Wednesday, 30 April 2014

Familiar Waters

After a couple of days here in Vancouver, we are headed on the road again. This time it's over to Victoria. We'll take the ferry from Tsawwassen over to Swartz Bay, then drive the Patricia Bay highway down the Saanich Peninsual into the city. Victoria is both the southernmost city in BC, and the capital of the province. It is also the most temperate climate in the country, with very short winters, not a lot of rain, and very long summers. Were it not for the fact that it is on Vancouver Island, separated from the mainland by a 2 hour ferry ride, it would almost certainly be the most popular retirement city in the country. As a young man we referred to it as the "land of the newly wed and newly dead".

Victoria is a military town in part, with Esquimalt being the western base of the Canadian Navy. My Dad was in the navy when we lived there in the early years of my life. I was born there in the summer of 1955. We lived there until 1959 when my Dad was transferred to Halifax for a couple of years. We returned to Victoria in 1961, remaining there until my Mom left my Dad in 1963, taking her five sons with her over to Vancouver.

Yesterday I saw my daughter Meaghan with her daughter Charlotte. Today I hope to see my daughter Mary, who lives in Victoria, with her daughter Rose. Most certainly if I don't see them today I will see them tomorrow. I enjoyed seeing Charlotte yesterday although it was bittersweet. Charlotte clearly recognized my Mom and Ray as Grandma and Grandpa. She was uncertain who I was at first, then, slowly, as the afternoon went by, she became more comfortable with me. It reminded me once again that I see very little of Charlotte, and of Rose too. It made me wonder once again what they will remember of me once I am gone. It made me once again consider what stories they will hear of me, what they will be told of me.

I can't do anything much about this. I live in Calgary. I have chosen to live in Calgary, far away from the homes of my children and grandchildren. Even were I here, Meaghan and Charlotte live with my ex-wife in a house I will never go to again. Mary lives in Victoria although she would very much like to return to the mainland, still a long way from Calgary. I am grateful that my daughter Kate is moving to Calgary; once again one of my children will be nearby.

I'm not going to worry too much about all that. Today I plan on enjoying the drive, the ferry ride across familiar waters, time with my daughter and granddaughter. Today is what matters.

Tuesday, 29 April 2014

A Long, Slow Dance

I am tired this morning, more tired than usual. After going to bed near midnight, I slept until 10:00 AM this morning. That's 10 hours of sleep, enough, one would think, to be reasonably rested in the morning. It is not lack of sleep that makes me tired this morning, at least I don't think it is. More than anything it was the process of getting up, getting dressed, and getting going.

Some mornings are harder than others. Some take an awful lot, others seem relatively easy. This morning has been one of those harder ones, where each motion seems to take a little extra effort, where putting on clothes takes just a bit longer, where getting pills out of bottles seems just a bit more difficult. Even the process of sliding down the bed to get into my wheelchair seemed more challenging and tiring.

Last night while I was out with friends, I noticed a blood stain on my jeans, right in my groin. I knew what it was, one of those unexplained bleeders I get on an irregular basis. This morning the stains were all the more apparent as I changed my underwear. Eventually I found the source although I don't know why I bothered. The bleeding had stopped. Yet there were the inevitable blood spots.

All in all, it is a slow, tedious start to my day. It is a long, slow dance. Soon enough the music will stop, yet I keep dancing. I will dance until the last note has finished reverberating through my life, until the band no longer plays on. On these difficult mornings, I will still get up, still get dressed, still get going. On these difficult mornings, I will still do that which is necessary to keep on dancing.

Today my daughter and granddaughter will come to visit. This is the reward for the work and effort it has taken to get mobile. Today I will hear the laughter of the next generation, see the energy of childhood and joy of discovery. Today my daughter will tell me of her life, sharing with me the things that make her days move forward, her successes and struggles. Today I will live outside myself for a few hours, forgetting the tiredness, dancing still. The music is still playing.

Monday, 28 April 2014

The Last Time

I am sitting at my Mom and Ray's apartment here in Vancouver, looking out their large front window at the upper branches of the trees on the street. The buds are breaking open, the leaves beginning their seasonal voyage from new green to their ultimate end in October. There is not just one shade of green, but a scale from near white to near brown, all shades of colour. They are almost blocking the view, not fully, just enough to hide the clusters and clutter of houses and other apartments.

It is a combination of blue and white sky here today, the ever-present spring rains just a threat away. This some grey out there too, the clouds that carry the rain off the sea and onto the land here in BC, the rain that creates this green and verdant paradise. The weather here in April and May is on the edge of summer and winter, the edge of the rainy season and the warmth of the sun. It is the season of new beginnings, the season of flowers and new mown lawns, the season of light breezes and, for some, walks on the seawall.

There is a certain amount of pain in the losses I have endured. Yet each day I take joy in the things I can do. When I got up this morning, Mom and I were talking about how long it takes me to get dressed. Ray said "Yeah, but you can still do it." As usual, his straight forward observation of the facts was on point. I can still do it, still dress myself. Each thing I can do, I will do, until I can no longer do it.

The counterpoint to this is simple. I will do something until I can no longer do it. And when I stop doing something, it will be because I can no longer do it. It is the grey area in between, where I am not sure if I can or can't, not sure if there is ability or disability. In some cases it is simple, the gradual decline. In others, it is more complex, a choice about what is worth the energy or effort, what is worth the time and struggle, if it is worth the risk.

What I know for sure is that once I stop doing something, it is unlikely and in some cases impossible that I will start doing it once again. I never know for sure when it will be the end. For each thing I do, this might be the last time. I will keep doing for myself as long as I can, and when I cannot, that will be the last time.

Sunday, 27 April 2014


This morning I did something dangerous, something truly risky, riskier than all the driving on Friday, something that scared me, right from the moment I checked into this hotel on Friday night, something I have been avoiding because of fear. This morning I took at shower. That may not seem all that risky; the risky part is that I took a shower using a wobbly shower chair inside a standard bathtub, with the inherent transfer and potential for a serious fall.

I am alone. If I fall there is nobody to hear the noise and yell. If I hit my head, nobody is around to rescue me. It is entirely possible, reasonable, even feasible that I might knock myself out in the fall and succumb to a concussion here in my hotel room. It happens to healthy people, never mind those of use with health issues, those of us on medications like warfarin, where internal bleeding and particular bleeding in the brain or other internal bleeding is one of the more common risks, especially after injury. Yet I needed a shower, in spite of this risk. I wanted a shower more than needed on. The next possible shower is several days away; I cannot use the bathroom at my Mom and Ray's place, so this is it until the next hotel room, assuming that even there I can get a proper wheelchair shower.

It's not the shower that is dangerous so much; it is the process of transferring from my wheelchair into the shower chair inside the walls of the tub. The approach itself is awkward. In order to get started I need to take the legs off my wheelchair, a process reminiscent of using my old bathroom, the one in my apartment prior to the recent renovations. Once the legs were off my chair, I shoved my dead feet around and slowly nudged my chair towards the tub side, approaching it at a 90 degree angle.

When the chair and I were sufficiently close, I lifted my legs across the tub wall, allowing my feet to rest inside the tub while my body rested on my wheelchair. Once positioned thus, I moved closer and slowly edged my bulk onto the rim of the tub while holding both my pseudo-steady wheelchair and the wobbly shower seat. From the edge of the tub, I continued the precarious nudge process until I was seated somewhat safely on the shower seat. Fortunately there are grab bars on this tub, along the inside wall, so I had something to hold onto once I was in the shower chair.

From there, I turned on the water, positioned the flexible shower head, and it was shower, precious shower. On completion, I toweled off while in the tub and positioned the chair for the exit. I had to pull the wheelchair further down the side of the tub to a safe exiting position. Getting in and getting out are two very different processes; try it someday, you'll see what I mean. Once the chair was in a safe position for the exit transfer, I then slid from the chair to the tub rim, immediately grabbing the wheelchair arms to pull myself into the chair. Once in, I began the reversal process out away from the tub.

It was at that moment that I discovered how the positioning of the wheelchair vis a vis the toilet now had it blocked in place, unable to move backwards at all. I considered my options and then chose to "hop" sideways in my wheelchair until I could get past the toilet, allowing myself sufficient reversal room to gain access to my wheelchair legs. A bit more jiggling and positioning, and the legs were in place. My own legs followed immediately thereafter.

I am good to go, showered and dried. Next, getting dressed. It never ends, does it?

Saturday, 26 April 2014

A Day Off

It's a cool, near dreary day here in West Kelowna. The air hangs on the trees, moist. Dampness prevails as the rains of April threaten. It is spring here in the Okanagan Valley; the green is all around and the rain is building up enough moisture to take this summer paradise through the long dry season that will follow. It is a rest day for me today, a day with nothing on my agenda although I will likely go to see the Kelowna Yacht Club Boat Show. My cousin Mike and his with Kathy have a booth for their awning business; they make boat shelters and such along with beautiful home awnings, all very high tech.

Yesterday's drive was a long one, beginning in Cranbrook and ending here. Were we to have taken the most direct route, it would have taken some 8 hours for the trip. The route we took was anything but direct, wandering as it did through mountains and up valleys, doing almost as much north to south as east to west. It was a day that started early for me, the second one in a row. It was a day that ended late, also the second one in a row. Yet I felt no more tired, no more exhausted or worn than any other day. It would appear that my level of exhaustion and tiredness remains the same regardless of how much, or how little, sleep I get.

Our travels yesterday had us making our way from Cranbrook to Creston along the winding southwest valley of the Moyie River, a snake of water leaving the small Moyie Lake and eventually joining with the Columbia somewhere further south. Near the border the road turns more westerly to Creston. From there it was up the Kootenay River to Kootenay Lake, then across the lake by ferry to Nelson.

We stopped at Nelson for a late lunch. While there I used Facebook to contact a friend who then joined us for dessert. Our short lunch turned into an hour and half chat fest. It was lovely. We talked about family and friends, about trips and travel, about yesterdays and tomorrows. I love meeting up with friends who have known me long enough to recall younger days, times when there was no disease.

From Nelson we headed south for a bit and then turned north up the Slocan Valley, ultimately headed for Nakusp, where once again we headed south, this time down the shores of Lower Arrow Lake, really more a widening of the Columbia River than a real lake. Once again, a ferry, this time across the lake to Needles from whence we headed up the Monashees, over the top to Cherryville and down the other side to Vernon.

All of this driving was through the mountains, with high snow covered slopes on either side of us. As we rose, the temperature fell, hovering on freezing as we topped the snow line and reached our way through the high country. As we returned to the valley floors, temperatures rose and snow that was once beside us was once again well above, on the mountain tops, where it belongs.

At last, after some 12 hours on the road, all of which I happily drove, we reached our destination. This will likely be our longest road day. I need a day off. Today is it.

Friday, 25 April 2014

Plans Can Change

We are on the road, Mike and I. I wanted to say something like "finally" or "better late than never", but I cannot. As Mike pointed out to me yesterday, you can't be late when you don't really have a schedule. As he also pointed out, when we leave and how long we drive are not really critical on this trip. We have one two touch points throughout the drive. Kelowna and Vancouver. Whether we arrive in Kelowna today or Saturday is no big deal. The same is true for Vancouver; getting there on Monday instead of Sunday wouldn't matter that much. Once again, to quote Mike, we are on holiday.

Schedules have always been important to me. Leaving on time, arriving on time, making time on the road; all to often I have muddied the waters of a beautiful day by driving myself and those around me to an unnecessary timeline. I learned this from my Dad, whose voice has been in my head a lot lately. I don't like some the the things he says and I have trying hard to dislodge him lately. Yesterday was a good learning point, a good reminder that not everything is about time. Sometimes my Dad is wrong, plans can change.

We left Calgary sometime after lunch. When, I am not sure. It was sometime in that gap between midday and dinner. I know that for a fact as we ate sandwiches on the road, about an hour out of town, by which time I was famished. It is an unusual feeling for me, to feel hunger pangs and hear my stomach grumblingly demanding food. We drove for down the Cowboy Trail, a rural highway paralleling the Rockies from Pincher Creek all the way north to Whitecourt. Our run on this road began just south of Calgary, near Bragg Creek, and took us to where it joined the Crow's Nest Highway, just outside of Pincher Creek, an area familiar to my Mom from visits there as a child.

Westward on the highway, we made our way to the world famous Frank Slide. I don't know why it is world famous. Perhaps it is because of the loss of life, or the size and scope of the slide itself. Mike, a geophysical engineer, tells me it has been heavily studied and there are many articles about it. To me it has always been a moonscape jungle of giant limestone boulders cutting a swath across the valley floor, reminding me how in an  instant nature can wipe out months of moil by men and machine. We are so small; this planet is so big and powerful.

Further west, through the low pass in the Rockies and into BC, Mike took over the driving in Sparwood, home of a fantastically large earth moving machine on display at the tourist office, painted a bright lime green, ready for the summer season and a thousand photographs. I slid over to the passenger seat while he took some of those pictures, at my behest. Mike took over, driving the soft, wandering highway from Sparwood to Cranbrook, finishing the winding mountains stretch, taking us down into the valley of the Kootenay River.

Both the Columbia and Kootenay Rivers begin here in this long trench between the Kootenay and Rocky Mountains, the Columbia flowing north, then turning south near Revelstoke while the Kootenay flows south into the US then heads north back to Canada and Kootenay Lake. Ultimately, near Nelson, Kootenay Lake empties into the Columbia, and waters from both become one. They started separately, at the same place, and finish together, ultimately flowing to the great Pacific sea.

Today, perhaps Kelowna, perhaps not. After all, plans can change, can't they?

Thursday, 24 April 2014

Road Trip Time Again

My friend Mike and I are headed on a road trip today, a two-week sojourn through the mountains and down to the coast, over to Vancouver Island and then home again. Most people making the run from Calgary to Vancouver head due west out of the city, driving hard into the high mountains, then down through the Shuswap and ultimately down the Coquihalla to Hope and the Fraser Valley. Mike has done that drive a few times; I must be well past dozens, with equal numbers of air flights over the same territory.

This time we are doing it differently. Mike has seen the "Highway 1" route. Now he will see the lower route, along Highway 3, also known as the Crow's Nest route. Today our plan is to head down through the Crow's Nest Pass and on to either Cranbrook, or if the driving is really good, perhaps Nelson. From there we will head across the West Kootenay country, up Slocan Lake, down the Arrow Lakes, across the ferry at Needles and through the Monashees on the Vernon-Slocan road. Once in the Okanagan Valley we will head for Kelowna.

We plan on staying in Kelowna for a couple of days. Mike has friends there he wants to visit; I have cousins there and I am looking forward to visiting with them. Then, on Sunday, we will head down to Vancouver. Once again we will take the road less traveled, the tourist route. From Kelowna we will head down the Okanagan Valley to Penticton, then through the Cascades via Keremeos and out the Hope-Princeton Highway, once again to the Fraser Valley.

This will be a touring trip, a drive of different views. Rather like life, you can approach the journey from the prairies to the coast in many different ways. Some are a hurried, frenzied dash to the sea, like the lower Fraser River, pounding down canyon walls and roaring through the narrow gaps in the mountains to reach the sea at Vancouver. Some roads, like the lazy rivers here on the prairies, wander their way slowly, sometimes here, sometimes there, taking in the land along the way. Some voyages, like the one Mike and I will undertake today and for the days to come, are a combination of all these things, of all possible routes.

The interesting thing about this analogy is the destination. We are all on a voyage, a voyage of life's discovery. Our destination remains the same regardless of the route we take to get there. We can be in a hurry when life demands a hurry; we can relax and enjoy the ride when life gives us time. Either way, we ultimately make our own choice about how we transit these mountains, how we move from high to low, how we curl and curve and cut our way to the sea. We are the rivers of people; living, breathing, sweeping from small beginnings, joining the bio-mass of our world, beginning and then ending. We are the voyage and the voyageurs, the trip and the traveler, all in one.

Wednesday, 23 April 2014

No Time

How is it that a retired, disabled ALS patient trapped in a wheelchair with nothing but time on his hands can find himself so busy, with a schedule so packed that he cannot accomplish it, with so much of it put off because it simply cannot fit in a day? I find myself continually surprised that the activities of daily living, the dressing and undressing, the cooking and eating and tidying, the taking out and putting away, all take up far more time than they used to. On top of that I have an active social schedule which seems to find me rushing here or there on a regular basis. When did I get this busy?

Of course the truth of the matter is that I am no busier than I have been in the past. There are no more things in my schedule, nor are there more things which need doing. The reality is that those tasks and meetings and appointments and such all take longer now. There is no more popping out of the truck to pick something up in the store. There is no more stopping by at the grocery store while I head off to an appointment. Each and every one of these things now takes longer and requires a lot more planning and forethought.

The wheelchair is a good part of this additional time, particularly getting it in and out of the truck. Add to that the challenge of getting things in and out of cupboards above while seated below. Consider the additional moments it takes to do almost anything and suddenly a day which is empty for an able-bodied person becomes full for someone in a wheelchair. It takes time to position, time to wheel, extra lifts and placements; it all takes just a few moments longer.

Consider the act of having a shower. For most people, it involves walking into the bathroom, disrobing, stepping into the shower, showering, stepping out, toweling off, and getting dressed. It's almost like that for me with a couple of notable exceptions. First of all, I cannot simply walk into the bathroom and get undressed. Thanks to the wheelchair, I can roll into the bathroom but disrobing while seated is a much longer affair. Then I don't just step into the shower; I transfer to my shower seat, a process that involves careful positioning of my wheelchair, carefully transferring my rear end from one seat to another, then sliding into the shower and finally re-positioning my wheelchair so it's not in there with me. And that is just for starters! It simply takes a lot longer than a "normal" shower.

Another factor is the amount of sleep I need these days, usually somewhere between 10 and 12 hours a night. That means my days are substantially shorter than they have been in the past. This morning I got up early, at 9:30 AM, and I am already tired enough that I would happily return to bed. I just need more rest, and that means less time for daily activities; time I once had is time I no longer have. All in all, it means shorter days and even though there are fewer things to be done, they just take longer.

Tuesday, 22 April 2014

Anne Of The Thousand Days

When I was first diagnosed with ALS, on that fateful day in late November, 2012, the neurologist came in to deliver the difficult news. In keeping with her sense of who I was and how I preferred information, good or bad, she was simple and direct. First she said, "We are pretty sure you have ALS. We want to do some more tests, but that is what we think this is." I sat for a moment, barely a moment, digesting this information. Thanks to my own interest in so many things, I was already aware of what ALS was, and what happened to those with ALS.

After my moment, the barest of all possible moments, I said to the neurologist, "How long?' You see, I already knew the prognosis; what I didn't know for sure was the duration. She said, "We think about 36 months." You might think all kinds of things would enter my head, questions about what would happen to me and how I was going to live. Those questions were certainly there, and would certainly be asked by me and so many others. Yet the one thing that sprang into my mind almost immediately was Anne Of The Thousand Days.

Anne Of The Thousand Days is a movie about the period of time when Anne Bolyen was Queen of England alongside the rather cruel and dangerous Henry VIII. In the movie, Anne was played by Genevieve Bujold, a beautiful young Canadian actress from Montreal who exuded sexuality and desire, much like the stories we hear of the real Anne. Henry was played by Richard Burton, in all his regal virility. However it was not the movie, nor the charms of Genevieve Bujold that came to mind, but simply the title.

Anne Boleyn was Queen of England for 1,084 days, from May 28, 1533 to May 17, 1536. While she had been in the court of Henry VIII for some time before this as Maid of Honour to Catherine of Aragon, the first wife of Henry VIII, and though he had been pursuing her since her engagement in 1523 to Henry Percy, son of the 5th Earl of Northumberland, Henry did not manage to lure her into marriage until more than 10 years after their first contact.

History records her as being a political person, crafted in the ways of power. She was well known as sexually alluring and beautiful. She managed her relationship with Henry as an equal until she committed that most vile of sins in his eyes. She delivered unto him a daughter, the child who was to become Elizabeth I. For this, and most likely only this, he sought to annul their marriage and have Elizabeth declared illegitimate. Anne refused, paying the ultimate price for this refusal.

She lived for a thousand days as Queen of England, a thousand days. That is what I thought about when the neurologist said "we think about three years". I wonder if Anne would have accepted Henry's proposal had she known. On the other hand, what choice had she? He was King, and she was his subject. To refuse would be do die, to accept was to live, at least for a thousand days.

It has been 517 days since I was diagnosed.

Monday, 21 April 2014

I Make Mistakes

I make mistakes in my life. Some of them are small, some large. Most of them are mistakes which primarily harm me. Sometimes they are mistakes which hurt the feelings of those I love the most, of those who are the most important in my life. I regret each and every mistake I make; I most regret those where I hurt the people I love.

People say things like "you should lean from your mistakes" and "you should never make the same mistake twice". The problem is that I am a slow learner; I often make the same mistake over and over again, as if the lessons in the mistakes were unlearnable by me, as if I was blind to the changes I need to make in order to avoid making that same mistake over and over again.

The interesting thing in all this is that I know I am not alone in this. I see it in others around me, people making mistakes in their lives over and over again, in ways that hurt not just themselves but others around them. We are such sensitive creatures, such emotional creatures; it is this sensitivity, this emotional softness in us that is hurt so much in daily life. For some that softness is well protected with a hard shell, toughened through life's experiences. For others that softness is in reality a firm bed of emotional strength, made firm through lessons in life about what it means to love and be loved.

My own emotional bed has been firmed substantially in the last year or so. This disease has made me look deeply at the parts of my life that matter, at the people in my life that matter. This disease has made me see that the strength in my life lies not in my own power, but in my willingness to be cared for, and to care for those around me. I am remaking my emotional bed, from a weak, soft bed surrounded by a hard shell, to a firm bed, strengthened from deep within, covered in blankets of care and compassion, large enough for more than myself, welcoming, warm, and caring.

I make mistakes, plenty of them. If I want to sleep at nights I have to acknowledge them, fix them where I can, and ask for forgiveness from those I hurt along the way. It's the best I can do for now.

Sunday, 20 April 2014

Lessons From My Toes

It's been 18 hours since I last sat in front of this keyboard, perhaps 19. I spent 12 of those hours in bed, sleeping, resting up for a busy day today; I'm hosting dinner for about 8 of my friends. Spent the other 6 hours waiting for the tips of my toes to stop seeping blood, bleeding slightly and slowly. This is a result of something else I can no longer do; safely cut my own toenails.

The adjective safely is all important here. This is not a disease of sudden loss, like a stroke might be. This is a disease of slow, incremental loss, where the reduction of ability forces you to make choices about what you can, and cannot, do any longer. It's like driving; I can still drive, and still drive safely. There will be a point where I will still be able to endure the mechanics of driving, yet I will be unable to safely operate a motor vehicle. As one of my fellow patients, now passed on, said to me about a month after I was diagnosed, "I've decided to hang up my keys. It's just not safe anymore."

Last night I was cutting my toenails, something we all do unless we pay someone else to do it. I was able to get my leg up, but the combination of swelling in my feet and weakness in my legs and arms meant I could not see all my toenails properly. The big toe was easy; it's big. The smaller toes I clipped by sense of touch and a rough estimation of where toe ended and nail began. I had an 80% success rate. More importantly, I had a 20% failure rate. On two of my smaller toes, one on each foot, I clipped more toe than nail, instantiating a small flow of blood from the tip of each.

This is where the rat poison cut in. These little suckers didn't bleed a lot, they just bled persistently. I bundled them up in tissue and paper towel, hoping that would be enough to convince them to clot. They did not. For the first couple of hours I just wiped up the blood drippings. We are talking teaspoon fulls at at time, driplets and droplets, not cups or pints. The bleeding was a nuisance but never a danger. I wiped the drops and streaks off the floor, the small stains and pools off of the footpads on my wheelchair, the smudges off of my ottoman where I was resting my feet.

I did this for about 5 hours. Then I wanted to go to bed. Prior to doing so, I used the toilet. That's when I noticed that whenever I put my feet on the floor, there was a new stain of fresh blood. These little cuts were still bleeding fresh blood. I was unable to put on band-aids myself for the same reasons I had such a high failure rate while clipping. Going to bed like this would have meant stains all over my sheets, and possibly on my hand-made sailing quilt. I finally gave up, put aside my pride, and called a friend, getting her out of bed to come over and put band-aids on my toes. This was no St. John's Ambulance First Aid requirement; it was band-aids on my toes, and I couldn't do it.

I've learned two important lessons from this, one for each bleeding toe. First, it's time for me to hang up my toenail clippers. I can no longer clip my own toes, at least not safely. Second, when I start to bleed, call someone sooner, rather than later. At least I won't be getting them out of bed. In fact, in general I need to ask for help sooner. It's just gotten to that point.

Saturday, 19 April 2014

Starting The Day

I just got up. Well, I didn't really just get up; I finally made it from my bed to my laptop. This is not a short journey. The process of awakening, sitting up, going pee, getting on my compression "tubigrip" socks, getting dressed, and getting into my wheelchair can take as much as an hour on a "normal" morning. If I rush things, I can be up and about in as little as a half hour. Some mornings, like this morning, the process takes even longer as I struggle against the strange combination of the desire to continue to sleep and the recognition that getting out of bed is very important.

It is a major step in living, to be up and about, active. Although I know there will come a day when getting out of bed will be impossible unaided, my hope is that, even in the worst of this disease, I will still have the resources and help I need to get up and about each day. I do not want to be stuck in bed; it's just not who I am.

On the other hand, getting up is no sweet treat either. In my bedroom, the closet has large mirrored doors. Each night, as I struggle to get undressed and into bed, I need to rest during the process. As I sit on the edge of my bed, I get the unappealing view of my failing body staring back at me from those mirrored doors. I can see the swelling in my feet, the loss of muscle in my legs, the over-sized belly. I gaze and ask myself the inevitable question. I ask, "What the hell happened to my life?"

Then I remind myself that, all things considered, I have a good life. I travel, I have a vibrant social life, I am rarely, if ever, alone, constantly surrounded by friends, family and care givers. "My body has failed me", I say to myself, "but I am not just my body. I am a whole person, with a life, regardless of where it is headed." I try to find the good things, and desperately try not to feel sorry for myself. Some days it's easier than others.

Unfortunately I get to repeat this process in the mornings, seeing my failed body first thing in the day, hearing myself puff and struggle as I get dressed. I rest in the process, look in the mirror, and once again the conversation inside my head begins. It's not the best way to start a day.

Friday, 18 April 2014

A Bad Arm Day

It looks like there will be no more "going vertical" for me; I may, with mechanical assistance, be able to get up onto my legs, but without it, I doubt it. This morning I tried, when putting on underpants and pants, twice I tried. I tried to lift myself up on my ever weakening arms, to force my legs high enough where my knees could lock, to where I could use my dresser as the standing aid. Yet no matter how I tried, my arms were simply no longer strong enough. Perhaps this is just a bad arm day, like the bad leg days I was having 18 months ago.

I can feel the pain of effort in my left arm. It is not a small, nagging pain. It is soreness worthy of weight-lifting, the weight being lifted all my own. My right arm is complaining, albeit lightly, that it too was overworked in my last attempt at standing vertical. This muscle pain is not really a part of ALS; it arises because I still try, still work hard at doing the things I could once do easily. If I did not try, I would not hurt. I will not give up, nor give in. I will just do what I can for as long as I can, and when I can no longer do it, I will no longer do it.

This will change the way I approach my mornings, and perhaps my whole day. In my past life, I would get up in the mornings, use the bathroom, have a shower, and then get dressed. With the loss of my verticality, this would mean getting out of bed and then lifting myself vertical with my arms in order to don underwear and pants. Now, with the inability to get vertical, I will have to dress myself on my bed. I could keep my old routine, but that would mean an extra trip, an extra transfer from my wheelchair to my bed. That extra work, combined with the sweat raising effort of putting on clothing, is enough to finish me for an hour or so.

I need to think strategically, using tactics which will minimize the work effort of this daily task. If I shower at the end of the day, it will mean only one transfer into bed. When I get up, clean from my nightly shower, I will simply get dressed right away, avoiding that extra transfer to and from my chair. In some ways it makes a lot of sense to shower at the end of the day instead of putting a dirty body onto clean sheets at night. I know some people who shower both in the morning and at night; that would be too much for me to do.

Every day, something's got to give. Every day, I need to think about my energy levels, the work which I must do to live, and how I am going to do it with minimal effort. This disease not only challenges your body, it challenges your mind, your habits, your routines, your expectations. It challenges everything.

Thursday, 17 April 2014

I Wobble

I had trouble getting to sleep last night. I was tired, there is no doubt of that. I am always tired, regardless of whether it is day or night. I can sleep almost anytime, except for last night. This inability to wander into slumberland is not new; it happens every once in a while. My mind starts to race, gathering thoughts from here and there and building a monument to insomnia in my mind. I ponder each bit and piece of data, each idea and possible outcome, rolling them over and chewing on them relentlessly, my mind a dog with a bone.

There are some who recommend some sort of sleeping aid for this. My neurologists have offered me one; I have turned it down. I have always had nights like this, for as long as I can remember. Every once in a while my mind just gets going and doesn't stop. My life's experience teaches me to settle my mind and accept the sleeplessness as something that just happens. It doesn't happen often, and certainly not often enough add another medication to the cornucopia on my dresser.

It is interesting for me to note how many of the realities of my life continue on as they have before, even though ALS has impacted me so much. This morning, for example, I awoke with a sore lower back. I can assure you it is very possible to hurt your lower back in a wheelchair; ask me how I know. Yesterday I was painting a shelf board for my bathroom. The board was wider than I could reach. I could not grab the wet side of the paint while turning the board, so I reached underneath, lifting and rotating the board from below. This, of course, put a lot of strain on my weakening arms, strain which transferred to my lower back.

The stiffness went away once I got up and started moving. I'm not saying there is no residual reminder of my work efforts. It's just that the pain is going away, like it always has. It takes longer than it has in the past, but this recovery function seems to still be working.

On the other hand there are changes, things that are different and things that just don't work anymore. For example I have begun to notice that I wobble while sitting on my shower bench. I think it is a combination of weakening muscles in my back and the complete loss of muscle stability in my thighs. There is no natural recovery process for this one; it will simply worsen as time goes by. Then, at some point, I will have to use a special shower chair, one which supports my back and upper body too.

Some thing change, some things stay the same. It is just the way this illness works.

Wednesday, 16 April 2014

Morning Interruptus

I am having a rough start to my morning. It's nothing on my part; the Home Care worker arrived unannounced at 11:00 AM to do a full cleaning of my apartment. At the moment she called to say she was here, I was in the process of getting into the shower. I stopped my morning routine and after several attempts she figured out the phone board; I let her in. She came up quickly and knocked on the door before I even had pants on. I opened the door slightly, warning her to wait for a moment while I went into my room to dress.

The whole Home Care thing is getting off to a bumpy start. The worker who came on Monday arrived to discover that there was no care plan here in my apartment. Apparently it is in their system but the workers need a printed copy before they can do any work at all. So she emptied the dishwasher and tidied the kitchen, then left. Then last night I got a call from another worker saying she would be at my apartment before 10:00 AM. I was at Trivia so it went to message. I called her back saying that I would not even be up and about before 11:00. She said she would call me at 11:00; she meant she would come here at 11:00. Either way, I was in no means prepared for her when she arrived.

These days I sleep about 11 or 12 hours a night; it is simply function of the disease. My body is so busy trying to fight the loss of motor neurons, so busy trying to make nerve connections where they no longer exist, that it tires itself out. The medical team calls is "nerve exhaustion"; it's very different than muscle or mental exhaustion. When I am out at night, my social events almost always go past 10:00 PM. This means I get home and in bed at around 11:00 PM or later. So I sleep until 10:30 almost every morning. I have no trouble shifting this by a couple of hours either way; if I go to be earlier I get up earlier. I just need that sleep.

Needless to say, when the care worker arrived it blew the hell out of my morning routine. I got dressed instead of showering. Getting undressed and into the shower later today will not be impossible, just difficult. Most likely I will have a shower before I go to bed. It also means I have had to show the care worker where things are and what needs to be done, so I am slow getting to my breakfast and my blog. I suffer from "Morning Interruptus".

This isn't such a big deal; I can easily get past one morning's lost routine. What bugs me is that, on Monday when the first care worker came, I had expressly asked the Home Care agency not to send anyone before 1:00 PM. The woman handling the scheduling assured me it would not happen. Then it did. Apparently this care worker printed out her schedule before the change had been entered into their system and then did not check for updates.

All in all, it has been a bumpy start to Home Care. I called the scheduling desk today to let them know how their error had impacted me. The woman apologized profusely, understanding how this might make my day more difficult. She assured me it won't happen again; I am doubtful, we'll see. After all, it is an organization of people. We get it wrong a lot.

Tuesday, 15 April 2014

Going To Italy

I am going to Europe again, specifically northern Italy, and then southern Greece. I have been to Milan many times, and I love that part of Italy. Yet in all the times I have been there, I have yet to go to Florence or Pisa. This trip I plan on doing both, with a possible side trip to the impossibly wheelchair inaccessible Cinque Terre. Athens will follow, possibly with a trip to Santorini too. It is a wonderful idea.

For me this is like a dream. It all came about unexpectedly, without real intent or hope of actually doing it. I have long wanted to go back to Italy one more time. So the other day when a friend of mine said she had too much holiday time left and had to find a way to use it, I jokingly said "Wanna go to Italy?" Imagine my surprise when she said "Sure, I would love to go to Italy." So last night we got together and talked about what it might be like, how much it would cost, and how we could make it happen.

Since she is working, it has been decided that I will come up with a general sort of plan, with specific location targets and ideas of where we might go. It means I will be doing the research, something I love to do, and coming up with a plan, something else I love to do. I'm not sure what will be more fun, planning the trip or actually doing the trip. Both will bring me great excitement and joy. Whether or not the trip comes off exactly as planned matters little, for me the great joy will be simply returning to Milan, and hopefully going to Bergamo, a place I think is the most lovely on earth.

When they talk about progression in ALS, one of the things they talk about is "reasons to live". I have many reasons to live; this is one of them, the opportunity to travel. This may be my last major trip although I must confess that I would also like to go to Thailand in the fall, assuming I am strong enough. No matter, I can still dream of it. I will endure almost any kind of difficulty to make and adventure like this work. Wheelchair access will be limited, there will be many things barred from me. Yet simply making this voyage will be wonderful enough.

I continue to live in a daze, surrounded by amazing people who will do wonderful things for and with me, both large and small. I am constantly surprised and uplifted by their generosity, spiritual and practical. For an able bodied person to agree to go with me on a trip like this, that takes some courage and willingness, an understanding of my limitations, and a sense of adventure. I am excited.

Monday, 14 April 2014

Home Care Starts Today

There are signal moments, deeply personal, that tell us our lives have changed forever, that our bodies are no longer what they once were, that we are no longer the person we were yesterday. These moments come to all of us, and are, in so many cases, so personal that others may not even understand their impact. For some it is the first grey hair, for others the onset of menopause, for even others it is a specific physical or ability change; each of us has them, each of us makes markers from them.

For me, along my ALS pathway, the first, even before diagnosis, was having to purchase and use a cane. Once that happened, I knew something was seriously wrong, something that I could no longer ignore. The next was going into a wheelchair, knowing that I would never walk again, let alone run or climb. Yet through all of this, I was still independent, stubbornly so. I was still able to live on my own and look after myself.

Today that changes. Today is the first visit from Alberta Home Care. Some will see this as a good thing, seeing how it will help me, how it will make my life easier, allowing me to focus my limited energy on things that are important to me. The Home Care worker will come and help me with exercises, working to help reduce the swelling in my feet. She will also spend some time making sure my kitchen is tidy and my dishwasher is empty, two tasks that take an awful lot for me to accomplish. Then, every other week, a Home Care worker will come and do a thorough cleaning of my apartment.

While this seems like a good thing, and some may say "I wish I could have that", this is something over which I have little say or control. I am compelled by circumstance to allow a stranger into my home to help care for me. This is not someone of my choosing, someone I have hired and can fire if I want. This is not someone who depends on my to pay them. This is a person for whom I am simply a factor of their daily production, a piece of their work life. I am not the boss, I am the client, the consumer of a government service.

I have lost my independence. I am now "in the system".

Sunday, 13 April 2014

Low Profile Box Spring

About a month before I was diagnosed with ALS, I bought myself a new bedroom set, including a new bed, mattress and box spring. After all, when I left Carla I took virtually nothing beyond two suitcases of clothing. In the family home I left every stick of furniture, every sheet, pillow case and blanket, every dish, cup, plate, pot, pan and glass. The only things I had were a few bits and pieces that had migrated to Calgary with me over the previous couple of years while I had been maintaining an apartment here and a home there.

Furniture, sheets, quilts and almost every other household accouterment was a must when I moved in here. Even some of the things Peter had kindly stored for me over the summer were damaged in the moving. As my Dad used to say "Three moves, one fire; same thing." So I went out and purchased a very nice, reasonable quality headboard, footboard and mattress set including a European style top mattress and a sturdy box spring.

Now, just over a year later, I have replaced that good quality standard box spring with a low profile box spring. The standard box spring is somewhere between 8 1/2" and 9 1/2" high. A low profile box spring is only 4 1/2" high. This means my top mattress sits closer to the floor, and so do I when sitting on it. The purpose of this purchase was to make it less difficult, and less dangerous, for me to transfer from my wheelchair to my bed. Note I did not say "easier"; no matter what you do, this transfer is not easy. It is always, and will become increasingly, difficult.

I still need a bit of a lift when transferring, so I still do the simulated stand and rotate maneuver. Now, though, the target is not as high and my feet remain well planted on the ground. With the standard box spring, my feet just barely touched the floor, making them basically a dead weight dragging me off the bed. Now, at least, my feet act as touch points, meaning I am less likely to slide during or after the transfer. It is rather a nice thing sitting on my bed not fearing the potential slip that came with the standard height box spring and mattress.

It is another cost, one of so many associated with this disease. It is another thing I needed to replace so I could do what "normal" people normally do. I know others use low profile box springs. They do so by choice in most cases. For me, and people like me, these things are not a choice; they are what we need to keep living a life that even vaguely simulates normal.

Saturday, 12 April 2014

Sharing The Burden

"Cast your burden on the Lord and He will sustain you..." Psalms 55:22

I have read the Bible, or at least the Protestant version thereof, at least two and possibly three times, cover to cover. My preferred translation is the King James Version. I simply love the poetry of it, the use of language in it. I've also read the Bhagavad Gita as well as the Koran. I've even read some of the Hadith. In each of these books there is wisdom, legend, myth and much to learn. In all of them, there is the reminder that the burdens of life can be lessened through the simple act of sharing them, not just with God but with one another.

I think a lot about these things these days, how life is not a solitary event no matter how much we try to make it that way, how little of life we truly control, how much of it is subject to random change and happenstance. The burdens that we carry are so often those of our own making, where we simply choose to pick up the pain and sorrow of life and make it our own, internalizing it as if there were something holy or divine in suffering solo.

It is the greatest thing I can do for myself, to remember that my burdens are not mine alone. Whether I share them with God or with those around me who love me enough to help me with them, there is no nobility in labouring endlessly, a Sisyphus of modern times, punishing myself with the burdens of care when I could so easily release the stone, allowing it to roll away, leaving it at the bottom of the hill. It is the mere act of sharing that lightens this load, eases this struggle.

It's interesting that one of my greatest fears is dying alone, with no one about me, stranded immobile in a hospital bed, untouched and unloved. If there is any burden in my life, it lies truly in this fear. Yet simply saying it to others, to those around me who love me, that burden of fear is lightened. I do not ask others to take up my yoke, nor do I ask them, as did Admetus, to take my place in death. I simply ask that they hear me and in the telling my burden lightens.

As I read through the Bible, the Gita, the Koran, as I study the myths of the Egyptians and Greeks, as I read of Zoaroaster and the Sumerian pantheon, it becomes more and more apparent to me that so many of our beliefs, so much of what we worship as God comes in the hand of human sharing, in the community of life. It is in our nature to want to share this load; therein lies true honour and compassion.

Come unto me, all ye that labour and are heavy laden, and I will give you rest. Take my yoke upon you, and learn of me; for I am meek and lowly in heart: and ye shall find rest unto your souls. For my yoke is easy, and my burden is light.... Matthew 11: 28 - 30

Friday, 11 April 2014

Walking The Tightrope

I do not view myself as a particularly brave man. In fact those who know me will confirm that I am riddled with all kinds of useless fears, pointless worries and petty concerns. What I try to do in life, rather than focus on what I fear, is to focus on the future. I feel the fear and do it anyway. My personal goal has been, and still is, to live a life where fear is not my deciding factor, to live a life where I see opportunity, not danger. I cannot live a life without fear, but I sure can live a life not boxed in by fear.

We all have fears, about ourselves, our finances, our families, the world around us. It's no surprise that many of us limit our lives by what we fear. The foolish thing is that it not need be so. The vast majority of what we fear comes from within, from our own self doubts, a lack of confidence in our own ability to handle what life gives us. We live in fear because we are afraid that we might fail, we might not reach a standard that we set for ourselves. The great tragedy is that so much of what we fear will never happen, and yet we limit ourselves by the possibility that it might happen.

A young friend of mine was over the other day. We were talking about how his own fears are framing his life these days, of what he is afraid of and how it is impacting his present and his future. I wanted to help him understand that the things he feared were so small that when they actually happened he would barely notice them, that his life would continue and that he would move forward through the simple act of waking up each day. Then, one day, he wouldn't wake up, and that would be that.

I likened it to a tightrope. Each of us walks this tightrope in life, focused clearly on what is ahead and around us. That tightrope is our fear, stretched tightly, we balanced precariously upon it. Our focus is so much on our fear of falling off the tightrope that we completely fail to look down. After all, when you are on a tightrope the first rule is don't look down. Yet if we did, if we broke that rule, we would see that the tightrope is stretched a mere few inches from the ground. If we simply stop looking around at what we fear, we would see that falling of the tight rope is no more dangerous than a simple step down.

Yes, I am afraid of things. I simply refuse to let that fear dominate me. I look down and see that all my fears are small, even my fear of dying. In fact death isn't even my biggest fear; it's small compared with the things I fear in life. All I have to do is get off the tightrope. Then I can walk, or roll in my case, freely, knowing the fear is there but not limited by it. Then I can be truly alive.

Thursday, 10 April 2014

Death And Taxes

On November 22, 2012, just over 16 months ago, the senior neurologist at Foothills Hospital proffered up the final confirmation of my diagnosis; ALS. The attending neurologist had told me the day before, and had given me a timeline of, most likely, about 36 months. On confirming the diagnosis, the senior neurologist asked me if there was anything I wanted to do yet in my life. Oddly enough, I said "not really". His response was "If there is anything you want to do, do it sooner rather than later."

Then I went to the ALS clinic. The same issue came up, what I wanted to do with the time I had left. It's a tough discussion. Money was big on my mind; I didn't know how I would live once I stopped working. The counselor said "Worry more about living in the moment, living now, and not so much about what's going to happen two or three years from now. You don't know what is going to happen then, but you know what you can do right now."

This was an unusual position for me. I had always planned, thought about the future, worried about paying my bills and taxes. Now here I was in a position where multiple medical professionals were telling me that long term planning was a bad idea, that I shouldn't think so much about tomorrow. There advice was essentially that I should go from ant to grasshopper, that my view should become short term, a live for today kind of existence.

I took that advice, especially last year while I was still reasonably mobile. I took some big road trips, enjoying my time both behind the wheel and in the hotels. I ate well, drank well, slept well and had couple of terrific trips. It's not as if I spent foolishly or spent as if there was no tomorrow. Even the shortest term view for me looks forward at least 6 months these days. After that, it's a crap shoot. I had, however, decided that I was going to enjoy what life I had left, denying myself only when self-denial was about protection and common sense, not about money or fear.

Of course the end result of this is that I chewed through money pretty good last year. My tax bill for last year is living proof of the certainty of taxes, and my ultimate demise will be dying proof of the certainty of death. My hope is that I die with a really big tax bill and a really small bank account. When I talked to my accountant recently about the size of my tax bill, and trust me, it ain't small, I found myself oddly unworried about it. After all, I am sure they will get theirs. They may just have to wait a while.

Wednesday, 9 April 2014


I treasure my independence. I say I am fiercely independent, others say I am stubbornly independent. It's not that I don't appreciate the others around me, nor do I turn down help when I need it. It's that I believe strongly that I should do for myself for as long as I can, look after myself until truly unable to do so. I want to do what I want, when I want to do it, how I want to do it, where I want to do it. I realize fully there are limitations to this desire for personal reliance, even more now than ever before. Yet I am unwilling to give up this desire, this need to do for myself.

My Dad used to say that a man "carries his own water"; right up until he died he resisted anything that might steal his freedom. My Mom simply demonstrated it in how she lived, and still lives, making sure that she is able to care for herself as far and as long as her limitations will allow it. Each of my siblings shows this independent streak, this unwillingness to allow the world around them to dictate their limits, willing to do what they need to do to live the lives they want.

My friends tell me I need to ease up on this, to let them help me more. They tell me that I should learn to ask for help sooner, learn to accept their generosity without feeling the need for reciprocity, learn to let them do for me what I can no longer do for myself. I am learning to accept this, uneasily, resisting it all the way. I am very grateful for the things they do for me, completely unable to understand why they do it, struggling with the seeming one-way nature of things. It is a result of the transactional nature of my upbringing.

The latest step in my loss of independence will start in the next few days. Home Care will be coming into my home to care for me. They will start with Range Of Motion exercises, and general home cleaning. Basically they will replace Rosa over time. What worries me is that I will now be dependent on their schedule, my life determined by when they can come and go, not when I want to come and go. I will now be forced to be up and out of bed when they come, since they will not accept responsibility for having keys. I will have to accept their rules and requirements to get these services. I am not in charge of this process, I am dependent on it.

This is another loss, another leaving. It is another thing that ALS is taking away from me. I will have to learn to live with it. After all, I can no longer carry my own water.

Tuesday, 8 April 2014

The Sadness Passes

I am getting another visit from Home Care today. This is not a care visit, but another assessment visit. The first was a general health assessment. The second was an assessment by the physiotherapist. This one is some sort of care planning assessment. My hope is that this visit will actually result in home care helping me now and again.

There is a lot of focus these days on my physical well being. This is a good thing, as this is the most obvious area of decline and one that most definitely affects my quality of life. On the other hand, I need to consider my mental well being too, not something most agencies can do much about. The emotional challenges of this disease are as tough as the physical ones, perhaps even more difficult in that there are no obvious aids to make them easier to handle. Medications can make a difference but that means a chemical filled life, something I want to avoid if at all possible. I want my mind to be my own mind, for as long as possible.

Lately I have taken to a lot more "contemplation", a lot more time where I just sit and think, allowing my mind to roam freely, to pick its own targets and to wonder about the immensity of the changes in my life over the last 24 months. About two years ago this month I began to have real issues with walking, sitting and standing. It was sufficiently noticeable that many commented on it. At that time I thought it was an issue with my back; never did I think of ALS, not even a little.

The changes from there came quickly, with the purchase of a cane, visits to doctors, these resulting ultimately in diagnosis. Then came the wheelchair, the ever increasing loss of mobility, and now the renovations. These days I will often find myself lost in reverie, contemplating some facet of my life, seemingly adrift as my emotional and intellectual self grapple with what has happened, what is happening, what will happen. I look in my new bathroom in dullness, staring not at it, but past it, wondering at the changes which have come. I sit and look out my window, adrift in the perigrinations of pondering, not hearing the birds that sing or the hum of traffic.

These wanderings leave me saddened. I think, "What the hell has happened to my life?" I wonder, "What will happen to me next?" I drift along in these thoughts, growing ever more indolent until I awake from my intellectual slumber, realizing that life is what it is, and I am what I am. Then I move on, carrying the sadness like a backpack, working to unload it as I go, lightening my emotional burden. The sadness passes, life goes on.

Monday, 7 April 2014

A Spring Of New Hope

There is a calm quiescence about my apartment this morning, as if the air itself knows that there are no nails to be pounded, no wood to be cut, no drills to drive, no screws to drive in. The furniture seems to host an anthropomorphized gratitude that no construction dust is to fall on it today, the walls seeming stately and reposed, confident in the knowledge that the assault of tools is complete. This peace, interpreted more in me than in the inanimate around me, assumes a mantle in ether, weightless, lifting the oppressiveness of dramatic change and endless effort.

It's not that everything is done. There are still baseboards to paint, patches of wall where gyproc was refinished that need painting as well. There is still a case moulding on the inside of one bedroom door needing to be cut, installed and painted. There are myriad minor repairs, nicks in walls, spots on the floor, all needing touching up or cleaning. Yet none of these seems urgent this morning, none of them is demanding anything from me.

I am expecting no people to come today to do that which I can no longer do. Jim has gone home and though we have simply shoved all the tools and detritus into the spare bedroom, there is a door I can close, pretending that the beast inside that room is caged and I am safe. The sub-trades have all come and gone, their work, if not perfect, at least complete. My friends, blessed as I am with such good ones and so many, have all been, seen, and left things clean. My neighbours have had their chance to inspect, to see what we have wrought with all the "sturm und drang" over the last 12 weeks.

Now I get to sit, to take time and enjoy what has been given to me. One of my friends said to me yesterday that she thought the stress of renovations had taken a lot out of me, more than financial cost but emotional and even physical cost. It is interesting to note that the rapid progression of the loss of my legs last year took place in the midst of the highest emotional stress of my divorce, and that the rapid loss of strength in my arms has occurred over the last three months, in the same time window of these very stressful but necessary renovations. I cannot claim causation, it is an interesting correlation.

My neurologists, all five of them, agree that stress increases the progression of ALS. Now that this stress is done, that peace has returned to my home, I hope my body takes the hint and settles down for a while. It will be a good period of calm, a pleasant spring of new hope.

Sunday, 6 April 2014

Another Lesson Learned

It's a late blog entry today. I stayed up late last night, woke up late this morning and slumped in bed for an hour after that. I was up so late this morning that Jim had already begun working by the time I was out of bed. Work came at me, the final baseboard cuts, pulling some nails to allow for re-nailing after trimming, tidying up a bit, it was all on me before I could get to my laptop.

It was the late night last night that brought the most interesting bit of recent learning. This new floor behaves differently than carpet, not gripping as well, allowing for more slide in things like wheelchair wheels and socked feet. It means taking more care when transferring while on the laminate, ensuring all locks and safety grips are in place.

Last night, as I was getting into bed, I discovered that all the more. The process of getting me into my bed is not an insignificant effort. I wheel my chair up beside the bed, lift myself as vertical as possible using the wheelchair arm on my right and the M-rail on the bed to the left. Once up, I quickly rotate and slump back, seating myself on the bed. The depth of derriere on bed is limited, so I almost immediately lift my feet onto my wheelchair seat and wiggle backwards, ensuring my center of gravity is bedside, as opposed to hanging in space.

When engaging in this procedure last night, I did the rotation onto the bed, then noticed that I had left my cell phone on my wheelchair seat. I usually tuck it under my leg when rolling so it is always with me, near at hand. I wanted my cell phone on my dresser, where I plug it in to charge at nights. That way I can leave it turned on, just in case I need to reach out for help, or just in case someone might need to call me at night. So I leaned out slightly, grabbed the phone and put it on my dresser.

At that moment I realized that my center of gravity was not only somewhere over the edge of the bed, but was slipping, gravity doing what gravity does. I quickly leaned back and tried to use the wheelchair as a pressure point for forcing myself further on to the bed. That's when I discovered that my wheelchair will slide sideways on laminate, even with the wheels locked in place. Vertical pressure will hold the chair in place; horizontal pressure has the opposite effect.

The wheelchair started moving north while I wanted to go south. The gap widened. My center of gravity slid further out and down, now well off the support zone at the edge of the bed. As the gap continued to slowly widen, I continued to slowly settle, further down, and down, and down, until my rear met the floor. At that point, I stopped sliding, both outwards and downwards.

I called Jim to come help me get into my wheelchair. I can do this myself using a small stool or anything about a foot high as an intermediary step to gaining full chair elevation. He brought in my toolbox, a perfect height for the first step. Then I put myself in my chair and did the transfer to my bed. This time I focused on the transfer, not on the phone. This time I made it; lesson learned.

Saturday, 5 April 2014

Changes Will Come

ALS is a disease of creeping incrementalism. In most cases you don't see the changes suddenly. Instead they slowly overtake you until one day you realize there has been a change, often not a big change, just enough of a change to make you realize that things are progression. There are events, things you do periodically until one day you notice that it's a lot tougher than it was even a few weeks back. Then there are the moments where you are thinking about the future and realize you probably won't be there to see it.

I had a three of these moments yesterday; two where I saw the change in real terms, where the loss of strength in my arms became suddenly real, and one where I thought about something for the future, realizing that I would not be there. By the end of the day, I was quietly depressed, saddened by both of these realizations.

The first was in the afternoon when I had to go to the Home Depot for some screws and a special drill bit for drilling through tile. Although I have been noticing it get more difficult, I can still get into my truck and driving is still easy, or at least relatively easy. I drove down to Home Depot, got out of the truck and headed into the store. As I did, I hit the ramp to the front door and slowed down substantially. I thought to myself "This didn't used to be so hard", and then realized that it really didn't. In the last three months that ramp has gone from being merely troublesome to steep and difficult. I know they didn't change the ramp, so there is only one other conclusion I can reach.

The next was when I went to the movies with some friends in the evening. I, once again, got into my truck and drove to my destination, Chinook Mall. The theatres are at one end of the mall; my friends wanted to meet in the food court, up on the second level at the center of the mall. I got out of the truck and thought about the distance. For the first time since the onset of this disease I found myself wishing I had my power wheelchair. The distance down that mall, something that was easily accomplished just six months ago, seemed interminable, the mere thought of the effort wore into me. The fact of it was equally wearing. I did it, pushing myself to get there and be a part of things, yet inside I was feeling the pain and weariness of nerve exhaustion.

That same movie provided the third event of the day. I was watching Captain America: The Winter Soldier, a special effects, explosion riddled extravaganza, in 3-D. The movie was fun, fast moving, with a few really good lines in it. I enjoyed myself. If you know anything about the Marvel Studios approach to these movies, they always put a "bonus scene" at the end, previewing their next planned movie. In this case I loved the preview scene and thought to myself, "I would like to see that". Then I realized I would probably not live long enough.

These kinds of things get to me. They wear me down, stripping out my enthusiasm for living. The realization that progression is real and ALS is terminal; this makes for a difficult moment. The best I can do is leave those moments behind me, live in the present, and accept that changes will come. That's my mission for today.

Friday, 4 April 2014

A Better Bathroom

Jim is here today, most likely for the last time in a while. We are nearly finished the renovations, with only a few finishing touches to be completed. I have enjoyed having him here; we have spent more time together in the last few months than perhaps in the last 20 years. He is very different than me and this time together has let me come to appreciate those differences.

Today we are going to work on putting up the bifold doors in the hallway and my bedroom as well as putting up the safety bars and shower seat in the bathroom. The ceiling has to be finished; there is a spot about 6 feet by 5 feet with new gyproc which needs that popcorn textured stuff applied to it. So far none of us have been brave enough to do it; Jimmy does not lack for that kind of bravery.

After that, there are a couple of fiddly little things, like bits of baseboard that need to be trimmed down, a door case that needs to be put back in place, door stops that need to be attached. It's always a surprise to me the number small things that it takes to finish a project, any project, whether it be renovations to an apartment or a major technology project.

There is only one thing that I have asked for this last day of work, that all cutting of any wood be done outside, on my tiny little patio. The amount of dust created when cutting MDF board is incredible. We have spent hour upon hour in the dust, breathing and sleeping and sitting and eating with it all around. It's not dangerous, just very annoying, the grit and grey showing up everywhere. I am done with dust.

It is good to be at the end of this project. It is already making a major difference in my life, improving my quality of life, allowing me to do things that have of late escaped me. When we talk about how I will live my last days, quality of life is a big part of the discussion. When the time comes where I can no longer cook, no longer shower by myself, no longer make wine or do my own laundry, that will be the true loss of quality in my life. A better bathroom is a big contribution.

Thursday, 3 April 2014


Victory comes in unexpected places, especially when you are dealing with ALS. With a disease so pernicious and pervasive, you have to look at where you can win, and take those victories joyfully. Today I did something I have not done in over a year, not since I first went into the wheelchair last February. It's actually not one thing but a collection of things, a compendiate series of activities when seen as the whole are something that has not happened in a long time.

First, I got out of bed, something I do every day, still. Then I easily rolled into my bathroom through wheelchair width doors, not having to adjust legs or remove wheelchair feet or twist and contort. Once in, I had a shower, simply rolling up to the seat and transferring, without having to push and pull on the wheelchair, transfer to the toilet first then to the tub, swinging my dead legs up and over the edge.

My shower was lovely, warm and gentle. There was no need for me to hold the shower head in my hand as my new shower has multiple heads all pointing in the right places. I was able to use both hands to clean myself, able to sit and let the water fall over me, cleansing and falling away. I was able to use both hands to wash my hair, to grab the shampoo without letting go of a safety grip along the way. I was able to easily transfer back to my wheelchair once toweled off.

After as close as I can get to a normal shower, I rolled easily to my sink, right underneath it, facing it square on without having to twist sideways for access. I sat there and looked in my mirror, realizing how much I needed a shave and how long it had been since I had been able to do this at home, engage in the simple act of looking straight into my mirror without having to look upwards or sideways. I reached out and easily grabbed my toothbrush from the holder, toothpaste too, without having to stretch and bend. I brushed my teeth with a sink below me, not beside me or a foot away in front of me, no projectile expectoration required.

In short, I had as normal a start to my day as is possible given a wheelchair existence, a morning without impediment or obstruction. I had the dignity of something approaching normality, something offering a semblance of what others do without question each and every day. It has been more than a year getting here, and fully three months in the renovation process. This morning returned every penny of investment in these changes, every dollar of cost and every hour of time. This morning my victory was to feel something close to having a normal start to my day.

It makes me think I really should say "to hell with the money", and do my kitchen too.

Wednesday, 2 April 2014

I'm Tired Of Bleeding

I'm tired of bleeding. I'm tired of scratching my head only to come up with chunks of dried blood from some small nick that began mysteriously. I'm tired to small cuts on my fingers gained while doing renovation work turn into small streams of blood, causing all work to stop until staunched. I'm tired of seeing small spots of blood in my underwear, dripped from some small blister or fissure, now dried and closed.

I'm tired of bruising. I'm tired of waking up in the mornings to find bruises rising ripe and colourful on my legs, or arms, or belly, bruises of unknown origin or provenance. I'm tired of seeing them start small and grow, moving from brown to purple to yellow across the days. I'm tired of wondering how the hell I did that, or where this one came from.

All of this, and more, is a result of taking warfarin, rat poison, to stop the blood from clotting in my veins, a result of spending too my time sitting, too much time immobile on my wheelchair cushion. The medication is purportedly keeping me alive, as the clot could have moved to my heart or lungs and done serious damage, perhaps even a pulmonary embolism. We don't even know if the clot is still there; it doesn't matter as without medication it is an almost certainty that other clots will form, ready to do their mischief on my body.

This is just another part of life for me. It's not really even a part of ALS per se, but just a result of my losing my legs. I know other people who take this same medication for a variety of blood clot related issues. Some have the same effect as me, bleeding easily and readily. Others, it seems, have very little of this kind of outcome, even though they take anti-coagulation medication. As with all things human, it seems a very personal, almost individual outcome.

For me, it is just another annoyance in my world of ALS related annoyances. It may not seem like a big deal, but I am sure tired of it. It's something I just have to get used to. That doesn't mean I have to like it; I don't.

Tuesday, 1 April 2014

I Am Glad I Wear Clothes

I am writing late today. Having been out late last night I got home after midnight and did not get to sleep until around 1:00 AM. Add my minimum 10 hours of needed sleep and you get 11:00 AM. Throw in an extra hour of lying there, trying to get motivated to get out of bed, and suddenly it's noon. It's a good thing I don't have to go to work any more; it would ruin my evening social life.

As I arose this morning, I did one of the things I do periodically, a sort of dispassionate assessment of how my body looked, how it was faring against the ravages of ALS. I do this in as detached a manner as I can, looking at my physical form extant, the way it is today rather than the way it used to be or the way I suspect it will become. It is a difficult exercise.

I looked down at my feet, still swollen despite a full horizontal night which should have, in theory, allowed the pooled blood to return upwards in my arterial system, their colour a near iridescent purple flashing to white as I touched my toes and the arch of my foot. They have been this way for quite some time now; in fact I first wrote about this impact of ALS back in June of last year. Back then the swelling would usually go down as I slept; alas this does not happen any more. Compression socks are about $200 a pair for my situation, and none of this is covered by any insurance or other funding. No wonder they call this the Bankruptcy Disease.

My legs are truly misshapen these days. My calves are skinny although still retain something close to normal form. My thighs are completely flacid; where they approach my knees they taper unevenly to become abnormally skinny. The now dead muscles in my legs just flop where gravity takes them. Then I notice a new bruise on my legs, from whence I know not. This happens fairly often, that I do something normal, something common, and end up with a bruise. I have a couple on my stomach and one on my arm too.

Speaking of my stomach, it is still a Buddha belly. They want me to eat enough to stay alive yet I find this increasingly difficult to do thanks to a general loss of appetite. I am just not all that hungry these days. Yet with this loss of intake, my belly still seems to be large. It's kind of frustrating to lose weight everywhere except there.

While inspecting myself I noticed that I had punctured something again, most likely a small blood blister on my nether regions. I get these quite often, they are not uncommon. For most men these small blisters on their private parts simply go away; for me the rat poison means they pop, leaving small blood spots on my legs and underwear. It's just another ancillary benefit of ALS.

I look at my arms and see the loose skin now on both of them, not so loose as to be floppy, but with just the beginnings of puckering, looking rather like cellulite neath the skin. My arms are definitely skinnier than even six months ago, and certainly no where near what they were before ALS. I suspect the loss of my arms was going on last year while I thought nothing was happening, with losses so small as to be unmeasurable. Even now my FRS remains fairly stable. The losses in my arms are not enough to cause substantial failure yet, but it is coming. For today, they just look smaller and weaker.

Fortunately my neck and shoulders, while certainly engaged in this process, show no visible signs of failure yet. That will come eventually. For now I am grateful for what parts of me still work. The truly wonderful, and yet frustrating thing is that the part of me that works best is invisible, hidden inside my head. My mind is mostly intact, largely untouched by ALS. Yet that one strength cannot be seen.

After this exercise, I get dressed, relieved that my clothes will mask the reality of my fading physique, protecting me and all others from seeing the reality of what ALS has done to what was once a strong and powerful body. I am glad I wear clothes. It hides the damage.