Wednesday, 31 July 2013

Points On A Graph

People talk to me; they say all kinds of things to me. Most of these things are the ordinary exchange of pleasantries and typical conversations of daily life. Sometimes, however, a friend or family member will say something powerful, something that strikes a chord or settles heavily on my mind. The risk for these people is that their wisdom will show up here in my blog. For that I do not apologize; wise words are meant to be shared.

This happened today. One of the members of one of the many online ALS groups to which I belong made a comment, something that just slammed into me and stuck. She was talking about the frustration she felt when speaking with doctors about ALS, the distress of knowing there was nothing she could do; she is not a PALS, she is a friend of a PALS. She said "With ALS, it's like the world is saying, yep it's ALS... (he) has repeatedly said the doctors are saying your (sic) just points on a graph now." I can truly relate to that frustration.

It is not just the patients who are frustrated by this. One of my many neurologists expressed a similar frustration last month when I was at the ALS clinic. He said "Twenty years and there have been no advancements; twenty years and nothing." This disease has to be tremendously frustrating for doctors who are used to giving solutions, providing hope and offering treatments. Trust me, it is just as frustrating for me.

There are two places to go with this frustration. One is to take it to anger; the other is to go to acceptance. I suspect all People with ALS end up in both places at some time or other. Regardless of religion, faith, or mindset, this disease works so insidiously as to leave every affected person stunned, without a handle to hang on to; you just have to live with it, nothing else. Whether patient, family, friend or co-worker, no matter who you are this disease will touch you and leave you feeling helpless.

Yesterday a Person with ALS in one of my online groups talked about a depression and suicide. When faced with a situation where your doctor simply says go home and do nothing, where the only thing they can do is collect points on a graph, virtually every one of us will become depressed. Add to that the depression that is a side effect of some of the medications and you have a perfect scenario taking action to end it all.

There is but one thing to do in the face of all this; wake up, breath, eat, and keep going. It is almost impossible some days; most days it is merely difficult. On those rare, sweet days when the light shines and the clouds lift, on those exceptional days when life seems possible no matter how short, then you get to live. On these days you are more than points of a graph.

Tuesday, 30 July 2013


I am thinking about marriage this morning. One of my online PALS is celebrating his 19th wedding anniversary today. To him I say, congratulations and may your future be blessed. That may seen strange given the future of ALS patients. I have noticed something with this cohort. ALS patients in good relationships do better, have more energy and more enthusiasm for life, and generally seem happier. No surprise there in that almost all research shows that people in happy marriages are generally happier in life.

Marriage has been around a long time. Anthropologists and archaeologists have found evidence for the existence of pair bonding all the way back to pre-historic times. Marriages are documented in ancient Egypt and the concept of marriage is almost universal within human beings. The nature of marriage changes over time but the idea of two people in a committed relationship has been with us a long time.

From ancient times to medieval times, particularly in the western world, formal marriage, contractual marriage, has only existed within the ruling class. It was used as a way to manage the transition of wealth across generations and a way to build and consolidate power. For us little people, the normal people, marriage did exist but in many cases without any formal recognition. Men and women took up together, engaged in some sort of simple ceremony such as jumping across a broom or such thing, and they declared themselves to be married.

It wasn't until 1563 that the church got involved in the marriage business. The Council of Trent, sensing sin in every corner, decreed that marriages must be performed by a priest, with the appropriate payments to the church, and in the presence of at least two witnesses. It took the Catholic Church in western society to turn marriage from a relationship between two people to a contract before God and a revenue generation tool for Rome. Love, faith, and commitment had nothing to do with it.

In truth, marriage means nothing; it's just a contract. Like all contracts, it can be broken. The sanctity of marriage is simply a church bound control mechanism to ensure conformance, compliance and control. The reality is that marriage isn't about the contract, nor should it be about God. Marriage is about two people in a relationship. All that other mumbo-jumbo simply complicates things.

This is not to say that I don't believe in marriage. I do. I believe it so completely that I stayed in a bad marriage far too long just to comply with that belief set. What I now realize is that any marriage that survives is first and foremost about the relationship; ours was not a good one. Without a good relationship between the parties in the marriage, be it two or three or more, same sex or other, there is no marriage; it fails.

Marriage works when relationships work. No matter what form, contract, or display we put over it, the committed relationship of marriage is important. Whether it is traditional, church sanctified, or simply a couple of people jumping over a broom, marriage is here to stay and so it should be. We just have to keep the relationship part as more important than the contract part. If a marriage is bad, end it sooner rather than later. When a marriage is good, fight for it, treasure it, and keep it as secure is your most precious treasure. After all, that's what it is.

Monday, 29 July 2013

Disappearing Relationships

It is a slow morning this morning. I sit in my chair, stare out my window, watch the flat grey under-surface of a clouded sky, slit here and there into strips of white and even blue now and again. It is that kind of easy start to a day that I need now and again. I have little planned for the day, only a lunch date with a friend.

It is an interesting phenomenon, this friend thing. This particular person is someone I used to work with. There are a couple of past-work people who have made it a point to keep in touch with me. It is one of the most interesting things for me, that these two people, two people with whom I had great struggles in my work like, turn out to be two of the most reliable, strong and helpful people as I work through the struggles of my daily life.

I am not alone in this experience. Just a few days ago another one of my PALS (Persons with ALS) commented on how surprising it was to her that people she had expected to be with her through her illness had completely failed her yet people whom she barely knew, or expected little of, had reached out and become solid and powerful helpers and supporters. I see this theme a lot in my online ASL groups.

Another of the PALS I know commented the other day on her marriage. It was failing when she got her diagnosis and failed completely thereafter. This is not an uncommon story. Relationships that are thin and weak disappear completely under the load of this awful disease. Troubled marriages crumble. Even seemingly strong marriages buckle under the weight of an ALS diagnosis. It takes tremendous courage and commitment to stay when the work and outcomes if this illness are so all encumbering.

Of course you expect family to stick with you. Yet even in this there are tremendous challenges. Siblings and children have their own lives to live. Young children depend on you; it cannot be the other way around. Teenagers and young adults are "doing their own thing". In most cases parents are either gone or aging, unable to help. Where they are, they do, tremendously. I know this to be true. Still, particularly with aging parents as mine, you cannot ask them to do what needs to be done; they simply cannot do it.

I envy those who have loving partners in their lives who give all to make the last days of a Person with ALS the kinds of days worth living. That is a very special person, a rare treasure. For the rest of us, in the end what you learn is that, in most cases, if it is to be done it is up to you to do it.

Sunday, 28 July 2013

Handle With Care

I am surprised these days at how easily my emotional balance is set off. Things that would just wash off me in the past suddenly become frightening. My internal resistance to fear is weakening, almost everything scares me. Every challenge seems higher, harder, more difficult. It's as if my emotional strength was weakening at the same time as my body.

It shouldn't be a surprise to me. My emotional reserves, like my physical reserves, are pretty much shot. The disease itself is well known for creating emotional instability. It's something called the pseudobulbar affect (PBA). It's also known as emotional lability, labile affect or emotional incontinence. Physiologically it is a neurologic disorder with involuntary crying or uncontrollable episodes of crying and/or laughing, or other emotional displays.

In other words, not only do I get the emotional stuff that goes with the loss of my abilities, my freedom, my life, but I also get some sort of physiological impact too! We all go through periods of emotional stress; it's just a part of life. Like everything else with this damnable disease, this normal part of living is ramped up to a new level with ALS, and not in a good way. Emotional stress, like any stress, just makes it worse.

It means I have to work a lot harder at managing my emotional responses to things and that leads to emotional exhaustion, and that leads to, well, all kinds of things. Interestingly enough, anger is not my biggest problem even though I get angry at times. My biggest problem is that the things which used to make me feel threatened loom even larger, look even bigger. It takes more emotional energy to sort them out, to respond to them in a way that makes sense.

I need some way of letting people know that in addition to dealing with every day issues and life challenges, I have this additional load to bear, a load that is invisible unless it becomes unstable. Just as my body needs special care these days, so do my emotions. I need a "Handle With Care" sign on my life. Then again, maybe we all need one.

Saturday, 27 July 2013


ALS is not a disease of location. It doesn't just happen here; it didn't just happen to me. There are people from all over the planet who struggle daily from the damage of this debilitating disease. As a member of a number of online ALS groups, sites such as PatientsLikeMe and Living With ALS, I see posts from every country and continent on the planet. This is a global disease with global impacts yet most of us hear so little about it.

We all know of the famous with ALS, people like Steven Hawking and Chairman Mao. What we don't know are the stories of the thousands of men and women young and old, living lives of struggle and challenge, defeating the darkness and despair that goes with this disease. What we don't hear are the stories of support, caring, giving and loving that make up these lives. They are there, waiting to be written and read.

You will hear about Steve Gleason, Catfish Hunter and, of course, Lou Gehrig. What you are less likely to hear is the story of a young man in Queensland, Australia named David. He was diagnosed as a teenager and recently passed away in his late twenties. He struggled with this disease for his whole adult life, short as it was. You won't hear his story because he is not famous. He, like many of us, was simply part of the ocean of humanity and this is how we die. It takes fame to shine light onto this disease and unfortunately this disease is sufficiently rare that few of the beautiful people are touched by it and even fewer are afflicted with it.

I see the stories of so many ordinary people struggling with this affliction, people who lead normal lives until normal is ripped away from them; a single Mom in BC, a teacher in New York, a geologist in Scotland, a child in Japan, David in Australia. The single, dominant theme I see in virtually all of these stories is the will to live and the forced acceptance of the damage of this pestilence. I hear the stories of their fight, their battle, their small victories in their larger personal war.

The stories of victory are not of cure, but of victory in daily living. It is a battle of honour, dignity and courage. It is not a battle to win for ultimately life claims us all. It is a battle to stay, to live as long as you can, to live fully, joyously, happily. It is a battle won, not with a climactic armageddon but with daily and sometimes hourly victories over this disease. You win this battle each day that you live, love, and laugh.

Friday, 26 July 2013

Forward Motion

I awoke again today thinking "Why bother?" Do you know how many days I wake up with this feeling, this thought, this sense of the pointlessness of all of this? A mere six months ago I was a dynamic man with a great job, a man with places to go and things to do. Now I am idle, purposeless, simply existing and taking up space until either my disease takes me or I take myself.

Before anyone gets afraid, I am not ready to go yet. This is not a suicide note, not by any stretch of any imagination anywhere. It is me noticing the changes in my life and how unfocused it has become. I have always needed something to focus on. When, in the past, I would finish a project it was not unusual for me to go into some depressive funk, easily attributable to the lack of something on which to focus.

The problem is that now there is no hope of another project, another focal point. There are those who would suggest that I go volunteer, that I do something for other people, that I gain satisfaction through giving of myself and my remaining days. That seems like a good idea on the face of it. My challenge is that I don't know what to give or who to give it to.

I don't have the energy or ability to do what I used to do, to do what I know how to do. It takes so much energy and work for me simply to go through my day. The "activities of daily living", that's the term the medical and professional community uses for what I do each day, absorb just enough of my energy to leave me with little more that the motivation to read or watch TV all day. The work of getting up, getting food, getting dressed, all these gettings leave me wanting, wanting for energy and enthusiasm.

Perhaps my focus should be on just getting through the day; I can do that easily enough. Perhaps my focus should be on finding something to focus on. One option would be to volunteer with the ALS Society, except then I will be surrounded not only by my own disease but by the frustration, pain and struggles of every other ALS patient in Alberta. Another option would be to find part time work, something to keep me focused and busy yet not so busy as to wear me out. There are options; I know this to be true.

First I need to focus on what to focus on. The rest should come together after that. My first step, as it always must be, is to put my left foot in front of my right, metaphorically since walking is something I no longer can do, and move forward somewhere, somehow. Maybe that is why I keep wanting to get away, go on a road trip or a boat trip. It is motion. I wonder what I will do when I can no longer get away? What motion then?

Thursday, 25 July 2013

ALS and Dating

As a single man with ALS, especially one in a wheelchair, it is almost impossible to get a date or start a relationship especially once a woman hears those three letters. I am tired of the rejection; I understand the rejection. Think about it. Who wants to start something with a man in decline, a man with such difficult challenges ahead of him? Who would be willing to enter a relationship where the rewards are all so short term and so limited? Most women my age are still in career mode while I am in retirement mode. Most women my age don't have the time, freedom or resources to do the kind of travel and go on the kinds of adventures I want to go on. It is just too much to ask of a woman.

It gets complicated when you take the wheelchair into consideration. This mechanical monster is scary; most women don't know what to do or how to deal with it. The wheelchair is as much a blockade as the man who inhabits it. Approaching a man in a wheelchair carries all kinds of risks, from the fear of making mistakes to questions about ability and physical limitations. Then add in the ALS part and it is an almost impassable barrier.

Most women start with simple self-interest. They don’t want to be a care nurse; it's a lot of extra work in their life that they don't need. They don’t want to enter into a relationship where they might have to help with personal care, mobility, showering or bathing. It is a huge responsibility, building a relationship with someone with limitations, especially with a short timeline. It is a burden and turn-off.

This kind of reaction is completely understandable. It is hard for them to see that I get along just fine without them and when the time comes I will have professional care in place. It is hard for them to see that I already take care of my personal hygiene and will be capable for some time to come. In other words, unlike "healthy" men, I come with a care plan already in place.

They must wonder about sex too. Let's face it, someone with no legs must be bad in bed, only able to lie there and not move the lower half of his body. As time progresses it will only get worse, right? Well there are some challenges for me physically but if you ask any of the women I know, they will assure you that everything that needs to work is fully functional. I may not be a young stud but I am as enthusiastic as anyone else when it comes to sex, perhaps moreso. Yet that is hard to see, and even harder to talk about, when you see someone online or in a public place.

In the end, I understand the real question. What will happen if I fall in love with this guy and he dies? It will hurt too much. For a woman in my age group, her time for recovery after I die is just too short. Starting anew when you are 60 is a hell of a lot tougher than you think. So why bother starting something when you know for sure that you will have to start all over again in a few years?

It's a tough thing to realize, that I am quite simply a bad relationship investment for most women. I understand completely why they aren't interested. They want a whole, functional man who will live into their golden years with them, care for them in their old age, love them forever. Unfortunately what most people don't realize is something I am far too acquainted with. Life happens and death happens. No matter who you choose, one of you will die before the other. Life is a crap shoot; you may meet Mr. Perfect and he could get hit by a truck or die from pancreatic cancer shortly thereafter.

The only difference between me and anyone else is that my timeline is visible. You cannot dream of wandering into the sunset with me by your side. My reality is there for all to see. Why would anyone want to date a certainty when they could date a dream?

Wednesday, 24 July 2013


I read a lot of history ranging from ancient Egypt through classical Europe, the Renaissance, the Napoleonic wars, right up to post-modern history of things such as the wars of the 20th century. I love history, the interplay and interweaving of events and actions, one triggering another, leading every onward into the woven tapestry that brings us to this day.

History is not a series of linear events; it is a mosaic of lives and deaths, war and peace, land and sea. It is tale upon tale of men and women and children, living, breathing, dying. No event, no action, no circumstance in the threads of time exists on its own. All are the result of actions on them. All result in actions flowing from them. That is the beauty of history. It is not a discreet event but a series of cross-linked actions, one shaping another down through the tunnel of time.

I wonder about myself in terms of history. My story is equally linked with the stories of so many others. My childhood was as impacted by the times as is my adulthood. I remember being a young boy, perhaps 10 years old, and having a local fireman ask me what I wanted to be when I grew up. I suspect he was disappointed when I said "astrophysicist". I suspect he was a bit befuddled when he asked me what that was. I remember telling him "someone who studies stuff that happens on other planets and stars." This was 1965; mankind had yet to put a man on the moon. That man in the firefighters suit was born in the depths of the Great Depression. His history had no notion of astrophysics.

My marriage and family life was part of that great historic sweep we call The Baby Boom. Just as I was marrying and rearing children, so were many of my cultural cohort. It was what we did, swept along in the time and tide of history and demographics. Demography is destiny and as such is the author of so much history. I, like billions of others, was born, married, raised children. And I will soon die.

What will history record of me? Little to nothing if time and tide reflect times and tides of the past. One hundred billion men and women have come and gone from this planet in the vast sweep of humanity's span. I am but a sand speck on a beach on a coast on a continent on a planet. The greatest of men and women from ages gone by are long forgotten. All that remains is today.

History, if the past is any indicator, will record little of me. Yet still I read.

Tuesday, 23 July 2013

The Gift

I am at home. I am sitting in my black chair, looking out my window, listening to the familiar sounds of traffic going by on 49th Street N.W., watching the birds hop in and about the fir tree that stands sentinel for me. While I doubt that anyone could accuse me of being a "homebody" or of fearing change, the constancy of home and the surety of familiar things is pleasing to feel and know.

The drive yesterday was largely uneventful, with the noted exception of a visit with my cousin Doug's wife, Anita. It was an absolutely wonderful visit with lunch at a local bakery. Anita is a woman of faith, a Christian woman, completely unlike the brand of Christian I have had to deal with of late. We talked a lot about how she saw my situation and what she felt about it. It speaks to her compassion and wisdom that we were able to discuss the hot topic of divorce without a moment of judgement coming from her.

It was interesting to be with her in many ways. We talked about faith and the damage my beliefs have suffered under lately. We talked about the difference between religion and faith, between blind belief and the value of seeking to question and understand. We share our thoughts on the danger of lingering anger and bitterness, how these painful siblings could damage your life long after a divorce. She is a woman of faith yet she is not "faithy", she is a woman who holds the words of Bible dear yet not a word of preaching came from her. She sought to understand, listened, and shared.

I came away from lunch feeling lighter and better than I have in a long time. The lightness got better and better as I got farther and farther away from the sadness that has enveloped my life in the last couple of weeks and months. The more distance I put behind me, the closer I got to my destination in front of me, the better I felt.

Anita gave me a gift, the kind of gift that requires no wrapping, needs no card, stands on no special day or event. Her gift, similar to the gift of those who are closest to me, was to share her life with me and to let me share my life with her. I am once again reminded of how lucky I am to have so many people in my life who care about me not because of who I am, but in spite of it.

Monday, 22 July 2013

Going Home

I am headed back to Calgary today. My shoulder is still in pain. I leave behind my Mom and Ray, three of my children, my two very best friends and other friends too. I leave behind my cousins and my Aunt Margaret, other family too. I leave behind my boat, the sea and my life upon it. I leave behind the beauty and wonder of coast and mountains. Yet I am surprised by my feelings.

I am surprised that I am looking forward to going home. Yes, home. Calgary has become home. I am not sure when it happened but I most certainly know how. I left a marriage where I felt completely unvalued and in arriving in Calgary was almost immediately accepted into a community where people saw me for who I was and what I was, and liked me anyway. I found a place where neither who I am nor what I am was judged nor ridiculed, where my decisions were accepted as mine to make, where my life's experience and wisdom was valued and respected.

Still I am surprised by my equanimity in leaving those I love and this place I love. It is not that I love it less nor will I ever get over missing those I love whom I leave behind. The pain of leaving is nowhere near what I expected. Perhaps I have turned a page in my life. It is possible you know, for me to grow and change even as I enter the last months of my life. It is possible that, in finding a home in Calgary, I am comfortable leaving my home in BC. Perhaps I really left this home a long time ago. Perhaps I left it emotionally long before I finally made the horrendously difficulty decision to leave my wife. Maybe that is why leaving today is not a moment of sadness but a moment of expectation.

This place has always been precious to me. I come alive at sea and feel truly a part of the ocean. I am a water person and there is no water so vast as the Pacific. BC is one of the most beautiful, if not the most beautiful, of places on earth. Summers are warm and sunny, but not hot nor humid. Fall is gentle and winter is mild. Spring starts early and but for the rain would be a gentle slide back into summer. There are lots of reasons for me to want to stay here.

Yet I am going, happily, willingly, back on the road to Calgary. One of my friends, one of my Calgary friends who lives once again in Vancouver, said it the best. She said "Sail if you can sail. If it fails, sell the boat and go back to Calgary. You are happier there." Despite all the odds against it, it would appear she is correct. I am happier at home; Calgary is home now.

Sunday, 21 July 2013

Happy Birthday To Me

Today is my birthday; I turn 58 today. It will be a nice day, spent with my Mom and Step-Father, my daughter, her husband and my granddaughter. We are headed for breakfast shortly and then I hope we will spend time just visiting chatting and enjoying each others company,. It will be a nice day. My hope is for a happy birthday.

Last November the doctors said I had 36 months to live. They said I should quit my job and do what I wanted to do while I still had the mobility, while I could still walk, breathe, eat, and enjoy myself. They knew what was coming. Then they sent me home and wished me luck. Certainly there was follow up at the ALS clinic. That follow-up was more evaluation and testing to see how quickly I would decline.

So far I have declined at exactly the expected rate. So far I have lost one point a month.  My score of 38 when diagnosed has declined to a score of 30 at the beginning of this month. Based on this rate of decline I will die sometime shortly after my sixtieth birthday. That is the way this disease works.

There is hope that my rate of decline will slow. My doctors, and I have many of them these days, suggest that my upper body is strong and that even though I am losing diaphragm strength and am starting to have trouble swallowing, that my upper body strength might keep me going longer than expected.

The question is more about quality of life, not duration. I could live a very long time if I were to be fed through a tube and ventilated through a respirator. I could live a long time, immobile, trapped in a wheelchair, talking through a machine, dependent on care, wearing diapers and plugged into a catheter. I could live a life where my mind was all that worked. The question is whether or not I want that life.

Today I am 58. Today I am going to spend time with family. Today I am mobile, at least partly mobile. Today I am alive. That is what I will celebrate today.

Saturday, 20 July 2013

Adventuresome Spirit

Today is boat emptying day. I, along with  some helpers, will be removing all my personal effects and non-essential gear from my sailboat in preparation for selling the boat over the next couple of weeks. It is another transition. In fact the transition has already occurred; this is just maintenance.

One of the great difficulties in losing my boat this particular year is the investment I made in it, getting it setup so I could go on board during this summer. I made modifications to the topping lift and boom arrangement. I bought a bosun's chair along with a block and tackle to lift me in and out. I thought this would be enough.

The problem was, and I was suspicious of it at the time, that I did these modifications in May to go sailing in July. The interval was too much. There was just enough incremental decline in my condition to make it too difficulty, too challenging to keep going. I know I could if I pushed my body. At some point it becomes pointless to do this. At some point pushing a declining body leads to disaster.

Right now I am suffering from the effects of pushing this broken body too far. My left shoulder continues to be in substantial pain from the injury on board. I am now no longer certain if I simply pulled it while hauling on a line, or if I broke or tore something when I fell while having my heart attack. Regardless, healing is slow, very slow and I am suffering. Being on board in this shape would be a true misery.

ALS is bringing me more changes. Yet it is not, and cannot, change who I am. I will be me until I am no longer me. I may not be on my sailboat. I may turn to a different form of adventure. I can still drive, for now. It is possible I will be driving for another year or maybe even longer. My swallowing mis-coordination has just started and the loss of lung capacity is going slowly. My diaphragm is declining yet I can still draw a solid breath and throw a hearty cough or laugh.

One day these losses will mean no more road trips. It will happen slowly, almost imperceptibly. It will slide up on me, like the changes that took sailing from a joy to a job. Yet even then I will still be me. I will still be an adventurer. It's just one kind of adventure that I am losing today, not my adventuresome spirit. I am going to live until I die; I plan on living before I die.

Friday, 19 July 2013

Wheelchair Parking

It's getting more and more difficult to find a parking spot. You would think that having a wheelchair would make it easier what with all those wheelchair parking spots at the mall and such. You would be wrong with that thinking. It seems there are more and more of those wheelchair tags to go with those spots. So more often than not getting a wheelchair parking spot in any parking lot is becoming a real challenge.

Take my recent stop at Granville Island as an example. Granville Island is a popular spot but there always seems to be a place to park, at least if you don't have to get a wheelchair in and out of a truck. I drove on to Granville Island filled with the hopes that go with having a handicapped tag. I drove to the west end of the island, near Bridges, into the parking lot next to the market. I made a circuit of the lot only to find every handicapped spot was filled.

It's not like there weren't parking spots; there were several empty spots. They were all standard slots, so skinny that any hope of getting a wheelchair out of a truck was blown in the wind like the gull feathers drifting by my window. These parking spots were made for slender cars with even slenderer people. My truck is not slender and my wheelchair lift requires a complete opening of the rear door on my truck. There were lots of these spots; just no handicapped spots.

I circled the parking lot for a bit and then parked in a regular spot. There I waited, and waited, scanning the few handicapped spots, hoping for eventual availability. After about a 15 minute wait, one of these spots opened up and in I went. Fortunately these spots are wide enough for me to get in and out, and the time for these spots is 3 hours instead of the usual one hour limit. This is intended, I suspect, to allow for the reality of wheelchair bound patrons, where almost everything takes longer and is more complex. The problem, of course, is that the longer timeline means people park in them longer, in many cases out of necessity but in others simply out of availability and convenience.

There seem to be a lot more of those blue tags out there these days, too. I don't doubt that they are needed. A combination of an aging population and increased rates of obesity mean there are plenty of people with mobility challenges. The person leaving the spot into which I rapidly flew walked up with a cane, struggling to carry his packages and coffee. He clearly was handicapped. On the other hand I regularly see folks with no handicap whatsoever get out of their cars with their blue tag hung on the mirror, parked in one of those few spots. I wonder how they got their tag?

Do we need more handicapped parking spots? I suspect the able bodied population might say "no". As for me, I have more than once been put in the position of going home for lack of parking. It's just another reality of my life.

Thursday, 18 July 2013

Celebrate Now

Why do we remember people after they are dead? I don't mean we shouldn't; we should with all our minds and hearts recall and cherish those who have left us. What I mean is why don't we make more of a deal , more of a celebration, about those we love when they are alive? Why do we wait for this until after they are dead?

It is almost as if we are unable to celebrate and cherish those we love while they are still with us in the same way we do when they are gone. While they are alive we face their humanity, full blown. While their corporeal form is here amongst us, we see not just those precious parts of them but those human, failed parts of them too. We see all of them, their full portrait, and in that painting we seem unable to ignore the flaws.

Once someone dies, their ungainly humanity dies with them. They move to a plane where their existences is memory, filterable and revisable. We recall what we loved and cherished without having to deal with the ugliness of daily life. Our memories take over, replacing reality with a revisionist view, stripped of the grit and grime of daily existence. Memories are a wonderful thing. We get to choose, to remember selectively, to remember what we want to recall and forget that which burdens the tidiness of recollection.

When I die, when I am gone into memory, my life will be revised. Certainly people will recall all of what I was, including those parts that are somewhat less than stellar. Certainly there will be those whose memories are only of those poorer parts. Others will remember those plus parts, the good that was in me, that is in me now. Only a few, a very few, will recall all of me, both good and bad, with humour, love and sweetness.

I don't want to be celebrated after I am dead; I want to be celebrated while I am still alive. I want my children to cherish me now, as a whole man, a man with black, white and grey, a multi-coloured character with nuances, moods and mistakes. I want my friends to treasure me while I am alive, breathing, swearing, lusting, loving, living. I want my family to think of me now, not later, for what I am and what I have been and what I could have been.Celebrate me while I live; don't sanctify me after I am dead.

Wednesday, 17 July 2013


I awoke again to today wishing I hadn't. I awoke again today in pain, suffering from the damage from life and my efforts to live it. I awoke again today filled with the despair and loss driven by what my failed life has become. Yet I awoke again today.

It is a day for decisions. I have decided to sell my boat. I can no longer afford to live that life, either financially or physically. I can no longer support my beautiful hobby. That part of my life is at an end. Those places of wonder I will never visit again are lost to me. The open sea, the writhing of the waves and wind, the burst of mist from the whale, the roll and rise of the dolphin, these are gone from my life.

I have decided to go to the East Coast on a road trip. I would like to leave on Monday, after spending my birthday on Sunday with my Mom and Ray. They are the cornerstones of my life these days and I want to celebrate what little life I have with them. After that I think I need to get away for a while.

I have decided other things too, things I will not share here. I have decided.

Tuesday, 16 July 2013

Six Months

I went to court yesterday with an application in respect of my divorce. You might wonder what this has to do with ALS; I will get there, trust me. First, some background. I am in the midst of a divorce. It is taking a long time to complete. My ex-wife believes sincerely that her contribution to our marriage and assets is worth more than my contribution. She sincerely believes that her contribution to raising our children and supporting our family is of more value than mine. She sincerely believes that she is fighting to protect her home, the home she loves and wants to live in for the rest of her life.

She will say anything, use any weapon to win this battle. She has engaged our children in her court battle, drawn people who once claimed to be my friends into the battle. She has had her lawyer deny my ALS in open court and deny that I had a heart attack in open court. She's put it in writing too. She has over-represented her contribution and under-represented mine. Her approach is killing me, accelerating my decline and causing me untold pain. It is working.

In taking this approach my ex-wife has made a series of financial settlement offers representing substantially less than half our assets. In fact these offers are somewhere in the 25 - 30% of assets range. Actually the best one so far has not quite made the 30% mark. So I made application to the courts to have our family home sold. My hope was that, once an order was in place, my ex-wife would forced into a place where she was compelled to make a more reasonable financial offer.

My application was denied; she will not be forced to sell the house at this time nor will any better offer be forthcoming in the near future. The judge ruled that we must go to full divorce court for a "global" settlement. My ex-wife feels that she won and that she will win again in divorce court. In fact she is celebrating in that family home tonight, the one where she lives rent free, healthy and fully able to live a complete life while I, with ALS and a short time to live,  must rent a home and pay for care. Unfortunately it will take another six months to get this to court. That is another six month delay, a delay that has a substantially greater impact on me than it does on her.

It is important to understand the impact of a six month delay. The next six months are likely to be the last six months of my life where travel is a viable reality. After that my decline will be precipitous enough that travel of any sort will become increasingly difficult and unlikely. I wanted to get this done so I could use that money to enjoy the good part of my life, not the bad part that will come after that. A late settlement for me is as bad as no settlement at all. In short she is using my ALS as a way to defeat me financially.

It is likely that I will get a reasonable portion of our family assets in the end; unfortunately I will be in sufficiently poor shape as to make it irrelevant. It is possible that the house will have to be sold, but it will be a Pyrrhic victory, for both of us. She gains a delay in the inevitable yet when the inevitable comes I will be sufficiently disabled as to no longer enjoy my gains.

The next six months will be my last good six months. I regret that I will live them with substantial limitations, both financial and physical.

Monday, 15 July 2013

Why Bother?

I ask myself on a regular basis, "Why bother?" Why bother get up in the morning, with the aches and pains and difficulties? Why bother getting dressed, with the challenge of getting on underpants, pants, socks and such? Why bother eating breakfast or lunch, with my weird appetite issues, never knowing for sure if I will finish a meal once I start it? Why bother doing anything at all, given the absolute lack of a future, of any sort of possibility beyond a wheelchair and certain death?

Let's face it, my life is done. My bolt is shot. My bucket is empty. I know everyone says I have so much to live for; my family, my children, my grandchildren, my friends. Yet even with so much out there I feel so empty in here. So much has been taken away from me. I have lost so much that losing hope is a very short distance from here. Hopelessness has become my constant companion.

If this is God's plan for my life, well, it's a pretty stupid plan. The woman I was once married to, the one who is destroying my dying days and attempting to condemn me to poverty claims to be Christian. Her family, the ones who rejected me when we married and continued that rejection both behind my back and to my face claim to love this God, this Christ of theirs. The only god they truly love is money; the only thing they want to save is their wallets. They want me to die poor so they can live rich. This is the God they want me to claim?

Of course I am depressed. Most days I am right on the edge of suicide, wishing I had not woken at the start of the day. These days I pee into a jug because I cannot get into the bathroom at my Mother's apartment or into the head on the boat, assuming I can even get there. I can no longer get myself on to my boat; I am dependent on others to hoist me on board. This part of my life is at an end.

As to having female companionship in my life, well that is pretty much an impossibility. After all, who wants a relationship with a terminally ill man in a wheelchair with nothing to offer but a few short years followed by an ignominious death. It is another part of my life which is at an end. So much of my life has been lost; so much of it has already come to an end. The rest of it is just more endings, and not good ones. Where is the good God in this?

I hate this. I hate living like this. I hate the pain. I hate the debilitation. I hate the decline. I hate the constant feelings of loneliness and loss. I hate the sense of inevitable decline and death. I am angry that his has happened to me and that there is nothing I can do about it. I am angry that my life is ending this way.

Why bother?

Sunday, 14 July 2013

When Life Isn't Good

I have a friend who likes to say that "life isn't fair but it's good." What do you do when life stops being good? That is something I have to face, or will have to face soon. Right now I am suffering with the pain from my shoulder and knees along with the frustrations of my wheelchair and loss of mobility. It's very hard amidst this pain and struggle to find anything good.

The other day I noted that in most cases a good night's sleep was the most helpful way of dealing with the difficulties of my life. I also noted that when I awoke without feeling better, something was seriously wrong. Well, something is seriously wrong. This is the third day in a row where I have awoken in physical pain while struggling with depression and distress.

My brother says "suffering is part of life; misery is optional." Some days misery is not optional. Some days are just plain miserable. The last few days have been like that for me. Of course once the pain killers cut in the day is slightly less miserable, but it is a misery to awaken in this state with the pain killers from the night before having worn off and the discomfort of an awkward sleeplessness laying over me like a blanket.

In the end it hardly seems worth all the effort. After all, once this bout of pain and difficulty passes another will arise to take its place. This will go on until I can take it no more. Then I will die. You see, hopelessness is just another form of pain. Depression is just another form of pain. It's all so pointless, so lonely.

I am tired. I need rest. Life isn't good right now.

Saturday, 13 July 2013

Pain Again

I am in incredible pain this morning. My shoulder hurts so bad the pain is surging up into my jaw and neck on my left hand side of my body. My fingers are slow to respond and my hands are clumsy. I have taken a couple of Advil but I am tempted to get the Percoset out of my truck. The only problem is that I would have to go down to my truck to get them and the pain makes me want to not go. I am hoping the Advil takes enough of the pain away so that I can function.

At least I can type. Even as I type I can feel the Advil beginning to work. It's odd. For most of my life, sleep has been my ally in self-repair. If I hurt something I would just sleep it off. Overnight my body would heal itself, repairing the damage of a rough lead life. Now things seem to get worse overnight. Injuries don't heal during sleep, but creep and grow, becoming ever more painful and difficult.

My knees have taken to hurting at night too. When I go to bend my legs at night, something I have to wake up to do since my legs will not move themselves, my knees hurt so much sometimes that I cry out in pain. I don't know why they hurt; they are not injured. It cannot be from last Christmas when I fell on my left knee, since my right hurts just as much. I can only assume it is from sitting all day, from having my knees in one position for so many hours. Yet I cannot understand why they hurt in the middle of the night. Oddly enough, once I move them, the pain goes away. It's just that initial move that is so painful.

My whole muscle healing system does not seem to work. It takes days, weeks and even months for the simplest muscle pull or tear to repair itself. These tugs and tears that we all get each day just ache and hurt, taking the longest possible time to get better. I know my healing system is still in place for most other things, stuff like the flu or cuts and bruises. It is my muscles, joints and ligaments that seem to be failing me most of all.

I am not sure if this is ALS or aging; perhaps it's some of both. I just know that my shoulder hurts like hell and has for days now. Using a wheelchair to get around sure doesn't help. I just want the pain to stop. I just want my body to get better.

Friday, 12 July 2013

A Preventable Anger

I have been angry the last few days, angry about some things going on in my life that have nothing to do with ALS, well almost nothing to do with it. As many of you know I am in the midst of a very nasty divorce, one where my ex-wife has denied my disease until forced to acknowledge it by her children and medical documentation, where my ex-wife has continued to hound and demand spousal support right up to and including enforcement orders from the government where my passport has been cancelled and my disability pension is subject to garnishment. All of this in spite of my not working and being unable to work.

Last Wednesday, the day I was required to surrender my passport, was particularly difficult. The loss of a passport may  not seem like much. After all, once we get to court next week this should be all swept away and I can simply re-apply for a passport. To see it more clearly you have to do a bit of math.

According to my current prognosis, I may live as long as another three or four years. This is longer than my original prognosis of 36 months. That original prognosis is the one the doctors still attest to; they know the reality of this disease and they know that an extended prognosis does not necessarily mean an extended quality of life. In fact what it really means is that I get to deteriorate for longer, to suffer for longer.

For discussion sake, let's look at the original timeline. I was diagnosed in November and given a score of 38. That was 8 months ago. I was told that I could expect to lose about one point per month. Sure enough my current score is 30, a loss of 8 points in 8 months. I am right on track regardless of my new prognosis. That means I have about 30 months left. Of course not all of these will be good months. My ability to travel is probably limited to about 12 - 18 months at best. It could be less, hopefully more, most likely somewhere between.

Now consider my passport. It will take up to 6 weeks for me to get my new passport. This is because it can take up to a month to clear the federal maintenance enforcement order under which my ex-wife had my passport cancelled. After that I must go through the time and cost of re-applying for my passport. That time represents 10% of my travel life. Finally, think about yourself and losing your passport. If you expect to live another 20 years, try surrendering your passport for the next two. That is what this means to me.

What is even worse is the sense of loss when combined with all the other losses in my life. This is another loss, a completely preventable loss. This damage was willfully done, not by illness but through spite, greed and anger. That is why I am so angry.

Thursday, 11 July 2013

Shoulder Pain

I have a sore left shoulder today. It has been getting there for a few days and it is in full blown ouch stage now. I suspect I worked it harder than normal on the boat the last couple of days and this is the result. There is a low, incipient aching inside the muscles and a sharp pain when I reach, rotate or stretch. It feels like a pulled muscle or something along those lines.

This is a result of ALS. You might say to me "no, we all pull muscles now and again", and you would be right, partly. We all do just that. However contemplate for a moment how I might have done this, how I might have pulled to hard or reach too far or stretched round and craned my neck just a bit. You see when people with legs do these kinds of things, they use those legs to support their range of motion. I have no legs to do this.

Take for example the simple act of pulling on a rope. First of all, let me apologize to my sailing friends. I know that sailboats have lines, sheets, and halyards, not ropes. Not all the world knows this but most of us have pulled on a rope before. If you have, you know what it means to "put your back into it". Actually when you pull a rope or line, you use your whole body from your toes to your neck to do that work. You plant your feet, splay your toes, tense your leg muscles, bend your knees, arch your back and deliver all your body force into your arms.

In my case, there are no splayed toes. I cannot stand or use my legs to deliver energy to my upper body. Knees cannot be bent and held in place. When I arch my back, even when seated, I cannot do so fully for fear of falling off of whatever seat holds me. So all I really have is my upper back, somewhat, my shoulders, and my arms. This means I must work them all the harder to get the same pull result. When I pull a rope, there is no "get your back into it". It is only my arms and shoulders.

So it is no surprise that I pull muscles in my upper body more often that most. I use my arms and shoulders so much more than people with legs. It sounds odd, doesn't it? My arms are overworked because I have no legs. Yet is is true. The pain in my shoulder tells me so.

Wednesday, 10 July 2013

Each Day

Today is a new day, filled with new opportunity and new ideas. Today is a new day, filled with the chance for good things to happen and exciting events to take place. Today is a new day and I plan to live it. Today I plan to live my life completely, to treat myself with respect and love. I plan to be patient and kind with myself and others. I remind myself today that I am loved by God, family, and friends.

This his how I start so many days, looking at them as a new start, a new chance to do something good with my day and my life. I start each day by forgiving myself for yesterday and by asking God to forgive me in advance for the mistakes I will make today, knowing full well that I will make lots of them. When I am most beaten, most worn, most tired, most exhausted, I sleep and in that slumber hope seeps into me like the rain that falls on a low, dry field, filling each heat hardened crack and pore, bringing back the life that lies within the soil.

It's all very 23rd Psalm-ish. For example Verse 3 of that Psalm says "He restoreth my soul". With what I have faced in my life recently, my soul definitely needs restoration. When I awaken and don't find myself seeing the world through refreshed eyes and a restored soul, I know something is seriously out of place, that I am seriously out of sync with my life. When I don't awaken with a new hope for the day, something is seriously wrong.

I am certainly walking "through the valley of the shadow of death" these days. Yet even with this I can start each day seeking opportunity. Even though the first thoughts of my day are often around my illness, limitations and death, I almost always end up seeing beyond this physical limitation and seeking the spiritual and emotional opportunities. These days in the shadows are so difficult, yet each day I awaken and see hope.

This is why I don't commit suicide, or at least haven't yet. Each day, so far, presents a chance for something good to happen. Each day gives me the chance to see more, do more, live more. Each day is a chance for life. I plan to live it.

Tuesday, 9 July 2013

Another Goodbye

This will probably be my last day as a sailor, my last day on my boat. Between the challenges Ricky is having and the challenges I am having, he has decided that he doesn't want to do this. After today he will be staying ashore. I understand and appreciate his decision; this is not his dream, it's mine. Given that I cannot get on or off the boat without help, and that there is no immediate solution, it looks like this may be it.

You can probably hear the tentative in this. I am ever hopeful for solutions to present themselves. I am ever seeking ways to make things work. It is what I do. Yet I don't see much out there for me in this one. Face it, who wants to give up their life for mine? I find once again that life is what you make of it for yourself; you cannot depend on others to make your life happen. It's just a reality hitting me sooner than it hits others.

Of course a miracle might happen. Someone might suddenly appear in my life who will be the helper and companion I need and want. Someone might magically arise from nowhere to help me achieve this dream of "one last summer". It is possible, just highly unlikely.

Instead what is more probable is that we will take the boat into dock today, unload what we need for now and then return next week to strip it. We will take all "personal" items, leaving onboard the shore tackle and those additional things that will make it easy to sell the boat. Then, once it is cleared and ready, I will list it for sail with a boat broker. That is the more probably outcome.

Part of me feels a sense of relief. Perhaps this is just too much. Perhaps I need to start giving up these things that I want to do and accept that there are now limitations on my life, limitations that will increase no matter how much I try to fight them. Maybe it's time; maybe this is what is supposed to happen. Perhaps this is what  the middle stage of this disease will look like, acceptance of my limits and boundaries; realization of what I cannot instead of what I can.

I have had a sailboat for the last 16 years. I have had boats of some type for my whole life. I have always been on the water. To be honest there was a part of me that hoped to end my life on my boat, to see my last day as a day on the water. Alas this does not  look likely. It is more likely that today I will say goodbye to the sea. It is another goodbye in what is becoming a long series, too long a series. There are too many goodbyes.

Monday, 8 July 2013

Focus On The Good

I am tired this morning. I spent most of my night in sleeplessness, tossing and turning, worrying about the myriad of things going on in my life. It has been a very busy few days between dealing with health issues, boat issues, and yesterday's fire in my parent's apartment building. They are fine; their apartment is fine. There is a lot of damage to one wing of their building and they have had to spend the night in a hotel.

Mostly last night I worried about my divorce court hearing next Monday. I know that Carla has something "special" planned. She has been asking our kids to make statements and sign documents although the topic of these statements and documents is a mystery to me. I have expressly told my children that I don't want to get them in the middle of this and that I don't want them to worry about what they say or are asked to say by their Mom. It is all so irrelevant; the division of assets is something determined in law, not by any emotional pleas or demands. Yet I worry.

I am headed back to the boat today. I should be excited but that is also a cause for concern. I know that Ricky is anxious to get back to Vancouver but the weather in the straits has been rough for the last few days. I would prefer to wait another day or so to see it settle down yet I know he will want to head out quickly. He doesn't have enough experience to understand the risks and discomforts of making a heavy weather crossing of the Georgia Straits and I suspect he will be upset with the delay.

Perhaps the best thing for me to focus on is how good this visit has been with Mary, Albert and Rose. It has been an opportunity for me to talk with Mary and Albert, an opportunity for me to get to know my granddaughter, an opportunity to share time with them and let them know how I feel and what I am going through. We talked a lot, Mary and I. While we still have much to discuss, these limited times when we can share what we are experiencing in life, health, divorce, parenting, finances, all these topics that I will not have years to discuss but only months, these are important times and topics.

I am tired today. In that tiredness I am going to focus on what goes well, what went well, and the potential for another visit. Focus on the good, not on the tired. That will make for a better day.

Sunday, 7 July 2013

Too Much Reality

I could write two different blog entries this morning.

One would be about waking up this morning and for a brief shining moment, before clearing my throat and coughing for the first of many times today, before having to roll over to go pee in the urine jug beside my bed, before fighting with the covers to lift my lifeless feet, before all this, waking and forgetting that I had ALS.

ALS has done so much to change my life; it is an impermeable presence, an impregnable fortress within my consciousness. It resides as a permanent unwanted guest in the home of my soul. It has captured and destroyed my legs, savaged my spirit and ravaged my body. It is attacking my will to live and my strength for life. Even one moment, no more than the brief ticking of the clock for less than a heartbeat, even one glimpse of normal, is a gift of glorious light, life itself for a moment. Waking and forgetting was an instant of bliss is a miasmic cosmos of emotional toil.

The other blog entry would be about my marriage, the loss of one of the most important identifiers in my personal being. Last night my daughter Mary and I had a long talk about things like that, how I felt within my marriage, how I tried to make it a workable relationship, how I thought it could have worked if Carla and I could have bridged the gaps between us. It was a long talk and we both had things to say. We both got heard. We both shared feelings. It was a grown-up discussion.

My marriage was important to me, as important as my children are to me and perhaps moreso. It was so important that I submitted myself to it, subsuming my personality and needs before it in the belief that this would make it work, always facing the unuttered ultimatum that if I didn't do this I would lose my marriage and family, fearing the unspoken outcome which became final reality in the end. I said and did those things that I felt needed to be done to keep our marriage together regardless of how it made me feel. I tried so hard and yet after all of that it still failed. It is an awful thing to commit your life to marriage, work hard at it, do the best you can and give all you have to give only to have it end in divorce.

Both of these things are difficult; both are real. Both of these topics make me sad; both are real. Both of these could be full entries; both are real. There is an awful lot of reality in my life these days.

Saturday, 6 July 2013

Fighting Rommel In The Desert

I am thinking this morning of Winston Churchill, or more precisely of his speech in September 1942, his reflection of victory over the German army and General Rommel in the Battle of Egypt. It was the first major victory for the Allies in WWII. In his speech at Mansion House, the official residence of the Lord Mayor of London, he shared news of the victory, then reminded his audience that wars are won, not with a battle in the midst but with the last battle.

His most famous quote from that speech is "Now this is not the end. It is not even the beginning of the end. But it is, perhaps, the end of the beginning." That is how I am beginning to look at my war with ALS. It began, unbeknownst to me, in the early spring of 2011, perhaps sooner; I don't really know. I am now well past 2 years with a disease where most die within 3 to 5. I am handicapped, a paraplegic who struggles with the most ordinary of tasks. I have just had a heart attack and have even more limitations on me. My body is a mess yet my will to fight stays on.

I am seriously depressed, something not surprising given what I have just gone through. My son is struggling deeply with his ability to help me, to be with me. Other support systems to not appear obvious in terms of living my life on my own terms. It would appear that the time may be nigh were I am compelled, unwilling as I am, to live my life on whatever terms it gives me. No more boat; no more ocean sailing trips.

It may be the end of the beginning of my fight with ALS. It is certainly not the beginning of the end. I have a lot of fight in me. Yet I know that the last battle of the war will not be won by me. It is the nature of living and dying that death is always the ultimate victor over corporeal life. Between then and now there are great victories to be won, glorious battles to be fought, power filled life to be lived. Yet still it is a war I am destined to lose.

I am not giving up; I am struggling with the transition from the beginning of this disease to the middle of this disease. It has gone all too quickly. Soon I will struggle with the transition from the middle stage to the end stage. This is how it works. The beginning of this disease has ended. The end of this disease will begin soon enough. Now I am in the middle of it, fighting Rommel in the desert.

Friday, 5 July 2013

Type A

I have to confess that I feel pretty pleased with myself. I've had a small heart attack, been medivaced via helicopter to a major hospital, had an aniogram followed by angioplasty with thee stents, and been told not to use my right hand for three more days. Yet in all of this I have been in constant contact with friends and family and I have not missed a blog entry. I think this proves that I really am a Type A personality.

This morning I awoke to the sounds of nurses fussing about and thought of what angioplasty might entail. As I was prepared for this procedure my anxiety level rose. Fortunately the staff at Royal Jubilee Hospital did their best to calm my fears and explain each step of the process. They made sure I knew what was happening all the way.

It turns out that angioplasty and stenting has changed a lot over the last few years. Now, rather than go in through the artery in the leg, they go in through the wrist. In addition the only anesthetic used is a local in your wrist. You are awake throughout the process and can feel the catheter enter your arm and move up through your artery in your arm. It is a strange feeling.

After the work of the angioplasty and stenting, they hold you for only 4 hours during which time they watch for bleeding in the wrist and any adverse reactions to the blood pressure medication that is used to keep your blood pressure down. It's all a very simple and easy process, at least from the patient end.

The only real tough part is having to rest my right hand and arm. They don't want me to type, so I am doing this entry one-handed, or at least mostly one-handed. After all, I am still a Type A person.

Thursday, 4 July 2013

I Have A Good Excuse

I am very late with this posting today. I have a very, very, very, very good excuse. I had a heart attack last night. It's was a minor one, an itsy, bitsy, teensy, weensy one. It almost didn't register on the Richter scale. Yet is was enough to put me into hospital today, and serious enough for them to medivac me out to a major cardiac care center.

So here is how all of this came about. Last night at about 1:00 AM I got up for my usual middle of the night pee. I squeezed myself into the head, using the bulkheads to hold me up. Then suddenly and for no apparent reason, my legs completely buckled underneath me. I have never experienced this kind of weakness before so it would be fair to say I was surprised by this turn of events. I crumpled, crashing to the deck like one of those Hollywood office tower demolitions where the whole shooting match just goes straight down.

After falling down, I managed to slide out of the head on my ass, pulling my legs behind me. All the while I was huffing and puffing, completely unable to get my breath. I attributed this to the whole ALS thing. I was to discover the shortness of breath had another source. Eventually I got myself up onto Ricky's berth and then over to mine. By this time I was so out of breath that I couldn't get ahead of things. I was really worried. My chest was hurting too, something I attributed to the general congestion I suffer from these days.

Alas it was not ALS. It was my heart having a conniption fit. It had a good reason. I had blocked arteries about a decade back. When they did the angioplasty and stents back then, they left one artery blocked, saying that it would have to be done at some future date. I guess this is that future date.

I managed to calm myself with some good zen thinking and managed to get to sleep. However in the morning, this morning, things were worse. I felt like death warmed over and looked the part. I could not get my breath and was exhausted. So we left Bedwell Harbour and headed for Ganges on Saltspring Island. There I went to Emergency and they said "Guess what?"

So now I am in Royal Jubilee Hospital in Victoria, BC. Tomorrow at 8:00 AM I go for an angiogram. If the blockage is serious, and I think it is, they will perform angioplasty and put in a stent. Then I will be as good as new.

You see, I said I had a good excuse.

Wednesday, 3 July 2013

Off To Poet's Cove

Today is starting off well. I managed to get up early this morning and use the head without incident. I managed to make it back to bed without falling. When I decided I wanted to get up at 9:00 AM, I asked Ricky about it and he said can it wait until 9:30 AM. I smiled to myself and said yes, rolling over to read more from my book. When we did get up, Ricky and I managed an almost perfect extraction from the cabin using the bosun's chair, block and tackle, and the boom. The lift off the boat and into my wheelchair was almost perfect too!

We are on the dock in Sidney Harbour, just up the road from Victoria. The docks are wide and easy with a handicapped washroom at the office that is open 24 hours a day. It's easy to get up the ramp and the town is a bouquet of small shops and book stores. It is a tourist paradise, with a coffee shop or restaurant on every corner. While it is not perfect, it is certainly the kind of place that calls on us to stop and visit, something we do every year while we are on the boat.

Today our plan is to head over to Poet's Cove Marina in Bedwell Harbour on South Pender Island. It is about as close as you can get to the US border without needing a passport; there is a Canada Customs office in the harbour. The run will be short, only 9 miles, and we will leave sometime around 11:00 AM. That puts us on the dock, having a martini, some time around 1:30, allowing for docking time and what it takes to get me on and off the boat.

We are doing better each day although Ricky as talking about needing some "shore leave". You'd think he was some sort of sailor.

Tuesday, 2 July 2013


Ricky had a tough day yesterday. He struggles with this disease, sometimes even more than I do. He has to watch as I go through the challenges of daily activity. He hears me curse when I can no longer do something that was within my ability a few weeks ago. He sees me fight against the incremental loss, the little by little of ALS. It effects him.

He is also struggling with his pride. While he cares for me he is not working. While I pay for his expenses, and for this he is very grateful, he is not making his own money, something which affects his sense of pride and self-worth. In addition to having to watch me go through my loss, he is suffering losses of his own. It takes a lot of strength to go through all of this, a kind of strength that he is building along the way.

I have not always been strong although I think I am stronger now than I have ever been. Strength is something more than just the physical ability. That physical strength has always been mine and yet now that I am losing it, another kind of strength is showing up.

Over the years I have learned to be strong within myself, to be the kind of man who could endure great difficulty and yet still persist in things, to be the kind of man who could withstand harsh and painful things, yet still keep moving forward. I have felt the pain of failure and learned, learned to accept my responsibilities, see my mistakes and I've been willing to make the hard decisions. Much like physical strength, this kind of strength is only built by exercising it. This kind of strength is based on experience, not weight lifting.

I've learned that there is a tremendous difference between being strong and being rigid. The greatest strength lies in the willingness to see necessary change and to embrace it, the willingness to know what must be done and to do it even when it hurts. Strength is doing the hard things even when the easy is there within reach. Strength is enduring what must be endured, doing what must be done even when you don't want to do it. Often the hard thing to do is the right thing to do.

Nobody would ever say that I silently endure; I am definitely not a stoic. What I am is the kind of man who sees the difficulty, feels the pain, learns from it and keeps going. My hope is that Ricky is learning this too, that it is possible to make mistakes, stumble, fall, and still get up and keep going. I want him to learn that it is possible to face great odds, endure great challenge, fight great difficulty, and still keep going.

Monday, 1 July 2013

Canada Day

It's going to be a scorcher of a day today; summer has arrived on the BC coast. The clouds from a few days back are nothing but a damp memory. It's early and already it's hot. It will be one of those kinds of days where sunscreen is a limp promise of protection yet an essential requirement. Plus, no wind.

That may not really be the case. Days like this, these days of clear blue, endless sky, are typically part of the summer high pressure ridge that forms over the BC coast from late June to early September. Periodically this patter produces land breezes, some with famous names like the Nimkish and the Qualicum winds. These winds, like the Sirocco of North Africa and the Mistral of France, are built over the land, in this case Vancouver Island, and rush down valleys to the sea, creating sudden gusty winds and rough seas. The only plus is that these winds are typically cool and dry, creating terrific sailing conditions, assuming you are not heading to where the wind is coming from, a situation all too common along this coast.

These islands where we cruise, known as the Gulf Islands, dot the east coast of Vancouver Island all the way from Victoria up to Comox, making this area one of the most protected and beautiful cruising areas in the world. The waters are rich with salmon, seals, porpoise, dolphin and whales. The skies are home to the eagle and raven. The land is lush and green and rich. No wonder the natives didn't want us white people showing up. Yesterday we came within a few feet of a Harbour Porpoise and I have seen all kinds marine mammals in these waters.

Today we are going to head across Cowichan Bay and down into Saanich Inlet on the southern end of Vancouver Island. Our plan is to stay at Brentwood Bay where they have an excellent marina. I want to have a shower but most of the marinas along the coast qualify as rustic. Brentwood Bay Marina is fairly high end, much like the Sidney Harbour Marina opposite on the other side of the peninsula.

It will be an easy day today with only 12 nautical miles to cover, taking about 2 and a half hours. We will stay at the dock until 11:00 AM or so, then, lazily and with no sense of time and timing, we will head out onto the water, drifting our way across the glass, sunning ourselves and taking it easy, until we get to the other end of the chart. I like days like this.

Happy Canada Day!