He is Risen, Now It's Our Turn

It's Easter, a time when we Christians celebrate the risen Christ and His defeat of death. We say "He is risen indeed".

There are any number of Resurrection stories in religions throughout history. The Egyptians had Osirus, God of the Underworld, who arose from the dead to beget his son the god Horus. The Jews, our siblings rivalrous in faith, have Lazurus. There are others too. The theme of renewed life and escape from death is not unique to Christians.

I don't dispose of my faith for this, nor do I dispose of it at all. This is but one of the many anomalies that one must conquer if one is to have faith as a Christian. It is conquerable. Some, however, are not. Of late I have been watching the equal rights debate around gay marriage. Personally I don't care who marries who, as long as they are happy. I have learned over the years that my rights extend to my life, not to the control or judgment of other lives.

In many ways these days I am ashamed of my fellow Christians and their acts of great unkindness, their unwillingness to show charity and their ability to use selected verses or portions of the Bible as a blunt instrument in a vain attempt to control the world around them. Jesus might have a few choice words for them, and I suspect they would not be words of praise.

The Southern Baptist Convention is a leader in the fight to "preserve" traditional marriage. This is the same conference that ruled in 1998 and 2000 that women were to be subjugate to men and thus could not be pastors or deacons in their churches. It would seem that repressing women is right up there with repressing homosexuals.

The most fascinating part of all of this is that the Southern Baptist Convention has a large African-American contingent. I wonder how they would feel about the verses in Leviticus and Deuteronomy which not only uphold slavery but admonish slave owners in the proper treatment of slaves. Slavery is all over the early Bible; it was a normal part of life for the Jews. They were both slaves and owners of slaves.

Using a part of the Old Testament to justify maltreatment of others is a time-worn Christian practice. It's time we stopped. I have come to believe in a forgiving God, a Christ who leads from the cross, a Jesus who speaks out against injustice in all forms.

He is Risen. Let us now rise up against all the injustice around us, not just the injustice that serves our small minds and prejudices.

Priorities

Yesterday did not go as planned. It's not a bad thing; it's just a thing. Some days you do what you plan, others you do what happens. We started out sleeping in a bit, and in the push to pack I forgot to write my blog. While having breakfast I did something I almost never do - I pre-booked a hotel using Hotwire and choose the "secret deal". Big mistake.

We planned on going to Reno. My thought was that we would spend an easy afternoon there, sitting by a pool and drinking Margaritas, or some such silly beverage. My thought was that pre-booking would save me money. My thought was "how bad can it be".

So I clicked yes and ended up with a bad hotel and a price that was apparently no real deal. Hotwire promoted their selection by listing a bunch of similar hotels, many of them brands at which I had stayed. Instead of reading "Stay at hotels like these", the advertising line should have read "Here is a list of hotels that you definitely will not be staying at." After paying $60 for a hotel in Reno, something I now realize I could have done anywhere in that city, I got the aging Sands Regency.

My "secret pick" was a not-so-secret older hotel badly in need of renovations. The reviews online on sites like Trip Advisor and Hotels.com were almost universally bad. All, to a one, said the hotel was old, smokey and badly in need of renovations. When we got to the hotel we discovered that these kinds of reservations were non-refundable. When I checked online, sure enough the Hotwire site said "no refunds or changes".

So I thought for a moment, then I realized that I didn't want to stay at a smokey hotel with a crappy casino - I am not a casino fan, after all. Ricky didn't even want to stay in Reno! He wanted to spend the afternoon driving, to spend more time on the road. After all, it's a road trip, not a hotel trip. So we drove on.

What about the $60? For the rest of my life, whether it be short or shorter, I will never trade my comfort or peace of mind for a few measly dollars. I've had enough situations in my marriage where the fight over the money took all the joy out of something, enough situations where not spending the money was more important than comfort or enjoyment. I did my struggling, scrimping, living on the low end. From now on, I will simply spend the money. I can't spend it from the grave. And after all, I spend more than that on a good dinner.

I guess I may miss on the budget line this trip. Priorities change when you are in my situation.

Silver Linings

I forgot to write my blog this morning. It was bound to happen sooner or later, especially with all the packing, unpacking, loading, unloading, checking in and checking out. This morning wasn't particularly challenging; I just got distracted by the process of getting up, having coffee, looking for a hotel for tonight, and getting underway.

Yesterday was relatively uneventful. We drove down the coast to Eureka, California past the redwoods and "Trees of Mystery" then turned east and headed inland through the Shasta National Forest. At Redding we turned south down the I-5 but almost immediately got off onto the old Golden State Highway (Highway 99) through Chico and down on to Sacramento.

Ricky and I went for dinner at a Mexican place in Old Sacramento and, in one of the small shops in this tourist area, purchased a couple of postcards which we seem to have promptly misplaced. I was going to send one to Emma and another to Anisa, both of whom have asked that I send something from somewhere along the way.

After dinner, Ricky wanted to go to WalMart to buy a local phone. I wanted to stay out for the night. So we set each other free. Our hotel was right next to Old Sacramento, only separated by the freeway underpass and a couple of city blocks, well lit and well sidewalked. I felt I could handle it. Rick needed some time away to get his stuff done, and more likely time away from me. I am okay with that; looking after me is not yet a full time job. So off he went on his errands, and off I went in search of trouble.

Unfortunately I was completely unable to get into any real mischief. What I did find was that Fannie Ann's, a favourite for my brother Peter, has stairs. So it was out. I rolled down the plank boardwalk, up and down the neatly placed wheelchair ramps, across the streets to find O'Malley's, a purportedly Irish pub. It was good. They had Murphy's, so I was in.

As I sat there listening to the bartender chat with a few of the regulars, one of them said that a friend of his had been diagnosed with ALS. Then the bartender said a friend of his also had been diagnosed with ALS. So me, never being shy about things, said "Hey. Me too!" Then the conversation got interesting. I answered a lot of questions and filled them in on what they might expect to see as things progressed for their respective friends.

It wasn't all morose; I can crack the odd joke now and then. Once they relaxed the whole evening got rather jovial. We had fun. Then the time came to pay up. My bill came to $8.00! "What gives?", I said to the bartender. After all, I had had more than a few beers. He said "The bar bought you one and so did the guy beside you."

Silver linings!

Drive Time

It's a cold and wet morning here in Crescent City, CA today. There is a chill mist running in off the sea that only the sea lions in the harbour can love. They seem to, anyway, based on the barking and hollering coming from the harbour. I can hear it from the parking lot of my motel across the highway. Today we head inland.

Yesterday we drove the Oregon coast from Seaside down. Highway 101 along this coastline is a twisting, turning two-lane thread that is a motorcyclist's dream. It starts along the seashore, then rises and falls up and down the mountain edges and cliffs for more than 300 miles. In much of the journey you are dampened by the wave driven mist, and in other parts old-growth forests flank the roadway. You start in coastal rainforest yet drive through beautiful meadow and arid, dry hillsides, on one side the mountains and on the other, ocean until Japan.

Not a lot of people know that the Oregon Coast's Highway 101 is part of a much larger international highway system, the Pacific Coastal Highway. This set of connected highways and roadway runs all the way from Lund, BC, Canada, north of Vancouver on the upper Sunshine Coast down to Quellon, Los Lagos, Chile. It is an old highway system originally created as a trail by the conquering Spanish and called "El Camino Real", a name it still bears along parts of the road.

What even fewer people know is that I have driven every stretch of this road from Lund to Tijuana, and then a bit more as I headed south down Baja to Ensenada on a drive one day years ago before the drug wars started, when the only worry on the roads in Mexico was the occasional loose donkey.

On top of that, I've driven most of the side roads along the way, detoured backwards and forwards up the inside and outside of the Olympic Peninsula, driven the Island Highway on Vancouver Island from Port Renfrew to Port Hardy, driven the back road from Port Renfrew, BC to Duncan, BC, driven the switch-backed logging roads across to Tofino before the highway went in and then the good road afterwards, and even driven the limited roads out of Prince Rupert and the bent and broken pavement we call a highway into Stewart, BC and the dirt road over to Hyder, AK.

In other words, if there is a road along the west coast of North America, I have driven on it. Or at least I am pretty sure I have, except for the road to Anchorage, Alaska. I plan on doing that in June. After all, everybody has to have a goal.

By the way, I've driven the east coast from Saint John's Newfoundland to Miami, FL as well as across Canada a couple of times and across the US on I-90. I've driven across Europe, around Bahrain, in the deserts of Dubai and down the cape at Capetown. I've driven around Trinidad (the island) and Tobago (also an island) along with driving from London to Edinburgh twice!

I like to drive.

Seaside

Seaside, Oregon lives up to its name. It is most certainly beside the sea, as will attest the sea gull sitting on the balcony of my hotel room. From the window I can see the long sweep of beach, littered with people tentatively prodding along the line of sea that is the tongue edge of the light surf beating in. Low waves rise in an easy swell from the distant outer sea, lifting along the ocean bottom to rise to small waves that tumble easily to the shore. Inside my hotel room I cannot hear the surf unless I open the patio window and allow the chill air to enter.

I do that, and hear the skwelling gulls and rushing waves. The sea, it's life and lilt are constant. The power of the ocean, this host of all life on our planet, this eternal reservoir, is undeniable and irrepressible. The sea is persistent. From this distance nothing is louder than the shore, nothing speaks more of life than the waves.

My memory is alive even though my body is trapped in this chair. It's only my legs that don't work today, but that is enough to keep me from walking the strand. That is enough to keep my atop the balustrade and stairway that borders the beach, the walk that edges it all. Yet in that memory I have a lifetime of experiences.

As I smell the air I can remember a time when I stood before that running line, that moving edge. I can recall my children laughing as they escaped it, and screaming as it attacked them and they fell victim to its persistent presence and power. I can remember the curling edge of the wave driving up over my toes, foam tickling my ankles, water seeping and creeping into the cracks and pores of my feet, salt healing and washing away the dirt and dust of the day, leaving a crust and film that only the ocean can create.

I remember standing beside the soft thunder and damp mist of the tumbling waves as they break upon the breast of the shore, leaving a glistening sweat as far as they can reach, a foaming edge fronted line, receiving back from the shore that gift of water so quickly and easily set there. I can remember the rush in and roll out, pulling the sand out from under my feet, creating an urgency to move away from the sinking beach beneath me. I can remember the break and edge, edge and break of a thousand wavelets and rivulets and surf.

I can hear; I am not deaf. I can see: I am not blind. Yet to walk the edge of the sea now escapes me.

Socks.

It was tough getting up this morning, tough showering. It takes longer, it's harder to do, the results are conspicuously less than ideal. This whole "starting the day" thing is rapidly losing its appeal. The trials of heaving my legs out of bed, wobbling on my walker to the bathroom, struggling with my socks, battling with my underwear, yarding on my jeans and tugging on my shirt - all of this takes an inordinate amount of effort.

By the time I was up and dressed this morning I was ready to go back to bed. I was exhausted. It has probably taken me a half an hour to recuperate. Even now my shoulder hurts from pulling to hard to lift myself and my dead legs out of the tub. My neck muscles are cramping from pulling to hard through my arms. Even my fingers feel tired.

The problem with ALS is that everything you can imagine takes longer and is more difficult, except the fun stuff. It goes too fast. Think of the simplest daily activity, like putting on your socks. When you put your socks on, assuming reasonable health, you simply reach down and slide them over your toes. Your toes push in, spreading your socks as you go. Once past the heel, you simply pull up.

For me, even the first part doesn't work that way. I cannot simply lean over and start at my toes. When I lean over, I fall off the edge of the bed. I have an "M" rail on the edge of my bed at home, but even with that brace I cannot hold on; I need both hands to put on my socks, just like you do. So I have to lift up my legs. At my size and weight, each of my legs should weigh about 45 pounds. Even with muscle loss, they probably still weight somewhere in the range of 35 to 40 pounds. Try lifting that to cross your legs!

But cross I must, so I lift one leg up and cross it over. Having lifted, I rest for a moment to catch my breath. Then I grab a sock, assuming I remember to have it beside me. On occasion I start this process only to have to restart it after unwinding my leg and reaching out for the socks that I forgot to put close enough to grab. So let's assume all is well in this instance. I open the sock and slide it over my toes, only my toes don't wiggle; they simply curl up under the pressure of the sock sliding over them.

So I open the sock wider. Eventually I manage to work it over my toes and onto the body of my foot. Even with this, the difficulty doesn't stop as all the while I continue to ensure my leg doesn't slide off and slump back to the floor. That happens often enough, since I have no muscles to hold it in place; it's a balancing act while seated. Yet on I go, sliding that stupid sock ever upwards. Finally, with effort, I manage to get it to my heel and gratefully at this time I can drop my leg, since the rest of this activity can be done one-handed, the other hand being occupied with holding on to whatever I can so I don't slide off the bed in a lump.

One sock is on. Now I do it with the other sock. Then I rest before heading onto the next process - pants! Notice I did not mention my unmentionables. Underwear is just too exciting to share.

Sunny Outside, Dark Inside

In Vancouver it's another beautiful spring day. Warm with clear blue skies, the air wafts in off the ocean redolent with the smell of the sea and the moisture that can only come from the open Pacific. Everything here is green, everything grows here, even the stuff you don't want to grow. If I were a plant I would bury myself waist deep in the rich soil of this Fraser Valley and regrow then nerve roots that are dying within me. Alas I am not a vegetable, at least not yet.

I am angry right now, emotionally distressed and seething. Nothing did this to me, no "one thing" triggers this. It is a collection of things that eventually get me to a place where I see the unfairness of my disease. It's the waitress yesterday treating my like I was a mental retard because I was in a wheelchair. It's my inability to climb stairs, needing to wait for the help of others to simply enter a house. It's driving past my one-time home and realizing that "she" still lives there in peace while I die this slow death. It's realizing that I followed the "rules", did the right things, worked hard, paid my taxes, raised my children and now I get to die from whatever part of ALS takes me. Yet others who broke all the rules, abandoned their families, cheated on their wives, refused to work or behave like responsible citizens get to live and enjoy life. There ain't no justice.

I rage at the unfairness. Some of you will say "life isn't fair." Get a terminal illness and then tell me what you think. It's easy to say "life isn't fair" when it's not being terribly unfair to you at the moment. Think of the cruel irony of it. I finally get free from a difficult marriage after 32 years of trying, working, giving, carrying the load, paying the bills, looking after my family. Now I have 32 months, and for this last time of my life I am once again trying, working, giving, carrying the load, paying the bills, looking after myself.

I rage at the emotional unfairness, the physical unfairness, the reality that each moment this terrible disease is eating away at the edges of my vitality, snipping the thread of my life shorter and shorter. It steals from me, not just my physical strength but my spirit, my emotional strength. With every tick of the clock I am lessened.

It's hard not to let this anger out, not to let it leap from me unexpectedly, taking innocent victims with it. It's hard not to let these emotions go wild. Managing myself is tiring, exhausting. I need those who help me, and I am angry that I need them. This too must be managed.

Sometimes it's all too much.

Salmon Arm

It's  beautiful, crisp, clear spring morning in Salmon Arm. The sun has climbed up over the nearby peaks of the Monashee Mountains. The melt has begun and winter is giving way to spring. So far it looks like it will be another sunny day on the road.

Yesterday was that strange combination of ordinary and extraordinary. I've done this drive so often that it seems almost banal, ordinary. Then I think about where I am and what I am doing; suddenly I realize how extraordinary it is.

I left Calgary at around 11:00 and headed west on Highway 1. Behind me, flat prairie to the east, around me the rolling plains that work their way west, crumpling and folding into the foothills. These easy, rolling slopes are the youngest part of the Rockies, covered in pine and perfect for ranching. Behind them stands the towering slabs of granite, bent and warped as the world has made them, serrate stabbing wolf's teeth piercing the baby blue sky, white. Where the sides are so steep that even snow cannot hold, the grey granite mottles their face. Clouds fleck them like foam.

The road is a hypodermic, stabbing into the heart of this mountain stronghold, injecting motorized mankind into the river valleys and passes that are the arteries of this rugged landscape. These ancient castellate rocks have been pushed up hard and high, shoved into shapes and forms that rise in great vertical ridges, cutting edges. Even mountains are born, rise up and die. The cycle continues

Spring is coming and the mountains know it. Water gushes from pores and rock cuts as the snow and ice give way. Where icicles can no longer hold onto rock, they fall, leaving chunks of blue-green ice that form small ponds and pools alongside the road. Creeks crash into rivers, rivers course and flow into other rivers, eventually all this water makes it's way to the Pacific and will return again to this landscape as snow next winter. The cycle continues.

Where they can, verdant evergreen forest cling to the slopes like children, seeking food from the meager rocks and water from the snow and scant summer rain. These darklands, away from the prying eyes of people in motorized metal boxes, host a rich panoply of wildlife; moose, deer, elk, bear, mountain goat, mountain sheep, eagles, hawks, songbirds, ducks - every kind of small creature you can imagine and some you can't. They are born, live, die, all deep in this wooded terrain and we do not see.

I think of my Dad as I make this drive. He and I spent a lot of time hunting and exploring this country. Many's the day when we would head up into these mountains, ostensibly looking for deer or bear but really just looking, feeling the soar of trees and slice of mountain tops. We shared our love of this wilderness. I think about my own feelings these days and I wonder what he felt on our last trip, when my brother Adam put together a fishing expedition out of Port Hardy the month before my Dad died.

By the time we went, my Dad knew the trip would likely be his last. He knew he would never see the North Island again, never fish the open water again nor roam the roads along the way. I am not sure if this is my last time on this thin line of mountain road, probably not. That time is coming soon enough.

It was a good day. Even the flat tire wasn't so bad. The same thing happened once when my Dad, my daughter Katie and I were in his truck exploring the back country around Creston, pretending to be hunting. So I thought of him again. The cycle continues.

Road Trip - Day One

Today is the first day of my road trip. Today I plan to drive from Calgary to Salmon Arm. It's a pretty drive through the mountains although this time of year is always a bit of a challenge. You never know what the weather is going do to. The drive through the Bow Valley up in Banff National Park is generally good, but when the snow starts to fall or the road ices over, it can quickly turn into a skating rink. Kicking Horse Pass and Rogers Pass are almost always bad at this time of year.

This will be the true test of my hand controls and mobility. To be honest, I am a bit worried. Then again for much of my life I have had this attitude, doing things that others felt were dangerous or foolish but I did them anyway. Being afraid never stopped me before and I see no reason why fear should stop me now. I plan on living before I die.

It's only about five hours on the road and I plan on taking a break at Golden and maybe even Revelstoke. It will be daylight all the way and there will be plenty of other people on the road. I'll take it easy, drive carefully and be cautious.

Last night was when the real fun started. The gang came over to help me load the truck and rack the wine. It turned into a not so impromptu party. My friend Myra had come over during the day to help me pack my suitcase and the rest of the team helped load my picnic gear and other road-trip stuff. While Elizabeth and I made dinner, Andrea and Ryan got my sheets from the dryer and made my bed. Then we ate prodigious amounts of BBQ Ribs and Seafood Risotto. After dinner Brad took the lead and we racked the wine.

This morning my brother Peter came over to help me with the last few things and as I write the entry my friend Anisa is helping me with the last of the tidying and dishes. In a few minutes I will be underway.

This blog will likely morph into a travelogue over the next few weeks. I hope nobody minds.

I Write

I wonder about this blog sometimes. Everyone has an opinion on what I should write, what I should share, what is appropriate and what is inappropriate. It always intrigues me, the differing kinds of feedback I get. Some like my writing style, some like my commentary, some just want the facts on how I am doing.

My friend Mike had the best comment on my blog. Last Christmas, when he and Brian took the time out of their lives to drive me down to Vancouver so I could see my family and spend a day on my boat, I was writing a post for my blog that I thought might be too much. So I read it to them and asked what they thought. Mike said "The blog is therapy for you, not for anyone else. Write whatever you want."

So that's what I do. Some days I write about the brilliant, blazing sun glaring at me through my window. Other days I write about the challenges and pain of ALS. Still other days I write about things in my personal life. The reality is that I almost never know what will come out of my fingers when I sit down. It just comes out.

My original plan for today had been to write something philosophical about my first full day as a retired pensioner, something about the conflicting feelings of fear and relief. My plan had been to share the difficulties of getting out of bed that don't go away once you are retired, the joy of having plenty of time in the morning to make a latte, the pleasure of not having to shove my feet, curled toes and all, into a pair of dress shoes so I could look decent at the office.

So much for that plan. In fact, so much for any planning at all. If I was a better writer, perhaps more disciplined and aware, I might have a writing plan, an approach, a methodology and metaphor. I have none of those things. If I was a "writer", perhaps then a book would leap from this keyboard, fully formed and ready to be a best seller. That is unlikely to happen in this forum, with this media.

Writing this blog is something I do for me, not for profit, not to entertain or amuse, not to influence or curry favour. I write because I must.

My Last Morning As A Working Man

It's official. As of 5:00 PM today I am an unemployed terminally ill ALS patient living off a combination of disability pension, my own retirement savings plan, and whatever assets I can salvage out of a doomed marriage and costly divorce. As of 5:00 PM today, I change from a producer to a consumer, from a provider to a non-provider, from a giver to a taker. It's quite a change for me.

Today will be a day filled with mixed emotions, and in many cases raw emotions. I work with wonderful people who, in three short years, I have come to cherish and care for. My work is rewarding, interesting, fulfilling, exciting and challenging. Where I work is a humane organization; those I work for have expressed a great deal of concern for my welfare after I leave. They've even provided opportunities for me to come back on occasion to "spot consult". Their concern is not my economic state, it is my emotional and mental state. They know how much trouble I will have adjusting to life without my work and how important it is for me to feel like a contributor.

The economics are a bit scary. I have about a year or so in my retirement plan. It could last a couple of years if I curtail my lifestyle, something I had planned to do in a few years when I really retired. With my disability pension it might last even longer however most of my time would be spent sitting at home staring out my window.

So I am going to spend it and enjoy the two and a half years the doctors suggest I have remaining. I hope I live longer; I hope I outlive my retirement savings and whatever money I get from the sale of our house and other assets. I hope I live long enough to be a burden on society. I hope that one day people will laugh at me and my foolish fears of a shortened life span. The numbers don't look that good, but I hope it.

In the ultimate irony, in yesterday's mail I got a letter from the Alberta Maintenance Enforcement Program. My ex-wife continues to hound me for money. There she is, healthy, fit, and capable of working yet refusing to do so. There she is, living rent free in our fully paid family home. There she is driving around shopping, spending, and living. Yet she expects me pay for her life, even though I am suffering from the depredations of ALS. She expects me to to continue to work so she does not have to, even though I can no longer walk, even though each day exhausts me, even though I am sick enough that I cannot do my job any longer.

Her greed and cruelty surprises even me. I will be glad when this divorce is done.

Fatherhood

Yesterday I wrote about the kind of life I had lived. There wasn't enough room for all of it, not if I wanted to keep from writing that book. There are plenty of other things I have done in my life that have been exciting and interesting and challenging, for example having kids and raising a family.

It's interesting to note that while many of my male friends posted and emailed me with very positive comments about yesterday's post, my female friends have asked me "What about being a husband and a father?" I continually find it fascinating the way men and women look at life and the world differently. A woman's take is almost always different than a man's.

The thing is, I don't think if being a husband or father was something I did. I think of it as something I am. They are not part of the life I lived, they are part of the person I have become through that life. In an earlier post I wrote about "just being a Dad". You see, fathering a child is nothing. Any male with the right sperm count can impregnate any woman with a ready ovum. Children occur by accident, on purpose, with or without planning, even through rape. Making a baby is easy. Raising one is hard.

In that regard, I don't see myself as "doing" fatherhood. I see myself as being a Dad. That means far more to me than simply creating children. It means loving them, guiding them, caring for them, and then, when it is most difficult of all, letting them go either by helping them become adults or, in some situations, allowing adulthood to fall upon them. It means willingly giving up your life so they can have theirs.

The whole husband thing is a lot tougher right now. I fell in love, there is no doubt about that. Did she? I would like to think so. After all, working at a marriage for 32 years is not something you do out of compulsion I would hope. Being a good husband is more than falling in love. I know a great many men who fall in love and make terrible husbands. Being a good husband takes the same work, effort, care, love, compassion, understanding and willingness that is involved in being a good Dad.

I think I was a good husband. I loved and cared for my wife. I worked hard at being there, contributing, giving, understanding. I worked hard at making a life where she felt that she was safe and in control of things. Then, as time rolled on, it became impossible for me to do it anymore. As I became increasingly less relevant in my marriage, I became less of a husband. Then the day came when there was no place for me in what used to be my home, what used to be my marriage. I had no say in the relationship, no say in that house. I was irrelevant; I was a husband no more.

So what am I? I am still a Dad. I will always be a Dad. I will always love my children and will always be as much of a Dad as possible. I would like to be a husband again; I miss having a woman's point of view in my life.

These things, being a Dad and being a husband, are not things I did. They are who I am.

My Life

Just because I am sad about today does not mean I regret yesterday. I look back and I see a life people write books about. I have lived an extraordinary life.

I have sailed open seas, climbed mountains, hunted big game and had it hunt me back, seen the midnight sun and the sands of the Arab desert, felt the pounding rain of the tropics and the freezing mist of the open Atlantic. I've driven all over North America, England and much of Europe. I've driven ice roads, dirt roads, back roads, empty roads, crowded roads and every kind of highway at every kind of speed you can imagine.

I've visited amazing cities both ancient and modern and wilderness a thousand miles broad. I've stood at the top of the Empire State Building and the bottom of a dripping, cold, crystal encrusted cave. I've fished for salmon on the open ocean and in the rivers of BC, for cod in Newfoundland, for trout in Ontario, for pike in Alberta, for marlin in Hawaii, for barracuda in Florida and for Arctic Char in Tuktoyaktuk.

I've driven my truck up mountain roads and ridden my motorcycle through the valleys. I've flown in jets and gliders and helicopters and small planes. I've skippered everything from my own sailboat to a small canoe, from an open tin boat to a coastal cruiser. I've ridden horses, camels, cows and even a goat once. I've walked the open tundra, been dune-bashing in the desert, and driven Canada coast to coast to coast.

I've seen whales breach next to my boat, dodged dolphins while under way, fed eagles from the afterdeck and chased herons and seals off the foredeck. I've canoed open mountain lakes and kayaked up ocean inlets and outlets. I've eaten almost every kind of food you can imagine, and some you probably can't. I've dined in five star restaurants in South Africa and eaten at road side stands in Tobago. I've shopped for spices in the Middle East, suits in London, fashions in Milan, serapes in Tijuana and cracklins in Louisiana.

I have enjoyed classical opera and ballet, been to rock concerts and folk fests, played bagpipes in a pipe band, played my guitar for a beautiful woman on a beach. I've given somebody I didn't know money for no reason at all, simply because I thought they needed it. I've helped strangers, friends, family and even foes. I've built houses up and torn them down, seen the sunrise from a mill deck along the Fraser River, seen the mist rise from the meadow and the rain fall in Dubai.

I have lived a fearless, full life. It's not that I have never been afraid; these days I am much afraid. I just never saw a lot of sense in letting that fear stop me from living. I've lived a life that went beyond a zero sum game, where it was always possible to go out and find something more, more to do, more to love, more to live.

In terms of a bucket list, mine is very short. For much of my life I've lived as if each day was my last. I've seen something I wanted to do and found a way to do it. When choosing in my work/life balance, life, either on my own or with my family, always won the weigh-in. When deciding between doing it today or delaying for some potential future, I always chose today, or as soon as possible.

And now this.

If I have learned anything from all this, it is that delaying today in the hope of something better tomorrow is always a bad idea. Putting aside now for some doubtful, misty future will never lead you to a full life. In fact living in a hold out for the future simply means you miss today.

Never give up the moment. Live before you die. When I die, I will know I have lived.

Suicide

It's been a tough start to my day, the slow, struggling kind of a start that makes me wonder if it really is worth the effort. My legs seem heavier than normal, or perhaps my arms don't feel as strong as normal, or maybe I am just feeling sluggish. I don't know. I managed to get onto my shower seat only to discover that the shower head was in the upper spray position instead of being set for hand-held, after I turned on the shower. I can't reach the shower head anymore unless I am outside the tub, since standing up in the tub is too dangerous. Perhaps I should have tried, I don't know. I just worked with it as best I could.

It took me longer to get dressed than normal. There was nothing different about it, it just took me longer. I emptied the dishwasher and got the garbage ready to go; neither of these were difficult, they just take time. One day I simply won't be able to do even these little things. One day I will lack the strength for the most basic of life's activities. Then what?

I think about it, you know. I mean, given my diagnosis and prognosis, I don't know if I want to go all the way through this. Given the late stages of ALS, the loss of ability and capability, I'm not sure I can deal with it all. So I think about it.

Hell, I don't just think about it. I have a plan. I have the required ingredients and I know the correct dosage. The problem is that by the time I am likely to want to take the pills, I will likely be in some sort of facility where they will take them away from me. I can't leave it so late that I'm in that spot, but I don't want to go too early. So it's a tough call. What to do is easy; it's when to do it that presents the real challenge.

It's more than just the progression of ALS that does this to me. It's the loss of life between now and then that is so depressing. I am single. The more my condition worsens the more I become convinced that I will die single. Even thinking about that as I write this blog is enough to depress the shit out of me.

The truly ironic thing is that while I am strong enough to enjoy life, I don't want to end it. Yet when the time comes that I am ready to end it all, I won't have the strength to do what needs to be done. While I am capable and able, I want to live life as much as I can. I don't know how I will respond when I cannot eat, when I cannot talk, share a laugh, drink a glass of wine. It's frightening.

Depression is the real monster. It breeds fear and thrives on my doubts and insecurities. It's easy to become depressed in this situation. It's easy to slide into the darkness, thinking there is no good reason to keep going, to keep fighting. It's easy to give up. That black beast lives in the corners of my mind, caged, waiting to spring free and heave its dark blanket over me.

The psychologists have no tools to deal with ALS related depression. Pills work but they mess up other thing; bad dreams, no wine, stomach problems. The psychologists don't try to talk you out of it. Instead they focus on "quality of life" and "reasons to live". Right now I have a pretty good quality of life; when I doubt that, I remind myself that loss of legs is nothing compared to loss of arms or loss of speech or breathing. Right now I have reasons to live; my children and grandchildren, my community, a social life.

I will never lose my reasons to live. I will lose my quality of life in a steady retreat. I don't know when, but one day the loss of one will reduce me to where the other is not enough. One day I will be done. Then what?

Silence On A Sunday Morning

It's a quiet morning. The silence of my apartment is heavy, made heavier by the snow outside dampening all traffic noise. Of course the fact that I cannot hear all that well, especially out of my left ear, helps too. Nobody is home except me; I sit in peaceful calm, no intrusive noise.

It's a quiet morning. I hear the ticking of the clock behind me. I think my tap in the kitchen may be dripping; perhaps I didn't quite shut it off all the way. The clicking of the keys as my fingers travel across my laptop is about the loudest thing. This silence has weight, mass; it is heavy, blanketing me as the snow blankets the ground outside. This silence drips into every pore and crack, weighing me down like the snow weighs down the branches of the tree outside my window. This silence is living, pervasive, thick.

It is a quiet morning. I don't mind the silence that much this morning. I am just surprised by its density. I am alone in my apartment. A friend came over last night. We watched the Canucks lose another hockey game. We ate left-over Chinese food for dinner and had chips and Pina Coladas and Ceasers. I didn't stay up all that late. In fact I went to bed early in the third period of the game. Others in my "gang" are coming over today and still more will be around to help me during the week.

I often say I am lucky when talking about my son and my friends all checking in on me, making sure I am not alone or at least not alone as much as I might be if I didn't have them. When I say I am lucky what I really mean is I am grateful. I never seem to have enough words to tell them, especially Ricky, about my gratitude. I try but it comes out maudlin. I try but I can't really express how important they are in making this journey bearable. It's bad enough being lonely, which I am a lot of the time. To be alone and lonely would be so much worse.

Some of you know that I have a Christian faith, a belief structure that helps me. I am not all that expressive and in many ways don't act or sound like your church going bibliobot. I don't know what Heaven or Hell looks like, nor do I find a great deal of language in the Bible about it. Much of what the Church believes today is interpretation made by others. I like to think for myself.

Today I am thinking about the impact my friends and my son have on my life, how their engagement, caring and attention makes my life better. Perhaps this is what Christ meant when he said He will be found in all of us. Each of these people, with their powerful presence in my life, is a living embodiment of what He has given me, a daily reminder of the gift of my life. Each person is present now, for me.

This is the gift for which I am truly grateful. Them. Just them.

Standing

Here I sit in my Ikea Phoa chair with the leather cushions, laptop in my lap warming my upper legs, coffee at hand nearly done. Outside the sky is a bleak grey that is almost white. There are whiffs of light snow bristling and bustling past my window, rising and falling with the wind as if each flake was a fairy flying by. The snowflakes are not in a hurry, nor am I.

Sitting is something I do a lot of these days. When I get up in the morning I use my walker to get to the bathroom. I sit to have a shower. Then I use my walker to get to the kitchen where I sit to make my coffee. I rest my coffee cup on the seat of the walker and walk it into my living room where I collapse into my chair, look out the window, sip my coffee and wonder. Then, to brave the outside world, I use my wheelchair.

It's not that I cannot stand. As you may have noted, I use my walker inside my apartment, mostly. On really bad days I use the wheelchair to get from the living room to the bedroom. But mostly, in most situations, for the short distances indoors, I use my walker. So I can stand, and I can even pretend to walk.

This is a bizarre disease. By attacking the motor neurons for voluntary muscles, it leaves other parts, like involuntary muscles and ligaments and bones, all intact and functioning. Since it is localized in my legs for now, my hip muscles, my butt muscles, my back muscles and even the partially functioning muscles in my legs allow me to move my legs somewhat. So I can use the walker and use these other muscles to get my legs to go forth and back with just enough lift to clear the tops of the carpet threads. On occasion the dreaded toe-drop gets me and my foot folds in under itself. The walker helps me not fall down.

Standing is certainly still in my repertoire. Yesterday at work I stood up, something that shocked the hell out of a lot of people who had not seen me stand or get out of my wheelchair in any way in a long time. By pushing up with my arms I can get past the missing leg muscles. Once up, it takes almost no muscle activity to remain that way. The ligaments, even the ones damaged when I fell at Christmas, hold my knees mostly in place. My hips and back provide balance and limited leg muscles allow some motion. On the other hand, God help me if I have to walk anywhere or rotate about. That's when life gets exciting.

I can stand, albeit not for long. So I can get things out of the cupboard, I can reach for clothes in the closet, I can stand up to do what men stand up to do. Don't ask me to stand as long as a military guard. Don't dare ask me to walk without a walker or cane. Just don't be surprised when you see me stand as I move from my chair to my wheelchair. Standing up is exciting while I can still do it.

And don't be surprised when I fall down on occasion.

Physiotherapy

I went to physio-therapy this morning. It's not as simple as all that. The physiotherapy clinic is in the South Calgary Health Center, the new hospital on the edges of the barren wastes of southern Alberta, as far south in the Calgary city limits as it is possible to go without a passport. It's about a 45 minute drive from my apartment to the clinic and my apointment was at 9:00. I had to get up on time today.

Going to the clinic has changed somewhat over the last couple of months. As my legs have deteriorated the emphasis has shifted from retaining mobility to stretching dead muscles in order to minimize cramping. The muscle loss in my legs is stunning; the large upper leg muscles hang like dead meat, flopping about as I move my legs from side to side with my hands. The loss is now visible in my lower legs but not as much. I have lost about 100% of the use of my left leg and 85% of the use of my right leg. Oddly enough I can still scrunch up my toes, so if I had a way to retreive what I can clench I could still pick up stuff with my toes. I can't.

The physiotherapist worked with me today on stretching the muscles that are atrophying in my upper legs. As these muscles die the tissue becomes less and less limber. The lack of use means they sit there and tighten; there is nothing happening to cause them to move so the just seize up. This means they are more prone to cramping. There is no strengthening exercises here, no sweating or workout. This is plain and simple stretching to keep things loose.

I have never needed a physiotherapist in my life so this is an all new experience. I've never had back trouble except when I've actually damaged it, nor have I had any other sort of muscle trouble until recently. Basically my body has always been a machine; I fed it, I worked it, and when I damaged it, it would heal itself. Now it needs help.

At the close of the session we talked about my getting an Ankle-Foot Orthotic. These suckers cost about $1,000. Fortunately there is a possibility that AADL (Alberta Aids to Daily Living) will cover 75%  of the cost but I won't find that out until I actually order the AFO. This devices is intended to reduce stumbling by lifting my toes, avoiding the dreaded toe drop. I am only getting one for my left foot at this time as I still have some small movement in my right foot. Once that goes I will either have to get another or give up walking altogether, even in my apartment with my walker which is where things are right now.

We also talked about Home Care for daily physiotherapy. The muscle wasting will become more and more significant, both in my legs and as this disease moves into other parts of my body. The physiotherapist has recommended that we look at having someone come in daily to work with me on these muscle stretches. It means more intrusions and more dependencies.

Plus, I was reminded once again that I cannot drive and enjoy a Timmies. I picked one up on the way back from the hospital. No worries, I thought, I'll drink it at work. Except I can't carry a coffee and drive my wheelchair either. So a perfectly good Timmies sits in my truck while I type away here at work.

Grrrrrr.

Riding Trees

Between January of 1967 and sometime in either late 1970 or early 1971 (memory fails me on the exact timing), I lived in Stave Falls. My father had purchase 27 acres of rough land out in the backwoods along the Dewdney Trunk Road, right along the border of Mission and Maple Ridge municipal districts. Back then this was truly rural; it might as well have been in another country it was so far from anything.

There were 12 children at home in these years, the combinations of my Dad's five boys with my Mom who was his first wife, my step-mother's 6 children from her first marriage, and their daughter, my half-sister. It was a crowded house with plenty of kids, constant noise, and about a million square miles of bush right out the back door. In those days the whole area was one big logging region, so there were both current logging operations and the remnants of old logging operations, constant reminders of what built the province of BC.

Our house was small, just under 1,000 square feet. We had six boys in the main bedroom, four girls in the attic, two girls in one small bedroom, and my Dad and step-Mother in the other small bedroom. We had a oil stove in the kitchen for cooking and heat in the winter, and we had a wood and coal furnace in the basement.

The oldest boys were the firewood cutters. As the second oldest, part of my regular chores was cutting down trees and cutting them up into firewood. We were supposed to do this in the summer, stacking the wood into the basement for use in the winter. That way it would have time to dry before we had to use it. We were not always successful in managing that timeline and many a winter's morning we would be up early trying to light a fire in that damnable furnace with green, wet wood, producing more smoke than heat and getting nothing but trouble for our efforts.

So we cut down trees. Most of the time we cut trees down with a bucksaw. I was only 12 or 13 at the time, and I was small for my age. My big brother was larger and stronger, so it was mostly he and I who did the heavy cutting. Sometimes we had a chainsaw. Sometimes it worked.

This was where the fun began. We would find a suitable tree for firewood. Then one of the younger boys, usually Peter or Jim, would climb the tree. Then, between Adam and me, one of us would stand on the chainsaw handle to hold it down while the other pulled the cord to start the saw. After a while as we grew bigger and stronger, or when we had a smaller chainsaw, it took only one of us to start the saw.

Once the saw was running, one of us would grab it and we would cut down the tree, boy on board and all. Then the boy in the tree would ride it down, holding on for dear life as it crashed down, jumping at the last minute to avoid landing on other trees or in the brush that almost always entangled the falling logs.

Sometimes we took the ride even further. We hooked up logs to the tractor, or to some old car my Dad bought cheap. Then we rode the logs in as the tractor, truck, car or whatever, towed them out of the back pasture up to the barn. It was like skiing or surfing, only on the small alder logs that we towed behind the tractor.

I think that's where I learned that just because it was work didn't mean it couldn't be fun. It's also where I learned about consequences and the importance of meeting a timeline. Oh, and how to dance.

Sadness

Sometimes, for no apparent reason whatsoever, I will be sitting at my desk or sitting in my chair at home and this wave of sadness pours over me so strongly it is almost physical. One minute I am reading or working or thinking, and then suddenly out of the blue I feel immensely sad. It's not always about ALS; I know this happens to other people too, normal people, people who don't have a terminal illness.

Yesterday morning I awoke feeling that way, swamped in the distress of my disease, wondering whether or not I should even bother to get out of bed. In reality every day when I wake up I start the day thinking about ALS. Every day begins with "Ah shit." Then I get past it and move into life and living. Yesterday morning there was no getting past it. I just wanted to stay in bed a feel sad, sliding deeply into my own personal slough of self-pity.

It doesn't work, you know, sliding down into self-pity. It may feel overwhelming at the moment but in reality is is a passing cloud, a moment when weakness takes over and blessings are hidden. To move onward all I need do is take the first step, do the first thing, think the first thought past the screen door of my depression.

Most mornings I think "I'll get up and make coffee. Then I will write and feel better." I know this is true because I do it so often. Yet on the morning in question I was lacking even that emotional strength. I didn't have the psychic energy to consider even getting out of bed. So instead I thought to myself, "All I have to do is swing one leg over the edge of the bed and the second one will follow, sort of." My legs don't work all that well so it's a bit of drama to get them moving.

I did it. I took both hands and grabbed the middle of my thigh. That's how I move my legs these days, mostly by using my hands to pull them up, down and around things. So I grabbed my left leg, the one closest to the edge of the bed, pulled it up and then let it slip over the edge of the bed. It was uncomfortable enough to entice me to do the same with my right leg. That combination was awkward and clumsy enough to convince me to sit up, so I grabbed the walker from beside my bed and pulled myself into a sitting position.

I was up. After that it was a simple matter of schlumphing into the bathroom and back, then sliding on the bed over to the dresser to get socks and underwear, then grabbing a shirt and pants from the closet and tossing them over to the bed, and finally assembling the parts into a reasonable facsimile of a human being.

Today I feel better. I am still sad, partly because I just reread my entry about Bert. I've lost other friends over the years, good friends. I've had family pass, just as we all do. Yet thinking about Bert and what he lost really hits me sometimes, quite often in fact. But I am up, showered, shaved, having coffee and writing this entry.

You can't deal with sadness or depression all at once. You have to do it one leg at a time.

Bert Menger

July 21, 1977 was my 22nd birthday. I very nearly did not make that birthday. My friend Bert didn't at all.

On Monday, July 18, 1977 I was at work at Jack Fraser Men's Wear. It was about 4:00 PM when Bert came by and said he and some other friends were going to go drinking "down by the Fraser River". We did that a fair bit. He asked if I wanted to go. I asked my boss if I could leave work early and my boss said "No, you have to finish your shift." So I told Bert I would come find him later, and I stayed until about 6:30 PM.

Bert and I were both in the Business Administration program in what was then Fraser Valley College, but is now the University of the Fraser Valley. Bert was from a fairly repressed Dutch Reformed background and was stretching his wings into the world. He had a hot car, a powered up green T-Bird I think, and we would often hang around together.

Bert liked to come around to the mobile home where I lived on Clayburn Road, just outside of Abbotsford. His family lived up in Clearbrook but he would often come down either after classes or for no reason at all and we would sit around, tell stories, make jokes, and drink a few beers. We got along well together. He had other friends, lots of them from his church and from school; I was just one of them.

So back to July 18, 1977. After work I went looking for Bert and the gang. I drove down to a number of the places where we would normally have been sitting by the banks of the Fraser River on a warm summer's night, drinking beer and laughing at bad jokes. Bert and the others were not to be found, in spite of my best efforts, so I went home. After all, I was working the next day.

On Tuesday I went to work and didn't hear from Bert. This was not unusual. We most often met up on weekends or when he would randomly show up at my trailer. Then Tuesday turned into Wednesday. By Wednesday I was wondering what was going on. Then I found out.

While at work on Wednesday the RCMP came by the offices of Fraser Valley College in Chilliwack where I was doing a summer work study program. They sat some of us down and told us that Bert, along with Jon and Evert Den Hertog and Leola Guliker had been shot, murdered by the Fraser River, their bodies dumped in the water. Bert's brother Eddie escaped, fleeing into the night with the sounds of gunshots and screaming.

A man named Walter Madsen had killed all four of my friends, and nearly got Eddie too. His motive was to steal Evert's truck to use in a plot to kidnap Margaret Trudeau or some madness like that. He was a former mental patient, a schizophrenic. He stole the truck and drove off into the night after dumping the bodies of Evert, Jon, Bert and Leola into the Fraser. The pickup truck was later found covered in blood in the parking lot of Pacific Centre in downtown Vancouver.

Bert and Evert were found that night after Eddie got to the police. Jon was found a few days later. Poor Leola's body wasn't found until it washed ashore at Point Grey the following sprint. I remember going to Bert's funeral, seeing his body. I saw that grey paleness and the washed damaged from the river, the cut on his lip. That image will never leave my mind.

I often think about the moments of chance, the events that turn an ordinary day into life and death. I think about Bert a lot. I wonder what his life would have been had he not been so cruelly killed. I wonder what might have happened had my boss said "Sure, take off".

I got to live. I may have a terminal illness but I have had an amazing life. Bert didn't get that chance.

Road Trip

Okay, I can do a road trip. Sunday was my experiment with long distance driving solo in my truck. I drove down the Pincher Creek on Highway 2, then drove back up on the Cowboy Trail. Leaving at around 10:15 AM, in total it was a five hour drive but I stopped in Pincher Creek for an extended lunch. No beer, just coffee and seafood fettuccine. On the way back I detoured out to Bragg Creek, just for the heck of it.

I learned a few things about driving long haul on my own. First of all, and most importantly, I learned that I can do it. With the wheelchair crane, seat lift and hand controls I can, for the moment, independently get into my truck and hit the open road. I am still mobile; I can still go when and where I want.

The next thing I learned is that I need to use cruise control a lot more. For much of my driving life I have not used cruise control. I've always preferred the feeling of the gas pedal and brake, the sense of contact with the road and my vehicle, that awareness that comes through sensing the motion and pulse of the road beneath the wheels. Holding the hand control for the gas pedal for long periods of time is extremely tiring. I need to use the cruise control more often, switching to hand controls when road conditions demand it. If I have to do a long stretch with only hand operated acceleration, I will need to rest more often.

Thirdly, I learned I have to go slower. I need more time, if only a fraction of a second, to respond to changes on the road with the hand controls. Today I had an occasion to have to slow down rapidly. My instinctive reaction was to move my foot. Of course my foot didn't, and for a moment I had to think about what to do. Given that reaction, I need to be sure I have extra space and time when I need it.

Fourth, I learned that driving along with a coffee in hand is pretty much impossible. From this point on if I am driving, I have to stop, and I mean really stop, in order to enjoy a Timmies. I simply don't have enough hands to drive at the ready, be on the brake, and use the hand accelerator while holding a hot coffee. I didn't try it today; I imagined what I might do had that been the case. I didn't like the possibilities. So now a stop for coffee means parking the truck and enjoying it and then heading out again.

Finally, I learned that my days will be shorter. My own sense is that I could still do Calgary to Vancouver in a day. Now, though, it makes more sense than ever to take a little extra time, be a little safer, and get a bit of rest along the way. Being tired is an unnecessary risk; it means staying somewhere along the way, going slow and enjoying the ride.

Now, if someone comes along with me and shares the driving, so much the better.

Stability

I was born under a wandering star. The need to move, to get out, to explore and experience the world around me has been ever present in my life. I often wonder if this is nature or nurture. As a child my father was in the Canadian Navy, so we started in Victoria, then went to Halifax, then came back to Victoria. After that it was East Vancouver, then Stave Falls, then West End Vancouver, then Burnaby, then back to Mission then over to Abbotsford, and a few brief stopovers in between.

Even within those cities we moved about. In all of my childhood, I never went to a school for more than three years and I went to as many as three different schools in one year. School change was normal, regular, persistent. In order to do thirteen years of schooling, I went to nine different schools.

All that moving taught me a few things. It taught me that there are new and interesting people and places everywhere in the world. It taught me not to fear change and newness, but to revel in it, to find the adventure in it. It taught me that foods taste different in different places, even in different neighbourhoods in the same city. It taught me that life is different for those who travel about.

Moving taught me the frailty of possessions. My dad used to say "Three moves, one fire; same thing". He was right. When you moved stuff got broke. But it was just stuff, unimportant, something you used up in life. Special care and consideration only applied to those few precious things that meant more than what they were.

As a young man I thought all this moving about was bad for a family. After all, my family was fractionated and spread about, filled with divorce, distress and drama. My family was mobile, constantly moving and relocating and finding new places to live. So I set about finding a woman who had never been any place beyond Abbotsford, a woman who was content and even demanded to stay in one place, a woman whose family could be found within a stone's throw of each other.

I pretty much raised my family primarily in one house. My wife's family was always nearby, ever present. My children were born in the same hospital as their mother and their aunts and uncles and cousins. They went to the same school as their grandmother, all of them. They all went to the same high school, had the same teachers, knew each other's friends.

Yet even with that, my children are spread all over the country. My daughter and her husband live in Victoria, another daughter and husband in Abbotsford, another in Toronto, and my son here with me in Calgary. They are all travelers, explorers, people who love the enchantment of far away places. They all know how to build a life no matter where they are.

So perhaps there is no right way or wrong way. Moving about teaches you things; staying put teaches you things. Stability isn't found in staying in one place, it's found inside of yourself, by staying open, true and aware. Stability is not found in where you live, it's found in how you live. Stability is not where you are, it's who you are. Having someone physically close is no indicator of emotional closeness.

Today I am going to get in my truck and go for a drive. I am going to wander. Something interesting will happen. That's the way it works.

Anna Says...

A while ago I asked if any of you wanted to be a guest blogger one day. Anna Turner, a force of nature with whom I work at the CBE, took me up. Just so you know, Anna has faced her own challenges, risen above them and lives an amazing life. She runs marathons! She is determined, lives her beliefs and is never afraid to do the right things and make the hard decisions. You can find Anna's blog at http://www.annasantidotes.com/. Here is what Anna has to say...

So Richard McBride...the name means something to you I know.  I am going to share what it means to me.  I will start and end with two quotes that remind me so much of Richard and his legacy to us, I wonder if anyone else will agree with my quotes “Courage is being scared to death, but saddling up anyway.” ~ John Wayne

To me when I first met him, it meant stubborn PM who accomplished things.  Richard has to learn by feel not by example in most cases; the great news is he is a quick study. Then when I took the time I learned more about the man behind the business, and found him to be witty and full of knowledge on many topics.

I learned that first and foremost he loves and adores his children, and believes that his best for them is not good enough.  I have a hard time believing Richard’s best is not good enough. I learned he loves to be on the ocean sailing smelling the salt air.  I learned he is passionate in his love for him Mom and brothers, and tells tales (maybe they are yarns) of the mischief he has gotten himself into as a youngster and as a grown up.  

He loves a great sip or two of scotch and makes his own wine.  He hunts, likes road trips and is a world traveller.  He is at the end of a fulfilling career which he will miss as will the colleagues and the friends he has made along this path.

He is determined which is apparent in the work he has put into to pimping out his ride so he can drive for as long as he can. He is a fundraiser, and he has a goal http://richardislivingwithals.blogspot.ca/2013/02/my-goal.html if he will let me I will run while he rolls. He is honest, seeks knowledge and has shared his life openly and truthfully with anyone who wants to know. He has made missteps and he has made successful leaps.  He gives credit where credit is due.

I guess in the end I know very little about the man, but the more I read, the more I learn, the more I learn the more I respect him as person, and believe he has made me and many others in his path better people. I am proud of the opportunity I have had to get to know the man, and add him to a list of awesome friends, and I wish him peace and joy throughout his struggle.  I hope you have happy trails and tales to share with many for as long as you can.

When I think of Richard’s passing and leaving us behind for somewhere better I think of this quote from Dr. Elisabeth Kubler-Ross “When I die I'm going to dance first in all the galaxies...I'm gonna play and dance and sing.” 

Tired Arms

It is the end of the day. I am writing this blog in advance. My arms are tired. My shoulders are tired. My hands are tired. It happens a lot to me these days; my upper body gets tired after a long day of wheeling about.

I had a conversation with another wheelchair denizen the other day. He is a complete paraplegic; he has no ability to move anything below his waist. He is 100% in a wheelchair. I was asking him how he managed. I wanted to know if he could give me some insight into where I was headed. His comment was that "it's like being on your feet all day". Only you use your hands.

When I was in the ALS clinic recently I asked the doctor about why my arms were so tired. He said I showed normal strength in my arms and hands. So I asked him about why my hands "went to sleep" so easily and why they got tingly so often. His comment? "Carpal tunnel syndrome".

In other words being in a wheelchair causes repetitive stress injury. Pushing yourself around all day causes your arms to hurt and your hands to hurt. It causes nerves to wear and tire. It's something you don't find out until you spend all day pushing yourself around in a wheelchair. It's another side affect of ALS, another ancillary benefit.

It's really frustrating. Even with this exercise I don't seem to be gaining any strength in my arms. They are not getting bigger, just tireder. I hate this nonsense. It's just hard. I am guessing that this is how its gonna go, how my disease will progress. Lots of work, limited reward.

That's one of the reasons I am leaving my job. It tires me out too much. I expect to sleep more and wheel around less. It may seem boring to you, but I am looking forward to a day when I can sleep until I want to, get up when I want to, have no responsibilities or plans, and go to bed when I am tired.

Of course, after about a week I will be bored, back looking for something to do, a reason to get out of bed.

Dreaming

There is a song by Simon and Garfunkel that starts with the line "Last night I had the strangest dream". The song goes on to present a dream of a world where "all agreed to put an end to war". It's an impossible dream, as most dreams are.

Last night I had the strangest dream. In the dream I was back at my old home with my ex-wife. My granddaughter had taken a red felt pen and drawn lines all over the coffee table and my laptop computer. I chastised her, then my ex-wife chastised me for chastising the baby, then we got into a fight. It sounds all too familiar except this time she ran away crying. She never did that in real life.

Scene two of the dream was equally odd. We were riding on a motor scooter going to see my brother, the one who lives in Louisiana. Oddly enough somehow Louisiana became Lansdowne Park and instead of being in Richmond where it belonged it was in the farthest upward reaches of North Vancouver. We crossed a giant bridge over a giant valley on a long, empty highway upwards.

We drove up this roadway to a golf course at which point we got off the motor scooter and began to look at the Map application on my cell phone. We were lost. People gathered around to help look and then suddenly they were all gone. At that point we went to get on the scooter to go to my brother's place when I decided I was tired and wanted to go home, only it was an hour and a half away. That part of the geographical displacement of the dream still worked, sort of!

It was a vivid dream, an unusual dream. It went on a bit more but with nothing that seemed odd. Then again, nothing in a dream seems odd when you are dreaming it. People often try to interpret their dreams, to gain insightful meaning from them. I try not to do that. I try to enjoy the story rather than search for the meaning. After all, it's just a dream.

But in my dream, I could still walk. In my dream, me legs worked. In my dream, I did not have ALS.

Life Lessons

I've learned a few things in life, some useful and some not so, some practical, some not so. I will not leave behind much of a legacy. It will take all my financial resources to survive the coming years, the remainder of my lifetime. So perhaps the only true legacy I leave is the thoughts and ideas that tumble out in this writing. There are, perhaps, too many for one blog entry, so here are a few. I leave these mostly to my children. If they have not learned these life lessons yet, I hope they do, and I hope they can put them into action in their own lives.

Life isn't fair, but it's still good. My particular situation is perhaps the best example of this. ALS is a terribly unfair disease; I am angry about the unfairness. There is no hope of a cure and it marches relentlessly to life's inevitable conclusion. That doesn't mean my life is bad. In fact, other than this small medical issue, my life is pretty good. I have a great community of friends, terrific family, an interesting and compelling career, and and active lifestyle. I don't have much money yet I seem to have all I need. All in all, my life is pretty good. I just have to remember that when I am angry, depressed or tired.

When in doubt, just take the next small step. This is a truism for me both physically and psychologically. It seems impossible for me to stop; I just keep on keeping on. When things are so big that I cannot go on, I break them down into smaller bits and then I do the first bit first. After that, I do the next. Eventually I end up somewhere; sometimes it isn't where I thought I was going, other times it is exactly where I want to end up. It all starts with the next little thing to be done. So I figure out what it is, and I do it.

Life is too short to wait for tomorrow; enjoy it today. I have really learned about this lately. The stark reality of my situation strikes home on a daily basis. Yet I always seem to find time to have some fun. I love a good party, a room full of friends, good food and great humour. This is how I enjoy life; I thrive in a crowd. Not everyone does; each of us needs to do the things that bring us joy. This is what it means to enjoy life. My greatest pain arises when I lose that humour, that ability to see the joy in things. My life is not the only one that is too short. I'm just focused on mine right now.

Don't compare your life to others. I really struggle with this some days, especially lately. I need to remember that none of us can truly comprehend the life of another person. Each of us experiences life differently. We have differing joys, differing pain, differing priorities, differing perceptions. My life is made no easier by comparing with someone's harder life, nor is it made harder when compared with an easier life. It is what it is, no more, no less. Any comparison is ultimately pointless. So why bother?

Get rid of anything that isn't useful. Clutter weighs you down emotionally and physically. I believe that less is better, in almost everything except love. But then again, love is not clutter. Stuff, junk, things that distract you from the important things in your life; this is clutter. Things will not make your life better. Mostly they just get in the way. Travel light. Live a life unburdened by the unnecessary.

People and emotions clutter your life just as much as things. Some people just make life more confusing. Their own issues, their emotional needs, demands, and challenges create an emotional clutter that crowds out the good things in life. You need to clear out the emotional closets of your life just as much as the physical ones. Just as you would get rid of physical clutter that diminishes your life, be sure you get rid of the emotional clutter. Live a simpler, kinder, gentler life. If your emotional life feels crowded, get rid of the clutter.

ALS Is An Expensive Disease

The "average" ALS patient in Canada incurs costs of somewhere between $100,000 and $150,000 over the course of their disease in order to sustain life. I say "incur" because groups like ALS Societies and medical insurance cover many of these costs. I don't have Long Term Disability or Extended Medical Insurance; I am very grateful for the ALS Society of Alberta (http://www.alsab.ca/). Without them my costs already would have been staggering and I am only in the earlier part of this journey. Let me walk you through a few of these costs.

Cane = $40. This is how it all started. I was having trouble walking, so I got myself a cane. Canes are not all that expensive. Everyone can buy one. This is the nasty way this disease works; it starts cheap and small. Then it ups the ante.

Bathtub Bench = $80. You can get an inexpensive tub seat for about $40. It would be useful for occasional use, such as when I come to visit you. My brother Adam did that and I am grateful. For a seat that can take the stress of daily use, you are looking at around $60 and up. If you want a transfer seat so you can get from a wheelchair to the tub, that costs $100 or more. Thankfully the ALS Society of Alberta provided me with a seat with transfer bench. Still, I bought my own seat to use when I am on road trips. It's smaller, but still costs a fair bit.

Walker = $600. That's right, a decent walker can cost upwards of $600. I am a big guy, a tall guy. A small frame lightweight walker wouldn't last a week for me. So I need a heavy framed walker that can take my weight and survive the pounding. Mine was supplied by the ALS Society of Alberta.

Wheelchair = $5,000. This is where it starts to step up. My basic loaner wheelchair only costs around $3,000; it's an entry level model. The one I want will cost $5,000. The ALS Society has this basic chair and has given it to me for the duration; they will get it back when I die. With my own chair, I would like to see it donated to the ALS Society of Alberta so the next person who gets this pernicious disease will have a good chair.

Truck Modifications = $8,800. And I went low budget! Instead of the fully extendable seat I went with the basic platform. Instead of the in-bed wheelchair lifter, I went with a simple back seat wheelchair crane. I got a basic hand powered control set. Just so you know, a wheelchair accessible mini-van costs around $65,000; you can usually get a well-used one for somewhere around $30,000. The high-end lifter seat costs about $9.500 and an in-bed wheelchair crane and canopy lifter system will run you as high as $25,000.

Power Wheelchair = $24,000. Didn't see that one coming, did you? Neither did I. These power wheelchairs are heavy, battery powered monstrosities that cost an incredible amount of money to build and maintain. They are like a car and just about as expensive; they need regular servicing and maintenance. It all costs money, in my case provided by the ALS Society of Alberta.

So far I have spent somewhere in the realm of $15,000 to keep going and I am just starting. The ALS Society of Alberta has provided twice that in hardware. I haven't yet looked at the cost of a hospital bed, slings, lift systems, breathing devices, feeding tubes and special food - all of that awaits me, if I get that far.

I can easily see where that $100,000 to $150,000 goes.

Ask Me. I Dare You!

I live a public life, an open life. I am not a keeper of secrets, a hoarder of "personal" stuff. For me the lines between my public self and my private self are non-distinct, blurry. I have a few areas where I am careful when I blog, but not many. Where I am careful it is out of consideration for others, not myself.

This seems unique. Most people are surprised about how open I am when I write. That openness permeates my life. My life is so simple and uncomplicated that there is nothing to hide. I have nothing that shames me and I see most of my errors as simple, human foibles. There are only a few truly private things, those things we do alone. Yet even those things are not so unique that they must be hidden, undiscussed. Why hide those things that everyone must have in their life? Why secret away those "personal" shames that we all have?

When I was growing up there were constant secrets. Grownups talked about things in hushed tones so we didn't hear. Adults snuck around, avoiding capture, so they could do their secret deeds whatever they were. We were sent from the room as conversations became "not for children". I don't want that. If adults behave in ways that children cannot see or hear, then they need to change their behaviour and conversation.

I want to live my life in a way that the light can shine into all corners. I want to live my life so that my mistakes don't horrify, and when I make them the shame of error is small. If it isn't small, then I want others to know that I am human and I make mistakes, and that some of them are bad. My good judgement and my poor judgement should be visible, open to question. If I cannot answer, then I have something to learn.

Certainly there are things I don't like to talk about. Some of the more graphic details around my health challenges are perhaps more than some of you would like to read. I don't need to go into detail with respect to my biological functions and ablutions each morning; we all know what that looks like. The only difference for me is the difficulty with which I address things like getting onto and off of the toilet, the challenge of cleaning my rear end while seated on a shower seat unable to rise, or other choice elements we can leave undescribed.

Being open is easy for me. I have nothing to hide. There are no secrets in my life. If you want to know, simply ask. In some cases I will tell you before you even ask. Someone with secrets has something to hide. Secrets are about shame and power. I am powerless and I am unashamed. Where I have power or am ashamed, I make no secret of it.

Go ahead, ask me!

Truck Mods

It's snowing outside, fast thin flakes flying by the window blanketing the sky like a fog. My view is obscured, blocked by a blanket of white, obliterating all hope of seeing the sun or the sky or the park in the distance. The tree outside my window has a growing sugar dusted icing, standing still and brave against the weather, solid and stolid, waiting patiently for this last blast of winter to wind itself out.

I would like to suggest that I am trapped by this weather. I am not. I can get in my truck and go anywhere I want. The roads may be bad but they are certainly not impassable. My truck now has hand controls, a seat lift and a wheelchair crane. It's all very high tech, yet very low tech at the same time.

The hand control is a very simple mechanism. You push down for gas and you push forward for brakes. The bars and rods and linkages all hook up to either the gas pedal or the brake pedal. It's a direct mechanical connection, responsive and easy to use. Even Ricky likes to drive with the hand controls. He says they're fun to use. I expect I will be driving for some time yet. This is a good thing.

The seat lift is impressive. It is basically a flat seat on a lifting post. There is a side bar on the seat to keep me safe as I make the transfer. That bar lifts out of the way so I can get on and off the seat easily. The gears and pulleys and cables all live inside the post. The motor is at the base. The seat itself does not go lower than the door frame. At some point this will become problematic as I will be unable to transfer myself up the few inches from the wheelchair to the seat itself. I will have to figure out how to resolve that when that time arrives.

The only real problem is the wheelchair crane. The way it lifts and swings in means it doesn't completely clear the seat base for the back seats. I have to help it a bit. Ricky and I are discussing removal of that seat frame or some other modification to improve the in/out transfer of the wheelchair. I have managed to do something to disable the outward swing pressure already so I have to take it back to the shop to figure out what I did wrong.

The whole shooting match is controlled by push buttons on a control wired into the master control unit that I keep in the front seat with me. So I roll up to the truck, flip down the seat, lift myself on, hook up the chair to the crane and lift in the chair, then use the controls to raise myself to seat level where I can easily transfer into the truck.

Then I grab them hand controls and away I go!

Not Much Of A Future

One of the biggest challenges for me these days is living a normal life. That includes a normal sex life. I am single. If I didn't have ALS I would be out meeting women and starting relationships and having fun. I think you know what I mean when I say "fun". Even being in a wheelchair is a handicap I can overcome; being handicapped is not necessarily a handicap in these matters.

On the other hand, having a terminal illness is definitely a problem. Most, if not all, women are looking for something beyond a short term relationship. Regardless of who they are or what their position in life, what pretty much every one of them wants is a man who can come in, sweep them off their feet, and carry them off on a white horse into the sunset. Okay, maybe not that much, but they are looking for something with some duration, a relationship with some legs.

I don't blame them for that. Isn't that what everyone wants? Most people are hard-wired to want to love and be loved. Most of us would like someone to spend our years with. In my case, it's only months. No matter how interesting, dynamic, brave or exciting I am; no matter what travel and adventures I can do, all that I can offer is what I can offer. It's a pretty poor hand in the poker game of life.

Some have said "there is someone out there for everyone". Bullshit. There isn't, or if there is she is somewhere off in Asia Minor herding goats, willing to accept almost anything to get into a country where she has a hope at a real life.

Let me share an experience with you. I met a woman recently. She is in a wheelchair too. She has MS and faces multiple challenges in her life. She lives in a care home. She is a writer and author. She has a son she depends on for help. She is divorced. She is interested in men and having a relationship. She is near my age. We started talking about care homes and facilities, something I will have to deal with soon. Over a few weeks the conversations expanded to include life, children, personal challenges and even sex.

So I asked her for a date. Her response? She said "I have thought of you that way but one things has prevented me from pursuing this. I don't want to get attached to a man who has been given not much of a future."

It sucks.

Aspirations

Katie strikes again! One of her weekly prompts was to write about my greatest aspirations, to write about what I most wanted to have in life, or to be in life. When I was a young man I most wanted money. I wanted to be rich enough that I would never have to listen to anyone else telling me what to do. Then I got married and had children. As I adjusted into these new roles, I slowly realized the most important thing in my life was to be a good father and a good husband, to be the family man, the provider, the source of all good things for my children and my wife.

Things didn't quite work out the way I expected. I don't want to say a lot about being a good husband; that just won't work out well. As to being a good father? I have learned a bit along the way but I still struggle at it.

There are lessons I wish I had done a better job at with my children. I wish I could have done better at showing them how to be kind, how to be considerate, how to be generous. I'm not saying they aren't those things. In fact I sometimes wonder where on earth they learned it so well. What I am saying is I wish I had done a better job at modeling these traits. The great irony is that now that I am learning so much about these things, I won't have long to be these things. I aspire to show these qualities in my life.

I wish I had done a better job at managing my anger. Anger in me has always been just below the surface. I have always been quick to anger. It has been a major stumbling block in my life, one that I have only recently begun to get a handle on. It has taken me many years to get to the point where anger is not my first response, and when I am really focused, it is not even my second response. I aspire to reach a calmer place in all things.

I wish I could have been more successful in keeping my marriage together, to have been the kind of man that my wife, or any wife, would have said "I am glad he is mine". I know it takes two for a marriage to work and I feel I did the best I could. I wasn't enough, and for that I am sad. I would have liked my kids to have seen what a good marriage looked like, the giving, the willingness to put someone else first, the desire to share a life, the understanding that a marriage has to work for both people or it doesn't work at all. I aspire to be a better husband, and a better man.