Monday, 30 November 2015

I'm Losing My Arms

For some months now my left arm has been aching, a steady kind of pain from muscles overworked. It's consistent, it's persistent. Every morning I wake up and the muscles in my biceps and upper arm hurt, sometimes bad enough that Tylenol is my first meal of the day. These muscles hurt because they are getting weaker while I still demand full utility of them. I'm working them too hard.

Up until now my right arm has been spared this annoyance. It might hurt now and again, particularly after a very busy day. I thought this was the case a couple of days ago, when I woke up to discover the same pain, only at a lower level, in my right bicep. Then I woke up yesterday with the same pain, and today with the same pain. It seems a corner has been turned, once again. It seems that both of my arms are now weak enough that they hurt from simple daily usage. I'm getting weaker.

This is no surprise. My arms started showing initial signs of difficulty a couple of years ago. The progression was very slow at first, almost imperceptible. I was really the only one who could see it. When I talked to the neurologist about it, he said he couldn't measure it, but if I felt it, it was probably happening. He also said that my arms would likely go the same way my legs did, with the left side going faster than the right, then both sides, slowly at first then rapidly as I got further into the progression. So far the neurologist has been correct.

These days my arms are barely strong enough to lift my body weight. It's 250 pounds, not insubstantial, but a lift from my wheelchair to transfer into the truck, or onto the toilet, or into bed, has always been possible. My arms, especially my left arm, are approaching the point where that won't work anymore; I won't be able to make the transfer.

Oddly enough in all of this, it is my upper arms losing strength the fastest. My lower arms seem to be doing okay, although it's really hard to tell since they work as a team. My hands still seem fairly strong, except on really bad days. I can still feed myself, open a twist top bottle of beer, fold laundry. Sure, I get tired. That's just ALS. But I am definitely losing my upper body strength fairly quickly these days. It's what happens.

Sunday, 29 November 2015

Days Like This

It's Grey Cup day today; the game is in Winnipeg, played by the Edmonton Eskimos and the Ottawa Red-Blacks. It's a Canadian Football Championship! It's also the most Canadian reason you can get for a party. One event, one Sunday afternoon late in November, every year. East meets West.

For the last three years, we've celebrated this day at Wavehill, the 5,000 SF cabin in the foothills of the Rockies which we rented for the weekend. We would arrive mostly on Friday night, and stay mostly until Monday morning. Usually the Monday morning crowd was a bit light. Most stayed for the Grey Cup and went home afterwards.

The financial makeup of our little group of friends has changed. I am no longer working, so cannot underwrite the affair. Mike is away and cannot come; his new job has taken him to Kamloops. There is a general downturn in the Calgary economy. Some have lost their jobs, others are worried, counting their pennies. So this year the Grey Cup party is here at my apartment.

Dan will arrive soon to start his slow baked ribs; Anisa will be with him to help. Kate will arrive at around 3:00 PM, as will many others. We will gather together, cook, eat, drink wine and generally have a good time. The game starts at 4:00 PM, theoretically, more likely at 4:30 PM after all the pre-game nonsense. We'll watch, we'll eat some more, we'll watch the second half, we'll drink some more. Then, after the game, we will continue our four year tradition, watching the Princess Bride together. Some will stay, some will go. It will be a good time.

Days like this are important to me, even crucial to my well being. They take me away from the struggle of ALS, from the pain in my arms, legs, back and neck. A day like today helps me focus on my friends, on enjoying their laughter, on sharing my life with them. A day like today is a break from the work, the effort of living. It will be social, like I am. We will do what all social groups do when they gather. We will eat, we will drink, we will talk, we will make merry. That's what takes my mind off of life in general.

Saturday, 28 November 2015

Writing for Dollars

I didn't shoot a deer yesterday. It doesn't matter; I had a terrific day out in the woods and fields, exploring, looking for game. We saw lots after sunset, but none where we were hunting. This is good for the deer, although it means I don't have a freezer full of venison. It would have help, having a freezer full of meat.

I'm on AISH now, the Alberta Assured Income for the Severely Handicapped. The name of this supplemental income is enough to let you know how I am doing. I am severely handicapped, and getting worse. It's kind of depressing, to have used all of my own money, run up my credit cards, and now to have to depend on the government for even more money and support. On the other hand, nobody plans for ALS; nobody plans for living longer than a reasonable prognosis; nobody plans for the expenses of this illness.

This morning Katherine and I were discussing how I might make a bit of extra money. AISH allows me to make up to $800 a month in income without impacting my benefits. Of course if I could work, I would be doing so already. My energy level precludes normal employment. My body precludes anything even vaguely physical. These days I can hardly get into my truck, so UBER is probably a bad idea. Katherine thinks I should see if I can make some money with my writing.

Over the years, I've written a number of commercial pieces; magazine articles, speeches, presentations, that sort of thing. I've never made a real push of it; it was just another part of my work. My blog, my poems, my other articles have all been written for myself, a kind of release from the stress of my life. I've never seen them as publishable articles.

The truth is that right now I lack the motivation to pursue this, and the confidence to feel that it could be in anyway successful. I just don't see why people would be interested in what I have to say. I don't know why people would want to pay to see what I write. Some of them do, sometimes. Those instances are few and far between. I just don't see how I could make a consistent income from it, or even an intermittent one. In this area, I don't believe in myself. I don't need the rejection. Silly, I know. But true nonetheless.

Friday, 27 November 2015

Going Hunting

I'm excited. Things are moving quickly this morning. I am heading out hunting in a few minutes, heading out in my truck with my gear and guns, heading up into rural Alberta, along the rolling foothills of the Rockies, where the forests begin and the plains end. There I hope to find a willing white-tail deer who will present himself as a sacrifice to my need to once again feel like I can fend for myself, take care of myself in the bush, feed my family with the gain from my efforts.

The plan is for me to head up to my buddy Thor's place in Caroline. He will be my legs and heavy lifting for the day; he knows what he is getting into. From his place, we will head off into a local ranch where the landowner has given us permission to hunt. This is no flatland exploration; I'll definitely need the 4X4 in my truck today. We'll wander about the countryside on whatever roads there are; we'll make a few if needed. We'll see what we can find; we'll shoot it if we can.

This will probably be the last time in my life I get to do this, the last time I can go hunting. This year's hunting season ends on Monday. Next year is too far away for me to see, but my suspicions are that I will not be in good shape for any sort of expedition like this, if I am here at all. This makes today all the more special, all the more meaningful.

There are a lot of "last time" events with ALS. Most of them have crept up on me, taking me not by surprise so much as unawares. I knew it was happening. I just didn't know that this was it. I had a suspicion, yet I would keep trying, keep going until I had completely exhausted the possibilities. Today is a clear and certain break. The laws around hunting are very clear. Unless I get out somehow on Monday, this will be it, the very last time.

Oddly enough I don't feel bad about this. In fact I am excited, excited about getting out into the woods and fields, excited about getting my guns and gear ready, excited about the drive up there. There is no sadness in this, at least not yet. For today, I am going hunting. That is enough excitement to keep me going. It's gonna be a fun day.

Thursday, 26 November 2015

She Makes Me Smile

Katherine makes me laugh... a lot, often. She makes me smile with her gestures, her walk, her body language, her motion. She says things that just make me laugh. Then there are the the things she does, the little personal oddities which make her a true character. She is just a fun person.

This morning was a great example. I was taking it easy, laying in bed, getting some extra rest when she walked through the door. For starters, she had walked the four blocks in -10 C temperatures rather than wait or ask for me to pick her up. She comes in the door, sees that I am still in bed, and says "Get up." It's an order, but not really. It's not even a demand. It's more of a strong suggestion. I said I was loving my extra rest to which she replied "It's time to get up."

She walked into the bedroom, tidying up, putting things away as she went. Then she said the truly magical words. "Get up. I make you coffee. That's what you want, right?" She hit the perfect note with her tone, a plea for me to get up and a reward for action on my part. Coffee doesn't just mean coffee. It means breakfast. I said I would get up and she disappeared into the kitchen.

When I did get up, I heard her rustling about in the living room. I knew what she was doing. She was re-folding the sheets I folded last night. My folding efforts, especially with the fitted sheets, were not up to her standards. I laughed when I saw her doing this. I knew when I folded them last night that she would redo them this morning. She laughed too. We both new how silly this was. We both know how important it is to her to have them folded "right".

Then, as I was getting dressed, she got busy in the kitchen, making coffee and preparing food. I noticed from the bedroom that she was doing something with the last ounce of rum I had left in a bottle in the kitchen. She wanted to dispose of the bottle, but had to do something with that remnant first. So, rather than waste it, she poured a bit into each coffee cup, added a bit of eggnog, and that was my morning coffee. Once again, she made me laugh. It's just her. She's funny.

I need laughter in my life. There are a lot of things which are not funny at all these days. There is the whole reason my sheets needed cleaning. That's not fun, or funny. There is my fast failing ability to get into my truck, to reach into my cupboards, to hold up a heavy glass. These things are not funny.

Yet Katherine, in the midst of all these sad things, always seems to make me smile. That's what I need.

Wednesday, 25 November 2015

Pun Intended

It's not just having ALS that makes my life difficult. It's having ALS and being in a wheelchair. Of course the wheelchair thing happens to many, if not all, pALS. We all end up immobilized by this illness. Some of us, however, end up in the chair sooner than others. Such is the case for me. The whole wheelchair thing compounds what would otherwise be simple problems for most people.

These last few days, probably since last Friday when I was feeling so bad, I've been struggling with something going hyperactive in my lower stomach. The burble and grumble of gas has been profound. The explosive reaction when on the toilet, and sometimes when not on the toilet, has been loud enough to make one think an accident had occurred on the street below. Unfortunately this has been accompanied by the expected rather loose stools, my daily visit to the bathroom becoming a liquid mess at times.

For most people, this would simply be an inconvenience. You go to the bathroom and blast that gas out. You go again as called upon, relieving the pressure on your system. You wipe your own ass. For me, going to the bathroom is a major excursion, an wearing exercise in heavy lifting, hard pushing, cleaning and transfer. Wiping my own ass is becoming a challenge. So I use the bathroom as best I can in the morning; I try to avoid repeated visits.

Yesterday I had a really tough morning, so tough the Katherine had to clean my backside up afterwards. In addition to the typical tough toilet time, I had a great deal of difficulty finishing off and cleaning myself. My lower bowel seemed to think that it should continue with its efforts even though I was no longer on the toilet. I was, once again, a shitty mess. Katherine can only be considered saintly in her efforts to deal with both my body and my emotions.

Unfortunately I had had some similar problems the night before; gas sufficiently active that the bedsheets needed changing. Katherine pulled them off and put on clean sheets. Then, last night, again, the very same problem occurred again. This morning it was the Home Care Aide who changed the sheets. Two nights; two sets of sheets. This is why I have several sets of sheets. I have a lot of laundry to do.

All of this lower end stomach problem is a compound effect. I have trouble with toileting because I am in a wheelchair. Thanks to ALS, I have trouble purging my bowels because my core muscles are failing. I have trouble stopping the evacuation because those same muscles which cannot push fail to engage the completion process properly. I have trouble cleaning myself because sometimes I cannot reach in while seated, nor can I stand to clean. And, as the old saying goes, you can never trust a fart after you reach 50.

Some days are just a mess. Yesterday was. Today started that way. Let's hope that today, it all comes out okay in the end. Pun intended.

Tuesday, 24 November 2015

Announcement Exhaustion

Way back when I was first diagnosed with ALS, I was very interested in all the research. I followed drug studies very closely, watching each development followed by each disappointment. I wanted to find something, anything, which could offer me even a smidgen of hope. As time went on, it became more and more difficult to face the constant disappointment, the constant reference to mouse models or future developments or potential treatments.

So I gave up. I don't bother with most of this stuff anymore. I don't read the research articles, the news stories, the Internet announcements, except in a few cases where the headline is well enough crafted to catch my attention. They are out there, in a constant stream since the Ice Bucket Challenge, as if the ALS movement has to justify its success with this wildly successful viral fundraising campaign. These announcements and articles are all geared towards showing success and value for money, showing how the IBC really has made a difference.

There is no doubt in my mind that the IBC did make a difference, that money which would never have been invested otherwise has been put to good use in funding research, medical studies, drug evaluations. I know this to be true. I also know that I still see the words "possible", "potential" and "future treatments" in almost every article and press release. It's frustrating, exhausting to see all this work with so little immediate impact.

Everything with this illness takes a very long time. It is such a complicated disease. My suspicion is that once ALS has been conquered there will be a great many neurological diseases dealt with in quick succession. After all, it's all about the neurons. I'm just getting tired of articles offering hope only to see it dashed in a veil of distant possibility.

I've decided I am not really going to pay attention until my doctor tells me one of these possibilities is now a reality, and I might get better because of it. Until then, I will let the medical professionals do the reading. After all, that's what they are supposed to do. I'm just the patient, nothing more.

Monday, 23 November 2015

Ali Steventon - A Sudden Departure

What do you do when death becomes the norm, when you get used to seeing postings of people you know, some of whom you know personally, who died last night? Ali Steventon died last night. She had ALS. I met her online and we corresponded about ALS, also known as Motor Neuron Disease in her home of Adelaide, South Australia.

She passed away last night, yet I heard from her just a couple of days ago. This is how it often goes with ALS; you expect people will die, but they seem to go suddenly. It doesn't matter that they have been seriously ill for some time, a candidate for respiratory failure for many months. It still seems sudden. After all, I was just corresponding with her online a couple of days ago. There was no warning, no announcement of imminent demise, no shout out over the Internet. Like most of us with this disease, she just stopped breathing one night.

I'm in a strange sort of club. As one of my friends once said, it is "the kind of club people are dying to get out of." In life, nobody gets out alive. With ALS, that becomes all the more apparent. There is no graceful aging, no sunset of life. It's a curtain, a blackout curtain, that hovers above you for months then falls suddenly, closing the last act of your life before you have finished your soliloquy. Your life's monologue, your living dialogue, simply stops, seemingly without warning. This is the group I am in, these players on a stage where the play ends without warning, abruptly.

It will be like that for me to. Everyone will say "but he looked great." I will, nonetheless, depart suddenly, without warning, just as Ali did last night. When my time comes, there will be no advisory notice, no advance email prompting family and friends to rush to my bedside. I will simply go to sleep one night and fail to wake up the next morning.

For Ali, for me, for anyone with ALS, or for everyone in your life as far as death goes, don't wait for that last call, that last moment, that announcement that the curtain will fall.  Be there before. Be here often. Listen to that last dialogue, even if it is not the last one. Those final words will be said in every life. Sometimes you get to hear them. Other times, like with Ali, like with me, you have to be ready for the sudden curtain fall.

Sunday, 22 November 2015

Happy Anniversary To Me

Today is November 22nd. This is my ALS anniversary. Three years ago today I sat in a cold hospital room where a neurologist confirmed that I had an illness with no known cause, no viable treatments, and no cure, a disease where the outcome was always a debilitating, frustrating death, a disease which would steal my muscles, my strength, and ultimately my life. I can still remember that one piece of advice he gave me after confirming my diagnosis; "If there is anything you want to do, do it sooner rather than later."

Today it is three years from that day, three years from when I was given that awful news. Three years. Three years in which my body has changed dramatically, continually for the worse. Three years in which my life has changed dramatically, some changes for the better, most for the worse. Three years in which I was supposed to decline and ultimately die.

My life with ALS didn't start a simple three years ago. My first symptoms were almost two full years before diagnosis. At first I attributed things to getting older. The clumsiness, the easy exhaustion, the weakness; these were happening because I was in my mid-fifties. Or perhaps it was my weight; I was a lot heavier than I should be. Then I thought it was a back injury. I made every excuse I could until I was forced to seek medical attention. That's when I go the word, and an prognosis of 36 months or less.

That I am still here, still typing, still getting around, still breathing, is a testament to the vagaries of this illness, to my unwillingness to stop living life, to the failure of statistics when it comes to individual application. The average ALS patient dies within 36 months of diagnosis. Clearly I am not average. I've seen many in my cohort pass away already, many others who are much worse off than me. I've seen PALS diagnosed after me who died well before me. I'm still here; they are not.

Three years is a short amount of time to live and a long amount of time to die. I have more time to live yet. For that I am grateful. My body continues to die as I live; for this I am somewhat less than grateful. I planned for 36 months. I budgeted for 36 months. Now that I am here I am in no hurry to leave. At the same time I find only limited pleasure in remaining. Living with ALS is a tough ride.

I'm now in that next step in the scale. 80% of people with ALS are dead within five years. This does not mean I have two more years to go. It means there is an 80% likelihood that I will be dead 24 months from now. Personally I suspect it will be sooner than that. I'll be happy to see my 61st birthday this coming July. That's my next big anniversary.

Saturday, 21 November 2015

Katherine Made My Day Better

Yesterday was a tough day, a really tough day, probably the most difficult I have had so far when it comes to living with ALS. As with so many tough days, it wasn't one thing, but a combination of many. When I woke up yesterday, the pain in my tailbone was sharp, stabbing me like a giant steel pin shoved up the base of my spine. The muscles in my back were in pain, sore and aching pain, along with cramping and the spacticity of ALS. Then there were my arms, my shoulders, the muscles in my neck, all of which were going through the same pain of overuse and cramps. I was a mess.

When home care came to help me with my shower, I couldn't get out of bed. So they washed me in place, a bed bath. It wasn't the best of jobs, but I was relatively clean. The HCA helped me dress, something I rarely allow. Dressing myself is my last vestige of true independence. Then she did my exercises for me, while I simply lay back and let it happen. When she was done, so was I. She left and I went back to sleep.

I stayed in bed all day, from morning to night, restlessly shifting my weight to minimize the back and tailbone pain. By not using my arms much, there was little impact of the ache from overuse. By staying in bed, my neck did not have to support my head, so it got some rest too. I stayed there as the sun passed through noon, as the afternoon shadows set in, as the dark of evening settled. I stayed in bed until around 5:30 PM. I hurt. I was weak. I did not want to move.

That's when Katherine came over to see if I was okay. I had texted her a couple of times during the day, letting her know I was alive, and letting her know that the pain "was killing me". She walked through the door and asked if I was dead yet. After all, wasn't the pain killing me?

Then she went to work. She got busy in the kitchen, making dinner and tidying up. The clatter of her in the kitchen motivated me to get out of bed, notwithstanding the pain. She fed me, although I did not want to eat. Her urging helped me get the barbeque duck, baby bok choi, and noodles out of the bowl and up to my mouth. She said I smelled funny, and I needed a haircut. So she cut my hair and I had a full shower; I felt better, I looked better, I smelled better. She gave me some Tylenol 3 she had from her broken arm back in January. The pain went away, quickly in my back muscles, slowly, but never completely, in my tailbone.

By the time she left to go home, I felt well enough to stay up and watch TV for a while. So I did. Even with that, I could still feel her presence, still smell her fragrance in the room. I missed her within moments of her departure. She made my day better.

Friday, 20 November 2015

I Know I Lack Empathy

When I was first starting out in my career, one of my early bosses sat me down one day and said to me, "You need to learn to develop some empathy." I said sure, then stared at him blankly, not knowing what he really meant. Years later one of my ex-wife's favourite accusations became that I lacked Emotional Intelligence. I knew she was saying something was wrong with me, I just didn't know what it was. A couple of years ago, my friend Cheryl told me I was self-centered. This hit home; it actually brought me to tears. But I didn't know what to do about it.

For all of my life, it's as if my empathy switch was not connected. I simply struggle, and often fail completely, when it comes to understanding other peoples emotions and feelings. I can be sitting around a table, completely unaware of the mood of others unless they either tell me or their overt actions make it perfectly clear. If you glare at me, I know something is wrong. I may be completely unable to understand why something is wrong, but I know something is wrong, and it's probably something I did, more likely something I said.

If there is anything which has held me back, both in my career and in my personal life, it has been this lack of ability, the lack of understanding. I am not sure why I am this way, not sure if it's a function of nature or nurture. I know that my Dad was kind of like this, except I think he knew how other people felt, but just didn't care. He would often tell me to think before I spoke. I thought I was thinking. I care; I just don't understand.

Much of the time I feel like I am watching a foreign film with no subtitles. I can see that there is language happening. I can see that there is an exchange of emotion. I just don't know what it is, or why it is. It leaves me at a substantial disadvantage when sharing my life with others. I come off as thoughtless, unfeeling, an asshole. The truth is that I just don't get it most of the time. Unless it is spelled out to me, unless it is plain as day, I am unlikely to be able to understand emotional messages.

My ex-wife has called me both egocentric and a narcissist. The first may be modestly true. I am certain the second is false. Cheryl was probably more on the mark. I really do care about the feelings of others, I just miss them in so many ways. I wish I could do better at this. I am afraid that at this time of life, with everything else going on, this is unlikely to change. So if I upset you, if I misunderstand you, if I seem oblivious to how you feel, it's probably because I just don't get it.

I am certain that this inability on my part played a large role in the failure of my marriage. Self-centered people don't make great life partners. I am certain that my nature has impacted my children in a great many ways. A lack of empathy does not make for great parenting. I wish I could go back and change it, but I can't. In fact I don't even think I can change it going forward. That bit of wiring inside my brain just doesn't seem to connect. It's a shame really. I could have done so much better if it did.

Thursday, 19 November 2015

I Made Katherine Cry

I made Katherine cry last night. This morning too. Well, actually it wasn't really me so much that made her cry as it was ALS. Usually Katherine is almost sanguine about the changes going on in my body. Her comment, often, is "you know this is going to happen." Sometimes, however, even she succumbs to the cruelty of this illness. She stops to think a bit about what is happening to me, what will happen to me. When she does, she cries.

Last night I was getting off of the couch, doing the transfer to my wheelchair. Katherine is the person most intimately aware of the subtle and not so subtle changes which have happened to me over the last year, particularly in the last few months. She has seen the inability, seen the loss of strength. She has seen her role in my life increase, as my ability falls.

Last night she was observing my loss of energy, how my general energy level had fallen in the last little while. It's true; if I let this disease get the better of me, the chronic exhaustion rises full and fast to the fore. Last night was one of those nights. As we were dealing with that, the subject of what might happen next was also part of the conversation.

As Katherine usually does in moments like this, she turned away from me so I wouldn't see her tears. She knows all to well how her distress impacts me; she wants to save me from that burden too. She went off to have her shower, came to bed, and burst out sobbing. When she finally could talk, we said little. I knew, I know. We slept, hoping for a better day today.

When we woke up, she did her morning routine, once again making me breakfast in bed. She does this as a treat for me, a wonderful treat. I sat up. She sat in my wheelchair. Then she started to cry again. She told me, through the tears, that she was crying because I was going to die. I comforted her as best I could; neither of us can deny this reality.

It is terribly unfair, terribly tragic that Katherine should go through so much of her life single, only to meet me now. It's not that I am such a bad catch; it's the passenger I bring along with me. Here she is, in love, really in love, for the first time in her life. And it's with me, someone who is guaranteed to die soon, too soon. Here she is, dedicating herself to a man who can do almost nothing in return, nothing to repay her kindness, generosity, passion, compassion. Her she is, with me.

That makes me cry sometimes too.

Wednesday, 18 November 2015

I Am Canadian. My Grandparents Were Immigrants.

The woman who comes in to care for me on Monday mornings is white; she was born in Canada. The woman who comes in to care for me on Wednesday mornings is brown; she was born in India. The woman who comes in on Friday to care for me is black; she was born in Africa.
Notice a thread here? Two thirds of my caregivers are immigrants. They care for me, just as well as the person born here. This country was built on immigration. Like your Blackberry, thank Mike Lazardis, an immigrant from Turkey. Want to meet the Queen's representative in Canada? How about Adrienne Clarkson or Michelle Jean, on from Hong Kong and another from Haiti. Did you enjoy the 2010 Canadian Olympics? John Furlong is an immigrant.
If you fear that there might be a terrorist in the Syrian immigration pool, you should think about the Irish immigration a hundred years ago. There were terrorists in that group. Terror knows no colour nor religion. And you are more likely to get killed by a bear or a moose here in Canada.
We must live up to our responsibility, our challenge, our destiny as Canadians. It is ours to show the love, compassion, and caring which will ultimately destroy terror. I remember a story told to me as a child, where a young, middle eastern family needed a place to stay, the woman vastly pregnant, the man a simple carpenter. They were told there was no room for them, that they would have to go somewhere else.
As a nation we committed the unpardonable sin of turning away Jews fleeing tyranny in days before World War II. Let us not be that closed-minded society once again. Let us not bar the needy. Let us not be that heartless innkeeper. Let us not be those who would turn away those in need out of fear from those they flee.
We are Canadian. Let's act like it.

Tuesday, 17 November 2015

I Am Failing

When I was diagnosed with ALS, my Functional Rating Score, an assessment which calculates the impact and progression of ALS through my body, was at 40. In the subsequent 8 months, my FRS fell from 40 to 30, a rapid progression, but not abnormally rapid. In fact the most common "steady" progression for pALS is about one point a month.

Then, in the spring of 2013, my FRS stabilized. It stayed at 30 for the longest time. This was not a result ALS suspending itself, nor any sort of temporary remission. It's because the disease had done enough to me to make the change visible. Now it was working on smaller increments, smaller things, less visible things. In fact I noticed changes in my arms during this period, change small enough that they did not impact my FRs.

Then, at about the same time as I went into hospital this summer with Urosepsis, my FRS score started to decline once again. It's not that my progression started once again; it had never stopped. It's not that it sped up; it simply reached a point where the losses had begun to affect my functioning. My arms had weakened to the point where I was impacted in my ability to do things.

Since last August, my FRS has gone from 30 to 26, a drop of one point per month. I am not surprised at this. My doctors had said that as went my legs, so would my arms go. I am disappointed. I had hoped it would take longer. ALS doesn't seem to worry to much about what I want; it just goes on with what it does regardless of what I do, or want it to do.

This drop in functioning primarily revolves around strength, my ability to lift, pull, hold, stretch. I can no longer pick up things I could once easily pick up. I can no longer push myself for as long or as far in my wheelchair. Slopes which were once possible are now impossible without help. Transfers are becoming increasingly difficult and tiring.

It's also affecting my breathing now. I find myself short of breath in almost any conversation. The least effort makes for heavy breathing. My core muscles have been going slowly for a while. They are now leaving me at a rate fast enough for it to affect my functioning, my FRS. My scores are falling; I am failing.

Monday, 16 November 2015

A Touch Of The Flu

It must have been a touch of the flu; that's the only thing I can come up with. Or perhaps a fast and furious cold, some other virus that creates its misery and leaves quickly. That is the only way I can explain the way I felt this weekend.

On Friday night I came home from the Cat 'n Fiddle. I felt fine. I went to bed, and still felt reasonably good when I got up Saturday morning. As the day wore on, I noticed a disconnectedness inside my head, a touch of dizziness now and then, a sense of out of body motion. I went on with my day, doing laundry, preparing food. I wasn't terribly hungry but as Saturday wore on, I wanted to eat, and eat I did. Then, late Saturday evening, I had my bathroom event.

On Sunday morning, or rather at about noon Sunday, when I finally woke up, I felt terrible. Every part of my body was in pain, either aching muscles or stabbing pain in my tailbone or pins and needle tingling in my feet or pulled muscle pain in my arms. I could barely move. I didn't want to get out of bed. Then my friend Tonny texted to say he was coming over to watch the football game with me, a visit for which I am very grateful. His company was enough to get me out of bed, moving about. That, and the three Tylenol I took with my coffee.

When Tonny and I were watching the football game, I transferred to the couch, relieving the pressure on my tailbone for a while. The pain in the rest of my body slowly dissipated, whether through the effects of the Tylenol or the distraction of beer and football. Regardless, I started to feel better. I continued to eat, continued to be hungry. Katherine came by, bringing noodles with her and making a sandwich for me. After Tonny and Katherine left, I stayed on the couch, not moving, actually thinking about sleeping there.

Finally, at about 3:00 AM, I made my way to bed, having dozed my way through the episode of the Ken Burns documentary on the Roosevelts which I was watching. I transferred to my wheelchair, went to the bathroom, successfully, and went off to bed.

This morning at 10:22 AM the Home Care Aide arrived, ready to put me in the shower and stretch me. Last night I had said to Katherine I would likely skip the shower. This morning I felt well, deciding to take advantage of the opportunity to get cleaned up. I even shaved this morning, something I haven't done a few weeks. After the shower, I got dressed and the HCA stretched me. I was about then that I realized I was feeling good, even strong.

I felt bad on Saturday evening. I felt terrible yesterday. I feel better today. It's got to be something like the flu, right?

Sunday, 15 November 2015

I Lost The Race

Last night was a shitty night, both figuratively and literally. Not the whole night, just that part which comes at the end, just before you go to bed, that part of the night where you are really tired and ready to call it a day.

For me the pre-bed ritual includes turning off the lights, taking my medications, making sure my jug is clean and empty, and, if necessary, going to the bathroom. Once all of this is done, I can transfer to my bed, undress, and make some semblance of getting into bed. I had completed all of my assigned tasks and was about to get into bed when my lower bowel announced that it had further work for me, RIGHT NOW!

I made my way into the bathroom as quickly as I could, positioned, adjusted, and locked my wheelchair as best I could, then made the transfer to the toilet. It was at that moment, when my body felt itself on the circular relief zone, that my lower bowel decided it was time. I found myself desperately yarding off my pants and underwear, all the while engaged in a combination of futile prayer and cursing at my lower end while fighting to pull, not withstanding the damage being done.

My jeans and underwear finally came off, just at about the same time as my body was finished with what it needed to do. I looked at them. I cannot describe what I beheld. It was not pretty; it was truly a shitty mess. Then I realized my derriere, still perched on the porcelain power seat, was a victim of the dragging slurry, well spread in the process. The dragging of my jeans, fully loaded as they were, across that mass of flaciditiy, could only have one result. It did.

Cleanup was sorely needed. I started with myself, using the built-in washing system in my toilet. Alas, it was insufficient for the task at hand. A shower was needed. So I readied a towel onto my wheelchair; I have sympathy for what that poor towel was called upon to face. I transferred, a sliding motion across the seat, somewhat onto the towel, finally in place. At this point I looked at the toilet itself; it would need plenty of cleaning. Still my shower waited for me.

Thus came the toilet. I wanted to get all the shitty stuff done before I had my shower. Better to be clean after cleaning. I cleaned the top of the lid, the bottom of the lid, the top of the seat, the bottom of the seat, the inside of the bowel, the outside of the bowl, and the pedastal itself. I even cleaned up the floor; yes, there too.

Next came my jeans and underwear. If you've ever cleaned a diaper, a really messy, large, well filled diaper, you have sense of this task. It took a while. In the end, if you will forgive the pun, I soaked them for the night, leaving them in the sink, hoping that I had done all that was needed. Surely there will be laundry today.

Then came my shower. This is the single riskiest thing I do. My inability to transfer safely, my inability to sit up without wobbling, my inability to pick things up from the floor, all of these and more make it essential that I have someone with me when I shower. I was alone. I did the transfer in. With an abundance of care and caution, I took off my compression socks and my shirt. Then I washed, as much as I could and as far as I could, without falling sideways. I grabbed the towel I had set in preparation, dried myself, and finally made transfer back. I survived.

Bed was next, and I happily went there. I transferred from the wheelchair and noticed I was shaking quite a bit. By the time I was in bed, I was shaking so badly I couldn't hold my cell phone. It was stress; the shaking was a response to the tremendous effort I had put out, just because my bowels beat me in a race to the toilet. I had enough trouble sleeping that at 2:00 AM I took a Zopiclone. I hate Zopiclone.

I finally slept. Unfortunately I awoke this morning sore in every part of my body, and still shaking. It takes me longer to recover, apparently longer than 10 hours of drug induced sleep. Last night I was shitty, this morning I just feel shitty.

Saturday, 14 November 2015


Most nights when I go to bed, especially when I am alone, I ask myself how I would feel if I didn't wake up in the morning. Most nights, I reply to myself that I am okay with that. I am not happy about it. I am not willing to take action to make it happen. I am, however, ready for it.

Last night when I went to bed, I asked myself that question, if I wanted to get up tomorrow morning. The answer surprised me; I said to myself "No. I don't want to die tonight. I'm just not ready. I don't want to go." It was unusual for me, different to feel this way. Usually I only escape those thoughts when Katherine is with me, when she is next to me.

I know why I thought this last night. Yesterday evening was the annual charity auction for the Calgary Hospice at the Can n Fiddle Pub. Of course I was there. But something else happened last night. Last night I was able to help in the setup for the auction. Certainly all I could do was hold a box and sort posters, but I contributed my time. I sorted. When asked, I produced the appropriate small poster for an item. That was all, it was nothing big.

Except that it was gigantic for me. I felt helpful. I felt like I could do something to make a difference, no matter how small, how insignificant. I don't mean an emotional difference; I know that happens every day. I mean a practical, real, substantive difference. Not money; there are plenty of people who make that contribution. I contributed with myself, from myself, of myself. It's hard to express the satisfaction and fulfillment that gave me.

I come from a family of "doers". We were raised with a version of help which meant getting in there, getting your hands dirty, picking up the heavy end, carrying the biggest load. I was raised in a family where helping someone had little to do with words. And since we had no money, there was little in that regard either. Helping, making a contribution, making a difference was all about action, physical action. That's why I went to bed happy.

Friday, 13 November 2015

The Price

There's a price for everything, and everything has its price.

It's an expression I have used for many years, a recognition that there is a cost to everything, not just an economic cost, a cost in terms of trade-offs with other things, a cost in terms of impact on other people, a cost in terms of consequence. Every change, every decision, every act comes with an impact. Nothing is free, a lesson I learned once again yesterday.

We've made changes to my wheelchair to help get rid of the constant pain in my tailbone. There are two specific changes; a hard pad has been added to my wheelchair cushion to stiffen it, and a solid back has been added to my wheelchair to keep my back straight and upright. The solid pad in the cushion makes it heavier, more challenging to lift off of the chair when I get into the truck. The stiff back means I cannot lean back or slouch back in my wheelchair.

The inability to lean backwards in my chair affects two things fairly directly. First, it means I cannot lean back when I pee into my jug. It may not seem like much, but that L-shaped bend at my hips and waist means the pathway from bladder to exit point takes a sharp turn along the way, restricting the flow of things, slowing things down, making the effort more difficult, messier, and longer.

The second challenge is that I can no longer change my center of balance. This is critical when going downhill facing frontwards. I need to lean back to shift my center of balance so I don't tip over frontwards. I can no longer do this, and yesterday it almost caused disaster.

We were leaving an office where I had gone to pay a bill. The cement sidewalk had a sloped ramp to the asphalt pavement. The joint between them was cracked, a sufficient crack to bring my wheelchair to a sudden stop at the bottom. Thanks to my stiff L-shaped position, my center of balance was too far forward when my chair hit that crack. I pitched forward, nearly diving completely out of my chair. Fortunately I was able to hold on just long enough for Katherine to grab my shirt-back and arrest the fall. I stayed in the chair.

Apparently the price of this new seat cushion, the one I got to help with my tailbone, is that I must now go down all but the smallest of slopes facing backwards. If the transition is wide enough, like where an alley meets a roadway, I can go frontwards, but on a long angle, eliminating the worst of the slope. You give, you get. That's how it works.

Thursday, 12 November 2015

Wheelchair Changes

For the last several months I have been dealing with pain at the base of my spine, in my tailbone. I've also had a lot of trouble with the muscles in my lower back. I've generally written this off as a side effect of life in a wheelchair. I mentioned this in my last ALS clinic visit and the occupational therapist recommended a visit with the folks from the Seating Clinic. They specialize in issues like this.

I met with them on Tuesday at Medichair, my wheelchair supplier. There were two nice young ladies, one an occupational therapist and the other a seating specialist. The sales manager for Medichair and his new trainee were also there, observing and ready to help with parts. The ladies from the Seating Clinic took my picture, measured me, measured my wheelchair with me in it, measured my wheelchair with me not in it, discussed this situation, then said I needed a harder base to stiffen the bottom of my wheelchair cushion and a hard back for my wheelchair.

I asked why.

Apparently, as I have been losing strength in my core and back muscles, I have been increasing my natural slouch. I have always been a lazy sitter, never one for the straight-backed approach of my Dad. I can remember, even as a child, him telling me to sit up straight. The instruction failed to take hold. Now that I can no longer sit up straight of my own accord, even if I wanted to, it puts increasing pressure on my tailbone and lower back.

This would be no problem in my healthy self. I wouldn't be sitting all the time. Now that I am, there is a constant pressure on my tailbone and the failing muscles in my lower back. This means pain, unrelenting pain, in my tailbone area. So I need these changes to my wheelchair to improve my posture, to help take some of the pressure off my tailbone and transfer it to my almost completely flaccid gluteous maximus, also known as my ass.

We've put these changes in place. It doesn't seem to have made a difference in the first couple of days. My tailbone hurts as bad as ever. My lower back put me in terrible pain when I moved about this morning; it's not so bad now that I am out of bed. They say it might take a week or two for me to get used to the new positioning. I think I can hold out that long, especially if I spend more time in bed and less time in my chair. That seems like a good plan.

Wednesday, 11 November 2015


It's Remembrance Day here in Canada today. In the US, it's Veteran's Day. Two very different memorials. In Canada we take time to remember the men and women who have died in the service of their country. In the US, they take the day to remember all those who have served in their military. Yet both of these memorials honour those who made that most basic of commitments, to offer their lives up in the service of a nation.

Both of my grandfathers fought in the First World War, as did my great-grandfather and my great uncle. My Uncle Adam fought in the Second World War. My Dad served in the Korean War. Two of my brothers served in the peacetime Canadian Navy. My nephew served in both the US Air Force and the US Army, serving his country over in Iraq. I am well acquainted with the process and impact of military service, although I have not served myself.

I struggle with war as a notion. I am certain it happens; there is no struggle within me as to the fact of war. My struggle lies in questioning the value of it. It is a final act of failed diplomacy, a last step where one nation or tribe or group seeks to impose its will, its values, on another nation, tribe, or group. As a student of history, I read much of what has transpired in the history of war, and ask myself what difference it really made.

This wondering about the notion of war in no way offers disrespect to those who have made the ultimate sacrifice, or to those who have served and survived. The fact of war means we will always have those amongst us who fight, those who are willing to die for our ideals as a nation. We did not ask for Hitler, nor did we ask for ISIS. Whatever global conditions bring these belligerents to fruition, when they arrive, nations of conscience must respond.

I simply wonder if it will ever be possible to live in a world where mankind seeks to use methods other than war to resolve disputes. We are a fractious species, prone to violence, willing to take up arms in ever increasing efficiency. It seems to be a basic in our nature, that we seek to kill one another in order to impose our will.

War, it seems, will ever be with us. Young men and women will ever be placed in the line of fire in order to serve their country's will. Civilians will ever die, victims of collateral damage. Economies, societies, cultures, whole nations will die out as a result. It seems such a shame, that this is who we are. Surely one day we will reach the point where Remembrance Day will be just that, a moment of memory.

Just not today. For me, I will remember. I will remember my grandfather, not as a member of the Old Contemptibles, but as a wonderful man who made my life better. I will remember my uncle, not as a soldier of fortune, but as the man who gave stuffed animals to my children and made them laugh. I will remember my Dad, not as a Korean war veteran, but as the man who gave me life, taught me much, left too soon. My remembrance will be as much about peace as war.

It cannot be so for all of us. Some are lost. Some return so damaged as to be lost all over again. For some, remembrance of the losses in battle are all too real. For those men and women, remembrance is fraught with pain and difficulty. I honour them, and look to a day when war will be a memory.

Tuesday, 10 November 2015

Odd Moments

You get some odd moments in living with ALS. Yesterday offered me a great example. Don't worry; I'll get there. Nothing so befits me as to take a short story and make it long.

Prior to being diagnosed with ALS, I lived in Abbotsford, BC. Changes in my marriage meant I had now committed to living in Calgary. Along the way I had gotten a cell phone from Wind, one with an Alberta number. This was in addition to my BC number; that was my business phone so I wanted to keep it. My BC cell phone was with Rogers, a different cell service provider.

When I was initially diagnosed, I kept both phones for a while. I wasn't sure how this was going to go, so I wanted to keep a foot in both camps. As it turned out, things went quickly over the first few months. I had to stop working in March of 2013, so I did not need my Rogers cell phone. I gave them a call, explained the circumstances, and asked to cancel my BC phone. They replied "Sure. That will be $400 to cancel your contract." I explained again, but they were unmoved, and un-moving. So I simply turned off the phone and never paid them. It was easy. I didn't care about any credit rating or harassment that would follow.

So for almost three years they have been trying to collect. First it was Rogers themselves through their credit group. Then Rogers sold the unpaid bill to a collections agency. They call me on an almost daily basis of late, notwithstanding that I have explained my situation to any number of people at Credit Risk Management, the collection agency. I mostly don't pick them up, but sometimes I do, just so I can explain again.

Yesterday I picked up the call. The young lady on the other end of the line said she wanted to discuss a financial matter regarding my Rogers bill. I told her I was terminally ill, unemployed, living off of a disability pension, and broke. Rogers was never going to get paid. She listened to my story and said she would update the file. I pointed out that several other people had said that too, and that I would be happy to tell my story again when Credit Risk Management called me the next time.

She didn't really know what to say after that. So she said what might be the oddest thing possible. She said "Thank you for the information. Good bye. And I hope you feel better soon." The emphasis is fine; for her I suspect it was a throw away line.

My reply, just as she was about to click off? "There is no feel better soon. Good bye."

Monday, 9 November 2015

I Will Remember

It must be terribly depressing to read my blog sometimes. I must sound like the worst sad sack in the world, with everything going wrong and nothing going right. To read, day after day, about how my illness is changing my life, how it is destroying me must make it impossible to keep up with the level of distress. I want people to know that it's not always bad, it's not always misery, it's not always pain.

While I may wake up in pain this morning, I wake up with Katherine cuddling in next to me, smiling at me, asking me how I slept. You can't get much better than that. While I struggled to get into my wheelchair, onto my toilet, into my shower, I did so in lovely apartment, in a terrific city, in a country blessed beyond measure. My country actually sends someone into my home every Monday, Wednesday, and Friday to make sure I am well cared for and clean.

While I may be in a wheelchair, I live in world where that is not supposed to be a real handicap, where businesses and governments are required to make it possible for me to live as full a life as anyone else. My wheelchair doesn't have to limit me, not does it have to define me. I live in a place where being in a wheelchair is not a death sentence, even when it is a life sentence.

Today I awoke to the snow falling outside, leaving an icing sugar dusting on the needles of the tree outside my window. The cars rushing by on the street below turned that snow into a squishing mulch, announcing their coming and going. The boulevard across the street from me is covered, with only the tips of the longest blades of grass poking through the thin skiff of snow.

Here I am, warm, dry, safe inside from this winter chill, a chill which will stay until April. I get to watch it all from my window. If I want, I can even go outside, and come back in when I get too cold. I have choices. I have freedom. I am fortunate. It's hard not to get depressed with this illness. It's hard to remember how lucky I am. Today, I will remember.

Sunday, 8 November 2015


Personal motivation is one of my most difficult challenges. When it becomes difficult to do everything, you don't really want to do anything at all. When it's tough to sit up in bed, it's easier just to stay there. When getting dressed leaves you in a full sweat, it's easier to stay undressed. When wheeling from your bedroom to the bathroom wears out your arms, it's easier to stay out of there. Unfortunately this is where the healthy part of my body cuts in; most days I have to go to the bathroom whether I like it or not.

I've always been self-motivated. It hasn't always been perfect. Like all of us, I've had days where all I've been motivated to do is stay in bed. Those were rare, usually the result of a lack of focus or lack of anything in particular to do. Once I had a target, a goal, a thing to do, getting up in the morning was easy. Achieving was easy. Now that I have no goal, no reason to get up, the difficulties in the process make it a lot easier to tell myself not to bother.

Yet here I am, up, awake, typing. Today my daughter Kate is coming for dinner. Katherine will be here too, along with my friend Brad and most likely Kate's friend Margaret. We are doing an oven roast with some baby potatoes and asparagus on the side. Preparing this meal was my motivation for getting out of bed, at 2:00 PM today. Oh, and I didn't want Katherine to catch me still sleeping when she gets here. Fear is a great motivator too.

Once again I remind myself that the biggest part of being alive is getting out of bed in the morning. George Burns, that great American comedian, once said that he started his day by reading the obituaries. If his name wasn't there, he had a cigar and got on with his day. This gig sure ain't easy, but I am here, still breathing. I suppose that, and having company for dinner, is enough motivation for today.

Saturday, 7 November 2015

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.

Friday, 6 November 2015

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.

Thursday, 5 November 2015

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.

Wednesday, 4 November 2015

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.

Tuesday, 3 November 2015

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.

Monday, 2 November 2015

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.

Sunday, 1 November 2015

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.