That's All, Folks

I'm up. I have no real reason to be up. I just am. It seemed about time. There is no need for me to get up, no luggage to pack, no check out time. There is no destination for the day, no need to get going. I have no places to visit, no pictures to take, no mileage goal. There is no hotel awaiting my arrival at the end of the day. I just got up; that's all.

I'm eating at home today. I pulled some lamb shoulder chops out of the freezer last night. There will be no restaurant food today, no menu of items none of which appeals to me, no overpriced wine not even coming close to the wine I make at home, no servers who seem to disappear at the wrong moment yet hover over top asking you how your food is once your mouth is full. There are no line ups, no inappropriate tables, no noisy tables nearby making your conversation impossible. I'll just eat at home today; that's all.

I haven't even put on pants yet. I just seemed like that kind of morning. Of course I will eventually. Sooner or later, either today or tomorrow, I have to do laundry. That way I will have even more pants to choose from tomorrow. I have a dresser full of shirts rather than a half emptied suitcase with just a few to pick from. I  chose a light weight, long sleeved shirt for today; light enough to wear indoors while warm enough should I have to go outside. But I doubt I will go outside today. I have nowhere I need to go. I'll just stay in today; that's all.

Some things are done every day, no matter where I am. Medications are in that group. It doesn't matter where I am, where I am going, what I am doing. It doesn't matter if I am staying at home or wandering the globe. I have to take my medications on approximately the correct schedule. Without those medications, I will likely die too soon. I'm going to do that anyway. I have ALS; that's all.

Happy Either Way

I'm home. Not only am I home, my luggage is unpacked, my gear is put away, and Katherine and I have even had a light supper. We are done with our road trip. Of course being home has its effect on me, as it always does; that ambivalence between the freedom of the open road versus the safety and convenience of being in my own apartment.

Here in the apartment, my bed is right for me. I have a lift to get me there when I am really tired. My toilet is not only the right height and in the right position, it also has the washlet seat so I can easily clean up afterwards. My roll in shower with built in seat is perfectly positioned for me with lots of safety bars near at hand. I can have a glass of wine without having to order it, a bite to eat that is simple and small in proportion. I can watch Netflix on my TV, Canadian sports too.

On the road there is freedom, the sense of normalcy in driving, a sense of power behind the wheel. As Katherine noted today, when I am on the road I have a plan, a purpose, a place to go. When I'm on the road, I have a mission to focus on that keeps my mind off of ALS. When I lose the ability to drive, as surely I must, it will be the greatest loss yet.

At home I spend time with Kate, with my friends, being social. I get to cook, to take care of my life. Of course there is no plan to it, no mission to it. Yet I can be comfortable and safe at home. I can look out my window and see the beauty of life here in Calgary, watch the weather, the birds, the passing parade of life.

On the road there are scenes like the sunset today, a stunning paintbrush sky using every colour of the pallette, clouds rimmed in pink, gold, grey and even black, an evening sky reaching from white in the heavens through baby blue and into deep purple against the earths edge, the sun a slow setting glow over distant horizon of the Rockies, spinning a web of long shadows at each farm and fence along the way. There are things to see on the road.

I am happy to be home. I will be happy to go on another adventure. Either way, I plan to stay as happy as I can.

It's Random, Sort Of.

Why? Why me? A couple of pointless questions I catch myself asking of myself. Of course there is no why. As to the why me, we don't know that either. ALS is a disease where you have to get used to the idea that you will never know why it happens, or why it happened to you in particular. It is a severe test of our ability to live with the randomness of it all, to live without any knowledge of cause and effect.

This is an awesome plight for a human being, to live without cause and effect. We are engineered to find cause and effect, programmed to look for the reason in things, so much so that we find it where none exists. When we cannot find it, we look for mystical reasons, metaphysical reasons. We invented gods to help us with this, to give us an assignment of things for which we have no known cause.

Thunder and lightening are the work of Thor in his chariot crossing the sky. The volcano erupts because the gods are angry and demand a sacrifice. The storm comes because of the sea gods, the rain comes because of the rain gods, we live and die because it is the will of the gods. We even went so far as to simplify this process, creating one single god who was responsible for everything, who is responsible for everything.

For some, our need for this god to explain things away is still so great that they will ignore the facts, the knowledge of science, the reality of things around them. They are so grounded in their willingness to not know, their fear that they might not have an answer, that they turn to this god as an explanation for all things, including ALS.

I know this blog entry may offend some of my friends of faith. I know that their belief in God, or Allah, or Yaweh sustains them. I know they find comfort in prayer and belief. Oddly enough, so do I, within myself, find comfort in my own thoughts and prayers. Yet I am also tremendously comfortable with knowing that I don't know, and probably will never know. I am okay with the randomness of life. I seek no patterns where they do not exist, no reasons which are not real.

I don't need god to explain away my ALS. Why did I get it? We don't know yet. We may know one day, but not any day soon, and certainly not soon enough to help me. That's perfectly acceptable to me. In fact it only seems random at this time. Statistically, about 5 in 100,000 people will get ALS. That's not random; that's a statistic, almost a fact. Now all we have to do is fine tune that number.

Salt Lake City

Salt Lake City. Home of Mormons. The sky is grey here, a low, flat cloud covering, pushing up against the mountain edge of this winter city. The grass is a light golden yellow. On the trees there are a few quivering leaves still clinging to branches, waiting for that fiercest of winter winds to shake them loose; they too share that golden hue, only this time a darker, deeper edge. There are bits of green still here, the odd shoot of grass, even a few leaves on a bush here and there. The evergreens are here, still showing their bright needles.

We are truly headed home now. Our day includes a visit to the Mormon Temple in downtown Salt Lake City. After that we will head up the I-15, north towards Idaho. There is one stop planned along the way, a visit to Antelope Island, an island that once was an island, sitting in the midst of the Great Salt Lake. The salt water is receding. Now this island is more of a large peninsula from the south of the lake, attached to the rest of the land by a large isthmus of salt flats.

Once done with our obligatory view at this inland ocean of salt, we will head back onto the highway, making the four hour push to Idaho Falls. I remember Idaho Falls; it's where David left the luggage sitting behind the truck as we headed for Yellowstone while on our road trip last year. You see, I've done this trip before. This is a new adventure for me, but not a new road.

I think that's why I fight to keep going. My brother Adam once commented that people in my situation keep going by finding that one good thing in every day. Truth be told, there are days with many good things, and days with few good things. Yet in every day there is always something, somehow, somewhere. You just have to find it.

I already know what today's thing will be. Katherine will get to see the Mormon Tabernacle. So will I. Yes, even though I have been here several times, this will be my first visit to Temple Square. It's never really interested me that much. Katherine is interested, so we will go. She will jump out of the truck, wander the square, take pictures. I will sit, relax, get myself ready for the two hours to Antelope Lake and the four hours to Idaho Falls. And there I will remind myself not to forget the luggage in the parking lot.

Transfers Are Not Easy

Some time ago, my friend Mike opined that it would more likely be the loss of ability to get into my truck which ended my driving life, rather than the loss of the ability to drive. It is becoming increasingly apparent that he is right about this, as he is about so many other things surrounding my situation. I wish I could thank him for being right, but alas, I cannot. It's one of the things I have learned in life; nobody thanks you for being right, especially in a bad situation.

My arms are becoming increasingly weaker. It's not that there is a catastrophic change, nor even some tipping point. It's that things are getting more and more difficult, things like getting into my truck. These days it's a 50/50 thing as to whether or not I can do it alone. I need Katherine to give me that final lift onto the seat half the time. Even when I do not, it's not as if I lift and transfer any more. My 240 pound bulk ensures that. These days I more drag my sorry carcass from surface to surface.

When I do this with my truck lift seat, I am now compelled to get halfway started, then use the steering wheel as a pulling point to yard myself out of my wheelchair and onto the lift seat. In that process, I can feel the dead muscles in my ass fold over the bones of my hip and legs, making a lump along the way. Once I am on the seat, I adjust so the muscles unfold. It's an odd feeling.

Other transfers are getting tough. Once again, I use the word transfer lightly. It's no longer a lift and go, but a slide and shift. Getting into bed absolutely requires a transfer board. Getting on and off the toilet has become an all to real adventure in body shifting and pulling. The worst part of all of this is my damnable wheelchair cushion. It forever rolls up underneath me, becoming a blockade to my efforts, the lump forcing me to pull even harder.

I said there wasn't a tipping point. I may be wrong about that. There may be something, some event, some particular transfer which goes horribly awry, perhaps one where I slide off of the toilet and the wheelchair moves, one where I end up on the floor, yelling for help and cursing my inability. That may be the event which truly proves I am done. That may be the insult which tells me it's over.

Heading Home, Sort Of

It is raining here in Sacramento. Notwithstanding the song lyrics, it does rain in California, just not a lot. In Sacramento, for example, there are only about 60 days in the year where there is measurable precipitation, most of those days happening in the late fall and winter. That's right now. Perhaps I should set myself up as a rainmaker. California could use me. This dry state has been struggling with a drought for years. It looks like it will go on.

The same thing happened to me when I was in Dubai a few years back. I arrived one of their rare rain days. There it rains perhaps a few days out of each year, although that has increased to perhaps 6 or 7 in the last decade. It was humourous to read the paper the next day and see the massive spike in car accidents; they don't know how to drive in the rain, just like Vancouverites don't know how to drive in the snow.

Today we will experience the full panoply of weather possibilities. It's raining here in Sacramento, It will be snowing up in the Donner Pass when we get there. Then, once past the mountains, we will be into the Nevada desert, with clouds and possible light showers. It will be cold up there too; winter is here in the high mountain areas. The driving will be interesting, as this is the first snow of the season for Donner Pass. I will be fine; with my truck I have driven in every imaginable weather condition, from massive rainstorms to ice storms to wind storms, even through fire storms. We will make it.

Now that we are on the homeward stretch, the driving will be different. On our way down here, I made it a point to avoid freeways as much as possible, to take the scenic route where and when I could. Now it's high speed all the way. Yesterday we were on I-80 headed east. Today and tomorrow will be the same. Then, at Salt Lake City, we will take I-15 and head north, up through Utah, Idaho and Montana to Coutts, AB, and then on to Calgary.

We still have about five days to go, four days of driving with an optional rest day in there. I was thinking of taking a day in Salt Lake City, but then again, what is there to do? I've seen the tabernacle. I will show it to Katherine. We may head home a day early. Who knows? It's a road trip. The only sure thing is we have to be home by Friday. We can do that.

Seeing The Difference

I was thinking of writing some more about the slow loss of strength in my arms, mostly only visible to me. I was going talk about what it's like to see the incrementalism, to feel the weakness slowly, inexorably increase. My plan was to detail some of the measure of loss, some of the things I see which others don't see. I had thought I would start with the beginning, where a great many people thought is was my imagination, then carry it through to today, where some still wonder but many can see.

Instead, I'm going to talk about Sacramento. I love going to Sacramento, especially Old Sacramento. No trip to California would be complete without a stop here. I started going to Old Sac way back before I had kids. My ex-wife bought one of her most treasured possessions there, a creamer shaped like a cow. The milk comes out of the cow's mouth. Old Sacramento is a rebuild of a true "western" town, with wooden sidewalks and places to tie up your horse. It has immense charm, plus some great restaurants and watering holes.

Getting to Sacramento from San Francisco is another treat in the journey. There are dozens of different ways to get there, most making good use of the freeway system here in the San Francisco basin. You can head across the Golden Gate and up to San Quentin, just to check out the prison. You can head over the Bay Bridge, then take either the I-80 direct or take the 680 across Suisun Bay to check out the US Navy graveyard. Most others are subjuncts of these routes. The beauty of all of them is that they all take about the same amount of time. It just depends on what you want to see.

Today I plan on taking the 680 across Suisun Bay, so I can check out the Navy graveyard. Over the last decade the navy has been slowly removing and scrapping ships they had classed as "reserve". It appears that even organizations as large as the US Navy like to keep old stuff around "just in case". About a decade ago, when I was here with my kids, we went that way and I was impressed with the number of ships. This time there will be substantially less. I want to see the difference.

You see, just like my arms, I want to see the difference. And just like my arms, I will see it more clearly because I have an original marker point. There were once many ships. I was once very strong. Now there are few ships. Now I am weak. It's all about seeing the difference.