Friday, 30 September 2016

Sleep Works For Me

There are a lot of consistencies in my days, easy exhaustion being the most consistent. I tire very quickly, my energy mostly consumed in basic movements, things like picking stuff up, putting things away, and, or course, transfers. This morning, and last night as well, are terrific examples of how this easy wearing away of body and spirit affects the way I live.

Yesterday I did a couple of errands. I needed to get the arms fixed on my wheelchair, and I needed some milk and fruit from the grocery store. Katherine came along to help as she also had an errand of her own. So at about 1:30 PM we headed out to do these various tasks, with my getting home and settled at about 5:00 PM. I needed a nap, so I transferred into my Phoang chair from Ikea and just rested for a couple of hours before getting myself dinner. After a few hours of TV, I was done and went to bed at about 11:00 PM.

This morning I woke up at 8:30 AM, checked the clock and rolled over, closing my eyes and returning to restfulness. I did the same at 9:30 AM. Then, at 10:30 AM, my home care worker came and helped me get up, not an easy process with this broken foot. With my removable cast removed, I headed to the toilet and shower. Once complete, we did the rest of my morning routine including a full set of arm exercises and a small set of leg exercises on my left leg only.

Once I was done with my exercises, I headed out to the kitchen for coffee and a big bowl of breakfast cereal; I've given into the dark side of late, Frosted Mini-Wheats, the cereal simply acting as a carrier for sugar. By about 12:30, with morning routine, breakfast, and coffee done, I found myself exhausted. I had been up for a mere two hours, but the activity of the morning had been enough to wear me out. I needed a nap.

Just to put in in perspective, I chose napping over writing, something which is happening more and more lately. It is easier to sleep than it is to write. By 1:00 PM I was in bed, ready to sleep. I nodded in and out of slumber until 5:00 PM. This means I have slept about 14 hours since last night. I should be okay for the balance of the evening, right up until 11:00 PM. Then, rinse and repeat.

I am old. I am worn out. I am tired all the time. I am exhausted. This is ALS in action. My only advantage is that sleeping costs nothing, except for rent and utilities. I don't spend money while I sleep. I don't eat groceries while I sleep. I don't consume wine or Scotch while I sleep. It's looking a lot like sleep is a good way to use my time. It's working for me.

Thursday, 29 September 2016

Important Words

I've been thinking a lot lately about the death of my ex-brother-in-law, Peter Kehler; the suddenness of it, the unexpectedness of it, the shock of it. I find myself thinking about those last conversations, those last interactions before he had his stroke and died within a few days. In some ways it is a fortunate thing that his family had an opportunity to be with him, to say important things, to hold his hand, to sit with him.

When my Dad passed away, it was a similar thing, where people had time to come and visit knowing plainly that they would never get to see him again, to talk with him again. I had long since arrived at a place of peace with my Dad; I had no burdens to unload or crosses to unbear. There was nothing I needed to say to him; oddly enough my Dad and I had been having some fairly serious conversations in the years before he died, talking about his life, his losses, and what he wanted his last days to look like.

That kind of buffer time, that few precious hours between life and death, is not likely to be the case with me. I've noticed a pattern with PALS; they seem to be moving along just fine and suddenly one night they pass away. For such a long, slow disease, death seems to happen in an instant, without those lingering moments where you get a chance to gain closure in life. I am fairly certain that is what will happen to me. I'll be getting on with my life, then one day I will go to bed and my breathing will fail, or I will choke on my own saliva, or something equally quick and gruesome.

There will be no gentle slide from life to death for me. At least that's what I think will happen, but then again, this disease continually surprises me. Who knows? I might die from a heart attack or stroke, just like Peter. In general, though, odds are that it will be something from ALS that finally gets me, or makes me want to get myself.

Peter's departure was sudden, but not too sudden for precious last words and moments. My departure is slow; those around me think there's lots of time to spend with me yet. After all, my ALS is moving slowly, right? I hope that is true yet I know that it is not. There will seem to be lots of time, plenty of opportunity for that last conversation, that last glass of wine, that last road trip. Then, suddenly, there won't. I will die. Phone calls will be made. There will, in an instant, be no more opportunity to say important words.

Wednesday, 28 September 2016

My Fight

I've had to change my underwear twice today; once this morning while in bed, finishing the process several hours later, and just a few minutes ago after using the toilet. There were no disasters, just the usual nonsense that happens when you spend all of your time either laying down or sitting. Try farting when you are in a wheelchair, unable to lift a butt cheek, uncertain as to whether the candidate is a solid mass or just some gas. I have to change underwear; this process is tough enough with paralysis in my lower body. It becomes immensely challenging when you add a heavy cast and broken ankle into the process.

Several people have suggested I "go commando", an expression for not wearing underwear at all. This further implies a lack of pants, so the real suggestion is that I go bare-ass naked, sitting in my wheelchair. Actually I am compelled to do this for some periods of time regardless, as the effort in doffing my shorts is enough to make me need a rest. The effort of getting the new ones on is equally substantial, so I am in no hurry to complete the matching end to this two part process.

There are underwear out there which might be easier, things like EasyUndies. I am becoming more and more willing to accept the realities of my clothing needs, and these may become part of that reality soon. Not yet. I am still fighting to dress and act as if nothing is wrong with me. My only concessions to this damnable disease so far are the wheelchairs and commode chair. Oh, and the lift systems. Oh, and the grab handles. Okay, there are a lot of concessions to this damnable disease; I just hate to see or admit them.

People talk about fighting ALS. Actually there is really very little fight you can do against this disease. The real fight is trying to find a way to live with purpose while maintaining as much of your dignity as possible. I've lost a lot of personal modesty in these last few years with so many home care workers and medical professionals seeing me in various states of undress or incapacitation. These days I am forced to ask my HCA's to help me make sure my ass is clean; I am at the point where I can only mostly wipe my own ass; there's that last little bit I cannot seem to reach these days.

You see, that's the dignity thing. That's my fight, the fight to maintain a sense of self inside of a body which is clearly not up to the task. I fight to maintain my inner will to live, looking for a reason for my continued existence when I know perfectly well there is none. I fight to see myself as a self-sustaining man, all evidence to the contrary. I fight to find the humour, the irony, the idiocy of what this disease has done to my life, and then laugh at it. I fight to sustain, maintain, and retain my humanity. That's my fight, not against ALS, but against all other odds.

Tuesday, 27 September 2016

Fairly Uncomfortable Pain

I'm trying a day without Percocet, the powerful Oxycontin pain killer that I've been taking since I broke my ankle. One of the side effects of Percocet is sleepiness. Added to my normal desire for sleep, it makes a potent combination which seems to keep me sleeping almost all day and evening too. On top of the Percocet I have been taking Zopiclone more often to help me sleep through the discomfort at night. All in all, with my chemical cocktail, I feel very much like Rip Van Winkle.

One of the first things I have noticed is that I am not as sleepy. I still have the ever-present ALS fatigue; I can always sleep if I want to, I am forever ready for bed. Yet I don't have that persistent, heavy lidded, drowsiness that I have had the last few days. It is probably more than just the Percocet. I suspect the energy used in fighting the pain, the additional effort expended in the cautious processes of dressing and toileting, and the extra work with moving this damn cast around have all contributed to my tiredness. Percocet is out of that mix now, and I can tell.

The downside of this is pain. My foot hurts. It stings in general, although it no longer suffers from the deep seated throbbing which started this whole process. I can no longer feel my pulse pounding through the swelling, yet I can still feel the warmth of the swelling itself. Movement no longer stabs me; it just provides me with a sharp reminder that I am still broken in body.

I can deal with the pain. I've dealt with pain before. I won't say I have a high pain threshold. There are many who know me who would say I certainly don't. On the other hand I can put up with a hell of a lot of discomfort, for a very long time. That's where I am with this foot, with this cast, with this broken bone. It hurts; not badly, just enough to be fairly uncomfortable. I can live with it.

Monday, 26 September 2016

Filling Hours With Sleep

I wanted to do something yesterday, to accomplish something, to make things happen. I really did. Yet the best I could do, after waking up from more than 10 hours of sleep and eating breakfast, was to go back to bed and have a four hour nap. Then, after finally getting out of bed, I managed to do my laundry. By the time the laundry was folded and ready to put away, I was ready to go back to bed.

This need for sleep destroys so much of my day. I am certain it arises out of the exertion and energy needed to fulfill even the most basic of everyday tasks. Getting dressed, brushing my teeth, transferring in and out of my wheelchair, even the very act of sitting up; all of these leave me short of breath, sore of muscle, and just plumb wore out. Even typing is tiring, for God's sake. My fingers are tired, sore, stiff.

Right now I have been up for barely 90 minutes, yet my eyelids feel heavy. I could sleep once again, right now. I need to push past this if I want any sort of life, any sort of day. I need to drink some water, have a cup of coffee, eat some cereal or perhaps some prosciutto and cheese. I need to become active or sleep will surely overtake me. Yet I have no activity planned, no goal for today. I'm simply waiting for the hours to pass until I go to my trivia night; six hours, then I have something to do.

I have no plans for tomorrow either. At least I don't think I have any. I can't remember. Wednesday will be dinner with Kate, or at least it's usually that way. Thursday I have to go to the wheelchair store for repairs to my brand new armrests. They're going to want me to pay but I spent that money on my trip to Vancouver and groceries. Oh well, I'll get to it eventually.

I have all these open hours on my schedule, hours without a plan. At least I can fill them with sleep.

Sunday, 25 September 2016

You Choose

I am faced with a difficult decision, a challenge in the start of my day. Having successfully gotten up, done the bathroom thing, gotten dressed, and had some toast and coffee for breakfast, I must now decide what comes next. My choices are: a) go have a hap; b) do my laundry; c) do some writing, or; d) start a wine kit.

To be honest, starting a wine kit falls off the list almost immediately. I'm tired enough that I could take a nap. Making wine requires that I am alert, able to follow complex instructions. On top of that, making wine is a social thing for me. I don't want to do it alone. If I'm going to make some wine, I want someone here to help me, later to enjoy the fruits of prior wine making exercises.

Writing is certainly well up the list. The problem is that I am tired. Last night I went to bed at 11:00 PM. This morning I woke up at 10:30 AM. Home care arrived at 10:51 AM. I don't want to overstate the tiredness case, but this morning, when I woke up at 10:30 AM, I had to go pee. I went pee into my jug, and fell asleep while doing so. I suddenly awoke to find my jug sitting safely on my bed, my hands still in their proper place positioning and pointing, and the phone ringing for the HCA to come in the front door. Writing requires an alert mind, something I don't have all that often these days.

Then there is the laundry. It is an absolute must. Well, maybe not a must, but a should. I really should do my laundry. Well, I should but I don't really have to. I have enough clothes for another few days. I have clean sheets on the linen shelf for when my HomeMaker changes the sheets tomorrow even though I have had to change them once this week already, thus justifying my ownership of three sets of good linens and a back-up set of acceptable linens. Laundry can wait for a while.

Then there is the idea of a nap. I can, and often do, push beyond this feeling, making myself go when my spirit says to sleep. I don't really "need" a nap. I slept almost 12 hours last night. What good would another 2 or 3 hours of sleep do me. I will be no more alert, no more prepared to take on the world. On the other hand, having a nap is such a good thing. People need to do a lot more napping. I think that our world is perpetually sleep deprived. I have the time; there is no reason for me to fall in with that crowd.

I'll leave it up to you, the reader. I won't let you tell me what to do. Instead I will leave it up to you to figure out which I chose: nap, laundry, writing, or wine making.

Saturday, 24 September 2016

Not Wearing Jeans

Katherine is helping me out these days, regardless of our relationship position. I know she cares about me. I also know that there are still issues between us which must be resolved. Still, without her care and assistance in the last few days, life with this cast would be brutal. For example, this morning she came over and we took off the cast. My foot smelled terrible so she got a cloth and washed it off. I won't call the process painless; I was thankful for the Percoset I had taken earlier. Still, it was without a major event, and we let my foot air out for almost an hour. Then we put the sock and cast back on.

Home Care was here this morning, a nice middle aged woman from Bulgaria. She looked and sounded the part. On the other hand, she was terrific at understanding how and where my ankle might hurt along with my limitations of movement with and without the cast. I went to the bathroom, only to make a new discovery. With this cast on my foot, I can only reach one side of my bum to clean it. If I reach to the other side, it stretches the broken ankle inside the cast, and hurts like hell even with the Percoset doing its job. So I did the best I could and, unfortunately, she did the rest. These days I can sort of wipe my own ass, but not completely.

The real help from the HCA comes in dressing. I cannot successfully or painlessly reach down to my feet. Nor can I lift my my leg to where I can reach my feet. This means I can no longer put on underwear or pants. I need someone to start them for me, then hand the garments to me so I can finish the process with at least some sense of independence. I can put a compression sock on my left foot, but not on my right. The pain makes it impossible. I can, however, put the soft cotton stocking on my right foot, the one intended to protect my skin from the Air Cast.

It looks like I won't be wearing jeans for a while yet. They don't fit over top of the cast. So it's sweatpants or gym pants for me these days. I don't like them; I've never like the look of them, even the expensive one with matching jackets. Upper body dressing is not problem assuming you ignore my tendency to tilt over. I scared the heck out of the new HCA when I had to suddenly grab the M-Rail with my shirt half over my head. And yes, I made that "oh crap" noise I make all the time these days.

My routine is changing, has changed. It will change once my ankle has healed. It won't go back to the way it was, that routine is gone for good. I don't know what the new one will look like when I get rid of this cast, but I am certain of one thing. I will be wearing jeans again.

Friday, 23 September 2016


Notwithstanding that I am already in a wheelchair, this AirCast is a bloody great nuisance. Of course, so it the pain of a broken ankle. The break is not serious, more of a stress fracture from my leg folding under myself as I slid gracelessly onto my garage floor. It hurts like hell, two days on from the injury itself, even with me happily popping a Percoset each morning. I can't take them at night; that's when I drink wine. Percoset and wine don't mix well.

As to the cast, it is a clumsy great plastic affair which raises my foot about two inches higher in the footpad of my wheelchair, making it impossible for my right leg to fit under my kitchen table. My one option to fit at the table is to take my foot off the foot pad, cast and all, and let it hang free. This hurts, as the weight of my dead leg pulls down, the pressure building up in my ankle, the very part that hurts the most. I can do this for a while, but only a short while. Then the pain becomes enough that I have to lift my leg back up onto the footpad once again.

Getting dressed is difficult too. In fact I now need assistance in dressing. Because of the pain in my ankle, I cannot simply lean over to put on my underwear. So the HCA has to help me with it, pulling them on very carefully over my legs until they are high enough where I can take over. And compression socks! Forget it. They compress. They are designed to push inwards. Getting them over my toes and ankle is impossibly painful. There will be no compression socks this week.

Wearing jeans is also out of the question. It will be sweat pants for me for the next week or two, until the pain has gone down enough that I can twist and turn to get into jeans. The plan is that I will dress first, then pull up the pant leg of my jeans and put on the AirCast. Once the cast is one, we will try to get the jeans over top of the cast. That process, however, is at least a week away, far enough away for the worst of the pain to subside.

All in all, I'm going to need help in the mornings, so I have asked for Home Care to come in every day at 11:00 AM. They will help me dress, and perhaps make a bit of breakfast for me. At least in this I might get spoiled. As to the rest of it, it's a bloody great nuisance.

Thursday, 22 September 2016

Cast Off

The last 24 hours have been pretty painful. I managed to slide off my transfer board with my right foot twisted underneath me. It hurt at the moment, but when I got it out and straight, the pain went away. I was, at this time, headed out to the ALS Clinic for, of all things, a check on my soft tissue injury from my fall on Sunday night. So off I went, driving away in my truck.

After my visit at the ALS Clinic, where my neurologist said "Yep. Soft tissue injury.", I headed north, past my apartment and up to Crowfoot Circle and the Coop. I stopped for about a half an hour to rest; I was tired already from exercises, getting into the truck, getting out of the truck, and getting back into the truck. It was then, at about 6:00 PM, that I noticed the throbbing and pain in my right ankle. It wasn't bad, just annoying. So I went shopping.

As I spend my time rolling about the Coop looking for the things I wanted or needed, the pain seemed to rise with every bump and corner I took. It was then that I noticed swelling too, swelling well beyond the normal limits of my edema. It hurt, a lot. I was at the Coop at this time, so the only thing I could do was head home.

Once home I tried the good old fashioned McBride solution; Scotch. It doesn't have to be Scotch. Rum would do, or Vodka, or Gin. You get the idea. This self-medication treatment is applied internally, not directly to the wound, but to the body's pain center, the brain, via the stomach. Alas, even with two hefty glasses of Scotch in me, the pain, which had initially seem to retreat, pushed forward with the terror of a Napoleonic Imperial Guard charging in column.

I waited for a couple of hours, but my 11:00 PM it was just too much. I called the Fire Department. This is the correct thing to do when I have an incident. They sent an ambulance for me and carted me off to Foothills Hospital. There I was x-rayed and poked and prodded, a series of events which led to a substantial amount of crying and screaming on my part.

My right ankle has a small fracture in it. Not enough to be a break, but just enough to hurt like hell, to hurt through at least two Percosets. The doctors ordered up an AirCast for me, a kind of walking cast with stabilizes the bones with air cushions. Given that my foot is pretty much immobilized through paralysis, this AirCast is just added caution.

I will have this cast on for the next 6 or 8 weeks. During that time HomeCare will come every morning at 11:00 AM to make sure I am all right. They will try to help me dress or undress, as needed, and put the cast on or off, also as needed. I'll need a few pain killers to go with this, but that is another story. For now, the cast is on and I am underway.

Wednesday, 21 September 2016

Sore And Tired

Last night I went to bed at about 9:30 PM. I took a Zopiclone, which acted so fast that I couldn't remember taking my glasses off. When I looked for them this morning, they were not on the dresser where I usually put them My HCA found them in the blankets on my bed. I'm guessing I took them off and put them beside me so I could check something on my phone, then fell asleep so fast I forgot about them.

I woke up this morning at 8:30 AM, then dozed until my HCA got here at 10:15 AM. We went through my morning routine, something that feels good to me now, then did exercises. Everything was complete by about 12:30 PM, and here I sit at my table, writing blog, feeling like I could easily go back to bed and sleep again. I hate this disease.

Fortunately I have things to do today, things which will prohibit a return to bed for more pointless sleep. I have to go to the ALS Clinic, not for an ALS checkup but to see the neurologist about the injuries from my toilet tumble. I have some persistent pain in my upper left arm along with some stiffness in my neck and shoulder.

I don't doubt that for someone without ALS, these injuries would be minor, if they happened at all. For me, however, the weakness in my muscles in general, along with the diminished muscular healing capacity thanks to ALS, these injuries could last for as long as I have muscles in my arm. There is the distinct possibility that this ache in my neck and shoulders, that this pain in my upper arm, is the new normal.

On the other hand, I've had pain in this area already, even before the accident. This just makes it worse. How much worse is a wait and see kind of thing, although I am sure the neurologist will make more sense of it than I can. I just wish it hadn't happened. And I wish I wasn't so damned tired all the time.

Tuesday, 20 September 2016

Chronic Fatigue

Once again I find myself exhausted. It comes as no surprise. I hardly slept at all on Sunday night after my toilet tumble. On Monday Kate did all the driving, but it was still a 12 hour trip, something which can wear one out all on its own. Last night I got about 10 hours of sleep, just enough to allow me to wake up at 10:30 AM and get out of bed at about noon today.

Almost as soon as I was up and ready, a friend and I went down to High River, a drive of about one hour from my place. She had some errands to do, then we drove back. As I pulled into my garage, I needed to rest a moment before getting out of the truck. I fell asleep! Right there in the driver's seat! At least I was parked at the time.

This exhaustion is the constant in living with ALS. Every PALS I have ever spoken to has talked about being tired all the time, of chronic fatigue. That's what I have; chronic fatigue. It's not a syndrome, it's a part of having ALS. We PALS are just tired all the time. That's how it is.

The tiredness is not just physical fatigue; it's emotional fatigue too. The physical stuff is hard enough to deal with, where everything we do takes twice as long, is twice as difficult as it was before, until the day arrives when we can do nothing at all, and it's still tiring. Just breathing becomes an effort. Then there is the emotional stuff, the never ending flood of emotions, exaggerated by ALS. What is a small matter for most people becomes a giant matter when the constant emotional battle of ALS is added to it.

So, for the last few days, I have been pushed both physically and emotionally. No wonder I'm tired. I need a rest. I'm going to bed soon and I plan on sleeping until noon tomorrow. The I have to go see the neurologist to find out how the pulled muscles from my toilet tumble might impact my ability to function, both short and long term. That's both physically and emotionally tiring, all at the same time.

Monday, 19 September 2016

Toilet Tumble

I'm struggling to keep my eyes open. Last night, and particularly yesterday late afternoon, was sufficient disaster that I couldn't sleep at all last night. I lay awake, my mind racing, thinking about what had happened. I had fallen off the toilet. If that where the whole of it, then that wouldn't keep me awake. There is so much more to this story.

(The balance of this post has been temporarily removed.)

Sunday, 18 September 2016

One More Time, Every Time

This is the last day of my visit here at Mom and Ray's. It's been good. Mom and Ray ask nothing of me, place no expectations on me. I am here, and that's all that matters to my Mom. I know she wants me to be here more often, I know she is sad when I go. Ray is so good to us all and he takes such good care of my Mom. This is a good place to visit.

Given what has happened recently, with the death of my ex-brother-in-law, I am mindful this week of the "last visit" syndrome. I already deal with this in my own life, with the possibility that each and every thing I do might be the last time I do it. I am more aware on this trip that this might be the last time I see my Mom and Ray, the last time I can make this trip to the coast. I dismiss that thought quickly, but it is there.

I wonder if my kids or friends here in BC think about that. Do they wonder, these children of mine, if this might be their last opportunity to see me alive? When they visit, I seem so full of life, so positive. Once I am back in Calgary, the distance is so great that it is easy to put me aside, but for the reading of this blog. To them, I must seem strong, almost unchanged, as if I can go on for years yet. To those who see me daily or weekly, like Kate and so many of my friends, they see those moments where my energy has lapsed, where I am truly weakened.

On my part, I am constantly aware that this might be my last chance to say "I love you", certainly my last chance to say it in person, the last chance for a hug, the last chance to hold a grandchild on my lap. ALS is moving along in me in a sufficient pace to make me wonder about how I will be in three months, if I will have the strength to keep going. Some days it certainly doesn't feel like it.

I could be a long time before I get to the coast again, if ever. This may be the last time I get to tell Mom and Ray how much I love them, how much I care about them. They, most certainly, are not coming to Calgary. It is as difficult for them to travel as it is for me. For my children, there are opportunities, as long as I can hold out. They can make the trip, if they can afford it. Ricky made it recently and I so appreciated it. As young parents, though, Meaghan and Mary face the challenges of packing for, and paying for, children to come along.

These barriers that come between us fall so rarely. These opportunities to visit come so rarely. There are simply not enough of them. I want more. I want to see my children and grandchildren, to say "I love you", at least one more time, every time.

Saturday, 17 September 2016

Days Of Rain And Sea

The rains have returned to Vancouver. Actually, they never left. It doesn't rain much here in the summer; June, July and August are beautiful, warm and sunny. Mid-September it begins though. The low pressure systems roll in off the Pacific, bringing moisture laden clouds that cover the sky and block out the sun. They start slowly, perhaps a few days of rain. Then, by October, the fall rains come thundering in, storms and strong winds with them. As fall turns into winter, the rains turn cold, sometimes freezing, often just above freezing, as a thin drizzle that gets into every pore of your body. Spring changes those rains to showers, sometimes chilling, sometimes even a bit warm. Then summer comes again and it starts all over.

People talk about the "wet coast". It certainly is that. The price of the mild winters here in Vancouver is the constant rains throughout the fall and winter, the hammering winds which come along with some of these low pressure storm systems, the potential flooding, and persistent incursion of water into homes, cars, boats and every other form of enclosure. But, for all but a few weeks in the depths of a west coast winter, it is mild weather.

I've been sailing in every month of the year, with both sun and rain. A crisp winter day on board my boat is one of my finest memories, time spent "winter sailing" with friends or my kids. I remember days with the short run across to Bowen Island, sitting upstairs in the snug at the pub, then returning that short run back to Sewell's Marina where we kept the boat. These days were winter days, with snow on the high mountains reflecting brilliant sun, or days where the cloud cover was so low the tip of the mast cut the mists above.

One winter Meaghan and I went up to Squamish for the weekend. When we woke up in the morning, the windows were frosted and frozen both inside and out. It didn't really matter. We were dressed warmly. I lit the stove to make morning coffee, and suddenly the inside of the cabin was warm, although a bit damp. Thus is the way on a boat; water is everywhere. Yet this was a mid-winter run.

Our best mid-winter run, if not for Meaghan then at least for myself, was our run up to French Creek in the last days of December 1999. I remember getting a call in the middle of Georgia Straits from my work, seeking a solution to some problem or other. I had to tell them I was clearly unavailable. The skies were clear, the air crisp, the winds favourable. We spent the first night in Nanaimo, then the next with friends in French Creek, then back to Nanaimo. That's when the weather changed.

There are two things I remember about that run from French Creek to Nanaimo, amidst the ever worsening winter winds. First, poor Meaghan was stuck inboard, where seasickness reared its ugly green face. She made little of it, sticking it out until we made port. The other thing I remember, something I will never forget, is seeing the ominous fin of a solo transient Orca, slicing the water with its dorsal fin, making that rolling motion pattern as it moved southwards. There are only a few hundred of these Bigg's Orcas along the south coast of BC. It was impressive, and a bit frightening.

The last memorable thing about that voyage was the outcome a month later. Meaghan and I decided to leave the boat in Nanaimo rather than cross the straits in bad weather. It was probably the right decision, putting caution ahead of cost. The boat remained in Nanaimo until mid-February, when Chris Smith and I gathered it up and sailed it back home, once again beneath clear blue skies, in warm air, and a rolling sea which surfed us increasingly homeward.

I miss the sea. I miss my boat, the adventure and emotion attached to wind and weather. I miss the whales, the eagles, the porpoises, and even the Harbour Seals. I am grateful that I once had that life, a life like no other. I am grateful for those memories, those days of rain and sea.

Friday, 16 September 2016

Looking After Myself

I've figured out what to do about the commode situation, a solution that involves Ray doing nothing, and Mom not feeling like she should do something, a solution that I can use all by myself, even in the middle of the night, especially in the middle of the night.

I lay awake in bed last night, knowing that my body needed to release, feeling the lower end pressure that warns us all of impending doom. Yet I was in the apartment, in bed, with no access to a bathroom whatsoever. So I started thinking about how I might use the commode chair. I had forgotten the potty section of it back at home, so here I was with a toilet seat on wheels and no way to use it. So I got to thinking about catchment solutions.

The reality is that all I really needed was something to catch my release, and some way of disposing it. Then I thought about all those people who walk their dogs daily, picking up after them as they go. These folks pick up after their pups with a plastic bag and then dispose of the bag in the trash, usually something nearby. That would work for me too. All I needed was a bag, which fortunately my Mom has a few of, filled with wool, sitting in the bedroom.

I emptied a plastic bag and secured it to the bottom of the commode cushion using pins, situated in such a way as to catch the results of my work. I opened the window to create a breeze, clearing the air out of the room. This is very important to Ray, who has a nose like a timber wolf and can smell a foul odor through a brick wall. Then I positioned myself and let nature take its course. Things happened, after which I cleaned myself up, transferred off the commode, dressed, and took the offending bag into the garbage.

Ray was going to empty the garbage this morning. I know this because it was full when we went to bed last night. I just added a very small amount to its contents. He didn't even notice until I told him this morning. It's his home; he has a right to know how I worked things out. While not thrilled about the potential odors, he seems okay with me looking after myself. Me too.

Thursday, 15 September 2016

More Bathroom Fun

I know Mom and Ray's bathroom would be difficult. It's been difficult before. I'm not getting better, so the transfer would be worse, except we didn't even get that far. When we put the new arms on my wheelchair, the ones that broke about two days after I got them and are now held together by duct tape until the vendor replaces them, we had to put spacers on my wheelchair axle in order to allow for the 1/4" additional width of the clamps for the arm rests. That made my wheelchair a 1/2" wider. Now it won't even fit through the door.

I had planned for bathroom difficulties. My first fallback is my commode chair, which we have not brought up from the truck yet. We'll try to see if it will fit into the bathroom. Alternatively, if it doesn't, I can call the ALS Society of BC to see if they have the potty attachment; you know, the one I forgot at home. Although when I mentioned it to Ray he asked, since I can't get into the bathroom who was going to empty it. My silence was deafening, to which he replied "Oh yeah, look at the ceiling why don't ya."

Regardless, those are my first two options. If neither of those works, I will ask ALSBC if there is a facility nearby where I can use the washroom and perhaps get some help redressing myself. I suspect they will recommend the local emergency ward, and I can do that if I have to. Another option is to ask the ALS Society of BC if they can recommend someone to do home care here for the week. It will be costly, but it will work.

No matter what, I will find a way to make things work. That's who I am. That's what I do. I'm they guy who fixes things. Sometimes fixing involves duct tape, sometimes it involves potty chairs, sometimes it involves paying the price of my desire to see my parents.

Wednesday, 14 September 2016

The Ride West

I'm exhausted. It's been a long, long day on the road. Kate wanted to leave early, so she had me up at 6:00 AM! By the time I used the bathroom, had a short shower, and got dressed, it was 7:00 AM. By the time we got me loaded in the truck, it was 7:30 AM. That's when we finally got underway, and 12 hours later I arrived here at my Mom and Ray's place in Vancouver. Exhausted.

The last hour of the trip is always the most difficult for me. It's not that I don't want to do it; quite the opposite. I want to do it desperately. After getting to Abbotsford and dropping off Kate, I am so close to Vancouver, so close to my intended destination that I push on regardless of how tired I am. I have learned to reach into the depths and pull up that last little bit of reserve energy, expending it wisely in my mind, expending it so I can get here.

Driving through the mountains today was glorious. The road west from Calgary, weaving as it does through the foothills, giving glimpses of these giant crags shearing the ground ahead and piercing the sky above, showed beautiful and green today, with just enough trees turning to gold to speckle the forests and hillsides. The sun glistening of the high, snowy tops shone brilliant against a clear blue sky.

From the cold of the high mountain passes to the warmth of the central valleys and plateaus, the weather today held the crisp edge of fall in the morning and pushed to the warmth of the last days of summer as we wended further west. Yet through all of this, wildlife was noticeably absent. Not a deer, not a bear, not an elk, not a moose; nothing but domesticated beasts in green fields lining the roadside. At least the traffic was light and moved along steadily.

I love the road. I hope, every time, that this will not be the last time. I will forever look to that one last road trip, that one last adventure. I'm not sure when, but it will happen. Then? I don't know. I just know that today, with Kate along and the road clear, it was a terrific ride.

Tuesday, 13 September 2016

Road Trip To Vancouver

I headed to Vancouver tomorrow. While the purpose of the trip is sad, the opportunity to make this drive is something I look forward to. My daughter, Kate, called this morning and asked if I wanted to go. She has decided to drive down to Abbotsford for her Uncle Peter's funeral. I had previously offered to drive with her if she wanted, but she had, up until this morning, planned on flying. The flight option would give her more time with family and less time traveling. But things change, plans change, and now we are driving.

One of the things I like about myself is my ability to act spontaneously. It has become increasingly difficult as I have slipped further into disability from ALS. But I prefer to look at these difficulties as problems to be solved rather than roadblocks. I've learned that if I can be flexible and creative in approaching something, almost anything is possible. It just takes work, and perhaps some discomfort now and again.

We will leave early tomorrow morning with Kate taking the first shift at driving. I understand her desire to leave early; it gets her to Abbotsford around suppertime, and gives her the evening with her Mom and siblings. The funeral is on Saturday, so I will be in Vancouver for at least Thursday through Saturday, visiting with my Mom, my kids, my brothers, and my friends. I count myself fortunate to be able to do this.

The biggest challenge for me will be the bathroom. I have tremendous difficulty using the bathroom in Mom and Ray's apartment. I have my jug for going pee, but at least once a day I will need access to a toilet. So far I have been able to make things work at my Mom's place, but as I get weaker, that gets a lot more difficult. Since I cannot have a shower there at all, I usually try to get a hotel after two or three days. It's not cheap, but it works.

Once again, this is just another problem to be solved. At a minimum I could always go to Burnaby General Hospital and use one of their wheelchair accessible bathrooms. I could go to the mall too, but there is nobody there to help me if I get into trouble. These days I never know for sure. Or I might contact the ALS Society in BC; they are a terrific organization and might have some helpful suggestions for me. Worst case, or rather most expensive case, I could see about having some sort of home care come in for those mornings at my Mom's.

You see, there are solutions to almost every problem, multiple solutions. All I have to do is accept the challenge and outcomes. Surely I can do that.

Monday, 12 September 2016

I'm Not Alone All The Time

I was alone at home all day yesterday, without human interaction. I did post notes on Facebook and Twitter. Plus I called my Mom and spoke to Kate on the phone yesterday, but I don't count electronic communication as a form of human interaction. My first thoughts about a day like this revolved around how I was lonely; certainly losing Katherine has made a hole in my life. Then I stopped for a moment to think about how rude and unkind I was being to the many people who work very hard to make sure I am not alone, nor lonely.

Just the day before, Mike invited me out to a dinner theatre event. This was not free for him, not even close. These tickets cost money and yet he asked for nothing from me but that I enjoy myself. I did, terrifically. He even sat me with someone I worked with at the CBE, someone with whom I have socialized over the years, and years it is. Loralei and I met in May of 2010, when I first started my first project with the CBE. This seating arrangement guaranteed I had someone with me who could talk about our past, her present, and anything but ALS.

To complain about being lonely and all alone is to insult friends like Bobbi and Dion, who are regularly in touch with me, dropping by often just to make sure I am all right. In fact the other night Bobbi came here on her way from from another social event just to help me put the fitted sheet onto by bed. Dion regularly comes by to check up on me or help me fix things around the house. David came over just last Monday, a week ago now but still not in the distant past, and spent his afternoon cleaning my spare room.

To complain about being lonely and all alone is to deny the great gifts of friends who ask me out, who take me out, like Anna who checks to see if I want to go for a beer at Milestones in the mall across the street, or Dan and Emily who arrange movie tickets and take me to the movies, or Emma who invites me to dinner at her place just to be sure I am eating vegetables.

To complain about being lonely and all alone is to deny the many others who make themselves an active part of my life, people who are always here when I call, people like Anne and Tonny and Andrea and Elizabeth and Dan and Anisa and, and, and, and. Then there is Kate, without whom I would simply be lost.

I admit it. I need attention. I need someone around me a lot of the time. I get to feeling lonely and alone very easily. It's a function of both my personality and this damned disease. When I am alone, I think about things, never a good idea with ALS, unless you can think about positive things, something difficult for me when I am alone. When I am alone, I miss the physical human contact of someone curled up next to me on the couch while we watch a movie. I miss the intimate conversation, the quiet company, the helping hand.

I don't like being alone. Thankfully it happens a lot less that I let on.

Sunday, 11 September 2016

What Lies Ahead

It's easy for me to understand why people in situations like mine, situations of illness or other extreme distress, turn to God or some other religious faith. It's almost impossible to accept that such a rare illness is not rooted in some supernatural intervention, or that supernatural intervention is the way to respond to something so unbelievable as ALS. To go a step further, when seen in the context of a complicated and confusing world, for so many people there is no other way to see it than through some sort of "higher power" lens.

The online ALS forums are full of it, people propounding the power of Jesus, people inciting others to pray, memes with beautiful sunsets or pictures of angels providing some form of scriptural wisdom. It seems that those who post these items feel that Jesus or God will only work if they post it in some sort of public forum, as if their belief was not so much personal but depended on the affirmation of others. They seem to be strengthening themselves by sharing, at the same time as believing their random post on some Facebook group may actually bring a cure or a treatment.

I see it in Facebook scams all the time, the "like farming" scams intended to boost the popularity of a given page or user, thus increasing the advertising revenue associated with the page. The whole "one like = on prayer, one share = one miracle" kind of thing leaves me incredulous that people think so little of their own beliefs that they would click and think they are making a difference. The truth, of course, is that their click allows them to feel like they are doing something while in fact they are doing nothing, other than helping some unknown person make money.

Having a disease like ALS, a disease where there is so little to be done, a disease where the consequences are so massive, must be almost incomprehensible for so many people. To have to stare into an abyss where you are compelled to admit there is no reason that you have this disease, that it has attacked you randomly, that you cannot be cured or treated, is terrifyingly isolating. The sense of aloneness is almost beyond comprehension. So people look to God for answers.

Sadly, even God has no answers, unless you can accept that most threadbare of expressions that "God works in mysterious ways", which is, of course, no more of an answer than any other. This is why adherents are called upon to have faith, to believe in things unseen, to cling to the gnostic and embrace the spiritual world. If we cannot find, or understand the answer, then we need to believe that there is one out there somewhere, somewhere in a supernatural world beyond this one.

Then there is the final darkness, death. The terror of not knowing what happens next is just too much for a great many people. Better to believe in something unseen, some unknown and unproven text based on visions and dreams, than to simply say "I don't know what happens when I die." And so we post memes about how wonderful heaven will be, tell stories about what might be there.

I have no answers for this. I am actually quite comfortable with the fact that nobody knows why I have ALS. I am actually quite comfortable with the fact that I don't know what happens after I die. So far the best evidence I've seen is that I will be no more, except in the memories and experiences held by those I leave behind. When those fade, I will be gone from history, from time, from space.

I believe that life after I die will be the same as life before I was born. I was not a part of it then, I will not be a part of it then. I was not, then I was, and soon again I will not be. It is not nihilistic. My live has had purpose. My life has had value. I did my job while I was here. I procreated. I made my world a better place as best I could. That's what I leave behind. What lies ahead is unknown. To be at peace with that means to be at peace with everything.

Saturday, 10 September 2016

My Shirts Don't Fit Anymore

I went to put on one of my favourite shirts today, one I have not worn in some time. It's an older style pullover shirt with leather threading rather than buttons. It's a brilliant white cotton, and on the back it has an embroidered design of two Celtic Lions rampant, in opposition, over top of a loose Celtic knot. The threading is the beautiful, silky Royal Blue, while the tongues of the lions are in red thread.

Unfortunately I can no longer fit into this shirt; I've grown too fat. The shirt is a Large and on a good day these days I might be an XL, but more likely a bit larger than that. Of course, as is common knowledge around me these days, all this extra weight is around my torso. My lower legs are getting quite skinny, as are my upper arms. My thighs are simply loose bags of atrophied muscle. Yet my torso expands, or at least it changes shape such that I have saggy boobs and a giant belly.

It would be so nice if I could go for a walk or do some aerobic exercise to change this weight distribution pattern. I would love to be able to swing an axe once again, or cast a fishing line for hours on end, standing in the river flow, as I once did. Hell, even riding a bicycle would be nice once in a while, something I haven't been able to do for five years now.

I've complained about this before. I will complain about it again. I know that if I want to lose weight I can reduce my caloric intake. But I can't exercise. I can't burn those calories I take in, nor those calories stored around my waistline. Also, I wonder if I reduce my calorie intake, what will my body consume? Some of it will be muscle, and since I cannot exercise there is no way for me to rebuild that loss.

Being fat is something I have gotten used to, though not happy about. The folks at the ALS clinic insist that the weight is helping me fight ALS. I believe them. But I don't have to like it.

Friday, 9 September 2016

Peter Kehler Died Last Night, But Not From ALS

My brother-in-law died last night, or rather, I should say my ex-brother-in-law. The funny things is that you can divorce your wife after 30 odd years of marriage, but no never completely leave behind the family, her family. While I was not interacting with them, I am compelled to remember that this man, Peter Kehler, was Uncle Peter to my children. His children are cousins to my children. And today my ex-wife is grieving, along with the rest of her family, for the loss of someone so close, someone they loved, someone who was a part of my life for many years too.

Peter died from a stroke. Well, actually he died from a variety of causes related to the aftereffects of a stroke. He had the stroke on Saturday, seemed to recover a bit on Sunday and Monday, and then, on Tuesday, he took a turn for the worse, his internal organs slowly shutting down on Wednesday and Thursday, things finally coming to an end that evening. This is often how it goes with a stroke. I am so sad to see this happen to his family, to my family.

Peter was a mischievous sort of fellow, the kind who could get away with almost anything thanks to his ready grin and the twinkle in his eye. He was a tease, to his wife and almost everyone else around him. He was always ready for the next silly thing to do, like driving his truck over the thin ice of a frozen lake to see if the ice would hold, or pounding through the bush in chase of a deer or moose while reminding me that there were grizzlies listening to us just to see how I would react. He was an avid hunter, fisher, camper, and even more avid father, husband and grandfather.

His death reminds me of something my friend Chris Gordon said to me some time ago. I was talking about how ALS would kill me, what would likely happen. Chris looked at me and said "You have no idea how you are going to die. My money's on a heart attack, but it could be a car accident or any number of things." He is right, of course.

Statistically, the top five killers in Canada for men in my age group are cancer at 30%, heart attack at 20%, stroke at 5%, chronic respiratory disease at 4.5%, and accidental injury also at 4.5%. I already have heart problems, or more correctly, athersclerosis. I am taking all the right medications, those same medications also helping in preventing or lessening the damage from a stroke. Still, cancer is way up there, and I am not immune. Or, as I often say, I could get hit by a bus.

All of these other things vastly outpace ALS, which sits at somewhere around .003% of Canadian deaths. In fact I've already had one minor heart attack during the time I've had ALS, a heart attack brought on by plaque blocking an artery, plaque which could just as easily formed a clot and moved into my brain to cause a stroke.

We do not know the means and timing of our demise. No matter what I say, not matter what my prognosis, no matter what I plan for, I simply don't know when or how I am going to die. Absent all other factors, cancer seems most likely, or another heart attack. Still, somehow I think dying from ALS related causes is the most likely. But when? I've already beaten the median. That happened last November. The bell curve breaks into a long tail at 5 years post diagnosis, by which time 80% of ALS patients will have died. I suppose that's my next marker, in about 16 months. We'll see.

Thursday, 8 September 2016

Problem Solving

One of the reasons I do well, even with the worst that ALS has thrown at me so far, is that I have that kind of "engineering" mind. I see life, or most of life, as a series of problems to be solved. Now I know, deep in my heart, that this is more to it than that. Yet each day, when faced with a new challenge, I know that my job is to fix it, to make it work, to find a solution and move forward.

There are, of course, problems which cannot be solved. For those, you simply work around them. When my legs started failing me, I got a cane. When I could no longer stand, I got a wheelchair. Can't reach something in the top cupboard? Use the lift mode on the power wheelchair. Can't get on or off the toilet? Use a commode chair? Can't pay the bills? Ask for help. In fact for many of the problems I face, asking for help is one of the best places to start.

I think if you take your emotions out of the mix and approach life as a problem solving game, you can have a lot more fun. It's possible to see the humour in things, to propose outrageous solutions, to try that which you have not tried before. The key is to have no fear of failure. The problem, of course, is that whole "emotions" thing. They are ever present. You can't really take them out of the mix. You just have to understand that they are another facet of the problem, another thing to resolve.

It is in my nature to find the humour in these things, to see the absurdity of life in general, the irony in all things. I get a fantastic truck so I can go fishing and hunting, then I decide to give up fishing and hunting because ALS makes them too difficult. Note that I did not say I can't go fishing or hunting. There are solutions out there for me. I just can't afford them. So rather than ask for help, I decide to let that part of my life go. Even so, this is, in fact, a solution. Sometimes the best solution to a problem is to avoid the problem altogether. Other times, you face it, you laugh, and you try to figure it out.

Wednesday, 7 September 2016

Commode Chair Disaster, Almost

It could have been a disaster, a catastrophe where I ended up on the floor, injured, unable to move; a catastrophe which, if I was fortunate, would have meant time recovering from injury, likely a period of hospitalization. All because of a little button on my commode chair wheel. It had been accidentally pushed in, and the commode chair wheel fell of. Fortunately I noticed it before it made its final departure from the chair itself, and thus saved myself.

I am not sure how that button got pushed. There are a thousand possibilities. That button is the release button for the wheel, called a quick release. When pushed intentionally, you can pull the wheel of immediately, an action very useful for packing and transporting a wheelchair, or commode chair. Almost all decent wheelchairs have this button.

The commode chair, however, has a less expensive version of this button than my manual chair. With my manual chair, the button is large and set flush with the center of the wheel hub. It's also designed so that if you push it, it does not release the wheel immediately; you have to both push the button and push the wheel to get it off. This means you can sit in the chair and push that button all day, and nothing will happen. The wheel will stay in place.

With the commode chair, the button, also set in the center of the wheel hub, is a less secure action. When you push it, particularly if nobody is in the chair, it will release the wheel immediately, without pulling hard on the hub. So what I think happen is that someone accidentally hit that button while moving the commode chair. It was most likely me, or it could have been anyone else in my apartment over the last few days. The chair was good on Monday morning, but David and I moved a bunch of stuff on Monday afternoon and I was yarding that commode chair out of the way with a pretty firm fling. What happened at that moment is the wheel was released, but not enough to come off.

Move forward to this morning. Without knowing that the wheel was loose, and it didn't look like it, I transferred into my commode chair. By the time I got into the bathroom, I noticed the wobble in the wheel. By the time I got positioned over the toilet and had locked the wheels, I could see the exposed axle shaft and the wide gap between the wheel and the chair. I knew it could come off at any moment. After my toilet time I called my HCA; this is precisely why they are here when I shower, for these kinds of situations or emergencies.

I very tenuously and carefully wheeled myself the few inches towards the shower and immediately put down the shower bench. While Michael held the commode chair steady, I made the transfer to the shower bench. He went to roll the chair, loose wheel and all, to the living room where I could fix it. He was no sooner out of the bathroom when that wheel came off completely and the chair fell over.

There but for the grace of God was I. I an easily imagine what might have happened had I not been away of the loose wheel. I can imagine myself falling sideways in the shower or in the bathroom, my body smashing to the floor with all my weight, my weak arms and useless legs almost completely unable to prevent or protect. I would have taken quite the beating. I might have been seriously hurt.

Fortunately I was not hurt. Fortunately I noticed the change in the way my commode what was rolling. Fortunately I had the HCA there, and I have the HCA there, when I take my shower. But there are times, many times, when I am home alone and use that chair. I plan on being more diligent when getting into it, checking more often to make sure it's all in one piece. I don't need this kind of trouble.

Tuesday, 6 September 2016

Fat Reserves

My lack of desire for cooking continues. It's been like this for a few days now, perhaps since about a week ago. I don't feel like cooking, and I don't feel like eating. I've been surviving on prepared foods and leftovers. Now all the leftovers are gone, nothing in my freezer. I have the ingredients for Bolognese Sauce for spaghetti on the counter and in the fridge. I have meatballs as well, ready to go. I know I won't make it tonight. I don't feel up to it.

That's the way it goes with so many things for PALS. First we lose the energy to do something, then we lose the ability. That goes for using my legs, using my arms, and eventually using my mouth. First it will take so much energy to do it that I will do it less and less, and finally I will not be able to do it at all.

I know that a part of this is depression. Part of it is effort too, the effort of cooking and the effort of eating. It might be easier for me to go across to the mall and get a burger at the food court, or perhaps something else. Yet even that requires energy. I will have to transfer to my PWC, go and get the food, then come back and transfer out of my PWC. It's tiring for an already tired body.

Fortunately Kate is coming for dinner tomorrow. I will be forced to make something; she will offer to do the cooking but I need to do it for myself. It's odd to think of forcing myself to do something which was once such an integral part of my daily activity. It's happened before though, where I would have to make myself expend the energy, for example, to go for a walk or climb a set of stairs. Eventually I just stopped, and then I couldn't do it at all.

I'll cook tomorrow. Tonight, I'm not sure. I have plenty of stored fat reserves. Perhaps this is how I start using them up.

Monday, 5 September 2016

Watching Me Go Through This

A couple of days ago I was talking with my friend Chris Smith. We were talking about being parents, about what it does to your relationships with your kids when you go through a divorce. He said that it takes some time for the situations, and there are many, to finally work themselves out. My response was that time was something I didn't have, that the recovery of my relationships with my kids had to happen in a compressed format.

He went on to say that it wasn't easy for them to see me going through this, and it certainly wasn't easy for him or any of my other friends. I thought about that, both when he said it and for much of that evening. I really don't know what it is like to see this from the other side, to watch it instead of to have it. My Mom tells me its awful, and I can especially understand that. As a parent, you never want your child to go through anything difficult, and this is one of the most difficult things I have ever dealt with.

As for my kids, I have trouble putting myself in their shoes. My son, Ricky, lived with me for the first year of ALS. He saw the rapid progression, the loss of my legs, the scary transition from walking to using a walker to using a wheelchair. He saw me fall, more than once, while trying to stand. He traveled with me, spent a lot of time with me. Now that I think of it, at 22 years of age to be with your father as he slowly disintegrates and to be able to do nothing about it, that would be very difficult. No wonder he had such a tough time here that year. I miss him; I wish he was still nearby.

My daughter Kate is here in Calgary these days. She sees me often. She hears regularly about my losses, the changes in my life. She sees me when I can't put things away or pick things up. She sees me when I have trouble transferring from chair to couch and back. She hasn't seen progression as much, not the way Ricky did, She sees and hears enough though, and it must be hard on her. I know it is. She says so at times.

Mary and Meaghan both live with their own families out on the coast. I know that Mary reads my blog pretty much every day. Given the honesty with which I discuss this disease, she has to know and feel a lot. I know she does. Meaghan will read my blog periodically, at least I think she does. I know she will refer to it at times. I know she read some of the nasty stuff I was writing while I was going through my divorce and a rapid collapse from ALS, both at the same time. It's too bad, but it is what it is. Neither of them, however, has had a true witness experience of what ALS has done to me.

That is not to say that Mary and Meaghan are not sympathetic, that the do not care. I believe they care deeply. I just don't know what they think of all of this, how they feel about all of this. I have a pretty good idea what Kate thinks; I talk to her every week. Ricky has had a good look at what this disease did to my emotions and spirit. I know they all love me and care about me. But in truth, I really don't know, truly, how they feel, all of them. I just don't know.

Sunday, 4 September 2016

I Can't Give A Shit

I've been struggling these last few days. I can see it in my blog posts and feel it in my general demeanour. However as I look at those posts and think about the things which have upset me, I realize that what is bothering my on the surface is not what is bothering me in reality. My friend Mike once said that I go into a depression every time I get a major new piece of equipment, most likely because it reminds me once again of my progression. He's right.

So it's time to face it, time to say it publicly, time to deal with another new reality, although not yet a "fait d'accompli". I no longer have the muscle strength to get on and off my toilet, or more precisely, off my toilet. I can still get on, but getting off has become, or will soon become, impossible. My arms simply cannot move my body up off the seat and over onto the chair. I'm not even strong enough to do it as a slide or push, not in one movement, nor two, nor ten. It's just not there.

I do have my commode chair these days, the chair I got when I realized how difficult and tiring it was to make the multiple transfers when I needed a shower. First I would transfer from my bed to my wheelchair, then from the chair to the toilet, then back from the toilet to the chair, then from the chair to the shower bench, then from the shower bench back to the chair, and finally from the wheelchair back onto the bed. Six transfers to start my day. With the commode chair, there are but two. So I can use the commode chair, yes.

The reason I don't like using the commode chair on days when I don't have a shower is that the commode chair makes it more difficult for me to wash my rear. I'm never really sure how clean it is. The toilet, however, has the bidet spray. If I use the toilet with spray seat, I get very clean in my nether regions. For someone in a wheelchair, this is tremendously important.

There is a joke in all of this, of course. I now can no longer give a shit, unassisted. If I want to give a shit, someone has to help me. Hmmmmm. On the other hand this has very serious implications for travel. I can no longer go or stay somewhere, such as in a hotel or at my Mom and Ray's place, unless I have help. In short, solo travel is now extremely unlikely, unless I take my commode chair on the road with me. I am losing all vestiges of my independence, and most of my dignity along with it.

I am working on a solution to this, however interim it may be. Ultimately I will lose all ability with my arms; not quickly, but eventually. In the meantime, I have re-purposed one of my heavy plastic cutting boards into a short transfer board. For some period of time, I don't know how long, this may, and only possibly may, allow me to make the transfer. I tried it this morning; it was not easy. It was, however, workable, for now.

This is perhaps the toughest thing. Every time I face a new loss, every time I face a new challenge, every time I face a new difficulty, I must learn a new way to do something which everyone not in a position like mine takes for granted. Next time you give a shit, think of what it must be like to need help, not just with getting up and down, but with cleaning your own ass. That's where ALS is taking me. That's a pretty good reason to be upset.

Saturday, 3 September 2016

I'm Losing It

Something has happened to me this week, something not good, something in my mind and emotions. I seem to be losing it a bit, losing track of time, of things, of tasks. When I woke up this morning I had forgotten what day it was. I had to look at my phone to find out it was Saturday.

I did wake up this morning, at about 10:30 AM. Then I dozed in bed until about 2:00 PM. I finally got out of bed about 45 minuted ago, the call to the toilet to strong to ignore. I am feeling a bit lost. I haven't cooked a meal since Tuesday, nor have I had any strong drink since then. No wine, no beer, no Scotch, no nothing.  My diet has been leftovers, toast, water and coffee. I've been having real trouble getting to sleep at night, taking a Zopiclone almost nightly this week. I didn't last night, just to make sure I could do it, but I also barely slept at all.

The last time I was out of my apartment was a couple of days ago, when Dion took me to Costco and later that day when I went to the movies with Dan and Emily. Since then, I've been home alone, having no human contact, interacting with the world through my computer and cell phone. It's not long, but it feels like a long time for some reason. Perhaps I am just lonely.

I've talked to my Mom daily, something important to me. But other than that, nothing. Even today, knowing full well I am running out of one of my important medications, I am resisting the trip over to Safeway, somehow afraid of the effort involved in transferring to my PWC. This would be an introverts paradise, except I am not an introvert.

I wonder if I am giving up, if this feels like what it feels like when you quit trying? I don't think I am. I think I am just out of step with my own reality, with myself. I think I am a bit lost in the wilderness right now, not the wilderness of ALS but the wilderness of my own emotions and thoughts. I am becoming afraid, truly afraid, of putting myself out there, at risk. I feel safer here at home, in my hermetically sealed life, safe within the womb of my apartment.

Am I done? I don't know. My body is still partially functioning. My mind still works, mostly. But my spirit? There I am not so sure anymore.

Friday, 2 September 2016

No Glasses

I have poor vision. As I age, it's getting worse, just as it does in so many people. This has nothing to do with ALS; it's just another one of the many facts of life I have to deal with. On the other hand, I suffer from insomnia combined with exhaustion. It sounds weird, and it is. My body can be totally exhausted but my mind is whipping along at top speed. So I take the dreaded Zopiclone to help with my sleep.

Today both of those issues collided. Last night I went to a movie with friends. I had a terrific time; the movie was a blast. Then, after the movie, I took the CTrain one station down the line towards my apartment. I got off at a station called Dalhousie. Normally from this station I would head home down the roads of the Varsity area, which are on the west side of the tracks. This time the night was pleasant, it felt good to be outside, so I went the long way, along the east side of the tracks through the Dalhousie pathways.

It was a safe and wonderful ride. The pathways are all smooth and run between the condos and playgrounds in this part of town. I air was just cool enough to remind me that summer was almost over, but not so cool as to have the edge of fall. I could smell the fresh cut grass, the scent of evergreens. There was moisture in the air, the threat of rain readying itself for today's arrival. I could hear the birds flitting from tree to tree in the near darkness. see the prairie Hares bounding about, watch the other people taking the paths to and fro, enjoying the last hours of these last summer days.

Rather than 20 minutes by the fast route, I powered along in my chair this longer path, taking about 35 minutes to get home. By the time I arrived, it was after 10:00 PM. More importantly, I was sufficiently stimulated by the PWC roll home, that I knew I could not sleep, even though I was tired. So I watched some TV for a while. After a couple of hours, I finally felt like I might sleep, just maybe. So I went to bed, taking a Zopiclone for sure.

This morning my HCA arrived on time, at 10:30 AM, to help me with my shower and exercises. But the Zopiclone was still working on me, making me groggy, unable to focus. So he suggested I go back to bed when he left, that I sleep for a couple more hours. This I did.

I awoke at about 2:30 PM, finally free of the hypnotic effects of the drug. I rolled over to go pee in my jug, the real reason for my waking. Then I sat up, or at least tried to sit up, so I could re-dress myself. I realized at that moment that I was not wearing my glasses. No problem; they should be on the dresser beside me. Except no, they weren't where I usually put them. It was also that moment when I realized I had absolutely no idea where I did put them.

Often times when I have a nap, I take them off and just rest them beside me in bed, so I pulled the blanket aside, tore the bedclothes apart, tossed the pillows aside. No glasses. Perhaps they fell off the bed while I was sleeping. I leaned as far over the edge of the bed as I could, nearly sliding to my doom. I clutched the night table beside the bed, holding with all my might, peering into the dust beneath my bed. No glasses. I pushed myself back up using my head as a lift on the night table, using what strength was in my arms, and then stared intently around the floor, as far as my poor vision would permit. No glasses. And I still could not for the life of me remember putting them down.

I got so desperate that I considered calling a friend to come and help me find them. I reached for my phone, which was, thankfully, where it usually rests while I rest. It was then that I finally saw them, pushed further down the dresser, hiding behind a picture I keep of Katherine and I in New Orleans, beside my bedside clock, hidden just well enough that I would not see them unless I got close. With my very poor vision, and slow newly wakened mind, they sort of melded into the jungle of pills bottles and cream containers also at my bedside. At last I had found them. I can see again. And the Zopiclone has finally worn off.

Thursday, 1 September 2016


I got a phone call from a recruiter today. It still happens every once in a while. Before today, I've always told them my situation and that I was unable to work. This time I tried something different. I did tell the recruiter, first off, that I had ALS. I also told him that I got tired easy and would have to work with an organization which understood this challenge. I then said "But I am interested in hearing about what you have and what you are looking for."

The recruiter was very animated, seeming pleased that I was still looking for work despite my health challenges. He went on to describe the project, one which was right up my alley, one which I could do, and manage, very well. It was an infrastructure project to manage the migration of 53 servers from Windows Server 2003 to Windows Server 2012. It would pay about $90 an hour and was a scheduled 52 weeks of work. Unfortunately it was in Vancouver.

In reality, I suspect I would not do well with this project from a health perspective. Regardless of the idea of relocating back to Vancouver for a year, losing my medical team, undergoing the stress of moving, and losing my social circle, there is the issue of the risk of losing my disability benefits. Remember, if I make money I lose those benefits. And once I lose them it will be difficult and time consuming to get them back, something that is almost certain to happen as my disease progresses.

So having said so, I mentioned to the recruiter that I was in Calgary and would very much like to do "spot consulting", mentoring and advising, and report writing. He said he would contact his Calgary counterpart and arrange an introduction.

Then the anxiety set in, so bad that I thought I was going to vomit. The very idea of the stress and conflict associated with going back to work made my hands and arms start to shake, make my eyes tear up, made my heart race. I don't understand why the thought of doing something I so much want to do, of being productive, of making some money, should cause me so much stress. Even now, a couple of hours later, the shaking continues and my stomach is turning.

I hope the Calgary contact calls me. I just don't know how it will be if I am actually successful in getting a project. I'm not sure how much success I can take. Right now, without any, I am having enough trouble holding it together. I wonder what on earth has happened to me, that guy who once took on all comers, saw nothing as impossible, was willing to accept a challenge. He doesn't seem to be with me anymore.