially less well off than I was only a couple of months back. This loss of income means I am now compelled to consider carefully what I can purchase when it comes to wine kits.

Wine kits come in five grades, at least that's how I see it. The first two are the lowest cost, the kind you can find in your local grocery store. It is my contention that these kits, which range in the $40 to $60 area, don't produce wine so much as they produce a badly flavoured grape juice with a marginal alcohol content somewhere in the 10% level. If I am compelled to buy these kits, I suspect beer will look a lot more attractive.

The kits I prefer to purchase are the next three grades. The lowest of these grades will be a kit with 10L of concentrate to produce 23L of wine, or about 30 bottles. They cost about $100 for a kit, and produce a modest quality wine with an alcohol content of about 14%. These kits, as you can guess by looking at the amount of concentrate, tend to be rather thin on flavour. They are often blends of  a varietal grape from a large region such as an Australian Shiraz or California Merlot. There's more water than grape in them. You can drink it, but it's not the best. Then again, it costs about $3.00 a bottle.

The next step up will typically cost about $150 to $175, depending on the style of wine. These kits usually have 15L or so of concentrate to produce, once again, 30 bottles of wine. The grapes in these kits are still fairly regional but are typically of better quality. The main difference, however, is the amount of concentrate, plus the fact that you get the grape skins in most of these kits, adding to the flavour. More grape than water means a richer, fuller wine. It's the classic scenario of getting what you pay for, ending up with a wine that costs about $5.00 to $6.00 a bottle. It's decent wine, very drinkable, and the kind I buy most often.

Then there are the top of the line kits, the ones with 18L of concentrate right up to straight grape juice. These kits virtually always include the skins. The provenance of the grape is excellent, always down to a specific region, sometimes even to a specific vineyard, always within the specific varietal, or blended with a specific outcome in mind, not just low cost. These kits can cost upwards of $200, giving you a superior quality wine for about $7.00 a bottle. A store bought equivalent might range in the $20 to $30 area.

My challenge is that all of these kits are expensive. Drinking anything alcoholic is expensive, even when it's home made wine. My other challenge is that I have, over the years, become spoiled with respect to taste and quality. There are very few commercial wines that stand up to the quality of what I make at home. So somehow I have to come up with $150 a month so I can have a bottle of wine each day.

My choice is simple; drink less wine or drink cheaper wine. I'm not thrilled with either. I wonder how I would do sitting on the street corner with a tin cup and a scrawled cardboard sign reading "Help a cripple get some wine." Hmmmm. Might work.

Friday, 1 January 2016

Happy New Day

Happy New Year. There's a lot I could say about being happy, and having another year. One of the first is that this date is in no way significant, neither for calendar nor astronomical reasons. It is just an arbitrary day chosen to celebrate the beginning of a new calendar, primarily here in the western world. The date of the New Year has changed throughout history and by location. Even for our dominant western society, the choice of January 1st as New Years Day has only been in place for about 500 years, coming into play in about 1582.

In times gone by, New Years Day has variously been celebrated on March 1st, March 25th, Easter, September 1st, and even December 25th. These dates are all based on the old Julian calendar, as opposed to our supposedly modern Gregorian calendar. Never mind us, the Chinese and most eastern Asian countries celebrate the Lunar New Year, the new moon of the first Lunar month after the winter solstice. Muslims use a lunar new year as well, in a year of only 354 days, so their New Years Day moves about on an annual basis.

All of this is to say that our proclamations of Happy New Year are completely arbitrary. I prefer to thing of every day as the start of a new year, one day at a time. Each morning I get a chance to start again. Given my prognosis for this year, I would prefer to think in terms of weeks, or perhaps months, rather than years. A year is a long time, a long way away. Here I am trapped in a social construct which predicates almost everything on the assumption that a year is a reasonable time frame. Not for me.

Happy New Day. Happy New Week. Perhaps Happy New Month. Each of these is a celebration, at least for me. Each of these is an event, a success of survival. Each of this is a marker, a milestone in my life. Happy New Year is no better, or worse, than any other happy day. I want as many as I can get. I plan on celebrating each of them. I'm happy I am still here. When I am not here, then I will be unhappy... maybe.

How about November 22nd? That's the date of my diagnosis. Perhaps that is my Happy New Year. Every time I pass that date, I will really celebrate. With any luck, this year will see a treatment for ALS. Then it really will be a happy new year.