An Approach To Living

We are all dying; some of us slowly and some of us more quickly. It is sad that many of us are so focused on the petty struggles of the day that we forget to live. There are many amongst us who live as if they were the walking dead, marching though life focused on the wrong things, forgetting to treasure life, forgetting to extract every moment of joy from whatever it is that life has given. I am taking an approach to living, not dying. I want to live before I die.

This is more for my children than anyone else. It is just a part of what I want them to take as lessons from my life, as a view of my view. So here goes.

Never ever give up. I stole this line from a cancer victim, Jesse Rees. You are going to wake up each morning, until you don't. Along the way life will present challenges and joys. Treasure the joys, solve the challenges, and never, ever, ever quit. When you quit trying, you start dying.

Live life fully. Don't set aside treasures and pleasures for some future day that may never come. Burn the candles, use the nice sheets, wear the fancy clothes. Don't save it for a special occasion. Today is special. Each day will only happen once, and when the days are done, there are no more. Find the joy in each and every one of them.

No matter how you feel, get up, dress up and show up. Life is run by those who show up. The biggest part of success is in showing up. Show up for your life, be there, participate in it. Don't be a spectator in life's journey, don't be an emotional tourist. Get up and take part. Be purposeful, be enthusiastic; show up!

Live strategically. Ask yourself where you want to be and do the things you need to do to get there. Continually ask yourself what you want and where you want to go. Then act in accordance with that. Plan, plan, and plan some more; then, when things happen, go with the flow and work with your plan. In other words, be purposeful in your actions and always act in alignment with your life goals.

It's never too late to be happy. It’s up to you. Nobody else will make you happy. No things, possessions, drugs, distractions; happiness will not come from these outside things. It must come from within you. If you are unhappy, make the changes necessary to be happy. Seek it actively in yourself; look for those things inside yourself and change them. Rid yourself of those things that cause you to be unhappy. Suffer willingly the consequences of those changes, for when you point the ship of your life to a place that makes you happy, it's worth it.

When in doubt, throw a party. No matter how broke you are, you can always share the treasure of good company and good friends. Parties don't have to be costly; potlucks with people you enjoy are the best kind of parties. Some days are natural celebrations and when those days are not today, invent a celebration. Celebrate something, anything; celebrate the day of the week, watch a show or a game together on TV, play cards, tell stories, laugh.

I Worry

I worry about a lot of things. After all, I am an expert worrier; it's probably my best skill, or worst personal trait. You choose. Regardless, I think it is fair to say I have a few new things to worry about these days.

When I went to trivia last night, I had a bit more trouble getting into the room where we play. It has a couple of steps down; I can still do that. It was going back up that worried me. I made it, thanks to help from good friends and my son. I worry about next time and how I will get to trivia when my legs fail completely as they are bound to do. I am almost there already. What will I do? How will I get into the trivia room?

As we went through trivia I found myself getting tired, something that has never happened before. Usually I am energized by my friends and by the game. Last night I found things making me want to go home early. In fact for the first time ever, I paid my bill before the evening ended and was probably the first one out. I worry that I am losing strength and energy, and what will happen when I don't have the energy to go out and have fun. Is ALS making me tired too? Is this a part of my general weakness? Should I just give up on going out to trivia night?

This morning I woke up at 5:00 AM. After getting up to go to the bathroom, I made my way back into bed. I couldn't sleep. I had begun to think about what was going to happen when I couldn't get out of bed by myself and couldn't get to the bathroom at 5:00 AM. Maybe the lack of sleep is what is making me tired. Then I started to think about what will happen when my arms fail me and I cannot raise myself up and down. How will I get in and out of bed, or on and off the toilet? Will I be able to do it with a wheelchair? What about when I can no longer even do that?

So I got up and started some Lamb Shanks in the slow cooker. I have company coming over tonight. Four lamb shanks with red wine, a bit of onion and garlic and some diced carrots, all spiced with some peppercorns and a bit of Arab spice blend (it's like a curry blend). Then I started worrying about what I was going to do when I couldn't cook or entertain any more. I love to cook and I love to entertain. Will my friends want to hang about with a wheelchair bound lump? How will I eat? Who will feed me?

Then I thought about a woman and a relationship, a whole new world of worry. You don't have to have ALS to worry about women and relationships. I think that's enough for one day.

Who The Heck...?

I have said that this disease is a series of small losses, and the odd big one. Well, that's true, but sometimes the losses have nothing to do with the disease and everything to do with my own self. Yesterday I drove to work; I can still drive and I treasure that freedom. So I got into my truck, picked up my brother on the way to the office, drove through downtown and into the parking garage at work.

Once there, I parked and got out of my truck. Using the side of the truck to steady myself, I unloaded my wheelchair. It was then that I noticed that my wheelchair cushion was on the other side of the back seat of the truck. So I grabbed my cane from the front seat and used it to pull the cushion across the back seat of the truck and over to where I was setting up my wheelchair.

And that's the last time I can remember seeing my cane.

How the hell do you lose a cane? I mean, it's an essential piece of my personal gear. I cannot walk without it. It is something that has become a critical part of my mobility. So what the heck did I do with it?

I didn't notice this misplacement until the end of the day when I drove home. Perhaps it is a function of where I am with the wheelchair these days. I no longer use my cane at the office; I wheel everywhere these days. I no longer walk to the washroom or the coffee shop; it's simply too far. Nor do I use the cane to get out of my wheelchair during the day; I just stand up and stretch without walking. Without the chair it's just too much. The only thing I really use the cane for in the office is as a lance to punch the door opener buttons while riding my chair like a steed, a knight of ancient days tilting at windmills.

I didn't even notice the loss when I got into the truck. I noticed right away that I had left my cell phones (yes, I have two of them) on my desk. I didn't notice as my brother went up to get my phones and I sat there in the building garage awaiting his return. I didn't notice on the drive home or when I dropped my brother off at his place.

In the end, I finally noticed my missing cane when I went to get out of the truck after parking in the garage in my apartment building. Then, as I went to get out, where I actually use my cane to get from the truck to my apartment, I suddenly found myself caneless.

What to do? What to do? I called my son on his cell phone and asked him to bring my walker down to me. I don't like to use the walker outside the kitchen in my apartment. I don't trust that thing; it moves faster than I do and sometimes I find myself moving too quickly in spite of myself. So, walker in front of me and Ricky beside me, I made my way up to my apartment.

Getting around inside the apartment was a hassle. Rick and I decided to wait until today at work to see if I could find my cane. He is going to walk me down to the truck this morning and return my walker once I am firmly ensconced in my truck. When I get to work I will see if I had it at my desk and simply forgot it there. If, somehow, some way, I left it somewhere, never to be found again, I guess I will have to buy a new cane.

Who the heck loses a cane?

Love and Marriage

It may seem hypocritical to some, given that I have recently ended a 32 year marriage, but I wanted to share a few thoughts about how I view relationships and marriage. There are some who would contend I don't know about keeping a marriage together; there are others who recognize the challenge of keeping a marriage together for all those years.

It's interesting how we view marriage success. If I could have held my marriage together for a few more years, I would have left my ex-wife a widow instead of a divorcee. Many would have seen the marriage as a success. After all, it would have been until "death do you part". It's as if the only true measure of marriage success is duration, quantity over quality. That's kind of sad.

Marriage starts with relationship, one based in love. Love and life is complicated. It's messy. It's confusing. It can be easy and it can be hard and it can be all of these things at the same time. It takes two and while it can be strong it can also be fragile. It needs to be nurtured and at the same time it needs to grow naturally. It needs passion and it needs calm. It can be wonderful and it can be fraught with pain. It needs patience and care, kindness and consideration, honesty and openness.

I have always felt that love should be enough; if you really loved someone you would put all your efforts into supporting them and making a life together, one that was worth living. In my mind, that life would be one where the needs of the other person would be first in my mind, where my first thought would be of what I could do to support and uphold my life partner and vice versa.

Part of the problem is with that word "partner". It's really a business term. A partner is someone with whom you share business and financial goals, but you don't necessarily have to work together to accomplish those goals. What I want in a relationship is an ally.

Allies fight for each other, allies share resources and work together to win at life's battles. Allies join those battles on each other's behalf, fighting together, in one another's stead, protecting each other. I don't just want a partner; I want an ally, someone for whom my first thought would be how to defend and uphold that person, someone by whose side I would fight and who would fight for me first, someone whom I would put before any and everyone else, someone whom I would have at the top of my list and who would stay at the top of my list no matter who or what else was on that list. And I would want someone who would willingly and earnestly do the same for me.

Loving someone should be a gift freely given, something with no strings, with an open heart and hand. The heart will carry the spirit and the hand will share the burdens of life. That open-hearted willingness knows its boundaries and limits, but they apply to self, not the other person. In other words, if I love someone, I don't set their boundaries or limits; I respect them in others and trust in the love of the other person to respect them in me.

If someone says they love me, it means they accept me as I am, where I am for who I am. They respect my thoughts and feelings. They may not like some things about me sometimes, but they accept me as a whole person, they way I am, without change. If someone says "I love you" but insists I do things their way or think like they do, what they are really saying is "I love you with conditions." That's not love, that's control. Love has no conditions.

The real challenge is in marriage. It is the art of concessions and cooperation, the willingness to see the other person's view and love them even when you disagree with them. Marriage is the willingness to suspend my own needs to meet another person's needs. That's hard to do and it has to go both ways; both people have to love one another enough to give freedom as a gift. Marriage is not getting control, it's losing it willingly.

It is unlikely that I will ever have the opportunity to marry again. It's too bad; I would like to think I could have done a better job the second time round.

Sunday Drive

I am going to go for a drive today, a typical Sunday drive. For most people this isn't much. For me, it is exciting, a reminder of that which I can still do. I am not going far, perhaps just around town. I'm just going to get out of my apartment for a while, drive somewhere, perhaps do a bit of shopping, and then come back.

Sometimes the most ordinary things are the most exciting. It is such a terrible thing when healthy people complain about the smallest of incursions into their life, the little infractions that seem so big to them. I used to complain about the stuff I "had to do". Now I am limited and all those things that I cannot do are gone. What remains can still be exciting, if ordinary.

To take great joy in the ordinary, in the smallest of things; this is the gift of a calm, spirit-filled mind. I struggle at times with the anger and frustration of this disease. Yes if I can only put aside my anger, step away from the internal demand to understand why, that frustration disappears and I become whole again.

A typical Sunday drive, perhaps for an hour or two; that is what I will do today.

Saturday Morning

It's Saturday morning, the best morning of the whole week. I remember as a kid the joys of Saturday morning, hanging around in pajamas and watching Saturday Morning CBS Cartooniverse! I can still hear the jingle in my head. Some things just stay with you.

Saturday mornings were just the beginnings of a day with tremendous possibilities. We might go exploring the creek and gully at the end of our street. We might go fishing in Trout Lake or maybe even all the way down to Stanley Park. We might steal a buggy from Safeway and make a go-cart, careening down the hill towards the deadly traffic below. We might to all of these things, but first came Hercules, and Superman, and The Roadrunner, and Bugs Bunny.

Saturday mornings were breakfast cereal and laughter, brothers and friends, jumping on the bed, jumping down the stairs; we never walked anywhere if we could jump or run. After all, Saturday mornings had boundless energy. Come Monday we would slag and slough our way to school, and even Sunday had responsibilities like church, although not often for us, and going to our grandparents, something we loved to do. Saturday was the only day, our only day, and Saturday morning especially, where freedom reigned in our life.

I still love Saturday mornings even though I don't have cartoons on these days. I love that sense of freedom, the allure of things to do and places to go without restriction of time or work or responsibility. I love the innate possibilities that lie within this unbound time and space, the chance that something fun and interesting might be out there waiting for me.

Every day is like this in it's own way. Each morning is the beginning of something new, something unusual. Each morning has within it the promise of adventure, the promise of treasure. Saturday carries the best of it because I know that I can shape that adventure and grasp the treasure of this time without constraint or commandment. I can just do what I want on Saturday morning.

Now what is it that I want to do?

Another Turning Point

I am pretty much wheelchair bound these days. Even the least little walk is a challenge. This morning I stumbled walking from my bedroom to the kitchen in my apartment. I didn't fall, thank goodness. I had toe-drop real bad and stubbed my toe on the carpet. I caught myself with my cane.

What I noticed, when I finally got to the kitchen, is that I was skakier than usual. Over the last few months I have become consistently unsteady on my feet, shaking in my knees, weaker and weaker in my legs, using the counter or my cane or something for balance. This time it was different; I felt weaker, emphasis on felt. Up until now I am sure I was weak, I can prove it. But I resisted "feeling" weak. Not so this morning.

I don't think I can do stairs anymore. Given the weakness I feel in my legs and my inability to lift my feet more than an inch or two, stairs are beginning to look like just too much to do. Up until now my right leg was strong enough to make up for the loss of my left leg. I would use the stair rail and pull myself up a set of stairs. I can probably still do a couple of stairs, but more than that seems like a mountain. And any high step is out of the question.

Last October I could walk out the front door, down the stairs and onto the bus in front of my building. No more. Now I only leave the apartment by truck; I have no walking mobility and there is no wheelchair access out of the front door of my building. Up until now I have kept the wheelchair in my truck, using it only when I left the apartment. This new loss means I will have to use my wheelchair to get from my apartment to my truck, and vice versa.

This is a big deal to me. It means my wheelchair will now be a permanent part of my apartment. It will serve as a constant reminder to what I have lost. It will mock me, laughing at my weakness. I work hard to maintain my freedom and independence. Some will say my wheelchair will help with that; in practical terms they are correct. In emotional terms, it is more challenging.

I am still going to try to use my cane and walker in the apartment. I want to avoid spending my whole day sitting in my wheelchair. I want to feel like I can still stand up, still move about, still be active. This is changing my life but I don't have to give up or give in. I can, and will, work hard to keep going, to keep alive.

Nonetheless, my world is getting smaller. It is another turning point.

Anger

WARNING - THIS POST CONTAINS LANGUAGE THAT SOME MAY FIND OFFENSIVE. IF YOU ARE OFFENDED BY CERTAIN WORDS, PLEASE DON'T READ THIS BLOG ENTRY.

Sometimes I get really angry about the way my life has turned out; it's a mess.

I am 57 years old, in the midst of a nasty divorce, without a long term relationship and on the road to death. It's not a pretty picture. I did all the right things. I followed the rules. I was responsible, I paid my taxes, I worked hard, I raised my family. As a reward I get to die alone with this fucking disease.

I am angry at myself and my bad timing. Eleven months after having left my wife of 32 years I discovered I had ALS. It is undoubted that I was unhappy in my marriage. It had been an unhappy marriage for more than a decade. Oh sure, there were times of happiness and even moments of passion and excitement. These moments were brief and were ultimately outstripped by fighting and arguing. I had to leave.

My ex-wife has now demanded legal proof that I am dying from ALS, a report from the doctors and lawyers that will cost over $1,200. Not only am I dying from ALS but now I have to prove it in court with an expensive medico-legal report. My doctor tells me that the normal medical report would be free. I am angry about this too.

The problem is that having left, I expected to have a few years to go through the normal stuff at which point I would end up finding someone with whom I could build a new tomorrow, someone whom I could grow old with. I was supposed to have time to learn, grow and meet someone. Now this awful disease is stealing that future from me. So not only is my past a mess, my future is all fucked up too.

I am angry at the unfairness of this damned disease. I am angry at the loss of my life and future. I am angry that I don't get to have the happy ending; I don't even get a shot at the happy ending. I am angry that others get to go on with their future while my life freezes in place, locked in the stone of the implacable outcome of ALS.

I am angry at other people; they get to be happy and I don't. Others can make plans for their retirement and I won't get one. Others can imagine the lives of their children and grandchildren; that imagination has been destroyed for me. Others can imagine the porch and the rocking chair; all I get to imagine is the time when I can no longer walk, talk or breath. My future is measured in months, my days in minutes and my minutes are short.

This anger is so deep that it is almost unimaginable. There is no place for it to go. There is no balm for this anger. It springs out at the least provocation. Even Job had the hope of a better tomorrow. My tomorrow, and each one that follows it, will not be better. Each tomorrow will be slightly, incrementally and unerringly worse. Each tomorrow will have a little less in it, until there are no more tomorrows.

I am angry. I have a right to be angry. I've been robbed of hope, of dreams, of possibilities. I've been robbed of my tomorrows. My day is short and my sunset is dark, pointless, meaningless. It is the worst emotional pain you can imagine and yet I am compelled to bear it. I am expected to put aside that anger and to show grace and goodness.

Who the hell made up these stupid fucking rules?

Best Friends

For Christmas my daughter, Kate, gave me two wooden boxes, each with 52 sealed cards. One box is for Sunday; it contains meditations, scripture verses or motivational notes. The other box contains "prompts" for things to write about. This Wednesday's prompt is about friends.

As a child, my family moved about a fair bit. When my parents were married, my Dad was in the Navy and we moved every year or two, due to postings and other family changes. After my parents split up, we continued to move about. So I learned to make friends easily; sadly, I learned to leave them easily too. Yet all through this, if you asked me who I did stuff with, who I turned to in trouble or need, who impacted my life on a daily basis, it would be my brothers far more than anything else.

This does not mean I do not have terrific friends; I do. David and Elizabeth were there when I got the diagnosis. They felt the physical brunt of the first uttering of that dreaded phrase "you have ALS". My greatest companions and supporters, outside of my brothers, are Chris and Chris. Yes, my two best friends are both named Chris, and they are both English (well, mostly); it's coincidence, not convenience. I called them right after I called my brothers.

I had some terrific friends as a child living in east Vancouver. Corey Wardrop and Jackie Wolff made up the other two of our Three Musketeer set in grades 4, 5 and 6. We hung around together, came to each other's houses, knew each others parents, and had great fun exploring. But when I wanted to go beyond the neighbourhood, I went with my big brother.

In my teenage years the person I was with the most was my brother Peter. We spent countless hours hanging around with other friends and each other. My younger brothers, Jim and Matthew, ever present in my life, added to the general cacaphony of our family life together. Sure I had friends; they didn't last in memory as have my brothers. Ask Matthew about the fish tank and the hockey stick. Ask Jim about my ax. Ask Peter about ashtrays. Ask Adam about fishing in Stanley Park.

To this day I turn to the four men who have been with me my whole life. To this day, when I need help I call them. They were the first I turned to when diagnosed. I know this may distress my children; I think they wanted me to turn to them first. My brothers were there before my wife, before my children, before my friends. My brothers were, are, and always will be there.

I hope my friends will forgive me my indulgence. They are great friends. But my best friends are my brothers; Robert Adam McBride, Peter Hale McBride, James Andrew McBride, Matthew Gordon McBride. They are now, they always have been. Some days I just didn't know it. I do now.

At Sea

I am at sea. I watch the sunset glittering over the surface, air sighing at the end of day, wind easing itself into night. All about me smells of salt and seaweed, splash and mist, sea and sky. My boat drifts along, holding its head steady against the light breeze that fills the main and fore. The lines grab and the sheets strain as the sails capture the air. The upper luff snaps and holds, the lower main bulges and billows.

I am at sea. A whale blows a mist nearby, bursting the surface, steaming the air and rumbling. Salmon are jumping and seals swim by, staring at me wondering what I am doing in their home. Eagles soar overhead, watching the surface of the sea for something swimming shallow enough for them to snatch up and eat. Sea lions bark in the distance; I can smell their odor drifting on the light breeze.

I am at sea. This is the place I go when I am in my chair, motionless, quiet and still. This is the place in my mind that keeps me alive. This is the memory, the joy, the contentment. Many days I spent on board, each of them a wonder and renewal, each of them a gift, a reward. I am at sea even when on land, trapped in a failing body, stuck in a life that loses something each day.

I am at sea. It is important for me to keep my mind alive. It is all I have. It is the place I live. My mind is active as my body fails me. My mind works when my fingers, my feet, my legs, my arms, and even my lungs fail me. My mind keeps me active when my body keeps me still. When I stop living inside my head, I stop living outside of it.

I am at sea. This is not a dream. This was not a dream. I lived a life once. I explored my world. I wandered. I experienced. I still do; this kind of life is a new experience. This new life means I spend more time inside myself, considering and thinking, wondering and contemplating. Having a body that works means you can avoid these things. In some ways having my body fail me brings me ever more awareness of what is different now.

I think about those differences. If you see me looking off somewhere and ask what I am thinking about, I may say "nothing" but you can rest assured I am on my boat. I am at sea.

Mornings

This morning I awoke early. My knee was hurting and couldn't get back to sleep. Plus I had to pee. Getting out of bed is difficult these days, even more now that I have trouble standing up. It takes a while and first thing in the day it's not an easy task. I managed to get into the bathroom and, after the requisite ablutions, worked my way into the shower.

Sitting while taking a shower is another struggle I now face; it's difficult enough that some days I simply skip it altogether. I have to start sitting on my toilet seat, then I slide over to the edge of the tub, and after lifting my legs in I slide over onto the shower seat. On the road this exercise can be made all the more difficult with toilet seats a long way from the tub. Then I have to work out some other support system to get myself up and down from the chair.

My morning shower is not as relaxing as I would like it; I am going to shift to showering in the evenings before bed. At home I try to manipulate the hand held shower unit while soaping down my body which leaves parts of me half done and parts overly wet, with soap slapped on as best can be. Scrubbing down while seated is not as easy as you would think.

Showering on the road, with a fixed shower head can be even more challenging as I try to wet the parts of me blocked from the water by my own body. I am thankful for the drain holes in the chair, and even more grateful that my brother was kind enough to buy a shower chair just for this visit. Without the chair there would be no shower option at all!

Shampooing is even more exciting, never knowing for sure if it is all out of my hair, what hair I have left. Then getting out, the reverse of getting in, is made all the more interesting by trying to position my towel on the toilet seat so I can sit on it and dry as much of me as I can reach while seated. I push myself up using the edge of the chair and tub as a launch point. I can see the time coming when that won't do it anymore and I will need to use my "transfer chair" to get from the shower to my wheelchair. It's another change.

Dressing, once a simple thing, takes longer now, starting with the work of getting my clothes out of my dresser, or in this case my suitcase. You would think that would be easy. Not so. At home, by the time I reach the dresser I have walked all the way from the bathroom. I have to sit down. The drawers are about 6 inches farther than I can reach, so if I want clean underwear I have to stand again. So I quickly get up and grab a pair, then sit for a moment before going to get pants and a shirt, another quick up and down process.

On the road the walk from the shower to the bed is about the same as it is at home. Instead of reaching for the dresser, I reach for the suitcase. Everything is in a jumble, so I have to sort and shift my clothing to get at what I want. Then comes shirts in the closet. I dress myself while seated. It just works better that way.

When it comes to getting dressed, putting on underwear is the first and biggest challenge. I can't stand up to do it, nor can I manipulate my legs into them. Instead I bend down and drag them over one foot and shake them to get them past my toes. It takes a while to get my weakest leg into them. The stronger leg, with slightly more control, is a bit easier.

Since the muscles in my upper legs are now completely dead, I lift my legs up across one another, one at a time, and put on my socks. This can be tough since my toes lack the strength to straighten the socks. Fortunately time and what I pass off as walking will generally resolve this situation.

Pants are not so much difficulty. I lift my feet into them and, while seated, pull them up as much as I can. Then I work myself into a standing position and finish the job. Shirts are the easiest. My upper body works well, so I just put on a shirt the same way I always have, sloppily.

Now I am dressed and ready to face the day. The only remaining effort of my morning habilitation is getting my shoes on. For my right foot, I can still wiggle my toes enough to slide my shoe on. For my left foot it usually takes both hands pushing on my ankle to force my foot into my shoe.

Once this effort is complete, I get up and go, just like the rest of you.

That Sinking Feeling

Last night I dreamed that my boat sunk. It's not the first time I have had this dream. I've had it a few times lately with variations each time. In the end, my boat is always underwater, sometimes shallow, sometimes deep, sometimes recoverable, sometimes beyond all hope of recovery. Sometimes we pull it out of the water, sometimes the dream ends there; last night we pulled it out and talked about buying a new boat. Always the boat sinks.

I am a sailor. I love the sea. I have a 27 foot Catalina, an older boat, that I keep in Horseshoe Bay in BC. In my life before ALS I would look forward to being on board at least once a month in the winter, for a week during the spring, and for the whole of the summer. I looked forward to being on board, to feeling the wind and smelling the ocean, hearing the sounds of the sea and the noise of my boat. It's more of a challenge now; I can no longer get on board alone, nor can I handle the foredeck work or heavy lifting.

The ocean calls me constantly. I am at peace there. Every day I think about the sea and the shore. There is not a day goes by but I don't wonder. I love the skeeling of the gulls, the hiss of water by the hull, the burst of whale spout, the leap of dolphins. The sea is life, leaping out, frothing, foaming, heaving, seething. The sea is life, calm, serene, quiet, breathing. The sea is life, full and rich.

It almost makes no sense to wonder about my dream. My boat really is sinking. Slowing the sea of this disease will envelope me. Slowly I will descend into its depths. More directly, I will lose my boat and my life on the sea. I can see it coming, just another change in my life. I am curious about those dreams were we raise the ship up, where I talk about buying a new boat. Is this hope in my dream?

I am considering moving back to the sea, back to where, if I cannot sail it at least I can smell, see and feel it. I am torn. My friends, my work, my daily life is all in Calgary. The ocean is not. I would like to spend more time on my boat before I lose it altogether, before it sinks beneath the briny, black surface and into the depths of this disease.

The sea is life. I want to live once more before I die. I want to go down to the sea again...

Sea Fever by John Masefield

I must go down to the seas again, to the lonely sea and the sky,
And all I ask is a tall ship and a star to steer her by,
And the wheel's kick and the wind's song and the white sail's shaking,
And a grey mist on the sea's face, and a grey dawn breaking.

I must go down to the seas again, for the call of the running tide
Is a wild call and a clear call that may not be denied;
And all I ask is a windy day with the white clouds flying,
And the flung spray and the blown spume, and the sea-gulls crying.

I must go down to the seas again, to the vagrant gypsy life,
To the gull's way and the whale's way, where the wind's like a whetted knife;
And all I ask is a merry yarn from a laughing fellow-rover,
And quiet sleep and a sweet dream when the long trick's over.

When In Doubt, Write About Food

I don't know what to write about today. I don't feel particularly bad this morning, nor do I feel particularly good. Yesterday was interesting and I certainly want to ensure my brother, who has worked so hard to make this a great holiday, knows that I appreciate his efforts and the efforts of his wife too; I do. But nothing spectacular happened. The day passed, we drove, we ate, we drank, the day ended.

Maybe food? When there is nothing else to write about, there is always food, especially when you travel. For example I got to try boudin and cracklins yesterday. Boudin (pronounced "boo-dan") is a kind of Cajun sausage made by the locals down here in Cajun country. Lake Charles is right on the edge of this unique triangle of US culture and boudin is available everywhere. It is a moderately spicy pork and rice sausage, served either in links or as sausage balls rolled in a spice and bread mix then deep fried. We had both.

Another deep fried treat of the day was cracklins.  Cracklins are fried pieces of pork fat with a small amount of attached skin. The skin is deep fried then seasoned with a coating Cajun spices. The degree of "heat" in the spice varies from place to place in Cajun country; the cracklins we had were moderately spicy. Every culture where pork is eaten seems to have this fried pork skin snack. When we were kids my Dad used to make them and we called it crackling.

My sister-in-law made shrimp etoufee for dinner. Etoufee (pronouced "eh-tu-fay" is a kind of stew where a central ingredient, in this case shrimp, is covered in sauce and other ingredients, and cooked, once again with a medium Cajun spice. It is typically served over rice. This one was terrific, so good that I had a second helping. My sister-in-law is a very good cook; it is a testament to my brother's self-control around all this good cooking that he isn't a "food planet", a term my son uses to describe people who are very large.

It was a treat having something that was not fried. At times it seems as if everything served in the South is fried. There is a buffet chain here called Shoneys and there are times at Shoneys when every item not on the salad bar is fried. And the salad bar is very small.

So, food. I think I will write about food.

Just Another Morning

Mornings are my worst time of day. I wake up and realize another day is gone and this day is going to have the same difficulties as the last. I usually wake up disappointed and wishing I had just died in my sleep. I have to struggle to get out of bed. Now that my knee hurts from the fall on the boat, it makes it worse.

Being in New Orleans doesn't make it better. Having my son with me doesn't make it better. Having family with me doesn't make it better. I start each day sad, morose, depressed. No amount of distraction shifts my focus when I wake up. I have ALS. The elephant is in the living room. I am going to die a crappy death from this crappy disease, unless I decide on suicide. Even that is a crappy decision since I live in the ridiculous hope that tomorrow might be better.

So here I am in one of the most vibrant cities in the world thinking ugly thoughts. It's just another morning.

I get up and get dressed. Then I start this blog. Writing down these thoughts helps dispel them. Recognizing the reality of my thoughts makes it easier to deal with them. They are like shadows that disappear as I shine the light of discovery on them. As I move about, the pain eases, both emotional and physical. As I stop thinking about the disease and start thinking about life it gets incrementally better, minute by minute.

Maybe something good will happen today, something wonderful and interesting. Maybe I will meet someone who will change my life. Maybe I will see something or hear something or do something new. Maybe today is the beginning of my life, not the end of it.

Once I am past the dreadful sense of having woken alive when I want to be dead, I get better. The tools are here in hand. All I need is to write at bit and I start thinking about good possibilities.

In other words, it's just another morning.

Rinse and Repeat, NOLA style

If New York is the center of American capitalism then surely New Orleans is the centre of American hedonism. New York, founded by the Dutch and built on the industry of English enterprise, is dedicated to working hard and making a buck. New Orleans, established on the attitudes of the French but built by the Spanish is dedicated to playing hard and taking that buck away.

While New Orleans may be the hedonistic center of this country; Bourbon Street is definitely the bull's eye. This six block long stretch of narrow street in the French Quarter, sided by old Spanish Colonial styled, European looking, two and three story buildings built in a square with a central garden or patio, is awash in neon, alcohol and cheap souvenirs. Hawkers, shills and pimps stand on the corners and gather in their prey as it walks by, oblivious to the seedy back corners and dark places in this part of what is really a fascinating city, a city with history in every pore.

Music blares on Bourbon Street as you walk by the entries to the littering of bars that proliferates in this short stretch of street; heavy, brassy, pounding. The strip clubs, each with their requisite gatherer enticing you with the lie, demonstrate their wares in silhouette and photographs lining the blacked out windows of their chosen abode. Inside you can find young women of every shape, size and colour demonstrating their skills with a brass pole and their lack of skill as a dancer.

Even in this you can find humanity. One young lady, on approaching me to solicit a personal piece of business, asked about my wheelchair. She listened intently, eyes widening and glistening as I told her about my ALS and what would happen to me over the next while. Then, incongruously, she shifted her conversation and tone and said "God has a plan for your life" after which she moved on to the next potential customer. Surely His plan was not that she should begin her life as a stripper and more on Bourbon Street. I don't think she asked herself that question.

Drunkenness is the order of the evening on Bourbon Street. That, too, leads to incongruity. My brother and I had decided to have a drink at the famous Carousel Bar in the Hotel Monteleone. While seated at the rotating bar, enjoying an local ale, I saw an aging southern belle across the bar. She was well-dressed, and well oiled. Her overdone make-up spoke of long faded youth and her steadfast drinking spoke of a doubtful future. I commented to my brother on this "Delta Dawn" and, after a moment, we moved onto other things.

On leaving the hotel she happened to be standing, or rather stumbling, next to the cab stand. She approached me and stuck out her hand as if to shake mine. I did. She repeated this maneuver with my brother. I could see her alcohol infused brain attempting to come up with speech. She managed to burble out only two words, slurring at me "Accident? War?" We said war and decided at that moment that I was a Gulf War vet, the first Gulf War. She stumbled away, satisfied that she had made some sort of meaningful human contact, sufficiently drunk as to not remember it in the morning or possibly even in the next moment.

As night flows into day the character of the street changes. Darkness becomes light and the hordes of humanity are replaced by fleets of trucks refueling the watering holes and "gentlemen's clubs". The day wanes, the night people awaken and evening returns to Bourbon Street once again.

Rinse and Repeat.

Vacating

Lake Charles, Louisiana is flat. This whole part of the world is flat. Water runs downhill, even here. We are thirty miles from the ocean and only thirteen feet above sea level. That's about the height of a basketball hoop or a good sized wave. There's not a lot of downhill here. It's so flat that if you stare at the horizon long enough you can see the back of your own head. It's Regina flat only without the weather.

Of course there are some hills. They make little bumps in the golf course. I can see them right outside the window of my brother's house. They manufacture them, putting massive rises into the Interstate bridge over the river nearby. When it rains the water sits in little puddles crying out to the mosquitoes "Breed here!" Based on the TV news, you would think nothing ever happens here but the weather.

Lake Charles is pleasantly rural. There is none of the hubbub and rush that you would find in a big city. It seems calm, restful, relaxed, veritably bucolic. I am staying at my brother's place, alongside a golf course, right on the 17 fairway. With today's rain and cold, the course is empty and quiet. The street is a cul-de-sac set behind a lattice-like indented roadway into the neighbourhood. No traffic noise.

The only noises I hear are the sounds of the clock on the wall and the TV in the corner. Everyone else is out, most probably for a walk or to do some sort of errands. I sit here tick-tacking on my keyboard, interrupted only by the odd blast from a commercial. I decide to mute the TV and now it's only the clock and my typing, along with the sound of my breathing.

There is no rush, no reason to move. I have nothing to do, no time in which to do it. I have no work that must be done until I check my email from the office, something I will do at some point today. Is this what retirement looks like? How long will I last with this calm, quiet, peaceful life? Can I do this?

Adam and Lisa are back. My interlude ends with chatter and coffee and banging in the kitchen... and life.

Travel Day

It's a late blog for me today. It's been a travel day. My son, Rick, and I awoke at 4:00 AM, headed for Calgary Airport, and flew down to Lake Charles, Louisiana to spend this week with my brother, Adam. It's been a long day already, and it's only 3:00 PM here.

Travel is never easy whether you're sick or healthy. It's tiring, at times confusing, challenging and just plain work. It seems almost perverse that we would start a vacation with such a workout. There are a few things I have noticed, however, that make it easier for me to travel.

First and foremost, like almost everything else in my life, it takes more time. I need more time to board airplanes, get between gates, move into and out of the terminals. It just takes more time, so I need to allow more time. It seems to me that this might be good advice for anyone, not just those of us dealing with wheelchairs and such. Additional time means less rush; less rush means less stress; less stress is the right way to start a holiday.

Second, trust the airlines with the whole wheelchair thing. They seem to have this down solid. I just showed up, told them I needed help and they took care of all kinds of things. I got to choose between using my chair or theirs, they wheeled my around the terminal, they checked and retrieved my chair at each flight. In fact the toughest part of the trip was US Customs and Immigration; Rick had to wheel me through that and I was had to walk through the scanner. They offered a "pat down" but I wasn't in a mood to get felt up by a burly security guard.

Third, be prepared to spend money. It seems everything is an extra on US flights these days. You pay extra for luggage. You pay extra for in-flight food. (I decline to call it in flight dining; there were no diners on board.) You pay extra for in-flight entertainment unless you consider listening to the guy behind you snoring "entertainment". Everything costs extra. It's just the way it is in these "cheap flight" days. No sense in complaining, just be prepared to spend the money you thought you saved on your cheap ticket.

Finally, pack an extra dose of humour. Or perhaps have an early drink at the very expensive bar in the airport.

Staying Positive

People ask me all the time how I can stay so positive in this situation. First of all, I am not all that positive. Those of you who are close to me know I am basically a "glass half empty" kind of a guy. It's just in my nature to see the downside of things, the negative outcomes. That's probably why I am such a good Project Manager; I see risks everywhere. Then I manage them, really well.

Secondly, what most of you see is not so much the positive, but the acceptance. Mix that with my natural humour and my general approach to life, and it is easy to confuse it with being positive. And finally, who wants to hear a sad story all the time? I like to be the story teller and telling a sad story really diminishes your audience.

Try this. Here are a couple of paragraphs. Both are true. Both reflect my reality. Which speaks to you more? Which is more positive? I don't really know. First, this one...

This morning I got out of bed early; I woke up early and couldn't sleep. I arose in the dark of night and lay there for a minute thinking about my day, then headed for the shower. It was easier this time as I have figured out how to work out the mechanics of getting clean while sitting on my new shower stool. I headed into the kitchen and used my new Keurig, a Christmas gift from my Mom and Ray, to make myself a coffee. I had a bowl of completely unhealthy breakfast cereal. Using my walker as a stand, I brought both to my comfy chair in the living room, and here I sit, awaiting the sunrise and typing my blog. It's calm as the orange of the sun sneaks into the grey, snowy clouds that settled here yesterday.

Now this...

This morning was tough. I awoke early. My knee was hurting and couldn't get back to sleep. Plus I had to pee. I struggled into the bathroom and shower. After my usual events I slid sideways onto the tub and into the shower seat. Once I managed to get decently clean I went through the ordeal of getting dressed, never easy when you can't use your legs. Using my cane and walker, I made my way into the kitchen and managed to get a coffee and got some cereal. Now I am sitting here in the dark, writing this blog. Oh woe is me. (Hmmm, maybe I don't need that last bit.)

Both are true. Both reflect my reality. Both are visceral and visual. One speaks with my voice, the other with my sadness. One seeks to share, the other seeks pity. Pity sucks. I refuse to behave in a way that generates pity. What people see as positive I see as the only way I have to maintain my dignity and self-esteem.

I have a disease; an awful, nasty, terrible disease. I have to give into it eventually, but I never have to give up to it.

Ancillary Benefits

ALS may be the condition, but there are a lot of "side effects". None of these are side effects from medication or anything like that; I don't take medication. They are the side effects of living. I call them ancillary effects, or more sarcastically, ancillary benefits.

Take my knee injury for instance; I tore the ligaments in my right knee when I fell on my boat recently. Injuries from falling are one of the most comment side effects of my condition. I have bruises and bumps and lumps which I find quite by accident. I'm not sure where they came from, but I suspect someone who doesn't have ALS has fewer of these mystery contusions.

I recently earned the gift of bursitis in my elbow. A "bursa" is the fluid filled sac that cushions your joints and reduces bone friction. When you damage the bursa, either through trauma or repetitive motion, the bursa swells and expands. The kind of bursitis I have even has a name - Student's Elbow! My bursitis is most likely a combination of trauma from banging my elbow, either in a fall or some other way, and the repetitive motion from using my manual wheelchair. No wonder they want me to switch to a power chair.

It's not just the physical ancillary benefits that are problematic, it's emotional damage too. I was at a party at friend's home last night. I have a great group of friends and they, along with my son, helped me in and out of the house. My friend's house has a slope up to the gate and my son helped me walk up the slope. The front door had a high sill so another friend had to lift my left leg up and over the sill, since I cannot lift my legs higher than an inch or so. Later that night another friend helped me walk down the path while my son brought up the truck so I would not have to walk too far.

While we were inside the house, I had to use the washroom; it was up a flight of four steps with a low handrail. I couldn't get up the stairs. So I slid up the stairs on my ass and my friends helped me into a chair from the floor so I could stand and walk. This and other problems act as a constant reminder of what is happening to me.

Were it not for my strong sense of self, this could be very emotionally debilitating. For some ALS patients, it stops them from going out and enjoying life. For me, it's a nuisance; even so, it has an impact on my self-esteem and sense of independence.

I am still a going concern but the going is slowing.

Single with ALS

I am single with ALS. I didn't expect this. I didn't plan this. In fact my life was supposed to go completely differently. I was supposed to be in love with the girl I married in 1979. She was supposed to love me back. I was supposed to be in a committed, long-term relationship. I was supposed to have a woman with me who cares about me, in sickness and in health.

I left my wife in December 2011. That's over a year ago, about 11 months before I was diagnosed. I tried, but I just couldn't do it any more. We are in the midst of a divorce filled with challenge and acrimony. I understand why she is unhappy with the divorce. I don't think she understands why I was unhappy with the marriage. But there you go.

I am single with ALS, not an attractive profile for the dating scene. The problem is that my brain, soul and spirit are all intact. It's only my body that is dying. Even my body is only dying a bit at a time. The problem is that every week there is a new level of normal, slightly different than last week. Again, not an attractive profile for the date scene.

It's a real challenge to offer something a woman wants. I can't offer a lifetime together, except possibly a short one. I can't offer years of retirement happiness; I might live that long but that is just an outside chance and if I do it will be in a wheelchair with physical limitations. I can't take her dancing, or go for a hike, or ride a bicycle built for two. I can be fun, but only in a sitting position.

Sure, I can travel and I can still work for a while. But then that too will disappear. Only a very special woman could love my mind while seeing my body wither. It's a tough gig on both people.

The unfortunate outcome of this challenge is that I will likely spend the last years of my life without a woman by my side. For some men this is a good thing; not so much for me. I enjoy both the physical and emotional relationship that can only happen when you meet a life mate that matches you. I enjoy the company of a good woman, someone who can make me laugh and who will laugh at my bad jokes, someone who will be nice to me and whom I can be nice to. I miss that.

I get angry at this, angry that other people get to look for something with the belief that they have time, angry that other people get to have someone and can live in the dream and hope of a future together. It's frustrating.

When I left my wife, it was so I could rebuild a happier life. To be honest, even with ALS I am happier now than I was for many years in my marriage. I am enjoying what I have in life, taking pleasure in living the life I want to live. I love my life.

I just want a woman to share it with.

Looking For Normal

In so far as it is possible I try to live a "normal" life. I get up and shower, I get dressed, I make coffee and breakfast, I go to work, et cetera, et cetera, et cetera. There are some things I do differently, but mostly I do the normal things.

Every once in a while, life throws you a curve ball, something not normal. That happened to me on Wednesday night. That day by brother, who happens to be gay, came into town for dinner and a visit. He brought one of his friends with him. A friend came over and she made corn-bread muffins; I made dinner and we all sat and ate together. So far, normal.

After dinner my brother wanted to go to a karaoke bar; not just any karaoke bar but a gay karaoke bar. No you might be asking yourself how is a gar karaoke bar any different than a regular karaoke bar. Well other than the complete absence of women, the nature of the male clientele, the decorations and homo-erotic photos on the wall, the phallic images and erotica periodically showing up on the video screens, and the glitter and lighting... nothing.

This is where normal stops and not normal begins, and continues, and goes on and on. You see, along with myself, my brother and his friend, my son came along and later on my other brother (definitely not gay) joined us. We sat there and had fun watching the young men mince their way on and off the stage and giggle their way through their tunes. I am surprised some of these fellows didn't self-immolate right there on stage.

Then my gay brother got on the stage. He is definitely not a mincer and he can really belt out a tune. Imagine a 6' 3" man in Carhartt overalls belting out a Shirley Basset tune in a high falsetto. Other than the incongruity of the setting, his singing was terrific. But he really is a man's man. In fact his most common complaint about his nightlife is the number of women who hit on him. That's not his target market.

After one brother sang, the rest had to. So, from my chair as I could not get onto the stage, I sang. Then my other brother sang. Then my gay and straight brother sang a duet with my gay brother singing the female voice in his best Miss Piggy impression. Again, not normal. But fun!

My son did not sing. We went home fairly early as I was tired. When I asked him about the evening on the next morning, he said "Dad, I would prefer to meet some girls in Calgary before meeting a bunch of gay guys." In other words, he was looking for normal. Me too!

Who Are You?

I get curious some mornings about who reads this blog of mine and how often. I know that some of you are family and friends. Some of you have joined the site and the blog shows who you are. But what I don't know is how often you are here or why you came.

Over the last month there have been 1,200 "pageviews" from Canada and 300 from the US. I can understand that. Then there are pageviews from places like the United Kingdom (12), Germany (8), South Korea (7), France (2), Ireland (2), Sweden (2), Israel (1), and of all places, Senegal (2).

As I say, many of you are family and friends, or friends of friends and family. Some of you are here because you know and care about me; you want to stay in touch. Others of you are here because you know my family and care about them and thus me through extension. Some of you have specifically said you are reading my blog because you want to know how I am doing and you are doing this because you are friends with my Mom. Others are folks that I know and love here in Calgary. But South Korea? France? Senegal?

I am fascinated by the way the Internet reaches out, webbing the world in its strands and threads. According to Google statistics, people have found my blog by searching for information on ALS and stress or even just ALS. Others click in my Mom's blog and use that to get to my blog. Others search for my name and blog using Google itself. Others get here by wandering the blogosphere and landing quite by accident on my Blogspot page.

Equally fascinating is the way my experience can be valued by people I don't even know, people who are interested in the way my life has changed, my disease, my thoughts, they way I feel my feelings. All this can be read, interpreted, pondered and considered by individuals from all over the earth, from all walks of life, from all experiences and states of mind. All I have to do is write something and people read it. I am in constant wonder that this happens and that you are here.

Tell me! Who are you? Why are you here?

Adjustments

It's dark. I sit alone in my living room. I am up before the sun. My son too.

Having someone live with me is a mixed blessing. It is certainly less tidy around my house. Clutter seems to multiply factorially and not geometrically. There are different smells and things in places I don't want them. Then again there is someone to help me with the things that are difficult, like getting up to get something having just sat down or getting groceries from the truck to the apartment.

I wanted my son to come and live with me for selfish reasons. I want help. I want him to get to know who I am before I die. It is more difficult with my daughters. Two of them have husbands and children to consider. The other is off at university across the country. I guess my son drew the short straw. He had a low-paying, low-skilled job and no responsibilities beyond himself. So I assumed it would be easy for him to leave.

Then, once he was here, we began to talk about what it took him to leave his home and job, to leave his friends, to leave his Mom and sisters. He had a life too. He had his own home and his own furniture. He had his routine, his fledgling online business, his favourite places to go. He left all of that behind to come and help me.

We are adjusting, he and I. Our lifestyles are different. Our living patterns are different. Our food choices, our music tastes, our get up and go to sleep times. We are different people. I admit I am not an easy person sometimes, especially when it comes to receiving help. Yet I was the one who asked him to come here to help me. He is is father's son, as difficult in his way as I am in mine.

I need a little help now. With time I will need more and more help. He will come to learn and will decide what he can do. When I said to him the other day that I will eventually need help dressing, he said that would be the time to "hire a cute Filipino nurse". He has some boundaries.

This morning I was having trouble getting into the shower. Then I had trouble getting up off my shower chair to adjust the shower head position; eventually I just gave up and made do. I didn't ask for help, I just figured out how to do it better next time with a better plan. I guess I have some boundaries too.

He will need patience. So will I.

Off To The Gym

Today is my first appointment with the physio-therapist at the ALS Clinic. For me, and most most ALS patients, physical exercise is a double edged sword. You want to stay in shape, but exercising the atrophied muscles doesn't help them. Not only that, exertion is not recoverable and simply leads to exhaustion.

ALS destroys motor neurons in the nervous system. Your brain, or mine in this case, needs those motor neurons to send messages to the voluntary muscles in my body; those are the muscles you can move or stop at will. Leg and foot muscles are controlled by motor neurons in the lower spinal cord. Arm, hand and finger muscles are controlled by motor neurons in the upper spinal cord. Speaking, swallowing and chewing are controlled by motor neurons in the brain stem. Respiratory muscles are controlled by motor neurons in the upper and mid-section of the spinal cord.

Exercise will not strengthen muscles that have been weakened by ALS. Once the supply of motor neurons that control a particular muscle has degenerated, it cannot be regenerated by exercise or anything else; at least not until someone comes up with a treatment that restores motor neurons. According to the ALS Manual (yes, there is a manual for this disease) the purpose of exercise for people with ALS is:

• To maintain or improve the flexibility of muscles not affected by ALS
• To maintain the flexibility of muscles that have been affected
• To maintain the flexibility of joints in the neck, trunk and limbs

In my case, it will probably help in minimizing the "success belly" that I am collecting around my waist. I am about 20 pounds heavier than I would like and according to those nasty charts I could stand to lose about 25 more pounds after that.

Unfortunately the weight loss will come whether I want it to or not. One of the things that happens with ALS is that you ultimately lose your ability to eat. Diet and nutrition become a real problem. People with ALS end up skinny no matter what, unless they die from something else beforehand.

So off to the gym I go, to explore the whole new world of exercising just enough to keep fit but not so much that I wear myself out.

Morning Sickness

You know, about ten minutes ago when I sat down to write this blog, I was feeling very sad, depressed almost. Actually I wake up most mornings with a sense of sadness and loss. That sadness comes from realizing that this is most likely how my life will end; waking up each morning alone in my bed and then one day not waking up at all.

I wondered if this was a serious, clinical depression and not just sadness. So I looked up the differences on the US National Health Information database. I found that symptoms of depression can include:

• Agitation, restlessness, and irritability (I have always been like this!)
• Becoming withdrawn or isolated (Nope, but I often feel lonely and alone. I hate waking up alone.)
• Difficulty concentrating (Nope.)
• Dramatic change in appetite, often with weight gain or loss (Nope.)
• Fatigue and lack of energy (Fatigue for good reason but certainly not a lack of mental energy.)
• Feelings of hopelessness and helplessness (Yes, but wouldn't you expect this?)
• Feelings of worthlessness, self-hate, and guilt (Nope, just my usual lack of self-esteem)
• Loss of interest or pleasure in activities that were once enjoyed (Nope, definitely not)
• Thoughts of death or suicide (Yes, but then again what would you expect in my case?)
• Trouble sleeping or too much sleeping (Nope. I just hate getting up on winter mornings.)
• Depression can appear as anger and discouragement, rather than feelings of sadness. (I am angry but then again I have something to be angry about.)

Now, just a couple of minutes later, having looked at the list I realize I don't have most of them. I am just plain sad, especially waking up in the morning alone in my bed. I am not what you would call highly motivated these days. Perhaps I should go back and look at those stages of grief again.

Then I get up, get a coffee and watch the sunrise. Then it starts to seem a bit better. As the sun rises further and the caffeine kicks in, it gets a bit better. Then I start to write, and it gets a bit better.

Is there a way to skip the morning sadness and go straight to caffeinated?

I Want To Get Up

What's wrong with a day in bed? What's wrong with just taking it easy for a day, doing nothing, sitting around and enjoying the sunshine? What's wrong with being lazy on a Sunday morning?

When I was young and living in my Dad's home, he would be up at the crack of dawn regardless of how much or how little he slept. And once he got up, everyone had to get up. I am not sure if he felt it was wrong to sleep in or if he just couldn't stand someone else being lazy while he was up and about.

Nothing stopped my Dad from getting up. He never slept in, not even on days off. I can recall times when he would be up until the wee small hours, drinking and partying with friends, going to bed near sunrise. Then, after a couple of hours of boozy sleep, he would leap out of bed and start clanging in the kitchen at 6:30 in the morning.

Unfortunately I think I have learned to be that way a bit. I don't get up at 6:30 in the morning, especially after a late night. But when I get up in the morning I want Rick to get up too. He has a different life schedule than me. He sleeps more in the morning and stays up later at night. When I go to work, this is no big deal. It only bugs me when I am at home on weekends. He is sleeping and the voice of my Dad is in my head saying "Dammit that boy should be up and about doing something." (My Dad said "dammit" a lot.)

So I am trying to learn something from my son. I am trying to learn to enjoy the pleasures of sleeping late, the life of relax, the ease of spending a bit of extra time in bed. Of course I don't have as much choice around this as I would like. Getting out of bed can be a challenge for me some days with a bad knee on my right leg and only about 10% strength left in my left leg. So staying in bed for a bit of extra time is a lot easier than it used to be. Nonetheless I am trying, with intent, to take it a bit easier in the mornings.

The only real problem is that I want a coffee, or perhaps a latte. There is only one way to get a coffee or a latte; get up and make it. And once I am up, well, you know. So much for a day in bed.

Maybe I will stay in bed for just a few more minutes. Or maybe it's time to get up and make a coffee.

Perverse Little Sparrows

ALS is a perverse disease. Muscles that you can't move cramp on their own. Excess saliva causes drool out of a mouth that has no reason to drool. The smallest physical challenge is exhausting yet my mind is as strong and active as ever. Emotions are draining but I still need to love and be loved.

This morning I awoke feeling better than I have in many days. I was rested and actually felt like getting out of bed. I slept in until 8:30 AM, a big deal for someone who has his alarm set for 6:30 every morning. It even goes off on weekends; today I slapped at buttons until it muted and went back to sleep for another couple of hours.

I don't know if it is the sun that does this to me. All I can say for sure is this morning when I awoke I felt good, almost like I was getting better. Yesterday I arose in the dark, feeling tired, morose, worse. Today I waited on the sun and feel so much better. It has to be the sun.

That same sun cannot yet chase away the winter cold here in Calgary. It is still -9° Celcius. This doesn't seem to bother the junkos and chickadees feasting on the pine cones still clinging desperately to the jack pine outside my window. With the sun shining on them, they are pecking and poking at the cones that hang like plantain clusters. They move in bunches, attacking in disordered gangs, diving in and leaping away.

Yet despite this day of feeling better I know things are progressing, or regressing as it were. Yesterday I did another FRS assessment on PatientsLikeMe.com. This is a self-assessment but it is fairly accurate. When I was first diagnosed I scored a 38. Yesterday I scored a 36. The average ALS patient loses one point a month.

When I was diagnosed the neurologist said I had "plain, run-of-the-mill, ordinary, every-day ALS". It would appear I am normal even in my disease. That too, is perverse. I suppose I should be thankful I didn't have bulbar onset; those folks decline dramatically and usually have a prognosis of 18 months or less from onset. I have already had this disease 18 months and I can still drive my truck. Thankful? Hmmmmm.

I think I might sit here for a bit and watch those perverse little birds feasting on pine nuts in the dead of winter, sunning themselves in the brutal cold, leaping about without a care beyond the next branch. In as much as He cares for the least sparrow, does He not care for me too?

Invisible Symptoms

Some of the symptoms of this disease are clearly visible. You can see the difficulty in walking. You can hear the slurring of speech. the loss of arm use, the exhaustion and the challenge. There are symptoms you cannot see, some of them physical and some of them emotional. There are a couple of awkward "invisible" physical symptoms - muscle cramps and excess saliva.

It is the perversity of this disease that the very muscles I cannot control will attempt to exert control over themselves at random times. They cramp up without warning, usually at the most inopportune, embarrassing or difficult time. It mostly happens when I am physical in some other way, such as moments of personal intimacy, when I am trying to do something that requires focus and attention. Talk about your awkward timing.

The doctors tell me this is an automatic response in the weakened muscles. The muscles want to fire but I lack the nervous system to control the rate of contraction. The muscles just fire at will. Out of the blue my leg or my foot will cramp up and it will take all my effort to relax or uncramp. That which I am trying to do becomes secondary. Uncramping becomes primary. I hate to think of what will happen when it gets into my arms.

The excess saliva is an even more perverse problem. They don't know why it happens; current thinking is that is has to do with an increased metabolic rate. The excess saliva problem isn't much of a problem during the day. I just wipe it away or swallow it before it gets loose into my shirt, although that will become difficult when I lose the fine motor control in my hands and my ability to swallow.

At night I am asleep and cannot respond to the excess saliva. This means I drool in my sleep. It's embarrassing and certainly does not present a pleasant aspect for someone sleeping next to me. I wake up feeling the wetness to discover that my pillow or my quilt is soaked in my own spit. Again the perversity of this disease; if I sleep poorly I usually wake up and notice the saliva before it gets too bad. I can respond to it. When I sleep well I sleep right through the drooling, waking to an unpleasant, moisturized morning.

Last night I slept well.

Wheelchair Daze

Some days are diamond, some days are stone. That's what John Denver said in his song of the same name. What about days that start out as rhinestones and end up as semi-congealed mud?

Yesterday was one of those days. It started out okay but I have to admit it took me a bit of self-convincing to go to work. Given the choice between sitting at home doing nothing and going to work, going seemed like a better bet, and it was.

One of my appointments during the day was not work-related. It was at the wheelchair clinic where I was going to test a power wheelchair and take a look at a different manual wheelchair. Both of these are provided by the ALS Society of Alberta. However in both cases the ALS Society is looking at things a bit differently than I might see them.

Let's start with the power wheelchair. The chair they had planned for me is clearly well used and fairly basic. The Society has to watch how it spends its money and utility is more important that most other things when they purchase equipment. Most of this equipement goes through multiple owners and I will likely be no exception to that flow; the equipment will outlive me.

I looked at the chair and tried it out. It works just fine. It lifts and tilts; it runs along at about 8 miles per hour; it is easily controlled and can be controlled by something as subtle as chin movements. It's ideal for someone who will eventually lose limb function. On the other hand, it's a bit tired and fussy. So I asked about a new one.

They cost about $24,000! I could buy a new car for that money! Alberta Health Services might, and just might, cover 75% of the cost but I would be on the hook for the remainder. That's a big expense, so I need to think about it.

Then came the manual wheelchair. The chair I am using is a Class A chair. The classes have nothing to do with the chair, but everything to do with Alberta Health and how they measure the requirements of the user. My chair is the most basic. That is what the ALS Society can afford. The wheelchair I want is a Class D chair; it has a carbon fibre frame and titanium alloy wheels. It is light, maneuverable, collapsible and strong. And it costs about $4,000.

Since I am a Class A, I only get a basic chair. When I asked why I didn't qualify for a Class D chair I was told they only buy these chairs for people who need them long term, 10 years or so. That is the lifespan of the chair. Apparently they don't think I will have that lifespan (Class A is short term use) and thus buying a good chair for me is a bad investment for Alberta Health. I may be able to get them to fund the cost of the basic chair, about $1,250, but I will have to pay the rest.

The ALS Manual (yes, there is a manual that comes with this disease) says that ALS is an expensive disease. They aren't kidding!

It looks like I will take the power chair that they provide. I can get used to not having a brand new power chair. On the other hand I am fairly certain I am going to spend the money to get a decent manual wheelchair. After all, I am spending a lot of time in it these days.

So other than that, Mrs. Lincoln, how was the play?

Back To Work

The sun is once again creeping over the horizon. It's not here yet; the sky is shifting from black to steel grey to an orangy-yellow, all in a continuous band. It will be a clear day today, cold and crisp, sun shining.

I am beginning to realize why the doctor said that if I wanted to travel I should do it early. We did a road trip to Vancouver over the holidays. Aside from the usual mounds of stuff that seems to creep into my truck for these trips, my son was relocating from Abbotsford to Calgary. So all of his stuff had to go into the truck. Then, on top of all that, there was my walker and my wheelchair. That stuff takes room too.

Minor logistics are involved. These minor logistics will get more complicated once I am forced into a power wheelchair. At that point the back of my truck will be jammed, and that's just for a road trip. What about air travel? What happens when I need a breathing device or a feeding tube? Then travel becomes more difficult, even a simple trip.

There is another reason the doctor said to quit work and travel. For many people, work is not terribly fulfilling and most people haven't had the opportunities for travel that I have had. So giving up life dreams in order to work just doesn't make sense when you have a limited amount of time.

It's a bit different for me. I gain great fulfillment from what I do. My work has a direct impact on the lives and learning experiences of over 100,000 children and 10,000 teachers. Decisions and choices that I make can mean an improved learning experience for a child and a better teaching environment for a teacher. Or it can go the other way if I make poor decisions.

Some days I get to go into the schools and see the direct impact of my work. I get to change lives, hopefully in a good way. So leaving my work to travel doesn't seem like a great decision to me. While I am not always thrilled about going to work, most days are good. I have decided to take a bit more time off, a week here and there, but mostly I look forward to each to day and heading to the office.

Eventually that decision will also be taken from me. I will lack the strength to work. Unfortunately by then I will also lack the strength to travel or do much else. Of course the decision to work or not work is generally made for all of us; some by enforced retirement, others by life's demands, and others by illness similar to me. We control very little in our lives and sometimes even these simple choices are not ours to make.

While I can make the choice, I choose to contribute.

Every Day is a New Year's Day

Happy New Year!

I have often wondered about this arbitrary day that we select to celebrate the start of our year. It really is a nothing sort of a day. Sure, it is the start of a month, and certainly it is the first day on our artificially created scientific calendar. But then again, there are 12 other months and just when we chose the first day of the month as the start of anything is beyond me.

It's all make believe. Why not make the winter solstice the start of the new year. After all, at least that is a naturally occurring event that has a high degree of consistency to it. And it really is the start of the new year, that time when the cycle of life reaches its lowest point and starts over, rising phoenix-like from the gray ashes of winter.

Every day is the start of a new year. Every day is a new beginning. Each time I get up it is the start of something exciting and interesting. Every morning the sun blazes over the horizon and flames into the new start to living. Why not celebrate a new year each and every day?

Of course that would make every evening New Year's Eve and that might get a bit tough.