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.