Tuesday, 30 June 2015

On The Dempster Highway

We've managed to make it to Eagle Plains, YT, about half way to Inuvik along the Dempster Highway. It's a tough highway, about 750 km, or 460 miles, of gravel road. While it's well kept, it is still a dirt and rock surfaced highway, with all the jouncing and bouncing you might expect. In some ways, this highway is pretty amazing, pushing its way as it does through the boreal forest, taiga and tundra, headed north through a land as tough as the residents themselves must be.

The Dempster Highway is also amazing from an engineering standpoint. The gravel surface can only be repaired in the short summer months, so there is always work going on along the route. The road runs over the permafrost, so to protect is the road is raised up on a gravel be about 4 - 8 foot high. The road pad keeps the permafrost from melting underneath, and thus keeps the road from collapsing into the muskeg. It's also a busy road, with plenty of traffic from tourism in the summer, and winter too!

The most interesting part of this drive is where the road runs. Most highways in Canada make their way across and through mountain ranges by utilizing river valleys. When you drive on them, you are forever looking up, your view most often obscured by trees. This highway does just the opposite, following the ridge lines from on low mountain to the next, transiting the Ogilvie range and the Richardson range.

From the tops of these hills and ridges, you get amazing views of the vast sweep of the near Arctic. The mountains themselves are hard granite, but low and rounded. These are definitely not the Rockies. There is not, and never was, enough precipitation up here to form glaciers, The mountains here were primarily formed by the slower and much less dramatic action of the permafrost.

The drive itself was relatively uneventful, with the notable exception of the wolf we saw about halfway through the day. Seeing a wolf on the road is tremendously unusual. Wolves don't like people, unless, of course, it's for a bit of dinner. Mostly they stay away from roads and traffic. This fellow was alone, or so I assume, as we so no signs of other pack members. On the other hand, you never know. The bush here could hide a thousand wolves and you would never see them. There was no other large wildlife, only a few hurried rabbits and one bored ptarmigan beside the road.

All in all, it was a great day on the one of the most unique drives in the world. What's really cool is that this is my second time along this way, something I never thought would happen again.

Monday, 29 June 2015

Relaxing Before The Dempster

I'm sitting here on the deck of the Westmark Hotel in Dawson City, in the Yukon Territory, whose official name, by the way, is just "Yukon". The sun is shining, as it has for the last few weeks, nearly 24 hours a day. Even when the sun theoretically sets, the sky remains bright as the sun is simply behind the horizon a few degrees. The air is cooler today, only about 22° Celsius, although the sky is clear, nearly cloudless for the first time in a few days.

The locals are loving these cooler temperatures and the recent rainfall. The forest fires came early this season; I could smell the smoke in the air as we got closer to Dawson. They have been bad enough that the territorial government put out a call for drivers and equipment operators to aid in the battle against the flames. It will get warmer; it has to in a land where the sun never sets.

It almost feels like I am sitting on a deck in the south, perhaps Florida, were it not for the absence of humidity. The air is light and easy, there is a soft breeze barely riffling through the trees, the sound of cars on the dirt roads of the town clear, unmuffled by moisture in the air. I could be sitting on the outer deck, in the sunshine, next to the small stream running through the hotel gardens, a setting merely adapted for hotel use rather than created by the hotel construction crew. The deck edges the water, the creek itself slowly running down and into the Yukon River just a few blocks away.

This is the ultimate kind of leisure and pleasure. Katherine is off exploring the town, looking for souvenirs, postcards, or whatever she can find. She has her small camera with her, ready to take the simple shots that this town presents with almost every turn of your head. This is a quirky kind of place, a mish-mash of old and new, maintained and derelict, repaired and broken. The land defines the boundaries here, the town limited by the river and the surrounding hills.

And so I relax, readying myself for tomorrow, for the run up the Dempster Highway towards Inuvik. There is a sign at this end of the highway warning that emergency services are not available on the Dempster. It's the north; if you want to go there, it's your business. If you want the safety of Dawson and the paved roads, don't go.

I will go.

Sunday, 28 June 2015

Arm Flopping

I seem to have developed a rather difficult new behaviour with my arms. It seems they are developing a mind of their own, particularly when I sleep. I know that a great many people flail their arms about in their sleep, some so bad that they cannot sleep with a partner. I know that all of this at some point flail in our sleep. What's happening to me these days is a modest extension of both.

There are actually two things that happen. First of all, I find that my fingers will often engage in some sort of "counting" or "scratching" activity. I find that if I am dreaming, my fingers will replicate an action in the dream. If I am not aware of dreaming, just on the edge of wakefulness, they get into some sort of scratching motion, especially if they are touching something, or someone. It's not that this is all that weird. I am dreaming and replicating the dream. Or something like that. It's just that I cannot ever recall this kind of activity in my hands or fingers.

The other new thing is the tendency for my arms to flop when I move them, and sometimes when I don't intend to move them. As said, we all move our arms in our sleep. I do, you do. What's different here is the loss of control in the latter part of a movement. I simply don't know where they are going to end up! The other night, for example, my arm near the edge of the bed flopped out and knocked over the water glass on my night table. That kind of uncontrolled motion in my arms will happen two or three times a night these days, a completely new situation for me.

Where it really gets exciting is when the two things combine to produce unexpected results. The other day my arm flopped with perfect aim to hit Katherine in the face, my fingers nearly scratching her in the eye. Last night my arm flopped over to just barely touch Katherine in the back, whereupon my fingers started scratching her between the shoulders! Not all the stories are this interesting; sometimes my arm just flops over, the slap of it hitting my body enough to awaken me. I wonder how my arm got there, put it back where it belongs, and try to get back to sleep.

It's a strange new world, another thing to get used to. I suspect it will go away as my arms weaken further. I don't know; I haven't been here before.

Saturday, 27 June 2015

I Have Limitations; Limits Too

I'm sitting in bed, lapdesk on my lap, laptop on the lapdesk, coffee at hand, without an idea in my mind. Katherine is urging me to write my blog; she wants to get out and doesn't like to go without me. I am the hold up, the road block. She's good about it, patient, having been up for a couple of hours waiting, having made me coffee and served it to me in bed, having brought me my laptop and the lapdesk. She's ready and I haven't even started.

It's that way a lot. She is always up before me, always with more energy than me, always ready sooner, getting more done. It's a reminder to me of how far down this road I have gone, the combination of lazy and incapable delivering me to a place where I simply cannot express that kind of morning energy. I am slow to start, early to finish, and doubtful during the race.

On the plus side, I have learned to accept this change, even enjoy it. To spend time doing nothing, to spend time resting, letting my body recover, not from any particular stress but simply from the damage of living with ALS. My body is the victim here; it needs both time and space to rest and recover. I cannot change this; I must make of it what I can.

I will get up today, soon. Katherine and I will wander about Whitehorse, checking out the MacBride Museum, one of the major tourist attractions here. We'll likely make our way back to the SS Klondike, an old paddle wheeler which used to ply its way up and down the Yukon River. After a few hours I will wear out, even though she will be doing much of the pushing. It's what will happen; when it does we will come back to our hotel, perhaps have a beer in the saloon, and call it a day. Dinner will happen, but how and when may be a mystery even then.

Perhaps the biggest lesson I have learned from ALS, and there have been lots of them, is to respect my limitations, to defend my inability. I did not ask for this illness; I got it. Now that I have it, it is making continual changes to me. There are so many things which are different, and I must accept that. I tire easily. I cannot do long days. I have limited energy. I am physically weak. There's a lot more I must accept. I have limitations.

Friday, 26 June 2015

It Ain't All That Much

I can travel alone; I recently did a three week road trip to San Francisco and back all on my own. I can load and unload luggage, get my M-Rail, get into and out of the shower, pack and unpack. I can do all that I have to do to get from place to place. It's a whole lot better, though, when someone is with me, especially Katherine.

The road trips of the last few years have seen me with a few different people; Mike, David, Cheryl, Emma, Brian, Ricky. Katherine is well established on the list of people I like to travel with. She does so much to make the trip easier and more fun. I am really enjoying her company, and truly appreciate her help.

I have to be careful, though, to remember that it is not all about me. I failed at that yesterday. When we arrived at the hotel I immediately pestered her for the Internet code. She got angry with me and said "Why is that so important, that you need to do it the minute you get into the hotel room? You don't have to tell everybody right away where we are!"

She is, of course, right. I am addicted to the online universe; connecting immediately seems like the only thing to do. She is right in that I should at least settle in for a bit, relax for a bit, maybe even have a glass of wine, pour one for her, and sit for a bit, before running to my computer. What she really wants is for me, and her, to relax and enjoy the moment before plugging into the rest of the world.

As we settled, as her anger dissipated, we went for dinner, she pushing me the hill to the restaurant. She did this without complaint, even though she was still angry with me. After dinner, she was not so angry, but still irritated at my priorities. When it was all finally over, she helped me with my shower and helped me to deal with a personal care problem.

This morning we are all back to normal. she her laughing self and me attached to the internet. Still, while I write she is loading the truck. Tonight after the drive, she will do most of the unloading. She will help me with clothing and luggage, shower seat and M-rail. I mostly get in the way when I try to help her; she is so fast and focused. But I am going to try to be more helpful. It's important that I do what I can, even if it ain't all that much.

Thursday, 25 June 2015

Morning at Muncho Lake

We are far enough north that the Internet is problematic and cell coverage is non-existent. It will get better, perhaps, in Whitehorse although Dawson and Inuvik are doubtful. That’s the way it is up here, away from the large, or even small, cities and towns. Life is what you make of it up here, and that can mean no Internet from time to time. Blog entries may be intermittent, depending on service.

I awoke this morning to the sounds of a woodpecker hammering away at a tree nearby. I couldn’t tell the time, as sunrise here happens while I am still fast asleep. By 6:00 AM, the sky is already a brilliant blue. Here at the Northern Rockies Lodge, fishing is a passion and pastime, meaning the fly-in/fly-out trips start early, most likely around 5:00 AM. Once again, I am unsure. All I know is that it was past sunrise when I heard the first bush plane take off.

The mountains here are sharp and short, their steep slopes covered in stiff, short trees, like the quills of a porcupine, thick and dangerous looking. There is plenty of wildlife here, bear, deer, moose, bison, elk, and any number of smaller creatures. Yesterday we even saw a marmot sitting on one of the roadside barricades, espying his territory, perhaps seeking the warmth of the sun. Today we expect to see bison, and perhaps a bear or two. Perhaps not. These are wild creatures, their pathways chosen by whim and the presence of easy food.

We are also going to visit the Liard Hot Springs. This is a non-commercial hot springs with limited development and no services. They are in the middle of the Liard River Provincial Park, and the BC government has been kind enough to emplant a changing room and boardwalk through the swamp. The hotsprings themselves are in mostly natural pools, with only one embankment to create separation between the upper and lower, or hotter and cooler pools. I cannot go in; alas there is no wheelchair ramp or access. I can, however, make my way to the side of the hot pools and encourage Katherine.

It may be simple to see that I love the north. I love its wilderness, its unpredictability, its complete disregard for the pulse and passing of modern man. The land has been as it is for thousands of years, in spite of our massive efforts to destroy in search of wealth. Mining, logging, oil; all of these are here yet the landscape dwarfs even the largest of these efforts. This is nature writ large; I just hope we don’t get so greed that we screw it up completely. We, humanity, needs this wild country. It is all that reminds us of how small we really are.

Wednesday, 24 June 2015

That Which I Cannot Change

We are in Fort Nelson today, well towards the land of the midnight sun. The sun set here last night at 10:26 PM and rose again at 4:00 AM. Between sunset and sunrise, there is no real darkness, only a deepening twilight until the sun breaks the eastern horizon in the morning. The daylight sun does not cross the sky, but rather prescribes a semi-circle through the sky, rising in the northeast, moving to the south during the day, and setting in the northwest at night.

The irony in all of this is in the Aurora Borealis. A powerful sunstorm over the last few days has charged the northern sky, making the northern lights visible all over Canada, except, of course, here in the north where the sun makes the sky too bright to see the powerful interaction between the sun's ejection and the earth's magnetic field. This is, perhaps, one of those times when life just works this way.

I don't really mind; nor, apparently, does Katherine. The best time to see the Northern Lights is around 2:00 AM. When we are on the road, I am generally in bed by 10:00 or 11:00 PM, so it wouldn't really matter; getting sleep is important when I have to drive the next day. If I were at home it might be different; 2:00 AM is not in the least unusual for me there. Katherine often wakes up in the middle of the night yet she seems fairly unaffected by missing the opportunity to see the stellar light show.

In many ways it is nice to be so unbothered by this kind of irony. It happens a lot to me, where things that would work for any other reason don't seem to work any more. I just don't get upset that much. For example, this morning I woke up and Katherine had been kind enough to get me some coffee and breakfast. As I slid up the bed into a sitting position, the sheets grabbed my underwear, sliding them down as I slid up. So I ate breakfast with an uncovered posterior. Oh well. No worries. I had a lovely breakfast in bed.

This kind of unaffected attitude is new to me. I would not say I am a lot more mellow than I was in the past, I've just learned not to get so upset about things I cannot control. I can't do anything about the night light here; in fact that is the whole reason behind this trip, to see the midnight sun. I can't be too bothered about underwear position. It if really bugs me I can fix it. I seem to have learned that there is no point in getting upset about that which you cannot change, and changing when I need new underwear.

Tuesday, 23 June 2015

Apparently I Am Self-Centered

Last night, in the midst of a fairly intense conversation about life and people, Katherine told me she thought I was self-centered. The instant this came out of her all kinds of red flags went up for me. This kind of assessment has often been linked with some sort of moral judgement and claims that I must "work on this" if I wish to become a good person.

Katherine is not the first to make this observation. Cheryl made the same observation last year, along with letting me know that I was also a bit shallow. And Bobbi made a similar observation a couple of years back, along with telling me I was needy. It's interesting to me that the women in my life make these observations, and none of them made in anger or as part of an argument. It's also interesting that all three of these women care greatly for me, even love me, notwithstanding these fairly blatant character flaws.

For so much of my life this kind of observation has been used as a tool to make me feel guilty, like I was a failure as a husband, as a father, as a friend. Last night it was different. Katherine made a point of saying that not only was it not a bad thing, nor did it make me a bad person, and that self-centered and selfish are completely different things, that I am in no way selfish. I felt moderately better, but my flags were still up.

The comments from Cheryl and Bobbi were actually couched in similar language, that these parts of my personality were just that, parts of my personality, a whole, complete personality which includes things like helpfulness, kindness, caring, loving, giving, and, believe it not, even a degree of wisdom, the kind that comes with age and cruel experience. I trust these women, and their assessments. I trust them because they are not judgments against me, simply observations about me.

Katherine even went a further step last night, reminding me that all of us are self-centered; it's a core part of the human experience, to see the world from our own point of view. I am, perhaps, just a bit less skilled in putting myself aside, a bit less able to get myself out of the picture. She also said, however, that life might be more enjoyable for me if I could see that through a bit, become more skilled at taking myself out of things. I suspect she is right; as my friend Mike says often, "It's not all about you, Richard."

What I find most fascinating and comforting is that people all around me still love me, still care for me, still want to be with me, in spite of this apparently abysmal character flaw. Perhaps I am not all that bad after all. Perhaps self-centered is just one thing, one of the many things in my life. Perhaps I really am a decent person, even with this. Just perhaps, I might be a worthwhile human being. After all, they forgive me this, and so much else.

Monday, 22 June 2015

On The Cowboy Trail

It was a good day yesterday. Not only did my daughter give birth to a grandson for me, but I managed to escape the prison that is my apartment without the elevator. We are on the road again, our goal this time being Inuvik and Alaska. Katherine has never seen the north, nor the midnight sun. It will be an adventure once again!

Our path yesterday took us west out of Calgary and up Alberta Highway 22, also known as the Cowboy Trail. The trail stretches from the Crow's Nest Highway to the south all the way to Mayerthorpe, Alberta in the north. As the name implies, it slices and curves its way through ranch and farmlands for the full length.

From the Crow's Nest north, the highway is one long ribbon, winding its way through the Porcupine hills, along the eastern edge of the Rockie Mountains. These great peaks are visible beside you for most of the way. Then, as it nears Calgary, the texture of the highway changes, from a swooping, curve through bare foothills it comes to a sudden stop at Highway 22X, the crossroad into Calgary. At this junction the Cowboy Trail assumes its new character, a slice and dice of long straight sections that run for many miles, each interrupted by a solid jog westward to keep the trail in the foothills instead of veering off into prairie.

The terrain itself remains hilly, but there are trees in the northern section, especially once you get past Cochrane and Cremona. Each of the jogs at the end of a straight stretch takes you through a small town, places like Sundre, Caroline, Rocky Mountain House, and Drayton Valley. These jogs cut into the forest, those forests becoming thicker and more prevalent the further north you go. Oh, there are still plenty of farms and ranches, oil works too, but the forests become the dominant feature as you move towards the end of the trail.

Mayerthorpe, at the top end of the trail, is the site of one of Canada's RCMP tragedies, a place where four Mounties were senselessly murdered by an angry man with a rifle and plenty of ammunition. The town hosts a memorial to these Fallen Four. We took the time to visit, and to remember these men, and the other men and women who have died serving their communities.

From Mayerthorpe it's a short jog down Highway 43 to Whitecourt, another town focused around logging, oil, and farming. It's where we ended our day. Today we are onward to Dawson Creek, BC, the start of the Alaska Highway.

Sunday, 21 June 2015

Up Late At Night

I had an exhaustion day yesterday. They happen. These are the days when it is almost impossible for me to get up, to get out of bed. These are the days when I would normally just sleep, for as long as I could. These are the days when my up time rarely exceeds a few hours.

Yesterday was a bit of a tough one for resting. I had to get ready for our road trip. We are heading out today, seeking another opportunity for me to escape the capture of my damnable broken elevator. The company doing the work tells me it should be ready to go sometime within the next couple of weeks. Apparently all that remains is some minor work and then the city inspection. It's the inspection which might be the hold-up. It takes time to arrange.

It was near noon when I got up yesterday. By 5:00 PM I was ready to go back to bed, so I did. I awoke at 9:30 in the evening and began to pack. By 11:00 PM I was once again ready for bed. The downside of days like this is that it makes it hard to get to sleep at night. Fortunately there was a plus side to this. I was still awake at 2:30 AM when my daughter texted me with the news of the arrival of her newest child, my grandson.

My anthropological task is complete, although my patrilineal one remains. I am not a fan of primogeniture, but I must admit to wanting a grandson who will bear my name. Nonetheless, I have progeny. They have progeny. The species, or at least my genetic component of the species, will continue. That makes it easier for me to deal with leaving my life early. I will continue on in my children, and in their children.

I won't see this new grandchild for about a month. When I go to Vancouver, Meaghan must come to visit me at my Mom's, as she lives in her mother's house, a place where I can not go thanks to the combination of divorce and stairs. That's okay; after a month things will have settled down a bit. There may be a routine. My daughter's family will have patterns by then. That's a good thing, and I can wait just a bit.

Saturday, 20 June 2015

Good Days

The other day one of my young friends asked me if I "ever had good days". I looked her in the eyes and said "No. Not really." This does not mean that my days are all bad. It means that I rarely have a day where it starts well, goes well, and ends well. That would be a good day. Nor does it mean there are not good parts to many of my days. In almost every day there is some joy, some happiness, some contentment; these are precious moments of light in an otherwise dark existence.

Let's start with mornings. I wake up slowly, my body taking far longer than my mind to reach a point where it is ready to function. Pretty much every morning I wake up with low grade pain in my arms, a feeling unsteadiness throughout my body, a desire to stay horizontal rather than fighting gravity with dying muscles in order to sit up.

Once I do finally sit up, there are clothes to argue with. I fling my dead legs up on the bed and fight on my compression socks. Since my legs don't work, I am compelled to twist and gyrate to get my underwear on, doing the same to get pants on. After finally sliding a shirt on, I am ready to face the transfer to my wheelchair. All of this, of course, assumes no bathroom duty nor shower nor Home Care Aide doing Range of Motion Exercises.

The start of every day is hard. Then, after come what may during my usual day, the end is just as difficult, the only reward of that struggle being sleep. mostly. On many nights sleep is slow in coming. My legs need to be moved repeatedly so I can get comfortable. Finally, in frustration, I will take a Zopiclone, a pill that puts me to sleep but ensures my brain is as slow as my body the next morning.

This is not to say there are not good things in my day. I live for those moments, sometimes even hours, when I can forget this disease. Writing my blog, cooking a nice meal, enjoying a glass or two of wine, driving my truck, spending time with Katherine, Kate, and all my friends; these are places I find happiness. When these happen, my days are not all bad.

Friday, 19 June 2015

I'm Still Upset

I am still feeling the weight of the comment by the fireman Wednesday evening. "We are an emergency service." Here I am dying from one of the worst diseases known to mankind, a terminal illness virtually without exception. Even the dreaded Ebola virus has roughly a 30% survival rate. Only a few cancers kill the way ALS kills, but it is not an emergency.

Certainly the situation was not an emergency; I even said that when I called the non-emergency dispatch number. Yet here I am, dying slowly and certainly, with no treatment or cure, and it is not an emergency. It's not an emergency because it is a slow killer. It is not an emergency because there is nothing the medical community can do. It is not an emergency because it takes its toll over months and years, not hours and days.

If I had a terminal gunshot wound, it would be an emergency. If I was having a heart attack, it would be an emergency. If I was bleeding to death, it would be an emergency. Dying from ALS is not an emergency.

All I want to do is live as much as I can before I can live no more. All I wanted at that moment was help; help to get up to my apartment, help to feel like this slow and brutal death wasn't the only thing in my life, help to believe that I am more than ALS. The irritation and annoyance in his statement pummeled my spirit, battering me further into depression and helplessness.

His comment touched a very raw nerve. Saving my life is not an emergency. It's not an emergency because I am dying slowly, one little piece at a time. It's not an emergency because there is nothing to be done. I'm doing my best to understand that he did not intentionally touch that nerve, that once he was able to digest what I was telling him he did his best, that I may be overly sensitive in this area. I am trying really hard to deal with the fact that it's not all about me. Unfortunately I am failing.

I get up each morning knowing that I am less than I was yesterday. I go through my day wondering what part of me will fail next. At the end of each day, I perpetually want to give it all up. It takes very little to hit a nerve with me these days. They all still work. It's finding a working motor neuron that presents the real challenge. And there isn't a single fucking thing I can do about that.

Thursday, 18 June 2015

I Gave Up A Bit This Morning

PALS talk, and write, a lot about never giving up. You see things like #NEGU for Never Ever Give Up, or slogans like "No White Flags". The truth is that with ALS, you do give up, only it's a little bit at a time, just like the disease. You give up on things which are just too difficult to continue, where your strength and abilities are simply stretched too far. You don't give up because you want to; you give up because you have no other choice.

There are times, however, when you really do give up, giving in to the circumstances and challenges of your disease. You stop doing things because they are just too awkward or challenging. You skip social engagements because you are just too tired, or because there are stairs in the way, or because you no longer have the money for social stuff. You have to make tough choices on where to expend your limited resources.

Last night I had to call the fire department once again to get into my building. Instead of my local firehall, where the crews pretty much have all had a turn, it was a team from a different firehall, lead by a fellow who really had no idea what was up. His opening comments to me after I explained that I needed help getting upstairs were, "We shouldn't be doing this. We are an emergency service." I went through the explanation of the situation again, acknowledge his concern, and pointed out that it was the very fire department dispatch which encouraged me to call for help. "The other crew", I said, "has told me repeatedly that this is their job and I should call."

After we got going, he settled down. After a bit more encouragement on my part, they actually started having fun with the stair walker. At the end, the fellow agreed that it was a good call, and interesting too. Unfortunately the emotional damage to me was done.

This morning I had an appointment for a compression sock fitting. I was to be there at 11:15 AM. I needed to call the fire department to help me get downstairs. I did not want to make that call; I did not make the call. I cancelled my appointment. I will deal with it after the elevator is fixed. In reality, I gave up. This whole thing is just too much for me to deal with. I flew a white flag this morning.

Wednesday, 17 June 2015

A Friend In Deed

I've learned a lot about friendship over the last couple of years. Having ALS, needing the support of friends, depending on the kindness of those around me; these things have been very educational. In this learning process, I've often reflected on the old saying that "a friend in need is a friend indeed." It's an interesting turn of words; I love a good use of phrasing and words. The idea that false friends will fail you but true friends are reliable is as old as mankind.

"A friend in need." You can read that two ways; a friend when I am in need, or a friend who is in need calling out for help and trusting that I will be there. I have been in need greatly over the last couple of years. The group of people who've stood beside me, helped me when I called, quite literally carrying me at times; these people are my friends, these people are the ones who I trust to be there. At the same time, I know that each of these people would feel safe in calling me, trusting me to do whatever I could to help them in their time of need, trusting me to listen, to share their burdens with them in whatever way I can.

What amazes me, on a constant basis, is how this group of people will forgive me, and how I will forgive them. They take me as I am, warts, loudness, indiscretions and all. And, to be fair, I do the same with them, although I truly believe they have the tougher side of the bargain. After all, how many times have they called me to ask me to carry them up their stairs? How many times have they asked me to run over to the store and pick up groceries for them? How many of them have needed help getting onto a bed or off of a toilet?

It's not easy being friends with someone who has ALS. First of all, the progressive nature of this illness means I am less and less able to be a friend indeed. As my needs increase, I simply cannot do what I once could do. Sure, they can still borrow my truck, but I can't help them move. Sure, they can still come for parties and dinners, but I no longer do the cooking. Secondly, I struggle with my emotions more and more as I become less and less of what I once was. That surely comes out; it is more than visible.

My friends, my "friends indeed" are also my "friends in deed." They act on that word "friend", giving it meaning and life. I feel that they love me, that they truly care, that they will be there for me, that they will forgive my failings. I just wish I could return that friendship fully.

Tuesday, 16 June 2015

Guest Blogger: Sarah Coglianese - Three Nights

Over the course of the last couple of years, I have met a few PALS who are mothers with small children. These women amaze me with their powerful will to live, to see their babies grow, to ensure their precious lives are as full of Mom as is humanly possible. Some have passed, others continue to be here, fighting, making a difference.

One of these women is Sarah Coglianese. She is one of these incredible women, filled with a passion to live for her daughter, for as long as she can be here. She wrote an entry in her blog, Speed4Sarah, the other day and it touched me so much I have to share it with you all here. These are her words; they speak for themselves.

Wednesday: We went to the emergency room because every time I coughed, I ended up choking and it was freaking me out. I couldn’t seem to get the cough out, only push it back where it came from and make myself feel even worse. It was a little like early labor in childbirth; I ignored it for as long as I could until it was clearly time to seek professional help.

Rob was on a work retreat, so my sister drove me to the ER, with Scarlett in the backseat running a constant commentary, and driving me nuts. I was concentrating so hard on breathing. When we got to the hospital, I went ahead, while Liz handed Scarlett off to her Uncle Rob. The ER was half-full when I rolled in, with one person ahead of me at the window. I felt awful. I knew I had to cough, but the prospect had become terrifying, like filling my throat with glue and then trying to breathe around it.

A Dr. walked into the room. “Mrs Copeland?” he said, looking around. I caught his eye and made the universal sign for choking. “Mrs. Copeland?” he said again, this time to me. I shook my head, indicating that I was having an emergency. “Oh,” he said, and walked away. “You’re okay.”

When Liz walked in, she dealt with a ridiculous check-in process, all the while trying to contain her anger as she kept repeating my sister has ALS and she can’t breathe.

They let us in and took my vitals, but they didn’t seem to know what to do with someone like me. We waited. I did all the breathing exercises I’ve ever learned, so substandard when your lungs and diaphragm are operating at diminished capacity. I tried to meditate, again feeling like I was going through the pain of childbirth, except this time hoping the “baby” would come shooting out of my mouth on one hot exhale.

I was in a lot of distress by that time, and I knew I just needed the strength to cough. Any ALS clinic knows what a cough assist machine is, but an ER does not, and given my heart rate and the grand choking displays I was performing, they decided to intubate me, meaning stick a vent down my throat. First they cut off my dress and bra, and I had a moment of sorrow, having just announced that morning that it was my favorite dress. But the truth is I badly wanted to be unconscious. Cut off my dress, I thought. Cut out one of my stubborn, hardened lungs while you’re at it.

When I woke up, it was too soon. I could hear people talking next to my bed, still right there in the ER. I tried to open my eyes and move my hands, but everything was paralyzed. I had no way of letting them know I was awake. I eventually succeeded in widening my eyes enough to get my sister’s attention.

“If her eyes are moving, is she awake?” I heard her ask. The answer: No, she’s definitely under. I worked harder until my eyes were open and blinking, and that’s when an ER doctor walked in and said, “Why is she wide awake? Let’s get her some more meds.” Then the bliss of nothing, once again.

Later in the ICU when Liz and I were recounting that story, and sort of laughing, our nurse overheard and was horrified. She sent a note to the ER team, and the next day the ER doctor came to my room to apologize. “That must have been horrible,” he said. Honestly, I told him, it wasn’t even close to the worst thing that happened. Getting extubated, when they have to lower your sedation for a long time, and do breathing tests to make sure you can handle breathing on your own, all while a hard plastic tube is dangling down your throat. Having a respiratory therapist stick a suction so painfully far down your nose that you think she might pop back up with your ovaries. Being afraid to cough. Getting pneumonia because your body can’t fend for itself. Those were the things that traumatized me. I didn’t say any of that to the doc, just thanked him for his concern.

When an ER doctor comes into the ICU, the nurses get all fluttery, and this one was tall, dark, and I suppose he had a hint of mcdreamy. But I only had eyes for one visitor, and she was on her way from preschool.

“Does my hair look okay?” I asked my wonderful nurse Charlotte, like it mattered.

“I can show you in a mirror,” she offered. I shuddered and declined. I didn’t want things to get that real.

Through a curtain and one glass wall, I had a neighbor named Walter. Though we never met, I could hear people talking loudly to Walter, about his feeding tube, about coughing, about how his day was going. Walter coughed pretty loudly, and he was at his finest, just hacking away, when Scarlett entered the ICU with Liz. But Scarlett seemed unfazed by everything, and was just eager to show me the balloon she bought at the gift shop.

“It’s for both of us,” she explained, holding it very tightly, “But I need to take it home with me.”

She thought the masks and gloves were the coolest things ever, and she climbed into bed with me just briefly before finding other exciting things to explore. She pressed her nose to the glass to look out into the hall.

“Walter’s goin’ on a walk!” she bellowed. Her indoor voice frequently experiences technical difficulty.

“Leave Walter alone!” I hissed.

She was in full entertainment mode, singing, dancing, and collecting as many rubber gloves as she could before it was time for her to head back to my sister’s for her third sleepover in a row. I could see her bouncing down the hall, blond ponytail and leopard-print headband. I lost sight of her after Walter’s room, and that’s when I started to cry.

After my last extended hospital stay, I left with a baby. This time I was leaving with a mass inside my right lung, a pneumonia. Scarlett’s entry into the world was all fingers and toes, perfection, first breaths, and natural feeding. Now I was looking around a room, full of devices to keep me alive, the place where amazing nurses were caring for my failing body every hour, and my wonderful husband had chopsticked sushi rolls directly into my mouth (which required the oversight of a nurse, lest I start choking on yellowtail and avocado.)

Same hospital, same hallways, same rooms, same dressing gowns. Except now, 5 years later, instead of delivering my baby, I’m fighting to live for her.

Monday, 15 June 2015


The song birds outside my bedroom window woke me this morning with the wonderful sounds of spring, reminding me that life is sweet and beautiful. After Betty's Run for ALS yesterday, where the weather was cold and wet, I needed a sunny, fresh start to a day. These small creatures, flitting and fluttering about, chirping and singing, the sun shining and the lightest of breezes; this was the best way to start a day.

Betty's Run can be a real challenge for me, at the same time as it is such a strong reminder of how much support there is for me, and for other PALS, here in Calgary. The challenge in the run is two-fold. When the weather is cold, as it was yesterday, it's challenging to my body, the chill running deep, setting in, holding on until far into the afternoon and evening. When my feet and legs get cold, there is no circulation to warm them, no muscle movement to pump blood, nothing to send my body warmth coursing through the veins and arteries of these dead appendages. They get cold; they stay cold until warmed by some external source.

Even more challenging is the impact this run has on my spirit. While I am certainly uplifted by the support and enthusiasm of all at the run, it hurts me to see the other PALS, especially those who are not doing well. To see those who were diagnosed at the same time as me, yet decline more rapidly; to see those who are newly diagnosed, confused and frightened about what this disease will do to their body and their life; to not see those who were here last year but did not live to see this year.

It's enheartening to see the families and friends of those PALS who have died, to see them out there supporting those of us still here. They support in memory those they have lost. I have to wonder, who will run for me when I am gone? I am no great figure; I have no large family. I am not a great fundraiser or organizer, at least not any more. I no longer have the strength for it.

I feel like I am one of those birds outside my window, a small creation of God, singing in the sunshine. Like them, my seasons are short. Like them, my life is precarious. Like them, I am dependent on circumstances. Yet, also like them, I find joy in today's life. And also like them, when I am gone, other birds will sing in my place. That's just how it works.

Sunday, 14 June 2015

A Nice Glass Of Wine

The other day I share Denise Long's thoughts on good things about having ALS. While it might be impossible to believe that their are good things about having ALS, it's not always bad, just mostly. On the other hand their are plenty of good things about life, about living, whether or not you have ALS.

Last night a bunch of my friends came over. They, along with Katherine and myself, bottled some wonderful wine then made an amazing dinner. We, we small band, we merry bunch of men and women, sat together, laughing, telling tales, listening to one another, laughing at jibes and jokes good and bad. We, this small band of loving companions, spent our evening sharing our lives. We enjoyed being.There are a few things that arise from an evening like this which remind me of what joy there is in being alive, more than a few. Here are the first that spring up in my thoughts.

Being hugged; this is perhaps the most powerful and wonderful thing in my life these days. Over the last few years I have gone from being detached, distant, not liking contact to being the most hugging person you can imagine. I would never have imagined the power of human contact, the loving embrace of those who care, were it not for what has happened to me in the last few years. The changes in my life have changed me, and getting or giving a hug is one which has changed me the most.

Wonderful food and drink; this has become a core of my time with friends. Nothing so completes an evening as the savory creations which decorate my table, both of wine and food. Nothing is so wonderful as to share this bounty with those who care about me. It is a glory in my life that I can taste so much, enjoy so much, feel this flavour of life. I simply adore the time I spend with good friends, good food, good wine. Nothing compares.

The laugh of someone who cares; I don't care if I am the point of the humour. Others seem not to care if they are the point. Nobody seems to mind, when we are together, if one or the other is the center of the story; we are all a part of the story. Telling our story, laughing at our humanity; this is what we are and who we are. It only works because we are safe in each others company. To be in the arms of safety, to find humour in our lives; this is a moment beyond measure.

This morning this same group of friends, plus a few and minus a few, got up early and went to Betty's Run for ALS, only we walked. The size of the group at the event, the collections of family and friends, the play area for children, free food and drink, all made it a carnival atmosphere. I took a look around and was once again reminded that it is the support we receive, we who struggle, which makes our lives worth living. It is the care shown to us which makes it worth going on. I've learned all of this and more.

There is no upside to this illness, not really. As my step-sister said when she was dealing with brain cancer, "There is no good outcome in this scenario." There are, however, lots of little victories along the way. It's important to remember that you can't do it alone, even if you want to. Life is made up of those who walk it with you, share it with you. That, and a nice glass of wine.

Saturday, 13 June 2015

It's A Tough Choice Sometimes

One of the most difficult things for me to do these days, what with having ALS impact my life in so many ways, is to remain positive, to keep an upbeat, happy, good view of the things which happen in life. It would be, and often is, so easy for me to go to the negative, to find the cloud for every silver lining, to focus on what is hard for me in any given situation. When it takes so much out of me to sit, to roll around, to transfer from chair to chair, even to feed myself some days, the downside is forever present, immediately at hand.

Yesterday is a good example. Dollar for dollar, the absolute best entertainment deal for a handicapped person in Calgary are tickets to the CFL Calgary Stampeders games. I can get a ticket for myself for $5.00, a ticket which allows a helper to come in with me for free. Handicapped parking is free as well. So for the grand sum of five bucks, Katherine and I can go to any Stamps home game throughout their season.

The seating is not the best in the house; remember, it's a $5,00 ticket. McMahon Stadium was built in 1960, back in a time when handicapped people simply did not appear in public. We were hidden away, kept from view. No special arrangements were made for us. No access ramps or open seating. In recognition of this oversight, Stampeders management put in a handicapped section in the north end zone, covering it as well, showing a real understanding of the limitations and needs of those of us unable to deal with the weather.

It was the weather that got to me yesterday. Katherine and I went to the Lions/Stamps pre-season game. Here in Alberta the weather can turn nasty in a moment, and yesterday it did, going from mild to miserable in a minute, with rain, hail, wind, lightening, and thunder. The temperature dropped from 12 degrees centigrade to as low as 4 degrees at one point. It went from cool to freezing, with every other bit of nasty associated with that change.

Thanks to the Stampeders management, we were under cover. Unfortunately there is, or rather was, nothing anyone could do about the cold. It's an outdoor stadium. By the time the game was half over, I was so cold, especially in my legs where there is pretty much no circulation, that we decided to go home. Even after I got home my legs and feet remained cold for several hours.

My first reaction was to be kind of bitter about this. For so many other healthy people, they could just walk around and generate some body heat. For so many other healthy people, they did not need an extra blanket wrapped around their legs. For so many other healthy people, the weather passed. For me, none of this was true. I cannot walk; I just got cold and stayed that way. Even the blanket didn't help. And when the air finally started to warm up, I was plain cold right through.

There is an upside here, in all of this. That's what I have to remember. For only five bucks, both Katherine and I got to go to a major league sporting event. Even though we spent nearly $40 on food and coffee, it's still a great night out. My choice is this. Do I complain about what I had to go through, or do I focus on how great it is that I can still do this? Sometimes it's a tougher choice than you might think.

Friday, 12 June 2015

Guest Blogger: Darlene Long - Ten Things

This is a guest blogger post today, written by Darlene Long. I've made a couple of edits for which I hope she will forgive me. Darlene cares for her husband, Roger, who is fighting to live with ALS. She contributes some powerful thoughts to our online ALS community on a regular basis. This is just one example of her insight. I can easily identify with each of them.

What is good about life with ALS?

Augie Neito who has lived with ALS for 10 years, started a blog and wrote 10 Good Things about having ALS. It was done with a sense of humor, and definitely from a male point of view, (women don't get mad if you go to hug them and your hands fall down on their butt - one of the less colorful examples).

But the truth is, living with ALS requires a sense of humor, dark and/or light hearted, to keep your sanity. And dignity becomes a lost cause all too quickly.

You can either laugh or cry, and it is far better to laugh.

So, here goes. And, Augie Neito, you started it.
  1. Your muscles melt and wrinkles dissolve. ALS is the best wrinkle cream possible. Your face is as smooth as glass. Of course, you cannot really smile or frown so you look like you have overdone Botox.
  2. You find immense clarity of what matters. Soaking up the sun's rays to get a tan (and melanoma) not even on the scale. Feeling the warmth of the sun on your face on your first spring outing after being house bound during the cold, winter months - priceless.
  3. You discover good, compassionate people who come into your lives to replace the ones who fade away. You are amazed at the resiliency of your family and friends who give of themselves to ease your struggles.
  4. You take nothing for granted, knowing that life often changes in a heartbeat and no one is immune or immortal. Everything that happens that is good is a gift to be savored.
  5. You come to terms with your own mortality. Death is no longer off in some cloudy future, it whispers to you with regularity. But as it does this, you also find it is not as frightening. The fear becomes ordinary in the regularity.
  6. You shift your focus on 'stuff'. Collecting 'stuff', buying 'stuff', and saving 'stuff' all are colored with the very real 'do I need this stuff' question. 'I want' and 'I need' are now centered on relationships and even physical health issues, with 'stuff' often insignificant,
  7. You lose the drive to expect people to behave in certain ways, and find relationships can be so much better without those expectations. You can be happy and grateful for what happens rather than miserable for what doesn't.
  8. You have time to set your life in order. You get to decide what you would like to happen, and to talk it over with your family.
  9. You get to make amends, to forgive, and to ask for forgiveness. You can let people know how much they meant to you and listen to how much you meant to them. You get to really say good-bye. (Have plenty of tissues readily available.)
  10. You can write this last chapter of your life as you wish, possibly even shaping your legacy in your ending. You can choose to enjoy every moment possible. You can choose to live the life you have left as best you can, with courage and strength and humor and grace, all the while searching your soul and exploring your Faith.

Thursday, 11 June 2015

Longer Life And Beer Reduction

It was a very interesting day at the ALS Clinic yesterday. For the first time since I was diagnosed, my neurologist, or rather one of the two that I work with these days, said that the three year timeline for my prognosis was probably wrong. He went on to say that this is why he hates to give that specific kind of prognosis, because there are people like me who do better than others. He went on to say that he was "pleased with my slow progression" and that he had "no problem signing off on my driver's licence for another year."

ALS is still a progressive disease; my disease is still progressing. But this is the first time I have felt like I might make it a bit longer than planned, perhaps even an extra year. This is the first time since diagnosis that the 36 month timeline has been firmly dismissed by a neurologist. In a life expectancy where you typically deal in months, another year of prognosis is a wonderful thing.

Even with that good news, there is still measurable progression. It hasn't stopped; it's just unusually slow for someone in my age group. For example my arms are now measured at a "4" on the clinical scale instead of a "5", the normal level. My fingers are noticeably weaker, probably a "4" as well, while the loss in my shoulders is minor. I am not as strong as I once was, but I am still strong nonetheless.

There were other specialists there, as well as the neurologist, including the nutritionist. Her role on the team is to ensure I maintain my weight, meet my nutritional needs and keep my fluid intake up. Unfortunately all three of those are coming into conflict these days. My weight is up; I now weigh 250 lbs., the heaviest I have been in my whole life. While this is not a real concern right now, the last 15 or 20 pounds are affecting my ability to transfer, especially with my arms getting weaker.

When I asked if I should go on a diet, the answer was an equivocational "no". She doesn't want me to diet "per se". She would like me to maintain a high protein intake, a lower carbohydrate intake, and to make sure I eat plenty of fruits and vegetables. Katherine was quick to take up that cause. Then came the killer. I am supposed to reduce my "non-nutritional calorie intake." That means beer; beer has lots of non-nutritional calories in it. Up until around 240 lbs., the weight was good for me. It still is kind of good for me, but I have hit the top of the return curve. More weight is not so good from here on in. I have to drink more water instead of beer. Here is where I make a sad face.

The nutritional stuff isn't such a bad thing. Beer is expensive, especially in a bar. Now I don't spend all that much, thanks to very supportive friends, but reducing my beer intake will reduce my expenditures, something I need to do these days. I'm going to try it for a couple of weeks. If I am unhappy, then screw it. I will get fatter.

Wednesday, 10 June 2015

No Sleep Last Night

I couldn't sleep last night. I've had to get up early today to go to the ALS clinic, so of course my good friend insomnia would come and stay with me for the night. I managed to get about five hours of sleep, perhaps less, over the course of 10 hours in bed.

This kind of thing has happened in the past, where I have lain away until 5:00 AM, waiting for sleep to come to me. That's why I got the dreaded Zopiclone, a drug that is supposed to help put you to sleep for about 8 or 9 hours. Unfortunately the one I took last night had little or no effect on my system. I was sorely tempted to take two, but decided against it, instead just letting my body do its thing.

The reason for this insomnia is most likely worry about my Mom. She was taken into hospital last night at about 8:00 PM. It looks like a recurrence of an infection that just won't go away. She has been dealing with this monster for a few years now; they beat it down but it keeps on coming back. During the course of the evening I called and texted my other brothers. By bedtime it would be fair to say my mind was in no mood for sleep

The other boys are in the loop. They have talked to Ray and those who can have already been to the hospital. If she is in for a short stay, I will remain here in Calgary. If she is in for a longer stay, I will be headed down to Vancouver to see her.

Life is such a fragile thing, yet in the truest of dichotomies, it is a persistent thing. There are so many things which are out there, waiting for a moment to take our life. Yet life fights for itself constantly. I am sure my Mom will be okay. For all of her life, the will to live has beaten the hell out of the things that would defeat her. I am sure she will be fine... but I worry.

Tuesday, 9 June 2015

Do I Call The Fire Department?

Do I call the fire department, or no?

It's a question I have been pondering all day. I want to go to my Trivia group tonight. Dion has said he will help me down the stairs in the stair walker, but he has to work, so he will either be late, or arrive at the very last minute. I hate to put him to all the trouble. There are others I might call too, but I hate to ask. I hate being an inconvenience, a problem. I actually don't like being a nuisance to others around me. I ask enough of them already.

My other option is to call the fire department. Once again, I hate to be a nuisance; these men and women have real jobs to do, lives to save. To ask them to be distracted from that most important task, simply so I can go to my Trivia night, seems wrong in my mind. Once again, I don't like being a nuisance to my community.

It's not enough that the departure from my apartment is problematic, but the venue is problematic too. Trivia is held on the second floor, up a long flight of stairs. There is no elevator, no wheelchair lift, nor is there a plan to put one it. Once my elevator is done and I lose the stair walker, it will become even more problematic for me to get to Trivia. Once that happens I suspect my Tuesday nights will become even more empty.

Add to this whole mess is what will happen when I get there. If I get there early, there will likely be nobody there to help me unload the machine, nor to help me up the stairs. If I get there when everyone else arrives, my trip upstairs becomes a spectacle, and not one I like. If I get there late, things get even worse as four or five guys come downstairs to help me.

All in all, it's a lot of fuss to get to a Trivia game. Except I have been going with this group for five years, every Tuesday night when I am in town. To sit at home while they are all there annoys the hell out of me. So I want to go.

Which brings me back to the question, "Do I call the fire department?"


In the end, I have decided not to call the fire department. Dion will be here soon and he will help me. I am going to have to call the fire department to get out tomorrow so I can go to the ALS Clinic. I don't want to call them too often.

Monday, 8 June 2015

A Cow In A Sling

Home came this morning, arriving just as I was getting ready to write. These folks come into my home every Monday, Wednesday and Friday to help me with my shower and to do Range of Motion exercises on my legs. Some of them have been coming long enough that they have seen the losses in my strength. Today was no exception.

For the first time today, I was compelled to use my sling to make the transfer from my wheelchair to my bed. It's not the first time I have used the sling; other times I have needed it when I have been especially weak or when I was having a "bad arm day". Today was different, though. Today I needed the sling in the morning, after a full night of rest. Today I needed the sling even though I am not having any particular issues with my arms. Today I needed the sling as a part of normal life.

It's a new normal for me. My arms have weakened just enough that I no longer have the strength for a full transfer onto my bed. I can still get mostly there; lifting myself just a bit onto the tire of my wheelchair and flopping over for the rest. That ability, however, is waning quickly, already having gone enough that I no longer feel safe doing the transfer. I need the machine to feel safe, to feel like I can make the trip.

If you have ever seen the movie "Lake Placid", there is a scene where the protagonists are dragging a cow across the top of the lake in order to attract the antagonist, a giant alligator. The cow is hanging in a sling, dangling from the chopper. That's kind of how I feel in this process, my sling hanging from the ceiling and me being lifted and dragged across the surface of my bed. I'll have to get used to it; it's the new normal. I am at least grateful that I can do it by myself, for now. At a minimum, I can still live on my own and look after myself, even getting into bed. It's just another machine doing for me that which I used to do for myself.

Sunday, 7 June 2015

Remembering Standing

I caught myself thinking the oddest thing this morning, while laying in bed trying to work up some sort of enthusiasm for arising. I was thinking "I wish I could still push myself up vertical with my hands so I could at least get the feeling of standing up once again." I didn't wish I could stand up; I wished I could push myself vertical like I used to.

So much time has passed since I last stood vertical on my own two feed, unaided by device or machine; enough time that I have almost forgotten that I could once do it. It is almost an act of will to recall when I last stood tall, the visual no longer comes easily or naturally. I can't actually remember walking without having ALS unless I look at a photograph from beyond five years ago. The last major walking event I recall was in the spring of 2011 when I tripped and fell while out walking with Meaghan, Charlotte, and Kate. Even then I was in the early stages of ALS; the tripping was a sign of toe drop only I didn't know it.

Normal is as normal does. These days normal is being in the chair, not standing up, not walking. I rarely think of myself as not in a wheelchair. The only place I walk is in my dreams. The only place I still sail, climb, hike, run, hunt... is in my dreams. In my dreams, somehow I have ALS but it doesn't seem to affect me. When I wake, I come back to reality, where remembering how to stand up is something in the distant past.

It's not all bad though. Without ALS I would never have met Katherine. Without ALS I would never have known some of the tremendous people who have come into my life in the last couple of years. Without ALS there likely would have been no trip to Europe with Cheryl, no Great Elevator Escape, no plans for Alaska, no drive to San Francisco. I'm not saying I'm glad I got ALS; I hate this disease and what it has done to me, but there are good things and good people. All I have to do is remember them. That's the real challenge.

Saturday, 6 June 2015

No Provisos Needed.

I've been invited to go to a buddy's stag party tonight. I happily said yes, the only proviso from me being "if I can get in and out of the limo". We find that out at the last minute tonight. If I can do the limo, I am definitely going to go. We also talked about the wedding. My friend really wanted me to be there but the venue was entirely unsuited to a guy in a wheelchair, all stairs and no easy access to a bathroom. I told him I was honored that he would even have me on the guest list, and not to worry about me. I wanted him to have a great wedding day, not being worried about my limitations.

It\s interesting how often that kind of proviso creeps into my life. I'm used to it, to the limitations that the wheelchair creates. I am certain that I don't want others to bend their plans around my disease. It's critical to me that their life go on free from having to "babysit" me. I'm the on with ALS, not them. On the other hand, there is, and continues to be, a strong support group around me, and that makes like worth living some days.

I also know how important it is when you get married. Let's face it, I am a relationship kind of guy. I once said that my greatest worry was dying alone. It's not, really; it's living alone in those last few precious hours and days before I die. I want, and have always wanted, someone in my life to share both the good and bad with me.

In my mind, marriage is a natural state for men and women, or at least most men and women. The marriage may not be the kind sanctified by some self-appointed arbiter of life's events. The marriage may not have a piece of paper or public event behind it. But to those in the relationship, they are married, and they like it, most of the time. Even when they don't like it, they will stay in the relationship because something inside of us wires us towards coupling. We are made that way.

Whenever one of my friends is in a relationship, it makes me happy. When I am in one, as I am now with Katherine, it makes me more than just happy. It gives me a reason to keep going, a reason for living. Simply by being with me, without the million things she does, she improves my quality of life. When it works, it's wonderful, no provisos needed.

Friday, 5 June 2015

Problems In Bed

I've said more than once that the most challenging part of my day is getting up in the mornings. Over the last few months, as my arms have gotten weaker, getting into bed has slowly been creeping up on the difficulty list. These days it is becoming a neck and neck race, a headlong fling into the difficulty sphere to see which is worse.

Back in the good old days, just a few months ago, getting into bed was problematic but not particularly challenging. I would simply force myself upwards into a standing position and rotate to sit on the bed. As my arms weakened and my legs gave out completely, I found I could no longer do that lift. So instead I started transferring onto the bed. I would simply lift myself up in the wheelchair and fling myself sideways onto the mattress using the M-rail as an aid.

As time went by, that sideways fling disappeared, my arms no longer strong enough to get a full lift out of my chair. It disappeared sufficiently to say it was no longer flinging so much as dragging my ass across the wheelchair wheel and onto the bed. The loss of strength has continued such that now I can no longer even get clearance for my ass across the wheelchair wheel. For the last month or two I have taken to getting one butt cheek rested on the wheelchair wheel with the first lift. A second lift would move me such that my butt crack rested right on the wheelchair wheel, not a terrible issue when clothed but very awkward when making the transfer naked after a shower.

Nonetheless, the second lift takes place and I balance precariously on the wheelchair wheel. Then comes the moment of truth. If the stars align, if fortune smiles on me, if the gods favour me with a glance, I do one more lift such that I end up approximately seated on the bed. If all does not go well, I end up either split-cheeked with one part on the bed and another still somewhere one a wheelchair wheel, or I end up just flopping down sideways and pulling myself the rest of the way using whatever grips I can find, be they bedsheets, bedposts, an M-rail, whatever.

As you may surmise, all of this exercise is exhausting, making whatever comes next wait a while until I catch my breath. What you might not understand is that I am grateful I can still do that transfer, however its form may end. Beside my bed is a sling. That sling is what comes next. Soon enough I will not be able to get into, or out of, bed on my own. Soon enough another machine will do for me that which I used to do for myself.

I suppose the real question is this. "If it's so hard to get into bed, and so hard to get out of bed, why bother? Why not just stay in bed?" Then I remind myself that the first step in dying from this disease comes when you don't get out of bed anymore. I'm not ready for that yet.

Thursday, 4 June 2015

I Get Angry

I get angry sometimes. A great many people would say "Of course you get angry. You have ALS!" But it's odd sometimes, the things I get angry about. Most of my anger devolves out of feelings of frustration, of loss, of feeling diminished, different. I'm angry because of what I have to deal with. I am angry because other people don't have to deal with it. Somehow they get to keep going, keep living. I get to fight this awful disease and then I get to die from it. That's enough to make anyone angry.

The other day I went to Trivia. I was strapped into a stair climbing machine and driven up the stairs like so much cargo, like a meat delivery in an upstairs butcher shop where I am the side of beef. Once up there, with everyone able to see my predicament, I had to be lifted into my wheelchair by my friends, All of this in full view of all the "normal" people, they upright and me crippled by ALS. It made me uncomfortable, frustrated. I felt diminished, like I was an oddity. I got angry.

Then I had to sit at the "children's table", low, out of the conversation, unable to fully participate in the trivia game. I was unable to make eye contact, unable to have a full conversation, unable to share my contributions without exerting the effort to get someones attention. I felt left out, insignificant, unnecessary. I got angry.

But then there is my anger where it has no right to be. The other day I saw a man who was clearly older than me out running; not jogging, not ambling, running. I have never been a runner; my preference has always been bike riding. Nonetheless I saw him, well beyond my years, running, healthy, fit. I saw a young couple walking along the way, holding hands, watching their child run to and fro, playing with him. I saw a woman on a bicycle, peddling and pumping by, pushing her legs, the muscles pulsing as she rode on. And I got angry.

Oddly enough, the fact that I will die from this disease doesn't make me angry. I heard today of a friend of a friend, only 25 years of age, who just died from cancer. That young person had a right to be angry. I've had a pretty good run at life; dying is just the natural conclusion. It's living with ALS which gives rise to my anger.

If I seem a little churlish at times, a bit more touchy than I once was, perhaps it is because this anger has no place to go, no rational handling mechanism. I simply have to accept the fact that I am angry with something I can do nothing about. I have ALS. I am crippled. I am continually weakening. I am an oddity. That makes me angry. Please forgive me if it shows now and again. It's going to happen.

Wednesday, 3 June 2015

Grateful Again

It's been an interesting evening, or night, or day; whatever you will. Right now I am sitting safe at home after one of my nights out. I love my nights out. I forewent an evening with Katherine to have my night out. something which was a real struggle for me. Given the opportunity to spend a safe and warm evening at home, snuggled on the couch, clean from a shower, wine in hand; or an evening out with the gang, and out even later. It's a difficult choice. I chose out.

The first step of the evening was getting downstairs in the new stair walker machine loaned to me by CanWest Elevator & Lift. I've seen these machines before. They are expensive. CanWest has put this one at my disposal until the elevator is fixed. More than that, Steve Poffenroth, a technician from the company, came to my apartment at 5:45 PM today to get me downstairs using the machine. We wanted, once again, to show Katherine how easy it was to use. Then he went with me to my Trivia night and got me upstairs, showing the gang how to work the machine. I was so happy that he joined us for part of our trivia night, and a beer on me. It was the least I could do.

It was difficult for me. I was embarrassed and frustrated that I had to be hauled up to the second floor this way. I was ashamed of my inability. I felt awkward, like I could not "do" for myself. I was cranky, angry, upset by the time I was up, out and in my chair, only to find I was at the "kids table", a short table at the end of the large table for everyone else. I have nobody but myself to blame for this; I should have called ahead and arranged a short table for a full team. I know the bar would have arranged it.

After playing my trivia night, the guys got together and used this new device to get me down the stairs. The two men who have been so big in my life to date, Mike and Dion, were not part of the crew; they didn't have to be. The rest of the amazing group of men and women who are a part of my life just stepped up and helped.

I got downstairs. The guys loaded the walker into my truck. I beetled off to the Cat 'n Fiddle, my other Tuesday night haunt. I planned on closing the bar, and hoped one of the guys there would come home with me and help me up the stairs. I made the assumption, fully expecting it would not happen, with a backup plan for getting home.

When the evening wound down, I found myself, as expected, on my own. I drove home and did what the Calgary Fire Department and EMS have been encouraging me to do since the beginning of all this nonsense. I called them. They came, three EMS techs in their ambulance. We talked. I explained about the walker, about how it worked, about what help I needed. They said "Let's do it." We did it; they had never seen a stair walker like this. They were impressed, plus incredibly helpful along the way.

At the end, I was, and am, safe at home. The EMS team were super easy about it, once again encouraging me to call anytime, no matter what. I am so grateful to live in a city, province and country with this amazing, wonderful support. They thought the whole thing was pretty interesting. I showed them the modifications on my truck, the renovations to my apartment, the slings, the shower. It was just nice to feel like the way I was living was cool, amazing to them. And I felt like I could handle even this on my own, with a bit of help from them.

After they left, I once again thought about how fortunate I am. The truth is, other than this one small health issue, I have a pretty good life. I just have to keep it in perspective. Sometimes I need help. Sometimes helping me is a good thing. Mostly I just need a little food and watering, but that's Katherine's job.

Tuesday, 2 June 2015

My Own Bed

It's been an amazingly hectic morning and afternoon here at home today. It's a good thing I woke up at home, feeling happy and safe. It's a good thing I have Katherine with me to help level off the stress and distress about all the stuff going on. It's a good thing to be in my own space.

When I woke up this morning, I felt good, better than I have in a long time. I suggested to Katherine a way to celebrate. She giggled and said "I have to get up now. Tonight." She got up and got dressed while I lay there, sulking. Then she brought me coffee and breakfast and said "Sit up. Eat. Get dressed." I slid into a seating position; that's when I realized I was at home.

As I slid and wiggled my way upwards, my body moved easily on the sheets beneath me, gliding me upwards as I worked into a sitting position. I knew I was at home, on my 600 thread count, smooth sheets, not the sandpaper sheets from a hotel which yard my underpants down with every move. I looked beside me and realized my clock was right there, where it was supposed to be, not like the hotel clocks, forever on the wrong side of the room.

I realized how grateful I was to be home. Then I got up to go the bathroom and became even more grateful. After an easy transfer to my well place toilet, I did what had to be done. After completion, I washed myself on my bidet seat, something I haven't been able to do for weeks. In hotels I have to use wash cloths and whatever else to clean my derriere; it's not a fun process. Here at home, I can be clean.

My gratitude for home increased as I went into my bedroom to dress. My clothes, all of them, not just a subset, were in my dresser and closet. I had choice, I had more than five shirts and five pairs of underwear and two pairs of jeans. I had the clothes I wanted, right there, The suitcase lays empty on the floor, a reminder of yesterday. Today, I get to dress in whatever I choose.

Then I went into my kitchen for a cup of coffee, my own cup of coffee that I could make for myself. I had milk for it from my fridge, not that powdered crap that exists in every hotel and motel room in the world, or at least almost every room. I didn't worry about missing breakfast; here at home there is no cut-off time for access to food, no check-out time. I ate what I wanted, when I wanted, from my own kitchen.

Life is the glory of simple pleasures, the wonder of having a place to live, a place to be. This morning I am grateful for so much; for Katherine, for my home, for the amazing people around me who help me so much. This morning I woke up in my own bed, the best way to start my day.

Monday, 1 June 2015

A Gift

Katherine gave me a gift yesterday, an amazing, wonderful gift. It's the kind of gift that you could only give me if you understood where I am in life, what kind of person I am, and what ALS is doing to me. It's the kind of gift that while keep me busy for hours, keep me focused and happy for days, keep me wanting to get up in the morning. Katherine asked me to plan a road trip to Alaska.

I told her I have no money, that I cannot contribute anything to another road trip. I told her there was a chance I might not even have my truck by the time we could get to another road trip. She said "Don't worry about that." I asked her again if she was sure, since I couldn't pay for anything. She said, "Make a plan. If it works, we will go."

I am not sure if we will actually go. I have found Katherine to be good for her word; if it works, we will go. It's the whole "if it works" part. Katherine is not cheap, nor tight-fisted; she does not use money to maintain control. Neither is she a spendthrift; she knows the value of a dollar, along with the importance of using it well, and wisely. The only real proviso she had for the plan was that I do a better job of budgeting for hotels, that I actually check the hotel rates in each location for the real price.

Of course I am going to build a plan far to vast for reality. I am going to build a plan for a dream trip, to Faro in the deep Yukon, through Dawson, up to Inuvik and back, over to Fairbanks, down to Anchorage, out by way of Whitehorse. Of course I will make a plan that takes too many weeks and sees too many places. Of course she will object, and I will be happy to reduce the duration and the expectation.

Katherine's gift to me was the idea that there might be another adventure in my life. In spite of my loss of finances, my failing ability to drive, my exhaustion, my frustration, in spite of all of these things and more, I just might have another road trip in me! After all, without a dream, what's life for?