Just For Today

Just for today I am going to live, just for today. I know, redundant. Repetition isn't a bad thing unless it’s repetitive. I need to remind myself on a daily basis, sometimes on an hourly basis, sometimes moment to moment that all I need to think about is what is happening in this moment. Tomorrow will take care of tomorrow; yesterday is gone.

Life here on the ocean can help with that a lot. It’s rhythm is different that life on land. Getting up and getting dressed is just as difficult, perhaps even more difficult, than it is on land, in my apartment. I am just as tired after getting dressed here as I am any where else. The physical limitations don’t change. Yet the view is different, the urgency is lost, the need to rest is more easily rewarded. There is no hurry here.

It’s sunny today and it is going to be a hot one. It demands sunscreen, protection of the ferocity of the burn and the bounce of the sun off the water. We are inside the Southern Gulf Islands today, starting from a place called Montague Harbour and headed for Genoa Bay, rounding the southern end of Saltspring Island along the way. Montague Harbour has all the rustic you could possibly want, from a cafe owner who keeps hours to suit herself to the requisite funky dream-catcher hanging in the window of the kayak excursion and rental shop. Things here get off to an easy start; it’s catching.

The boat cabin is a mess. Ricky is not much for tidy and I simply don’t have the energy or strength to quibble over it. My bed is clear and I can sleep. Mostly I can get to the head. We've taken to leaving my wheelchair in the cockpit at nights; I am not concerned about theft, not out here. As to the mess, we can take a look at it later today. Sooner or later it will have to get tidied up, but not right now.


I did something unique today, something I have never done in all my boating life. I let someone else, Ricky in this case, start the boat, slip from the dock, refuel and take us out. Ricky skippered about half way to Genoa Bay, then I took over for the rest of the run. Here in Genoa Bay we are meeting up with my friend Chris and a whole bunch of his friends from the Port Moody Power and Sail Squadron. It will likely prove to be a late night, but then again I can sleep in tomorrow if I want.

I think I am going to take it easy, just for today. I am going to relax and let things take their own course. We’ll see what happens tomorrow.

One More Time

This vacationing stuff is not for the faint of heart, especially if that heart is inside a person with no legs. It takes an awful lot of energy and struggle to get even the simplest things done on board, things like going to the bathroom or getting in or out of the cabin. Don't get me wrong, I can do these things. It's just that the time is coming soon, I can see it out there, when I can no longer do these things.

Take getting into the head for example. The head is the part of the boat with the toilet in it, the bathroom. In my very small boat, the head is only two or three normal steps from my berth. We've taken the table down and converted it to a bed so it is easier for me to get up and down. The lower salon berth, where I've slept for more than a decade, is too low for me to get up. Now when I want to get to the head, I fling my legs over the side of the bed and from there I can stand.

Since I cannot walk, I slide my legs forward using my arms to maintain verticality. Only the boat does not have a flat floor. It is raised up at the sides and rises as you go forward. My legs don't have the strength to make that slide. What I have done so far is braced myself against the bulkheads and used my arms to life my legs forward. So far my remaining leg has only buckled once.

Then, once I get to the head, I must rotate towards the toilet. Since the ceiling is sloped, I cannot just rotate. I must rotate and bend at the same time. Once again I brace myself and in this case I use my arms to push my body around, using the counters and centre-post for hand holds. I have bars to put in place but they are not there yet; it is another task to be done.

Once my body is rotated I use the toilet itself as a brace. While leaned over I can force my legs forward just enough to reposition myself for the all important aim. Then, finally, I assume a position with reasonable targetability, and then I pee. It is all very exciting. Much like a box of chocolates, I never know what I am going to get, or hit for that matter. As to sitting, this is even more difficult as it involved getting up and down, something even more challenging. Plus sitting involves removal of pants and that ain't no easy assignment.

Still one must remember that I am doing all this on my sailboat in some of the most beautiful cruising areas in the world. This region of warm summers and light weather, where the rain is light from June to September, where every bay and inlet has a small marina with attendant pub, where life is easy for us vacationers, this land of holiday is mine to see. I will see it one more time, I think.

Silva Bay

This is a late blog, very late. It is 6:00 PM and I am on the afterdeck of my sailboat in Silva Bay. With the change in my life pattern, the change from land to sea, the change from Alberta to the coast, my posting patterns will change too. Blog posts will come later with the pressure of mornings on the dock. It is even possible that the tone and tenor of these posts will change as the calm of the water infiltrates my spirit.

Today was a typical water day. We spent last night up too late playing the part of the salty sailor, drinking rum and telling tales with neighbours on other boats. The morning poked its light into the cabin of our small boat, challenging us to get up and get going. Eventually we did, shevelling our dishevellment and tidying the mess on board in preparation for departure.

Then we went to start the motor. It wouldn't. Try as we might, it simply turned over and over and over, refusing to fire up and go as it is supposed to go. I was inboard, offering instructions to Ricky on the positions of switches and the quality of fuel and the amount of choke. He was in the cockpit demonstrating all the miniscule patience of which he is capable. Finally after about a half an hour of frustration, I struggled into cockpit, hauling myself out of the cabin and pushing myself on my butt across the cockpit sole.

Then I looked at the starting key and realized I had given him reverse instructions for the positioning of the "kill" switch. This is a toggle switch designed to disable the engine in an emergency. You position the switch up with a clip-line on it, and attach the line to yourself. If you fall overboard the clip-line pulls the toggle and the engine stops. Instead of up, I told him down. Once the switch was set properly the engine started immediately.

With the engine started, we got fuel and headed out. The Strait of Georgia was flat and calm, an unusual state for this temperamental stretch of water. I've seen it raging in a full gale, seas smashing cabin height, throwing green water over the deck. I've seen it in a winter storm, and in a summer storm. And I've seen this water change its mind on a moments notice. Today, no change, just calm. As my Dad would have said, "flatter than piss on a plate."

The skies were clouded with low slung grey, drooping from hip to hip, horizon to horizon, threatening rain with no actual delivery. There was sun somewhere to the south and there were darker, nastier clouds to the north but our run was dull and dry. Maybe that's not a bad way to start an ocean holiday.

Silva Bay itself is a beautiful anchorage, or marina in my case, set in behind a series of small breakwater islands, just outside of Gabriola Passage. It has a fabulous restaurant and pub up high off the docks with an amazing view of the bay, filled with boats milling about, jockeying for anchorage or lining up for moorage. It is a constant show of come and go, entertainment for the simple. That would be me.

Worry

Worrying does not rob tomorrow of its troubles; it robs today of its strengths. Corrie Ten Boom

I worry too much. I admit it. I worry about what people think of me, then I worry that they don't think of me at all. I worry about things that might go wrong, then I worry about things that might go right. I worry about not living long enough, then I worry about living too long. I worry about standing up, then I worry about falling down.

It is in my nature to worry. In my work I was almost always the designated worrier. I do it so well. Yet in so many cases it is pointless. So much of what I worry about is stuff I cannot change through worry. So much of what I can change, I don't change through worry but through action. And yet I worry, about everything.

Dealing with the divorce, the costs of lawyers and courts, the time and trouble... it all adds to the stress and anguish of living. My soon-to-be-ex-wife's strategy of perpetual delay after delay, her destructive scorched earth approach, causes me untold grief. I worry about the things she says to my children. I worry about money. I worry about my health. When I look ahead I see a dire financial future, a dire emotional future, a dire physical future. When I look into tomorrow it is a very dark place. I am consumed with worry.

It is on days like this that suicide looks like a viable option. The problem is that if I take my own life, I can see my ex-wife telling my children "See. I told you your father was mentally unstable." She will tell them I have abandoned them once again, for death is the ultimate abandonment and I chose it willingly. This disease is very depressing, and so is worrying about it.

You have to be strong to deal with this disease. You have to be strong when the doctor looks you in the face and says you have 36 months to live. You have to be strong when you get your monthly score and it is lower every month. You have to be strong when you lose your feet, your legs, your mobility, your independence and dignity. It takes strength to keep living with ALS.

Some days I am stronger than others. Some days the rain seems like it will never stop. Some days it is easy to think there will never be sun again, never will the skies clear. Some days I worry, a lot. It saps my strength.

Sleeplessness

I couldn't get to sleep last night, at least not easily. My mind was filled with thoughts and ideas and worries and a whole bunch of those awkward things called feelings. Dying from ALS is easy; anyone can do it. Living with ALS is challenging; most of us manage it. Feelings... now they are tough. Feelings are demanding,  refusing to be ignored. Thoughts and ideas insist on being heard, regardless of the hour of night.

Last night I was in a hotel room, in bed, lying there. I had no sleep aids, no wine, no scotch, nothing to slow down my racing mind. Getting out of bed is challenging enough, so there would be none of that, no getting dressed and heading out to a bar for a few beers. This is the Sandman Hotel in Abbotsford; apparently the concept of a mini-bar is yet to be implemented. Moxies is across the parking lot but I suspect that if I showed up in my wheelchair wearing nothing buy my boxer shorts, they might get a bit concerned. Regardless, they were closed anyway. It's after midnight and that's when Abbotsford goes to sleep.

Yesterday was actually pretty good. It's amazing how family and friends can wipe away the dreariness of a rain soaked sky. My morning started with breakfast at the Denny's attached to the hotel. This is the source of room service for the hotel; no room service for me. I met my daughter and grand-daughter in the restaurant and we visited over coffee, toast and pancakes. My grand-daughter is two and a half, and chatters in the cutest way. She has, as my Mom says, "personality". A visit with her and my daughter was a wonderful way to start my day.

After breakfast it was off to the lawyer's office. It takes paperwork to prepare for dying. I needed a Power of Attorney set up so that if there comes a time when I cannot communicate or manage my affairs, someone can do it for me. We also had to discuss my divorce proceedings. They are still dragging on, still consuming resources, still adding stress to my life. It must be done.

Once that was complete I got to visit a few old friends of mine, the kind of friends who have known me since I came here at 19 years of age, the friends who have seen my through marriage and children, and who are still friends at this time of my life. These are precious people and visiting with them brought sunshine into the mists of rain that continued to fall into the afternoon.

Conversations with my friends often bring me better perspective, better views of what my life means and meant. Perhaps the best comment of the days was from a very good friend of mine with very strong Christian values. We talked about the failure of my marriage, something he has never judged me for or even commented on without the greatest of sympathy and support. I had said I did the best I could, and I felt Carla had too, he said "No marriage can work when it is a marriage of servitude."

This was a stunning point of view to me. I had never considered myself in servitude. I asked him if he meant me and he went on to say not only yes, but several other things that made me think even more. It was an eye-opener, that this man with such strong faith and convictions could see the difficulty and damage from such a unique point of view.

I thought about it lat night. I am still thinking about it. I need to think about it some more.

Abbotsford

I am staying at a hotel in Abbotsford today. For the first time in my life, I am a visitor here, seeing this city from a completely different view, that of a transient and not a resident. This is where I lived from 1975 to 2011, although some would say I barely resided here in the last few years, spending long amounts of time working in places like Fort McMurray and Calgary, or off on speaking engagements around Canada, the US, Europe, and so on.

Driving into Abbotsford was tough for me yesterday. It was rainy, dreary, and depressing, the way a city can be when the branches are soaked and hang too low over the streets, when low clouds hide the sun, blotting out any hope of a spirit lifting show of light and warmth. It is a different place than the small town I came to as a young man. It is a different place than the village where my wife was born. Once it was a town where you knew your neighbours, where people talked on the street, where every shop and restaurant held customers who you knew, whose children you knew, whose parents you knew.

Now it is a big city, filled with strangers and violence. Just yesterday in Abbotsford there was another, yes another, gang-land shooting on the streets, at 5:00 PM right across the street from my hotel, in an open parking lot filled with shoppers. In the restaurant last night there was nothing but strange faces and people with whom I could not relate. The streets were crowded with traffic, going to and from mall after mall with giant international chain stores.

I remember when there was only one streetlight in town. I remember when the mall was so new it wasn't even complete. I remember when the main drag was half populated by small buildings and shops, and half populated by houses and small industrial yards. Even the hotel where I am staying has a memory. I remember when this site, just a half block from the main street, was a chicken farm with a rickety old barn and and even older house. I remember the man who owned it. I remember the old hospital where my wife was born, where all of our children were born, some in the same room as her.

This used to be a place for family, community, friends. This used to be place where you could live, learn, make a mistake and grow past it without some gangster with a gun shooting at you. This once was a place where I fell in love, raised a family and set down roots. This once was a place where generosity was normal and where concern for others was a part of the community values.

Now it is just a wet, busy, dark and dangerous suburb of Surrey. It's not even part of Vancouver; it has no ocean and even less soul.

Standing In The Light

One of the risks in doing this blog is that I am opening up my feelings, myself, to the blogosphere. By it's very nature, this is an open community, one where people can comment and share their ideas without restriction or barrier. Unfortunately this also means that people who are hateful, spiteful, angry and vicious can use the cloak of anonymity to spew their hatred and bile.

Someone, under the guise of anonymity, has been spewing their hatred for me on this blog. This person has been using this space to attack me, to say things to me under the cloak of darkness, lacking the courage to say what they mean in full view of all. This person has posted some fairly hurtful and hateful comments, delighting in the ability to hurl abuse without having to accept the responsibility of being named. This person also posts in later postings knowing that his or her diatribes will be seen primarily by me and not those who read this blog on a regular basis.

I am of two minds in terms of dealing with this. So far I have simply deleted the most hateful and egregious commentary. Last night, however, when I did this, "Anonymous", with clear glee and delight, simply reposted the same commentary with an additional "nyah, nyah, nyah" attached. This cretin clearly takes joy in the pain he or she causes. My other response is to use a more systematic approach.

I have a limited set of system tools for this. One of the tools is to limit comments to only those people who identify themselves. I am unhappy about this, as it limits the ability of people to share their thoughts and ideas about my journey towards the end of my life. It is a barrier, a boundary that has unfortunately been thrust upon this blog by the inconsiderate and hateful postings of someone who lacks the courage to be seen, to be identified, to be known.

It is with a heavy heart that I have decided to remove anonymous posting. If you want to post here, you must identify yourself. You must, as I am, be willing to be known for what you say, to be seen for who you are, to be held in the light of day and to have what you say held under that same light.

Has "Anonymous" won? Is "Anonymous" the victor? In some ways this cruel, spiteful person may feel some vindication, like he or she has won some sort of victory. He, or she, has forced me to put boundaries on who can comment. On the other hand, perhaps this is important. Perhaps this person will now be forced to step out from the darkness and to be as brave as the spiteful commentary. Perhaps Anonymous will now become real, and perhaps responsible too.

But I doubt it. Cowardice cannot stand in the light. It hides in the darkness, unwilling to be known and seen. Cowards live in fear; fear of being known, fear of being seen, fear of being caught. I am no coward. You can see me, you know who I am, it's easy to identify me. I stand in the light.

Sick and Tired

I am sick and tired of being sick and tired. I start almost every day feeling this way, feeling the hurt and struggle, feeling the frustration of getting up, the challenge of going to the bathroom, the difficulty in getting dressed. Then I go to make coffee and I feel it all over again. My day has just begun and I am finished.

My shoulders hurt from the struggle of lifting up and down. My hands hurt from the work of pushing and pulling. My neck hurts for no reason at all, it just hurts. By the time I get up, go to the toilet, get dressed and get coffee, I am ready to go back to bed again. My knees hurt from inactivity, from sitting in the chair all day and sleeping without motion in my legs all night. My feet hurt from swelling.

My energy level plummets after any activity. Even doing fun stuff is tiring. The effort of being positive, upbeat, enthusiastic and lively takes its toll. Someone recently said to me "Other than the wheelchair, you look great." Trust me, you can see the outside but you cannot feel the inside. None of use lives in another person's skin; we know only our own pains and struggles, not those of our compatriots.

The problem is that it may not be ALS that takes my life. In addition to the struggles with this nasty disease, I have the same struggles as everyone else. I might get hit by a car or I might have a heart attack. Cancer may strike me down or I might simply fall down and hit my head, assuming I could stand in the first place. Oh, and nobody will sell me life insurance.

I am sick and tired of being sick and tired but I am not sick and tired of living. That's part of what makes this such a shitty deal. I want to live. I want to have a life. I want to walk in the sun, ride beside the river bank, hike through a forest, stand on the foredeck holding the shrouds and feeling the wind. I can do none of these things in the ways of "normal" people. Yet, in addition to my lost abilities, I must also face the normal challenges of life and death.

Normal challenges would be wonderful. To simply pay the rent without having to budget for a timeline, to simply go shopping without having to worry about things on shelves that are too high for me to reach from a wheelchair, to simply have a shower standing up, to simply do laundry without the struggle of wheeling up and down the hallway, through doors while holding onto an overfull basket; normal challenges would be a gift. To live and die in a normal way, this is all I ask for yet it is not what I have been given.

It is simply oppressive some days, like dark clouds heavy with rain and the threat of storms, covering my horizon, blanking out the joy of a clear blue sky. The sense of inevitability, of certainty. Human brains are not made to work this way. Our brains are not made to contemplate the finality of life. If we all did that, none of us would accomplish, none of use would strive, none of us would aspire.

I want to live before I die. Some days it is more of a struggle than others. Some days I really am sick and tired of being sick and tired, like today.

My Frustration Is Showing

I blew a tire on my wheelchair. I know that sounds like a setup for a joke but it is no laughing matter. This is my single most important mobility device, the sole method I have for getting around, going to the bathroom, travelling to and from my truck. This is a big deal for me.

There are those of you who will tend to see humour in this. Perhaps in the future, once the struggle and difficulty it places in my life has gone past, I will see the humour. Right now it is a major source of anxiety. So if you want to make a joke, don't. When I see the humour, I will make the joke. That way you can laugh with me; making a joke right now is simply laughing at me and there is nothing funny about my situation.

You see, a blown tire on a wheelchair is much more than a minor inconvenience. Wheelchairs don't come with spare tires, so I cannot simply put on a spare. Wheelchairs don't come with auto-club coverage; there is no tow truck for a wheelchair. In order to resolve this situation I have a few choices, all of which present additional challenges.

Take the simplest approach. I could take my wheelchair to the wheelchair shop and have them fix it. I certainly would like to do that. However that means rolling on the rim of my wheelchair to my truck and then into the shop. This will mean rolling over pavement, gravel, and rocks, destroying the tire and potentially damaging the rim of the wheel, a rim that will cost several hundred dollars if I have to replace it. At a minimum the repair job will entail an new inner tube and potentially a new tire. Plus I will have to pay to have it replaced. So I am looking at a minimum repair bill of around $100 with this approach assuming no rim damage from the trip.

Then there is the approach where I remove the wheels from my wheelchair and take them to a tire repair shop. Any bicycle shop can repair this tire. But wait, with no wheels on my wheelchair, how do I get to the truck? I can ask Ricky to do this but that is not the point. What if there was no Ricky here to help?

All of this gets even more complicated with the flooding here in Calgary. The wheelchair shop is behind flood-closed roads and bridges in the south of Calgary. I am not sure what bike shops are here in the northwest part of the city, nor am I sure if they will do the repair.  So perhaps I have to wait until Monday or Tuesday, trapped in my apartment, missing my appointments and get-togethers with friends. After all, the government says to stay at home unless you have to travel. Is my situation so urgent, given that I can stay home, trapped inside?

You see, life is a lot more complicated when you are stuck in a chair. Try it sometime. Break both legs and have them put in casts, spend all day stuck in a seat, give up your mobility and ability to stand up. Right now I am pretty frustrated. I guess it shows.

Carla

Katie strikes again. This time, however, her question is dangerous, almost subversive. It is a question with an answer that will bring up old feelings. It will make me think about things gone by, opportunities lost, futures missed. I wonder if I should even answer it. Yet I made a promise as much to myself as anyone else. Ask me anything; I will answer. Her question is "What made you fall in love with Mom?"

Fall in love I did. Love her I did. Carla was central to my life from when we met in January of 1975 until I left her almost 37 years later, heartbroken at the loss of something and someone so important to me. In reality, after so many years together, she is still part of my life, emotionally connected at a distance, Mother to my children, partner in so much. You simply cannot fall in love, be in love, for that long without some sort of emotional hangover. I guess that is what we call "baggage".

I fell in love with Carla the first time I saw her. She was 18 and I was 19. It was the second week of January in 1975. It was evening, 6:45 PM to be precise, in the halls of W.J. Mouat High School in Abbotsford where we were both taking classes at the nascent Fraser Valley College. I saw her walking down the hall in front of me, peasant skirt swaying with that lilting kind of walk she has to this day. Her hair was long and soft brown, swinging freely from side to side as she made her way into the office. She was beautiful, a kind of beauty that she has to this day. And we were in geography class together.

I fell hard, smitten. I don't know why. Perhaps it was something chemical. Perhaps it was hormones. Perhaps it was the hand of God. My brother Peter once said, many years back, that he thought we had some sort of psychic connection. I am not sure. I just remember seeing her, walking, standing, laughing, talking. I remember her easy grace and gentle manner, her kindness. I also remember her strength and commitment to what she believed.

In my mind's eye that day still plays full, each detail of that single moment still clear and bright. I will ever remember that moment. I remember sitting with her that night in the cafeteria during class break. I am not sure what we talked about but even then I knew I wanted to marry her. My life changed that night.

What made me fall in love? I guess I really don't know. But I stayed that way for a long time.

Search Terms

One of the ways people from all over the world end up at my blog is through Internet searches. The Blogspot site tracks these search strings, the questions and parameters people put into Google and Yahoo and Bing. They list this information for me to see and what I see is fascinating. Here is a list of recent searches where people ended up clicking on the link to my blog.

• how long can you live with als
• als suicides
• i am dying from als
• incorrect als diagnosis - richard mark green
• cost of living with als
• if you had als gain weight

How long can you live with ALS? That is a tough question. This searcher clearly wants some sense of what the future looks like for a Person with ALS. The truth is that if you look at it without dismay or distress, even then it is a challenging view. Most people die within 2 to 5 years of diagnosis. About twenty percent of people with ALS live five years or more. Up to ten percent will survive more than ten years and five percent will live 20 years. There are people in whom ALS has stopped progressing and a small number of people in whom the symptoms of ALS reversed. The situation is not hopeless; it is merely dire.

ALS suicides. I've thought about it; strike that, I think about it, daily. It's tough enough to get a prognosis of 36 months. It's really tough when the doctors describe those last months of your life, and even tougher when you meet other People with ALS who are past living and into dying from ALS. Suicide seems to be such a reasonable option. The only problem is one of timing. You may not want to ride this puppy to the end but you sure don't want to leave too early. Suicide is an option, it's just not a great one.

I am dying from ALS. No, you are not! You are living with ALS. From the moment you are born you begin the march to death. We are all dying from something. The only challenge for a Person with ALS is that we have a "best before" date and a score that tells us how long it will take to get there. If you have ALS, be sure you live before you die. Then again that advice works regardless. We, each of us, should all live before we die.

Incorrect Diagnosis. It happens. ALS is a great imitator. Doctors often miss symptoms or attribute symptoms of ALS to other diseases. Doctors assume its ALS based on clinical information yet at times fail to see things like Lyme Disease or other Motor Neuron Diseases. How often? When I asked my neurologist this, she said they were wrong less than 1% of the time. Even if she is over-confident by a factor of 10, that's a 1000% differential, they are only wrong about 10% of the time. Doctors hate to say the words ALS; it is a disease against which they are powerless. It hurts their Messiah complex. They will fight to find something else and will only submit when all else is lost. They aren't wrong very often.

Cost of Living with ALS. It's high. ALS is probably the most expensive disease there is in terms of lifestyle costs. There are the mechanical elements, things like lifts and chairs and walkers and bed rails. There are the mobility elements, things like vehicle modifications and hand rails and controls. There are medical elements, things like visits to doctors, physiotherapists, counselors, nutritionists, speech therapists, and the list goes on and on. These and more are the costs of living with ALS.

If you had ALS, would you gain weight? Yes! I am living proof. The "beer and nacho" diet works. The problem is not that you gain weight but that you don't gain enough and can't keep it. With ALS your metabolism runs faster. You simply need more calories to keep your energy up. When the disease attacks your ability to eat, you will lose weight, far faster that you would like. So eat, drink and be merry.

Swollen Feet

One of the less than thrilling side effects of losing the ability to walk is edema. Edema, or more simply, swelling, occurs in my feet and lower legs. It happens fairly consistently each day, starting shortly after I get out of bed and lasting all day. It's worse when I don't wear socks.

In ALS patients the swelling is a result of the lack of muscle action in the legs. The upper leg muscles can be thought of as the "heart" of the lower body. There is no "up elevator" for the blood that flows from the heart into the lower body. Blood returning from the feet to the heart has to be pushed and squeezed upwards, kind of like forcing ketchup out of one of those little packets. Walking is the most common way the body accomplishes this task; the muscle contractions compress the veins and force blood uphill, against gravity, back to the heart. A series of one-way valves in the legs helps keep the blood from draining back down.

The loss of muscle movement makes it much harder for the blood to get back up my legs. So it pools in the veins. Then water seeps from these swollen veins into the tissues of my feet and legs. Eventually this swelling will damage the tissue permanently. On top of the tissue damage, the extra pressure in my legs will cause the one-way valves to fail, creating even more pressure and eventually leading to clotting. A pulmonary embolism is just another way to die; it's not likely in any case, pneumonia is far more likely to be the culprit.

In other words, besides being itchy, nasty looking, colourful in more shades of red and purple than you can imagine, more prone to surface damage and cuts, this whole process is downright dangerous. My skin feels like it is burning at times. My legs and feet are more sensitive to temperature changes or just plain hot and cold. Eventually even the skin on my legs and feet will become fragile, with a higher tendency to injury and ultimately ulceration. If it gets this bad, these open wounds won't heal because the blood flow to the skin is so poor.

Needless to say, I am not thrilled about this. It is just another complication of this nasty disease. I can help slow this side effect by keeping my legs as active as possible, by wearing socks that promote upward circulation and by elevating my feet appropriately. Of course, as with everything with this damned disease, it is not as simple as elevating them. For example a recliner with a raised foot won't do as the blood still doesn't get past my waist. The best thing for me to do is lie down with my feet slightly elevated, but not higher than my head. Feet and ankle massages help too but so far I have had no takers on that one.

It's all very complicated but then again so is almost everything about this disease.

Loving And Giving

I want to write about love yet I feel such inadequacy in this area. This may seem insincere to some given that I left the woman I was supposed to love and even in the throws of this terrible disease I would not return. On the other hand the love I have for my children is unending and I know they love me. The love of my Mom and brothers is incredibly supportive. To quote that sage and fount of much wisdom, Forrrest Gump, "I know what love is". Love is the most powerful thing in this life.

In 1 Corinthians 13:13, the Apostle Paul says “Faith, hope and love; and the greatest of these is love.” Love is the most powerful emotion we can have albeit closely followed by hate. Love is not the opposite of hate, it is it’s sibling rival. The opposite of love is indifference; to truly not love someone is to not care in the least. You cannot hate someone without caring about them and you cannot love someone without caring about them. Hate does not destroy love nor does fear. A lack of caring is what destroys love. If you don't care, you neither love nor hate; you just don't care.

Now take the corollary to that; if you care in the least about someone, you must love them to some degree. If you hate someone, you must be so angry, so deeply afraid and feel so deeply insecure in your own self that you cannot fathom an alternative response. Even in this, love is the key. If you cannot love yourself, you cannot love others. So love has caring at its root.

If you love someone you will want to give of yourself to them; to do otherwise is impossible. Yet your own internal love of self is the well from which you draw. If your well is shallow, soured and empty, you will have little to give others even when you so desperately want to give. If you have a deep internal well, then you will have much to give.

That internal well is built on a foundation of learning and being loved. I learned about love from my Mom; she has given and continues to give. The more you give, the more you are loved, the more water will be in your well. Perversely the more you draw from that well and give to others, the fuller yours will be. The more you give, the more you will be given.

Love is not about relationships, marriage, lust, sex or any of those other things. Love is about giving, helping, sharing, kindness, forgiveness. Love is about the spirit within you, the spirit that forgives and reaches out endlessly. Love is about your ability to give knowing you will never get it back, yet give regardless. Love is the only true emotion, the only true feeling, the only real reason for life. And giving is love in action.

If you love someone, be giving to them without the hope of return. If you expect a return, perhaps it is not love that you give. If you give to someone ceaselessly and they show no willingness to give back, then perhaps they don't love you. Perhaps they just don't care.

The saddest of times in a relationship is when both people feel they are doing all the giving with nothing in return, when two people are so out of touch with each other that what the other can give they fail to appreciate in receiving. I am not sure there is any way past this, but if there is it must start with giving up, and simply giving. You have to care both about the relationship and about the other person, and you have to be willing to act on it. You have to give because there is nothing else you can do.

Maybe that is the key. First you start by giving. Loving and giving; they go hand in hand.

Something Like This Blog Entry

I hit the road again yesterday, just for a short trip to Saskatoon. No reason, just went. It gave me some empty hours as I drifted across the open prairie from Drumheller east, past open fields and farms where the fresh green spanned from here to horizon for hour after hour. It was Father's Day and I thought some more about being a Dad, and I thought about road trips, then I thought about the two together.

I have explored. I've seen every province in Canada from left to right and right to left, from top to bottom and back. I've touched the sky in the Rockies, driven across prairies and plains so hot it melted the tires on the tent trailer, rounded Superior from the lakehead to the Soo, driven the Ottawa valley and the St. Lawrence valley on both sides of these quintessentially Canadian rivers, ordered a burger "tout garni" in deepest, darkest Gaspesie, circled the Maritimes, catching the Port Aux Basque ferry at night and returning on the Argentia run where the kids played min-golf on the windy, rolling top deck.

In all of this, my children were my constant companions. My kids have been with me for so much of my travel, by car, plane, boat and train. My kids have been there in Chicago and Detroit, California and Connecticut. We've driven down narrow gravel paths to beaches where they could look out on the open Pacific and see nothing but ocean all the way to Japan. They've scrambled on the rocks at Peggy's Cove where I held them back from cruel Atlantic, safe from the massive breakers at the outer shore. In all this and so much more, my children were with me.

I have always felt that seeing the world played an important part in building adults. I wanted them to see that this archipelago of Canadian communities, connected by road, rail and river, was wonderful, exciting, different and new; completely different from their small parochial town in the BC bible belt, boxed in by the border and a stack of books. I wanted them to see a world larger than every day. I wanted them learn that different was not dangerous, that new or old was neither bad nor good, just new or old. I wanted them to know that no matter where they were, be it airport, ferry dock, border crossing or highway rest area, they could handle whatever life threw at them.

I think I did a good job at this. As a parent, I have always believed that we are raising adults, not children; that childhood and teen-hood are passing phases and our job was to use this time to equip them with the tools and attitudes that they would need to survive in a world that was not always easy. I used the world as a learning experience for them.

I know I succeeded somewhat. I know that I learned more from them than they did from me. I learned that when you give a child freedom, they will take it and whether near or far they will show you how they intend to use it, and use it they will. If you have done a good job, they will show you that they value their freedom and hold it precious. If you show a child that they can trust their judgement and make good decisions, they will make them, sometimes to your dismay and peril, sometimes very different from yours. Yet if you have done well, they will know that with the power to decide comes the responsibility of outcome. I've learned that if you love a child and give them independence, they will know that it is both the power to leave and the power to come home again.

My sadness is that I will not be here to help my children pass these lessons on the their children. I am not quite finished. Then again no matter how long I lived, I would never be finished. That's called being a Dad. It goes on, and on, and on.... something like this blog entry.

Father's Day

It's Father's Day today.Everyone who writes a blog will be writing about fathers and I am no exception. It is a day that fills me with trepidation, wondering who will call, who will forget, who will decide not to call even though they remember. Having four children, I have seen almost every response possible to Father's Day, from childhood adoration to teen repudiation and beyond. I try to remind myself that I chose to be their father; they did not choose to be my children.

It is a sadness in my life that my role as Dad will end soon. I will not be there to help them understand why one of their children, their flesh and blood, would reject them so harshly. I will not be there to help them find a child a continent away who does not want to be found. I will not be there to help them understand the 3:00 AM drunken call for help, or the call that starts with "Dad, first of all I want you to know I'm not hurt".

I will miss seeing their children grow. I won't be there when my grandchildren go away to school or graduate a dozen years later. I won't be there to tell the stories of my childhood and of their parent's childhood. I am sure others will tell them stories, but who will tell them my stories? What stories will be told of me?

I know a few things about being a father. I know that no matter how you try, no matter how hard you work, no matter what you read or who you listen to, that your children will believe sincerely that you did it wrong. No father is perfect and your children will be the first to find and point out your imperfections. Your children will be the most capable at knowing your lapses of judgement, your emotional buttons, your soft spots. Your children will see you fail and gleefully point it out, time and again for years after. After all, they see you from the moment they are born; they know you best of all.

I know that there will come a day when they will open their mouth to speak and my words will come out. They will be shocked at what they say and yet they will say it. With horror they will realize that not only did they say it, they meant it! Suddenly it will dawn on them that their father said these things for the same reasons they say them. At that point they too will realize that they are flawed humans with all the issues and challenges that their father had.

I know that they will love their children as I love mine, that they will work and strive and give up life in order that their children may do more, have more, be more. I know that they will commit countless hours and untold energy, both physical and emotional, to ensure their child has opportunity and support. I know that they will bear all pains, endure all sorrows, suffer all indignities just to be a good parent, to be a loving parent, to be the Mom or Dad they wish they had. I know that they don't know yet that what they have, nor what they will miss.

I miss my Dad. He was an imperfect man, as am I. He worked hard and did his best. He tried and he failed yet through all of it he picked up and kept going. I would not make my Dad's decisions; some of them still darken in the light of day. I would not live his life; it was his to live and not mine to judge. But I honoured my Father, I respected my Father, I cared for my Father, I loved my Father. I miss my Dad.

Alignment

Remember this. No matter how wise you are, not matter how witty you are, no matter how charming or wealthy you are, youth will always align with youth and age will always know better.

At Betty's Run for ALS, I saw a young man in a wheelchair and was reminded again that this disease is no respecter of age. Like cancer, it attacks regardless of youth. It does not align itself in particular with those of us past our prime. It is malevolent, seeking its victims where it can and taking them no matter. It was difficult to see such a young man facing such a difficult future.

Perhaps even more difficult was the look in his eyes. He could see us, the older patients, those further along and so different from him. He could see our loss of mobility, ability and strength. He could see his future and I could see his reaction played out like a movie on his face. There he was, surrounded by those who loved him, chattering with his youthful friends; there he was in his time of living, facing death, cold, mean, harsh. Fear is what I saw.

No amount of youth could save him from this disease. No alignment with his young friends could protect him from what ALS will do to him. His reality was painful and clear. His is the face of ALS that we should see, the face of a life yet to be lived. When we talk about ALS, we should talk about the young, those whose potential and possibility is so curtailed and cut by this brutality.

It is a general truism that when younger people get ALS, they live longer with the disease. While not a firm rule, it happens often enough except perhaps in cases of Familial ALS. So it is not enough that this young man has such a terrible condition, but he must bear it for so much longer until its ultimate end.

Nonetheless his challenge is the same as mine. His challenge is to live life as fully and completely as possible in the time he has, to live with ALS before he dies with it. In this, and only this, are we in alignment. Youth may align with youth, but living with ALS strips away the age barrier and forces us all to look into the same dark mirror. This is our alignment.

A Perfect Day

Katie has given me another card; there is one every Wednesday and one every Sunday. Some cards are easy; some are hard. Some I can respond to quickly; others take time, lots of time, to contemplate and consider before fingers hit keys and pulse out some kind of coherent response. It's hard to tell which ones will make me think a lot; this one did. She asked me to describe a "perfect day".

I can't. I don't think there is such a thing as a perfect day. I think all days have their moments of perfection, snatches of time and space where peace and contentment are solid and real, bits of perfection scattered like diamonds amidst the daily muck of life, flashes of grace and love, jewels in hand. Those are the perfect about which I can write.

My life has been blessed with a great many of these moments, most of them with my family, time with my children and wife, time with my Mom or Dad, time with those I love. These have been the moments of perfection that make a day stand out, that make all of a day seem perfect, perhaps even a whole life. These moments, these small bits of days, are so powerful that they mask over the detritus of the mundane and give lustre to life.

I remember so many things, watching the kids climb the banks up and down Cavendish Beach on PEI, letting them pick out souvenirs from a street vendor in Battery Park, buying them giant chocolate chip cookies at Cow Chip Cookies in Seattle, days on the boat and in the car or at the park or fishing by Rolley Lake; all this and more. There is so much perfection for me to remember that the movie theatre in my mind forever plays, and each moment is precious. When I lay down for my final rest, these are what will be with me, these moments of perfection.

If I have to pick one, then I pick a cold, dreary day in May, a day when the rain on the BC coast was so light as to be just past a fog and so dense as to reach through my weather gear and soak me to the skin. This day we were on our boat making our way south down Trincomali Channel with the high cliffs of Valdes Island to the east and the low, tree studded rocks of the De Courcy Islands to the west. It was mid-morning and we were clear of Gabriola Passage, headed for Clam Bay, intending to take The Cut between Thetis and Kuper Islands to spend the night at Thetis Island Marina in Telegraph Harbour.

I was on deck, tiller in hand, hunched over, shielding myself from the misty moistness of the morning. The kids were below, laughing and talking and being the energy that is young teen-hood. I had the deck, they had the cabin. The hatch was closed to keep the rain out. I slid it forward an inch and asked for a cup of tea. A cheerful voice said yes and a hidden hand closed the hatch once more against the mist. A few minutes later this disembodied hand reaches up from the bowels of below-deck, steaming cup held gingerly, forced upward, voiceless, rising from the depths. I'm still unsure whose hand it was and it doesn't really matter. Each of them is precious, a gift to me. I took the tea and the hidden hand once again closed the hatch against the dripping sky.

In all of this I was most content. The perfection of this time and place, this was my perfect day. It was all I could ask for, all I could want, and all there is for me. If I had another day, it would not be for me. It would be for the hidden hands below-deck, the laughter of young voices, the faith of children.

Another Clinic Day

I am tired this morning. Yesterday was ALS Clinic day and that wears me out. In addition yesterday was the first game of the Stanley Cup Playoff Series, a game between Boston and Chicago which went into triple overtime. First there was 60 minutes of regular time, then another 55 minutes of overtime before the Chicago Blackhawks finally brought the matter to a close. I suspect people are here more for Clinic day than the Boston/Chicago game results.

This clinic day was essentially the same as previous clinic days. There were visits from the neurology team, visits from the nutritionists and respirologist and physiotherapists and psychologist and lots of others. The whole session took from 12:30 PM until 5:00 PM, making for a very long afternoon. The end result was highly predicable.

Scores count, in hockey and ALS. The neurologist rated my ALS score at 34 while I had rated it at a 30. You might think this is good; it is neither good nor bad. When I was diagnosed the neurologist scored me at a 42 while I scored me at a 38. Both of us have registered an 8 point decline in my score over the last 7 months. We are hoping this slows down. Even with that hope we know for a fact that this disease will spread, and that spreading has begun.

We confirmed that ALS is moving into my Bulbar regions although it is very early days at this point. This means it is going after my tongue, throat and possibly my neck muscles. There are no early signs of activity in my neck muscles. The small loss of control on the left side of my tongue and the ongoing clearing of my throat are both indicators. I am also experiencing occasional pharyngeal muscle spasms, another Bulbar symptom. While the changes are sufficiently minute as to be unnoticed from the outside, except the for the throat clearing, these symptoms are nonetheless real and progressive.

We also confirmed that I am losing lung capacity and diaphragm strength. My lung capacity is down to 86%. Normal is considered anywhere between 120% and 80%, so I am in no real danger from lack of breathing strength. However considering I probably started at the 120% area, this is a substantial loss of volume. The inability to get sufficient air and the inability to expel moisture from my lungs is an indicator of how I will ultimately die from this disease. Pneumonia.

On the plus side my upper body continues to remain strong. My arms are stronger than most others so normal for others is somewhat less than my strength. We tested my hands, for example, and my grip strength beat the record for all other ALS patients and most of the clinic staff as well. So the clumsiness I am experiencing is more likely just the general exhaustion that goes with this disease.

The neurologist actually suggested that it was possible that my arms would never be affected. I might be able to type this blog right up until the day I get that final pneumonia.

ALS Inaction

My kitchen is a mess and I am frustrated. There are things that my son could easily do but "forgets" or doesn't think about doing., thinks like wiping down the counters to remove the sticky spills adhering to the countertops, things like putting away the empty wine bottles accumulating beside the sink or getting rid of his empty beer boxes when they are empty and not a week later. Mostly he leaves as much as he can for Rosa to do on Friday. "After all", he says, "we pay her to do this stuff."

I can't stand the mess or the smell of a dirty kitchen. He can, but I can't. I don't want to be continually asking him to do this stuff; it takes even more out of me some days than just putting up with the mess. He already stays in his room most of the time, playing online games. If I have to ask him to do something every time he comes out, eventually he will come out even less. As usual in life, if I want a clean kitchen I had better figure out how to clean it for myself. Or wait, as Ricky says, until Friday when Rosa comes, putting up with the smell and mess.

There are things I can do, and I do them as best I can. I can wipe down the counters; I did it this morning. It just takes a lot longer and a lot more energy. I can put away the wine bottles; after all, I did drink the wine. It just takes a lot longer and a lot more energy. I have a real issue with the dishwasher but I could probably figure out a way to empty, fill and start it. It just takes a lot longer and a lot more energy. I can put away the folded sheets that have been sitting on the couch since Monday. I can do most of this stuff.

The challenge is that a simple task for someone like a 22 year old boy, or most other people for that matter, is a massive task for me. Take the example of wiping the counter. I did it this morning because I could no longer stand the stickiness. First of all, all the dishcloths were dirty, so I dumped them into the sink in preparation for doing a load of dishcloths and tea towels in the laundry. I will do that later this morning.

Then I got a clean cloth from the end of the hallway. This exercise meant backing my wheelchair out of the kitchen. Fortunately this morning I had not transferred to my walker or else it would have meant using the walker to go the hallway distance and back, something I can no longer safely do, or transferring back to my wheelchair, a non-trivial task I assure you. So I backed out of the kitchen and wheeled down the carpeted hallway. Since I cannot turn around in the hallway while on the wheelchair, I then backed down the hallway, into the dining area, whereupon I turned again and went into the kitchen.

Before I would wipe the counters I had to remove as much as possible from them. This included some foodstuffs that needed to go into the cupboard, something I can only do if I stand from my wheelchair, something I can still do but something that takes a fair bit of effort and energy. So stand I did, and away went the can of beans and jar of steak spice.

The next step was clearing away the dirty dishes, some of them still remnant from my party on Sunday. Somehow, despite three days of dishwasher availability, there are still glasses needed cleaning. There are also pots and bowels that need a washing too. For now I just put them into the sink and I will ask Ricky to do another load of dishes later today.

After that comes the wine bottles. They need to be rinsed, have their labels and collars removed and then they need to be placed in a wine box and put in the hallway pantry. All of this was just too much for me this morning, so I just pushed them aside as best I could.

Finally, I could wipe the counters.

All of these steps are simple when you can walk and stand and lift and move. The tasks of daily living are trivial when you are not trapped in a wheelchair, losing your ability to stand, losing the strength in your arms, feeling the general exhaustion that I feel from when I awake to when I drift into sleep. For a healthy person, it's a task which takes a few minutes. For me, it takes about a half an hour. That's ALS in action, or rather ALS inaction.

I Miss My Dad; I Call My Mom Every Day

I miss my Dad. He died in September 2010, a few weeks before his 80 birthday.

I call my Mom every day, or as close to that as possible. When I am in a place I can't call, I email or use Facebook. And when I am in a place with none of these tools, neither telephone nor Internet, I know she knows I wish I could call.

The reason I call my Mom every day is because I know what it will be like for her when I die. It is unnatural and unfair for a parent to outlive a child. It is wrong, against the natural order of things. I may miss my Dad, but at least he left his life knowing that all of his children survived him. I am not sure my Mom will get that comfort, seeing a life fulfilled and a family complete.

One of my children chastised me recently, saying "How come you call your Mom every day, but not your children?" It's a fair question although a hard one to answer. There are so many complex reasons for the flow of this communication, reasons of responsibility and trust, reasons related to my divorce and the current battle between their Mother and I. As my brother Peter is wont to say, "The phone rings both ways."

Add all of this up, all this emotional stuff, and you get a complicated situation that seems unbreakable. Throughout my life I have worked hard at breaking through these complicated situations, being the one who reached past the barrier, being the one who gave up pride for family and responsibility, placing the needs of my family before my own needs. I have tried hard to "be the better person", given up so much in order to keep the bridges built and the doors open.

These days I am running out of emotional steam. I am no longer strong enough and, quite frankly, I am tired of having to do the reaching out. I am tired of having to do all the work. I know that it may seem selfish, yet here I am.

When I think of my Dad, I don't think of what I might have said. There are no things I wish I had asked him, no acts for which I had not forgiven him, no stories that I wanted to hear again. Before my Dad died, I had made my peace with him and come to see him simply as he was, the imperfect and perfect, the flawed and fascinating. Now, when I miss him, it is just him that I miss. It is not a sad, aching miss, but the kind of calm feeling that rests lightly. There is no pain in missing him, just a tinge of sadness that he is not here.

That is why I call my Mom. She has see me through my life and will most likely see me at the end of it. She deserves to feel that kind of missing, the one where there is no pain, just a tinge of sadness.

Going Bulbar

Some time ago I described ALS progression as a series of small changes that were almost unnoticable until they gained enough collective impact to be visible. Then things appear to stablize, even though they aren't really stable, until the small changes once again aggregate into something you can feel or see.

This is what happened with my legs. I have lower limb onset ALS, one of the slower moving types of ALS. Because of that the loss of my legs took a long time, almost two full years. It started with stumbling and clumsiness. Then one day it got bad enough that I needed  a cane to walk. From walking to needing a walker came next, rapidly followed by the need for a wheelchair full-time. All of this progressed slowly, inexorably, and completely. There was no stable period, no remission, just periods when the changes were minute enough so as not to be seen until there was something visible.

Of late, perhaps over the last couple of months, I have noticed that I have been having trouble with word formation, particularly with complex words requiring the full use of my tongue. The best example of this is the word "ability". I have been having increasing trouble with enunciation of this and similar words. In addition I have noticed the increasing need to clear my throat along with a sense of weakness in my soft palate. All of these things have been minor and could easily be attributed to other things, such as a persistent, low grade infection or virus.

Today things became a bit clearer. This morning, when I awoke, I found that I could no longer form a circle with my tongue inside my mouth, something I have always been able to do up until now. In addition the left side of my tongue feels heavy, out of sync with the right side. It feels fat.

After a while, when I had gotten out of bed and gotten mobile, I noticed that I seemed to have better control of the muscles in my tongue. I can make a tongue tube now. The feeling of heaviness, of clumsiness, is still there. It would appear that focus and energy will still help to some degree.

This is how it was with my legs. It started with intermittent issues, a feeling of clumsiness, a feeling of unexplained weakness. Then it got progressively worse. So I suspect this is how it will work with my tongue and throat too. These are the symptoms of Bulbar ALS. Almost all ALS patients get this. I am not unique nor is this particularly surprising. If I don't have it now, I will eventually.

I am going to the ALS clinic on Wednesday. I suspect they will confirm something I am fairly sure I already know. Bulbar ALS has a faster progression however it is more erratic and in some cases it can slow and even stop. It affects everyone differently even though it ultimately finishes what it starts. There is no way to predict the speed or order of symptoms, just the eventual outcome. I will lose my ability to speak, eat, swallow and breathe. The timing and order are uncertain but the events will occur.

Betty's Run Is Today!

Today is the day. Sunday, June 9th. It is the day of Betty's Run for ALS.

There are a lot of people supporting me today and we have raised about $8,000 so far with about another $1,000 in future pledge funds. These people are doing this because of me. I am continually amazed at the support I get.

Perversely, I have been feeling more and more depressed as this date grows closer and closer. My brother Peter says it is because I imbue events like this with some sort of significance; I make them into something important, a touchstone or passage marker. He is correct. That is what I do. And as I pass this marker, this event that signifies my disease, I get depressed.

It might be better to say I am sad more than anything. This run signifies the war, the collection of battles to fight ALS. The individuals with this disease represent the personal, intimate battles, and losses, of ALS. We, those of us in wheelchairs and walkers, are the targets of this pernicious enemey. We, those of use with failing arms, legs, lungs, and lips; we are the ones who will be lost in this war.

I am grateful for all my families offering me support today. My Mom and Dad, my brother Peter who is here and my other brothers who live far away, my son Ricky who is with me daily and my other children who also live far away, my Aunt Margaret, my many cousins; all these people and more are helping me in their own ways. I have my work family, many of whom will be out at the run today, braving the brisk spring weather, the clouds and chill rain that will inevitably fall. I have my social family, the many friends who have gather around me in this time of trial.

I am grateful for the medical community, my case manager, the researchers and doctors and nurses and therapists, all of whom are committing their life's work to waging this battle on my behalf. It is an incredible country we live in and an incredible time to live in it. For all this and more, I am grateful.

Now I feel guilty and foolish for feeling sad. But it doesn't change things. I am still sad.

Ask Me How I Am Feeling, Not How I Am Doing.

I must be tough for people to greet at times. I know it's tough on my end. They come up and say things like "How are you doing?' or "How's it going?". I know they are simply expressing the banal triviality that is feigned interest, at least some of them. There are many who are truly interested, yet even they must fear the response. I know that they are just looking for me to say something positive, like "Doin' well!" for "Fine."

Asking me how I am doing is dangerous. You might actually get a true answer. My condition has deteriorated. Last week I could lift my left leg just enough to pull myself into the passenger seat of my truck. This week I can't. Yesterday I noticed that standing up was just a bit more difficult that a few days ago. Last month I could turn over in bed without assistance. Now I need the hand-rail which I have had installed on my bed to help me complete the turn.

I could go on. There are a myriad number of small losses that I could describe. There a dozens of little things that I notice which you don't see. I feel the thickness in my throat, I hear the challenge of getting some of my words enunciated. I sense the loss of strength in my diaphragm as my voice grows softer when reaching the end of a lengthy sentence.

Every greeting that comes from me could be one of sadness, one of loss, one of diminishment. Beware, for when you ask me how I am doing, I might just tell you! The answer will always be that I am worse than the last time you saw me.

My sense of social grace suggests that most people really don't want to hear these things. What they want to hear is absolution, relieving them from the responsibility of hearing more about my suffering. I know this is true because I would do the same; no, I do the same. I am just like everyone else. I have enough of a burden to bear. I don't want to carry more.

Politeness demands "liteness". It's just the way it is. For me, the real answer is now, and will ever be until my death, the same. I am a little bit worse than yesterday and a little bit better than tomorrow. Each and every day is a step down the slope of ALS.

I don't want to live a life where I spread this gloom. I can carry my own burden although some days it is so much that I must unload some of it. I want people around me; they won't want to be around me if I am a constant dark, brooding cloud ready to hail down. So I smile and say "Fine".

Do me a favour. Next time you see me, don't ask how I am doing. Instead, ask how I am feeling. Most days I feel pretty good. That is something I can happily share, at least most times. Because most times I feel pretty good; I'm just not doing all that well.

Is Life Worth Living With ALS

Yesterday someone searching the web entered a search term on the Internet that brought them to my blog. The searcher entered "is life worth living with ALS" and ended up with me. I am not sure how they would feel after reading some of the more negative posts. On the other hand, I think my blog shows that life can be lived, and fully lived, with ALS.

It's a tough question when you really face it. At the end of this disease I will be fully crippled, unable to walk, talk, eat or even breathe without some sort of medical aid. I will be thin, wasted, drooling and weeping. It is a sad finish to an active life. So I understand the question more than the searcher would know.

The question is not "is life worth living with ALS?" The question is really "at what point in my ALS progression do I want my life to end?" Regardless of what happens along the way, ALS is fatal. ALS will kill you. Something kills each and every one of us. The challenge is not about dying, it's about living, something the searching implicitly knows simply in the phrasing of the question.

It is an issue of quality of life and the belief systems. Some belief systems reject suicide so completely that the issue of life being worth living is moot. They will live it until they die of something. For others who can allow for the act of seppuku or simply an overdose of Percoset, the option of ending life becomes more visceral and palpable. If quality of life is so bad that I cannot live it, then can I end it? More cogently, when is quality of life so poor that I want to end it?

That question has a highly personal and individual answer. For some, each day brings just enough to make us want to see the next day, whether we have ALS or not. For others, the day arrives when we conclude that the joy of seeing tomorrow does not make up for the pain of having to live through another night. When that day comes, perhaps life with ALS is not worth living. That is a thoroughly individual decision.

Perchance the best answer to the searcher is this. Whether or not life with ALS is worth living depends entirely on you. ALS is simply the way you are going to die. You decide how you are going to live. You decide what is quality in your life. You decide when enough is enough.

For me, life is worth living today. When it is no longer worth living then my life will end regardless of ALS. As long as the pain of staying is less than the pain of leaving, I will stay.

I Hope My Kids Know...

Last Christmas my daughter Kate gave me 52 cards with prompts for blog entries. Each Wednesday I open a card, think about it and write something. Yesterday's card said "I hope my kids know...".

I hope my daughter Kate knows how much each and every one of these cards means to me. Each of them is hand-written on a card that she has created using different card blanks, embellished with stickers and put in an individual envelope. It is an act of love, and I love it.

I hope my kids know how much I love them. Even as I write this I am on the edge of tears; my children mean that much to me. If you were to ask me at anytime over the last 30 years who I was, "a Dad" was always at the top of my list. My children have always been foremost on my mind. Whatever they have needed, I have been willing to give. Whenever they were in trouble, I was there. Whether joy or pain entered their life, I wanted to be part of it. I would give, and have given, my life for them. My children are the greatest thing that ever happened to me.

I hope my kids know the importance of forgiveness, to their family and to all those around them. We live in a complex world and things don't always go according to plan. We stumble, trip and fall. Those around us, those we trust, those we care about, they let us down. Anger comes between us and separates us. Forgiveness, both of self and of others, is the only way to get through the quicksand of emotions and back onto the solid ground of love.

I hope my kids know that all of life is built on love. Love is the only true emotion. Love, most powerfully expressed in the willingness to give, is the only way to build truly long lasting relationships. Love, the desire and need to care and cherish those about you beyond reason, without requirement or request, without regard to outcome or possessions or consequence, this is what makes life worth living.

I hope my kids know to be true to themselves first, to love themselves as the first step to loving others. It is a lesson I learned late in life, perhaps too late. To love yourself and to be true to yourself is to recognize your worth, your value, and to act in alignment with the things you believe. What you think is important; you matter; you count. To be true to yourself is to be who you are, not artificially bending to meet someones else's agenda or need, not adjusting views based on what others think or want, not suppressing what you believe or feel to "smooth things over". Love yourself; be true to who you are and bear the outcome, whatever it may be. Therein lies integrity.

I hope my kids know how much I need them, not just physically as I come to the end of my life, but emotionally and spiritually. I want them to know that every moment with them, from something as simple as tidying the house and shopping for groceries to those deeply connected emotional moments of tears and laughter, I need them in my life. I think about them every day.

I hope they know all this and more. Mostly I hope they know that I want them to be happy.

I Wish I Was Working

It's a late blog entry today. That shouldn't be too surprising; it was bound to happen sooner or later. So now we all know that I can go through a morning without writing. Next, can I go through a full day? I doubt it.

Today started off as a normal day, almost. I got up, got dressed, had my coffee then took my daughter Kate to the airport. She is returning to Toronto after coming to Calgary from Yellowknife. After dropping her off, I went to do a couple of minor errands; nothing special, just the kind of normal life activities we all do in our daily routine, except mine included stopping off at the wheelchair shop to ask about a couple of chair adjustments. As it turns out, I can adjust all kinds of stuff on this chair to suit my own needs, and change them as needed.

After the wheelchair stop, I gave my brother Peter a call and asked if he wanted to meet for coffee. He works at the CBE where I used to work. He had time so I dropped by. After a nice chat and coffee, I decided to drop in on some of my once co-workers. Drop in became visit, and visit became lunch, and suddenly I had been there for three hours.

It made me realize how much I miss my work. I loved what I did and felt honoured to be able to do the kind of work that impacted thousands of people on a daily basis. Dropping by today reminded me of what losing my career has meant. My work made me feel productive, like a contributor, like I made a difference. I miss the camaraderie, working with a team, solving problems and getting things done. I think the reason I have been travelling so much since leaving work is that I am afraid of this loss of routine and reinforcement. Not working gives me too much time and too little to think about, so I run away and get busy on the road.

I am not one of those people who finds their whole identity in their work. In fact it was well known to most of my friends and co-workers that I valued my personal life as much, if not more, than my work life. I believe in work/life balance, in the need to exist in activities outside of my career. Yet I loved my work enough that I really wish I could spend more time at the office. I wish I could have continued longer, worked more.

Work, especially good work, is fulfilling. I miss it.

New Wheelchair

I am going to get my new wheelchair in a few minutes. This new chair has a lighter frame, larger wheels, pneumatic tires and will be easier to push. This ease of motion becomes all the more important as my arms weaken and I lose my hand strength. The pneumatic tires will give better grip and the frame, while lighter, is actually stronger than the chair I have had for the last six months.

That's how long it has taken to arrange this new chair. In part this six month wait has been because of my application for government funding for the chair. That process took about three of those months. Ordering the chair took another month. The two months at the beginning were me, struggling with how to pay the $4,500 cost of this chair.

The government, in its infinite wisdom, has decided that I don't "qualify" for a chair of this quality. The assessment of Alberta Health is that I will not live long enough to realize the full benefits of a higher quality wheelchair. Some nameless, faceless bureaucrat in an office hundreds of miles away has decided what my quality of life is worth based on a longevity and utility chart. For the government that makes sense; for the individual it is an awful reality.

That's the thing about ALS; you live long enough to see yourself die a bit each day, but you live in steady decline with a statistical average life after diagnosis of less than three years. It's not long enough to write off the cost of a decent wheelchair, so the best the government will do is cover part of the cost of a clunky, heavy, hard to push temporary chair like the kind you see at hospitals.

So I ordered the new chair regardless of government funding and cost. I don't care how long I live; I care how I live in that time. Money is useless after I am dead; I am going to use what I have to improve the quality of my life in the here and now. Regardless of what that bureaucrat says, I think my quality of life is important regardless of duration. I want to live before I die.

Paying for this new wheelchair is a whole different story. I will figure that out. I always figure this stuff out.

Home and Children

I am back in Calgary having driven from Yellowknife to Calgary in only two days. Kate and I spent 12 hours a day for two days, driving my truck from the northernmost point of the Mckenzie Highway all the way down to Calgary, with a stop in Edmonton for Chinese food buffet with my brother Jim. It was a terrific drive and a wonderful time with Kate.

Travel is terrific, but being home is wonderful too. It was so relaxing to arrive here and sit in my black chair. It is calming, soothing and safe to be at home. What's even better is that my daughter Meaghan is here too. That means three of my four children are with me today; it's a wonderful day.

The sisters are going to spend the day together, perhaps shopping or visiting the Glenbow Museum. Their time together is all the more special given that Kate hasn't seen Meaghan since last Christmas. It's good to see them together and I love listening to them chatter. It reminds me of when they were teenagers, those days when all my children and all their friends were hanging around our house. The noise and boisterous laughter is wonderful to remember.

I love being a Dad; I have always loved being a Dad. I am still a Dad and I will be until the day I die. I don't mean being a  father. Any male with the right working parts can be a father. I like the Dad part, building lives and memories with my children, seeing them through childhood and into adulthood, helping on their journey, sharing that triumphs and supporting them through failures. I loved, and still love, having children.

One of the toughest things about the changes in my life over the last couple of years has been the loss of this regular interaction with them. I have four children and they have been one of the best things in my life. Ricky is around and I am so grateful for him. Kate is coming to Calgary after the summer and that will mean a lot to me. Having Meaghan and Mary visit more often would be even more wonderful.

I love having my kids around me. It's such a good thing.

ALS And Appetite

I am hungry this morning; that's a good thing. My calorie intake yesterday was about 2,000 calories; not enough, so maybe that is why I want to eat this morning.

Appetite is a major issue for most ALS patients, especially late in their disease cycle. The loss of appetite is also an indicator for ALS. Patients often report losing weight without really trying along with an unwillingness to eat. Some of this weight loss is simple to explain; we lose weight because of muscle wasting. But in almost all documentation, patients with ALS lose more weight than that represented by muscle wasting. With almost all ALS patients, maintaining weight seems to be a major challenge.

My weight challenges were quite the reverse back in 2011. That summer I weighed 255 pounds and perhaps more; I was fat, very fat. Then I had the accident with the motor and I thought to myself, this would not have happened had I been in better shape, and that included my excess weigh. So I went on a diet, reducing my caloric intake and shifting away from foods that triggered the fat storage system in my body. It was a kind of "paleo" diet with more emphasis on fresh fruits and vegetables and the complete elimination of breads and other sugary, carbohydrate loaded foods.

With this new regime, I found it very easy to eat less and the weight started coming off in a hurry; I thought my stomach was shrinking due to my diet. I dropped fairly rapidly from 255 pounds, or perhaps more, down to 215 pounds. After a slight rebound I settled in at 220 pounds in the fall of 2011. Then came 2012 and my drive to get my weight down to 200 pounds. The problem, however, was that I was finding myself less able to walk, less able to do the physical activity that had been the hallmark of my life so far.

Then in November of 2012, I was diagnosed with ALS. Part of that diagnosis was something called cachexia. Cachexia is a wasting syndrome with loss of weight, muscle atrophy, fatigue, weakness, and significant loss of appetite in someone who is not actively trying to lose weight. In other words my weight loss may have had nothing to do with my diet and exercise, and everything to do with ALS!

Given that frustrating assessment along with the potential ongoing effects of this stupid illness, I said to hell with the diet. I started to eat and drink whatever I wanted, whenever I wanted. This rebound had a fairly immediate impact on my weight; I gained back 20 pounds almost immediately however I am now losing weight again despite efforts to eat. It's a good thing I am in a wheelchair because my pants slump down when ever I stand up. I need a new belt.

This whole appetite issues is well covered in a recent study entitled "Severe Loss of Appetite in Amyotrophic Lateral Sclerosis Patients: Online Self-Assessment Study". This study looks into the eating challenge for ALS patients. Its principal finding was that "reduced appetite is a common ALS-associated symptom which may impair the individual capacity to maintain adequate nutrition."

The reasons for loss of appetite are still largely unknown despite this and other research, especially weight loss in the early stages of ALS. Certainly muscle wasting is part of it but the incidence of weight loss and amount of weight lost surpasses that which can be explained by loss of muscle. One factor in later stages suggests that loss of appetite is more likely due to dyspnea, the loss of breathing capacity and diaphragm strength. Early satiation when eating is also likely related to loss of diaphragm strength but there are some suggestions it may also have something to do with an immunological response triggered when an ALS patient eats.

What all this means is that when I say I am full, I mean I feel full even though I still have room in my stomach and still need to eat. Basic calorie requirement for someone my size with the kind of physical activity I used to undertake is about 2,500 calories a day. With my reduced activity levels, now it is around 2,200 calories a day, perhaps a bit less. When you consider the increased metabolic rate that comes from ALS and the cachexia, the nutritionists recommend a higher caloric intake. In addition begin overweight right now will be a benefit when I can no longer eat.

Consider my daily eating pattern. I have breakfast, often something as simple as toast and coffee or perhaps, when I am on the road, a Tim Horton's or McDonald's breakfast sandwich. That's about 500 calories. I am usually just not hungry at lunch. Breakfast typically does me until supper where I have to eat something in the order of 2,000 calories to get to my daily minimum. That's dinner plus a second helping. For those of you who say I should just eat more during the day, I just don't feel hungry; I just don't want to eat.

So after that first bite, even though I feel full, I continue to eat. I know I have to take in 2,000 to 2,500 calories a day. Some days that is a long order. Other days it is easier. I recommend a beer and nacho diet. It seems to be working for me.

Yellowknife

I don't have a bucket list. My life has already been filled with so many amazing adventures; tips to far away lands, sailing on the open sea, hunting big game and having it hunt me back, so much more. The most exciting things in my life have been those things I shared with my family, those adventures with my wife and children, those experiences I shared with people I love.

Coming the Yellowknife is one of those experiences, one driven not by any particular desire on my part, but instead by a desire to see my daughter Kate. I didn't have to come up north again; I've seen the north of Canada, driven through the vast tracts of wilderness and scrub pine, meandered over gravel highways with nothing for hundreds of miles but the occasional "fort" village.

Yet now that I have done the Mackenzie Highway, I have another adventure on my list, another unique experience that most Canadians never have. I have now driven both of Canada's major northerly highways, the Dempster from Dawson to Inuvik, and the Mackenzie from Grimshaw to Yellowknife.

As with many things in life, these highways are similar yet different. The Mackenzie is paved; the Dempster is gravel. The Mackenzie is more southerly; the Dempster crosses the Arctic Circle and almost reaches the Beaufort Sea. The Mackenzie Highway rarely rises up, staying flat and easy the whole way, while the Dempster Highway snakes up through the Richardson Range, crossing the Continental Divide three times on its way.

Yet both of them are recent roads, put in the serve the mineral wealth of the north. Both of them are long stretches of straight through empty regions of nothing. Both of them take you through the experience of the incredible shrinking forest where trees get smaller and thinner until they are mere sticks in the muskeg. Both of them run through that muskeg and end up with cities on rocky promontories, high above the local waterway. Both of them cross the mighty Mackenzie River, that thoroughfare of the north, ice road in winter, barge route in summer.

Spring is short here in the north. One month ago, planes were still landing on the frozen surface of Great Slave Lake and the ice roads of the north were still busy with semis hauling gear in and out of mines in the far north. Now, just four weeks later, the lake is clear with only a few spots of surface ice, the muskeg is melted and there is almost no snow to be seen. Float planes and small boats are tied up in this arm of the lake. The weather is warm and the sky is clear.

Summer will be two months of intense heat and 24 hour sunshine. It may rain, in fact it probably will rain, but only a little. The mosquitoes have hatched and are beginning their annual vampire fest. The bison are shedding their winter fur yet already their next winter coat is starting beneath a mangy outer layer. The snows will return to the north in September. The ice will form in October. The ice roads will open in December.

Life has a different rhythm up here, an intensity of activity in the short summers followed by rugged survival in the winter. As one local says, "It's one month of heaven and eleven months of hell." But it's not hard to see why they stay. The beauty, vibrancy and life here is palpable. I love the north.