Saturday, 31 January 2015

Winter Returns

The snow has returned to Calgary. The Chinook is gone, taking with it the warm winds rising off the Pacific and over the Rocky Mountains. Overnight the temperatures have plummeted, as much as you can call it plummeting, from highs nearing +15 to lows  nearing -15. The roads are once again covered in a thin skein of snow atop the underlying ice, the gift of the snow melt over the last few days.

I like this change in weather. I am one of those strange people who like the winter cold. I enjoy the crisp snap in the air, the brilliant glisten of sun on snow, the tickle of chill against my skin. This weather is only challenging when you are unprepared; all my experience with hunting and fishing in this kind of weather means I am almost always prepared, with a blanket in my car, matches or lighters, an axe in the tool kit and a host of other emergency tools. The problem, of course, is that I can no longer use so many of them. But I have them, just in case.

The plan for today is to head out to pick up a couple of final grocery items. Over the last few days I've gotten pretty much everything I need; fruit, meat, milk, bread, cheese. I want to get another dozen eggs, some bacon, and I am out of ribs, a staple in my cooking plans. My freezer is by no means empty; it's almost full. There are just a couple of things I want, and the Co-op has them on sale this week.

The weather will not stop this excursion. I've learned how to manhandle my wheelchair through the snow, popping the front wheels up and punching the chair forward, almost climbing across the snow rather than rolling through it. Perhaps the Co-op will have their parking lot plowed, although it's unlikely give that pretty much everyone in Calgary is looking to get something plowed today. No matter, the return of winter doesn't stop me. It's barely an inconvenience.

Friday, 30 January 2015

Fine And Good

My home care worker was late today; we decided to skip the shower and just do my exercises. Actually I can still shower on my own if I take the risk of slipping when transferring from my shower seat to my wheelchair. It's workable, just dangerous. I am still reasonably capable with this personal care task; I'll be fine.

That's become a watchword for me, the catch-all phrase that describes my general view of life and ALS these days; "I'll be fine", or "I'm good". It's not dismissive nor is it untrue. While I stumble in my life, sometimes hurting myself, sometimes hurting those around me, I am confident these days that I will be fine, that I will be good. My biggest concern is not actually myself, but those around me how catch me when I fall. I know one day the fall will be too much, the catch to difficult. I realize how hard it is for others to deal with ALS.

Each of us has our own limitations. For me to keep going, it's important that I remember that it's not all about me, that others have to be "fine" too, the those whom I depend on are left with enough energy and compassion at the end of the day to be able to say they are "good", both physically and emotionally. It's easy for me to forget that just because I have ALS it doesn't mean I get a free pass on the rest of human interaction.

On the other hand, I know that those who care for me understand the frustrations in my life. They have seen the changes, been there for the tears, held me when I was exhausted, supported me me when I felt humiliated. I know that those who care for me require an extra ability to forgive and move forward. I have always been a bit difficult; ALS has simply amplified it. I know I let that amplification spill out at times. I know sometimes I hurt those who I depend on the most, just as I know they forgive as best they can, and we all move on.

It is in the nature of humanity to stumble, to fall, to get up and to move on. The challenge for me is that I can stumble just fine; getting up and moving on represent somewhat more of a challenge. I now depend on others. I have to be sure that when I stumble, it is for me alone. When I fall, I now am certain that I need someone to catch me. Yet here I am, as difficult as ever and perhaps moreso. It's a complicated thing, this life I live. It takes work to be "fine and good".

Thursday, 29 January 2015

Good Things In My Life

It would be easy, in fact it is easy, for me to forget, in the midst of all the difficulties of my life, that there are a good many things that happen to me day upon day which bring me joy, which bring a smile to my face, which keep me going even in the face of my ever diminishing capacity. There are so many things, both large and small, which add, one upon the other, to the happiness which makes this most unbearable of illnesses bearable.

Today, for example, I got to drive my daughter Kate to the airport. Many would find this a chore, a task taking time out of a busy life, something troublesome. For me it gave the pleasure of a drive in the warm, Calgary sunshine, a chance to talk with Kate while we drove, an opportunity to get out and about when so much gets in the way of it. Today I got to spend time with one of my children, something I cherish whenever it is possible, fully wishing I could do more often. It gave me the opportunity to smile at her humour, listen to her career struggles, share in her excitement of heading off to Toronto to spend time with a treasured friend. Regardless of ALS, I will get to be with Kate and my other children, and my grandchildren, perhaps many times yet.

I have a party to attend on Saturday and I am headed out to Name That Tune tonight. The excitement and fun of an evening with friends is another thing that will continue long into my decline with ALS. I trust my group, feeling certain that they will do all they can to include me as times get tougher for me. Tonight we will talk, laugh, tell stories and share our lives with one another. On Saturday night we will do the same again. I gain energy from these social engagements, one of the pleasures of being an extrovert. To be out and about is another thing I can, and will, do for some time to come. And when I can no longer be out and about, I have faith that those who love me will bring their energy into my home, into my life.

On Monday a woman I have never met, through the hands of a joint friend, gave me a gift of $100. This generosity, this gift with no attachment, reminds me that I have so much for which to give thanks. I am a giver, not an asker. I could never ask someone to give me this kind of a gift; I would wait for it to be offered and gratefully accept, and perhaps not even all the time with that. I took this money and bought groceries today, the extra money allowing me to get some things I love but have not purchased lately, some tuna steaks, steelhead fillets, and red snapper. I miss having fish for dinner; now, thanks to an unknown person's kindness, I can enjoy something special.

There are lots of good things in my life. Some will stay forever, such as the time spent with my children and my friends, Others will pass away as my capacity passes away. There will come a time when I will no longer be able to drive in the sunshine, when I will no longer be able to shop for my own groceries, when I will no longer be able to enjoy a fine meal. For now I choose to live in this moment, when these things can bring me joy. When I think about tomorrow, I do my best to think about that which will not pass away, days with those who love me, times with those who care, moments with those who stand beside me as I walk this most difficult of pathways.

Wednesday, 28 January 2015

Shower Help

It's happened. Today I had my first home care assisted shower. It wasn't that big a deal, except that it was. It is the demarcation point, the stepping stone from one level to another, a change in my level of care indicating the progression of ALS. Yesterday I showered without help; today I showered with someone there to help me.

It was a bit awkward at first. The Home Care Aide who normally works with me on Wednesday and Friday is off on sick leave with a broken arm. So I have been getting a rotation of new caregivers, people I have never met before. In addition, whenever there is change in the care plan, a nurse/supervisor comes by to check the care plan and ensure the HCA is able to do the work. Today the nurse happened to have a new nurse employee with her for orientation. In the end I had three women in my bedroom all looking at me, naked except for my boxer shorts, and discussing how to handle me in the the shower.

In the end, there was only the one caregiver, a woman who had never seen me before but clearly knew what she was doing. The others left; this new woman and I got to know each other a bit, a polite prelude to her dealing with me completely naked. I used the toilet first, enjoying that last moment of privacy. Then in she came to assist with my transfer onto the shower seat. I drew the shower curtain, stripped off my boxers, and showered. She stood on the other side of the curtain, ready to help if I called out.

Once my shower was complete, I drew aside the curtain and was fully exposed. Nothing happened. The world did not end. There was no reaction on her part or mine. Our job was simply to see that I transferred safely back into my wheelchair and then onto my bed, where I would dress myself. In fact she had a couple of helpful suggestions for the process, all very professional and appropriate. There was no embarrassing moment, no feeling of inadequacy or awkwardness.

As I dressed we discussed possible changes to my care schedule. I am going to shift from Monday-Wednesday-Friday to Tuesday-Thursday-Saturday. When I first started care I was trapped in the "weekend" metaphor. Over the last year I have come to realize that my whole life is a weekend; no day is better than any other. With a shift to Tuesdays and Thursdays, I get to sleep in longer on the other days. Since I go out Tuesday and Thursday evenings, it will mean I can get some extra sleep on the morning after my late nights.

And it means I will have a shower before I go out.

Tuesday, 27 January 2015

Another Rough Night

The term "a rough night" is almost becoming mundane in my life, a near trite commentary on what is becoming a standard part of my existence. Last night was another rough one, a night where sleep was slow in coming and fast in leaving, a night where pain wandered its way through my upper muscles and lower joints, a night where my increasingly present coughing spells managed to be bad enough that rest was impossible.

The sleeping part is only a small component of what makes a rough night. Sleep for me has become the standard in my life. Regardless of when I lay my head down, I am tired. Regardless of when I rise, I am tired. A rough night is when I lay my head down, exhausted from the day, and find that sleep just eludes, that slumber sits on the edge of my consciousness teasing my body with the promise of escape all the while failing to deliver me in the mindlessness. When I finally do sleep, it is fitful, easily interrupted, leaving me once again to hope for its return.

Then comes the aching pain that can wander its way around my body. The pain is not quite enough to respond to drugs, but just enough to make itself known. It's not steady enough for me to capture and contain; it comes and goes, moving about to where it will without seeming rhythm or rhyme. It can leave for hours only to return, wandering from my arms to my knee, waking me in its arrival then leaving me thereafter, awake and wanting to sleep once again.

Last night brought the roughest of night time visitors, the cough I get when my throat gets itchy. It is as if the muscles in the back of my throat a working at cross purposes, with the cilia lifting up and the swallowing pushing down. It starts as a tickle, as if I had some sort of throat irritation. I clear my throat and it gets no better. The irritation and discomfort increases until I am in a full blown hacking attack. I sit up, drink water, cough and clear, yet with all of this nothing really changes. Finally, for no apparent reason other than ALS, my throat tickle disappears and once again I find myself trying to sleep. Fortunately these coughing attacks are sufficiently exhausting that sleep is quick in coming.

There are the usual interruptions, having to go pee, wanting to shift position, and all the other little things in sleep that leave most of us untroubled. I wish it were so. Between all of these visitors at night, the last 18 hours I spent in bed resulted in about 12 hours of inconsistent sleep. Finally I am up and about, hoping for a few hours of life before I try once again to sleep, perchance to dream.

Monday, 26 January 2015

I Smell Bad

This disease is filled with frustration, lots and lots of it. The frustration comes in small bits and in big chunks, wrapped around incidents that seem like nothing when taken on their own as well as incidents that are massive and impactful no matter what context you use. Mostly it's upsetting; sometimes, plenty of times, it has the potential to make me downright angry were it not for a willful desire on my part to keep anger to a minimum. And then there are the times when I just want to cry.

This morning is a great example of the kinds of large and small limitations and changes that one could easily dismiss, and then find that they cannot be ignored. The shower is a great place to start. This will likely be the last week of my life where I can take a shower unaided, where I will get myself onto the shower bench, wobble my way through washing myself, and transfer back to my wheelchair. That, in and of itself, is upsetting; to realize that another change in how I live is on the way and that there is bugger all I can do about it. It's just another thing I will be ultimately forced to accept.

Then there are the smaller things, the less visible things. For example, when you spend your whole life sitting in a wheelchair, the skin in your perineal areas never gets to "air out". Since you are not standing, since there is no movement within that realm, there is a perpetual bit of dampness, a combination of sweat, urine and the remnants of the last shower that just did not get dried off. Given that perpetual bit of dampness, that area of my body smells. No matter what I do, no matter how much I scrub, no matter what scents or fragrances I use, nothing will ever make my perineum smell like a spring daisy, or anything else other than slightly dank and dirty.

I know this is true. I just got out of the shower. After an extensive period of scrubbing, washing, soaping, rinsing and rewashing, after drying repeatedly, there is just the lightest fragrance of crotch rot. I hate this; I cleaned it, I know I cleaned it, I know how to clean it. But there it is.

That smell is because my legs are forever pressing inwards, the dead muscles like flanks of meat pushing sideways under the weight of my body. That constant closure to the any air motion means I never really get dry down there. I think I am going to start taking some time after every shower to just lay in bed, spread-eagle, so I can dry off. Except that I cannot spread-eagle my legs. The muscles don't work. And that leads to the next frustration, the next aggravation, the next anger.

Sunday, 25 January 2015

Sometimes I Don't Eat What I Cook

At last my home is empty. I have had guests in my home from my first waking moment until now... and I have loved every minute of it. I am continually given the gift of friendship and companionship from those around me. It makes my days alive, vibrant with conversation and company.

My apartment smells of BBQ ribs in the slow cooker. I have dinner made for six. Now that my company is gone, I am eating alone. I am not really all that hungry. I suspected Kate will get most of these ribs; I am certain she will appreciate them. I love to cook; it's the whole eating thing which can be problematic for me. In spite of my best efforts, my appetite disappears easily and quickly. So a terrific batch of ribs can smell like heaven to me, yet still I will be unable to eat.

I am pretty much okay with that. I do the best I can. What I have learned is to eat when I am hungry, eat what I can when I want it, and don't worry about the rest. I know people with ALS who worry a lot about what they eat. The consume supplements and pills and special foods. In the end, I'm not sure it makes all that much difference. ALS is random; sometimes it goes slowly and other times quickly. Sometimes diet matters and other times it does not. All I know for sure is that I should eat when I am hungry.

I find that having something to drink improves my appetite. Late nights seem to do it as well. I get "snacky" after 10:00 PM, whether here or out. I suspect it has to do with my eating cycle. Generally by that time of night it is several hours since eating last, enough time for appetite to rebuild and return. Oddly enough, what I eat is relatively unimportant, it's just that I eat.

There is no predicting this. Some days I crave a plate of vegetables. Other days nothing will do except some ribs, all salty and meaty. The other night, at about 1:00 AM, I ate about a half a dozen slices of Swiss cheese wrapped with prosciutto ham. I just couldn't get enough of it. Like the paleolithic hunter, there was food and I hungered. I ate.

It is a victory to me when I can eat. Often it has nothing to do with what I cook. Here, today, I have this terrific batch of BBQ ribs. Yet what I am hungry for is the cold, leftover KFC chicken in the fridge. All that effort to make a great meal, and I will eat cold leftovers. No matter; I am eating, keeping my calorie count up. That's enough to chew on for today.

Saturday, 24 January 2015

What Do I Value About Myself

I am using one of Kate's "prompt" cards today, a question about me and my life as a prompt to write something. The card says "The thing I value most about myself is...". It's an interesting prompt, causing me to wonder about the difference between something I value about myself and something I like about myself. In the end, perhaps it is a difference of degree, or perhaps it is something of myself that brings value to others. I'm not completely sure.

There is one thing I do know for sure. The one thing in myself that I both like and value is my ability to persist. I once said to a friend that I was "as persistent as the sea." It's not just that I don't give up easily, as surely I do not. It's not just that I keep trying, trying to live, trying to love, trying to keep going. It is much more, something deeper than that.

There is a problem trying to explain this attitude of persistence. Perhaps the best I can do is say that I keep moving forward, assuming forward is the best direction in which to move. There are times when forward motion is no longer possible, so I try to find another direction that works. Nonetheless, I keep moving, keep trying to get to my destination. The funny thing is that my destination can change so much, can move without plan or intent. Life just does that.

Think of it this way. When I was 56 years old, I left my wife permanently, planning to rebuild my life here in Calgary. Not everything was bad in my old life; there were plenty of things I liked, plenty of reasons which may have made another person decide to stay. Yet I did not; I left. I had persisted in working on my marriage for many years until, at the end, I learned that I needed to change direction.

Directional change was forced on me only 10 months later, when I was diagnosed with ALS. I had already started rebuilding my life, rebuilding my career, rebuilding my relationships with my children. Now, through no fault or plan of my own, my direction had to refocus; I had to shift direction. Yet I persisted in trying to build my new life, persisted in being who I was and who I am.

Now I am persisting again, living with ALS. I just don't know how to give up on life, how to stop living. It seems to be the only thing I really do well, to keep going, to persist. I have seen others around me surrender, give up in the face of terrible odds. I choose, willfully, to persist, to keep going, to live. It's really my only choice, and it is something I value.

Friday, 23 January 2015

I Am Blank

I am blank. It's been one of those days where nothing has happened, except the need for sleep and the long day in bed. Kate is over; I finally got out of bed when she rang to get in the front door. I am making a simple meal of pork chops in mushroom gravy with rice on the side, plus a few tomato slices to add some colour to the plate. We will eat in a minute or two, once the rice is done.

As I sit here typing in my blog, Kate is texting away on her new phone. She is excited by the ability to text quickly, to respond to a message in near real time. Apparently her old phone was very slow with this function. It's good to have her just sit here, humming a melody, sharing her thoughts with friends, chatting away with me about her side of the conversation. This is one of the good things about being a parent, when you can be with someone you know so intensively and intently, someone whom you held at birth and how share gentle time and space with.

I am not sure how my evening will go. There are no plans, no goals for the day. Perhaps I might do laundry. Perhaps I might go to a movie. It doesn't really matter. It's that quiet kind of day, that kind of day with nothing in it. Even home care failed to come today to do home making, although a care aide did come to stretch me. The home maker will come tomorrow to clean.

The easy quietude is so kind to my spirit. This lack of scheduled intensity, the absence of plan, makes it easier to live an easy life, the kind I need. Stress is a killer and I don't want to die. So a blank slate today is good for me.

Thursday, 22 January 2015

The Lighter Load

I am not very good at staying angry; it's just not something I can do. I've always been this way. I get angry, then like a storm passing in the night the anger blows away. Sometimes the tempest is wild, sometimes mild, but always full on and soon gone. I just cannot seem to remember the anger, nor the pain that goes with it.

This may be a good thing or it may be a bad thing depending on where you stand in an argument. My ex-wife could remember every insult, every slight, every misstep. She could recall them on a moments notice, dredging them up out of her memory whether from last week, last month, or 25 years ago. I am told that women have a better memory for these things than men do. I don't know, nor do I understand why anyone would carry that kind of baggage around with them.

The downside, of course, with my inability to sustain my anger is that I rarely won, or win, an argument. I was, and still am, almost always the first to cave; I just couldn't, and still can't, hold out long enough. Over the years, I began to become more careful about what I said to my then wife, not just in terms of saying things that might upset her, something I seemed forever capable of doing, but also in terms of expressing how I felt about something or what my point of view was on something. She had the ability to recall these comments or expressions or feelings years afterwards, hauling them out in a future argument, ready to remind me of something I had long forgotten. I used to call it "weaponizing"; I would not say things lest she weaponize them a some future point.

All of this is to say that in most of my personal relationships, I am quick to forget that which caused anger, quick to forgive that which caused pain. There are perhaps only a handful of incidents throughout my life which have struck me so seriously that I remember them still, only a few hurts that cut so deep as to stay with me. Yet even these I try to let go of, try not to carry around. The longer you live, the more stuff you have along for the ride.

I prefer to forget the anger and hurt and pain, and just remember the good stuff. It ain't easy, but then again, neither is it easy to carry that weight. I prefer the lighter load.

Wednesday, 21 January 2015

A Call From Revenue Canada

I would like to thank Revenue Canada for calling and waking me up today. While I didn't enjoy the nature of our conversation, the nice young man from Summerside, PEI was quite polite and very understanding. He seem rather upset that I would take income from my company and yet not file my corporate taxes. I explained my reality and he listened, finishing the call by saying he "needed to do some more work on the file" and that he would call me back in a couple of days. I suspect they are going to do something to get their money; I just don't care all that much.

It was just after 11:00 AM when he called. I was still dozing, half asleep, not yet ready to face the day. It had been a long night of sleep and still the exhaustion of ALS had not left me. I went to bed yesterday at 4:00 PM thinking I would nap for an hour then go to my weekly Trivia night. I awoke just before 6:00 PM and realized there was no way I could get up and go. It just wasn't in me. So I let Mike know that I wasn't going to be there and went back to sleep.

All told, I've slept about 17 hours. You would think I would be ready to go after all that sleep. Unfortunately that is not the case. My hands are shaking terribly this morning, so much so that I can barely type. I'm like a human vibrator right now. My arms are weak as usual. I don't feel like eating but I will force myself to have some leftover Greek Salad in a bit. This is the new normal for me, slow to rise, slow to engage, slow to action.

The whole Revenue Canada thing is ironic. They say the only two certainties are death and taxes. I am dealing with both of them. Oddly enough, since death is a certainty for me in real terms, I'm not all that worried about it. And since ALS is doing its best to bankrupt me, I'm not all that worried about Revenue Canada. They can get in line. I know they will position themselves first in line, but I'll be dead before the line starts to move.

Money, that's all it is. My Mom used to say that the Golden Rule was "He who has the gold makes the rules." I don't really think so. All the money in the world will not save me from the outcome of ALS. Money is good to have, and bad to have. It's best when spread around and shared, like a nice bit of jam on toast. Perhaps that is what I will have now, for breakfast, at 1:00 PM.

Tuesday, 20 January 2015

Helping Others

I am up early this morning, at least early for me, in order to take a friend to a doctor's appointment. She slipped on the ice the other day and broke her wrist. The cast makes it almost impossible for her to drive, and certainly dangerous. So I volunteered to be the driver this morning. I have to leave in a few minutes.

This whole situation proves to me once again that I am not really disabled, but rather enabled in some ways and not in others. I can drive, she can't. I can cook, others can't. I have abilities that others do not, and others have abilities that I do not. So perhaps helping my friend is really a way of helping myself.

The whole "getting into the truck" routine is becoming more challenging. I can still transfer myself from my chair to the lift seat, although slopes or snow or almost anything in the way truly stretches my ability. Driving itself is relatively easy. It takes only the coarsest of muscle movements to make the truck point in the right direction, courtesy of power steering. Using the manual controls is still possible although I do shake a bit when holding the brake on for more than a minute or two. In those situations, I just put the truck in "PARK" for a moment or two, then I am fine.

I can still do long distances when I drive. On the way back from my ill-fated trip recently, I drove for several hours non-stop, including going through customs. I am thankful for cruise control when I high the highway, but often enough I forget to use it and find an hour has passed with me holding the acceleration bar in position. It's not all that difficult.

These are the things I can still do. These are the things that are still possible. Yet things requiring exertion, things requiring endurance, they are becoming too much. If I have to lift something heavy, I cannot. If I have to wheel up a steep ramp, I need help. I try to keep myself to the things I can do; I am not always successful, sometimes I need help. Sometimes I ask for a volunteer. That's why it's so nice to have that shoe on someone else's foot for a bit. It's nice to have someone ask me to help.

Monday, 19 January 2015

Warm Days

I didn't want to get out of bed today. That's not entirely unusual, nor is it particularly a negative thing. Given the demand for sleep that ALS puts on my body, I can always sleep just a bit more. Given the amount of work that it takes to get up and dressed, avoiding it is an energy saving idea. Given the absence of any particular demand on my schedule, staying in bed just makes sense. Let's face it, if the rest of the world could avoid getting out of bed on Monday morning, what percentage would do just that?

So here it is late in the afternoon and I am having my "morning" coffee. I need to rush over to Safeway and pick up the ingredients for a Greek Salad to go with the Lamb Chops I am preparing for dinner tonight. Mike and Cheryl are coming over to discuss strategies to let me live in my home once I run out of money. There are a few good ideas on the table and I know I can trust them to help me make a good decision.

The reality is, of course, that there is no good outcome from this. So for me, in the moment, for today, I am going to focus on the good things I have in my life. I have wonderful people around me. I can still eat, still shop, still cook, still look after myself, mostly. The emotional setbacks of the last few days will pass and I will move forward. It is in my nature to forgive and move past stuff. It's just a part of who I am, whether I like it or not.

It is a beautiful day outside. The Chinook winds have brought warm weather, the snow is melting, the sky is a beautiful powder blue drifting into soft white on the distant horizon. The air is now calm; the branches on my tree, clear of snow, are still. Not even the junkos and magpies are out right now. I suspect that they too are basking in the warmth of what should be a winter day.

It will cool off tonight; it's begun already. The temperature is off a couple of degrees from its midday high. The middle of the night will bring back the cold, just enough of it to freeze the melt of the day into black ice on the local roads. It is the way of life here in Calgary; the gift of warmth in the day brings the danger of ice in the night. Life is kind of like that too; you have to enjoy the gifts of the day for the shadows of night bring sorrow. I like the warm days a lot better.

Sunday, 18 January 2015


I almost forgot to write today; it's been a bit of a ramble recovering from yesterday. Fortunately a couple of my friends have dropped by today to make sure I was okay. Once again I find myself surrounded by support here at home in Calgary.

The question I am facing now is what to do. I had my schedule arranged. I had my plans made. I had things setup for me to be out of town for a couple of weeks. Now I find myself in town, not quite knowing what to do with myself. Of course I can step back into my regular routine but I am a bit embarrassed. I was so excited about heading south. I told everyone, with some glee on my part, that I was going away. Now I will show up, never having been farther than Butte, Montana, facing a bunch of questions about what happened.

Right now I am having a fairly serious crisis of confidence in my biological family, my siblings and even my Mom. I'm still stunned by what happened on the road, and the effective non-response from the other brothers. All it does is confirm that the people I count on are the people I should count on, those who are around me on an ongoing basis.

What I do find interesting is the level of unconditional support I am getting from those around me. There has not been a moment of judgement or suggestion that I am making too much out of this. While those things might be true, and I might be making too much out of this, I am still struck by the loyalty and care of my friends.

My children have also reached out to me in this, phoning me and touching base. It was so good to hear from them in this time of distress, so good to hear them say they loved me or to let me know in other ways that they too are distressed about what is happening. I am proud of them. If I have any message for them, it is that they need to care for each other, be kind to each other, be supportive of each other. I want them to be a family, the family that stands up for itself, regardless of time, distance or circumstance. That would make me the most proud of them, to know they are there for each other.

Saturday, 17 January 2015


It's been a long day, a tiring day, an educational day. First of all, let me say that my road trip to Palm Springs is definitely not happening. It is a shattered as a wine glass dropped on a ballroom floor. It is a broken dream, never more to be awakened, an incomplete passage from a sonata unfinished. I ain't going south; that's that.

Right now I am sitting, safe and protected, at my own table in my apartment, aided and supported by those who care about me, ensured of comfort and compassion by the people who make a difference in my life on a daily basis. In other words, my family, those who love me and are a part of my life, stepped up and helped me when my travel plans fell to pieces.

It all started this morning, early, far too early for me. It all started when my brother Jim simply insisted that I meed his schedule, meet his demands for time and timing. What he didn't understand is that ALS has a mind of its own, that my body simply cannot understand demands for performance. I just cannot get up and go, instantly, or even close to instantly. My body demands its own schedule, its own timing, its own plan for get up and go. When Jim came face to face with ALS, he said "I don't want to do this. Can we go home now?" I said "Yes".

I am continually surprised by those who call themselves my family, but their inability to see on a daily basis what this disease does to me. Those who are with me on a regular basis, those who see me from day to day, from week to week, have seen the loss of ability, the struggle with normalcy. Those who share my life on a regular basis see the exhaustion, the slide into incapability, the diminishment. They understand, they care, they know what it is to see me fall from the heights of what I was into the depths of what I am.

My family is those who care for me, those who attend to me, those who support me both emotionally and financially. My family are those people who are there when I need them, answering the call, forgiving the emotions and frustrations and anger and tears. My family is those who are around me in this time of my life when I most need them. My family are those who love me, forgive me, support me. I have a family, not those connected by genetics, but those connected by care. For this, I am grateful.

Friday, 16 January 2015

In Butte

It's 9:45 PM. I am sitting in a small hotel room, at the Motel 6 alongside I-15 in Butte, Montana. It's a pretty decent wheelchair room except that, as in many wheelchair rooms, it only has one bed. Fortunately I am alone in the room; having only one bed doesn't matter all that much in this setting.

As to Butte, Montana, where I lay my head tonight, it's a mining town high in the mountains of Montana nestled deep into the Silver Bow Creek Valley, a natural bowl sitting atop the Rockies straddling the Continental Divide. It has a long and storied history as a mining town, starting as a camp, becoming a boom-town and settling in for the long haul thanks to rich deposits of gold, silver and copper. You can still see the mine-heads where urban areas and homes have been planted up close. At night they light up the head-works in red, the locals proud to acknowledge their history and economic basis.

My day started in Calgary, rousted out of bed early, for me that is, in order to be picked up by my brother, Jim. We are on our way to Palm Springs, California; it's a winter to summer road trip, out of the freezing, snowy weather of the great white north to the sunny, dry climate of desert southern California. Our plan is to make the drive in three days. To do this it will mean early starts and a long drive for three days, today being one of them.

Early is a relative thing. Jim has always been the night owl, usually staying out or at least up until 2:00 or 3:00 in the morning. In his normal routine he will sleep until about 11:00 AM, then groggily arise and slowly start his day. On the road he shifts his schedule, sometimes getting up as early as 9:00 AM and even 8:00 AM if needs be. He's not afraid of a long drive; nor am I. So this morning he left Edmonton at 9:00 AM to pick me up at noon. I was ready at noon but without having written, so here I am late at night, or relatively late, making my observations.

Jim finds himself in an odd position on this trip. He is the early bird, waking before I do and ready to go long before me. As we were getting into Butte, he asked what time I wanted to head out. I said 11:00 would be fine; I don't think he felt all that good about starting that late. So I am going to bed early tonight, early enough to get plenty of sleep and be up sometime around 10:00 AM. That means it's bedtime for me in a few minutes, an early rare bedtime for me.

Thursday, 15 January 2015

Trust Issues

I have trust issues. There is no doubt about it. One of my friends described it as a wall I built up around myself, letting nobody in lest they hurt me in some way. I was raised by a man with trust issues and then married a woman with trust issues. All through my life my own trust issues have been supported and reinforced in my deepest personal relationships.

My Dad warned me warned me persistently, in word and deed, that people could not be trusted. When someone gave you something, it was because they expected something in return. When you gave someone something, you had to remember it so that you could call back the favour when you needed it. You see, with my Dad, there was no such thing as a gift; it was always a transaction with an expected return.

Then I married Carla, a woman who barely trusted me and eventually didn't trust me at all. Her trust issues were not related to fidelity; while we were together I did not fool around. There were no other women in my life expect my wife. Carla's trust issues with me were related to money and reliability. From her I learned I was bad with money and was not a reliable provider.

In both of these relationships, the trust lessons I learned were not only incorrect, they were down right perverse. As it turns out, I am very reliable and have provided for my family very well. As it turns out, I am very good with money and have managed to look after myself very well. As it turns out, I am very generous without expectation of return. I have successfully unlearned those false lessons. However the deeper trust issues, the ones where I have learned to fear, are not being resolved quite as quickly.

I still have that wall. I am still suspicious of gifts; my Dad taught me they all came with strings. I still doubt myself in my recent financial decisions; my ex-wife would be telling me I've wasted a lot of money on frivolous things like travel and wine and my truck. I still doubt myself around reliability; I am letting my children down once again by dying too soon and leaving them with nothing. Those voices are still inside my head.

So when something happens that seems good, I am doubtful of it. When someone comes into my life and is good to me, I wonder what they want. When people say they will help me, I don't believe them. I am just not going to have enough time to unlearn these lessons, to get these voices out of my head. At least I recognize them. That's a first step.

Wednesday, 14 January 2015

Nobody Plans For ALS

I let Rosa, my housekeeper, go today. It was the first in what will be a series of enforced economic decisions as my financial viability winds down. It's not that Rosa was terribly expensive. I paid her $50 for two hours of house keeping. It used to be every week but now that home care provides cleaning once every two weeks, it have come down to having Rosa in the alternate weeks. That meant roughly $100 a month.

A hundred dollars is not a lot of money, unless you need it and don't have it. More importantly, it represents the potential for other choices as things be tougher on a financial basis. For example, that $100 is enough for me to go out with friends once a week for a month, assuming I don't drink a lot or eat out as well. One hundred dollars represents 2/3 of my monthly TV and Internet bill; I am on the Internet almost constantly at home, except when watching sports or documentaries on TV. That $100 a month will cover almost all of my property tax bill.

There are other financial decisions to come, soon. Once my money runs out, most likely in March, I will have my pension of $1,100 a month and probably a supplement from the Alberta Income Supplement for Handicapped of about $300 a month, for a total of $1,400 a month. That won't even cover my mortgage, let alone taxes, household costs, food and entertainment. Of course my truck will go almost immediately; I will have to stop making the payments of $780 a month. Once the truck goes, I won't have gas or maintenance. I also will no longer have freedom or independence.

Even with my pension and AISH I won't be able to cover the most basic of expenses. It costs me around $2,500 a month to keep it all together, and that's without the truck. Add the truck in and you get around $3,500. That means I will be about $2,000 short a month, or about $1,000 if I lose my truck, something which is a near certainty, especially once I lose my ability to drive.

There will be lots of opinions on why I am in this situation. Some will say I should have planned better. Some will say I should have saved more and spent less. Some will say it's my own fault. All of them will be partly correct. I didn't plan on getting ALS, the single most expensive disease possible. I didn't realize that spending money on my family and life over the years was really a bad idea. I didn't think that helping my kids whenever possible was such a bad thing to do. I didn't think that I would live longer than planned with this terminal illness.

Nobody plans for ALS. Nobody plans to lose their career in their highest paying and most productive years. Nobody plans on a bitter divorce and its attendant financial destruction without time to recover. Nobody plans on the costs for wheelchairs, home renovations, truck modifications, home care. Nobody, not even me.

Tuesday, 13 January 2015

No More Pity Party

I am allowed to have bad days; the last couple of them have qualified. Sometimes these bad days are triggered by something; most times they move like a storm across the ocean, the dark clouds and wind tossed water moving quickly, unfettered by obstruction. When I feel those feelings, I allow myself to have them, let the storm pass, and look once again at an azure sea fill with life. I listen to the sea birds calling, to the whale's spout, to the bark of sea lions. I awaken from the storm, ready once again to sail the seas of life.

My pity party over the last few days was brought on by tiredness, fueled by rum, and stoked by my own mental games of "what if". If you want to feel really bad, think of all the imaginary things that might have happened in your life "if", think of all the imaginary things in life you will miss "because". Stack a little ordinary life frustration on top of that. You get a pretty potent, depressive mix.

Fortunately this state burns itself out fairly quickly. I am basically a happy guy. Certainly I have a terrible disease; that is something that many of us will face. Yet even with that, I can find many things that make me laugh, make me feel joy. All I have to do is look out my window at the beautiful, blue sky, see the icicles hanging on my tree, the branches covered in snow. All I have to do is recall excited grandchildren running around in grass skirts, showing off their hula dancing technique. All I need recall is the love of good friends and family.

The stairway out of this pit starts with laughter, a change in perspective, someone finding something that ever so lightly lessens my load. I'm usually good with just the smallest nudge. That nudge, however, can't come from being "told" to stop feeling sorry for myself, from a lecture about how I don't have it so bad. That nudge is often something that makes me see myself and my world just a bit differently, a view that allows me to forgive myself and move on. I can carry my load but, just as it is on occasion with my wheelchair, sometimes I need help with the slope.

Life is good; it's not easy, but it's good. I have ALS; this is a sad and terrible thing. Yet I have a life, a good life, filled with adventure and wonder and laughter and love. Still, even with that, I get down a bit sometimes. Then I come back. I remind myself that the biggest problem in my life today is that I am out of butter. Other than that, and a small health issue, I have it pretty good.

Monday, 12 January 2015

I Quit; But I Can't

I quit.

No, this is not a peremptory statement on suicide. No, I am not taking the pills today. No, I am not going to wheel myself into the middle of traffic and hope for a hit. This is just me saying that I am really fucking tired of this ride. I've had enough. I give up. ALS, you win.

I'm really tired of being the hero. I'm really tired of being the inspiration, the warrior, the one that takes everyone to the promised land. I'm just not that guy. I am not the one that people should look up to, nor the one that people should seek to find solace from. I am not the man with any great wisdom; I'm just a schmuck who happened to get a miserable, shitty, horrible, nasty disease for which there is no cure.

Think about those who came before me; not those with ALS but those with other "terminal illnesses" about a hundred years ago. Did you know why Doc Holliday didn't give a fuck at the OK Corral? It's because he had consumption. That's what they called TB or cancer or just about everything else about 150 years back. He knew, as I know, that going out with a bang beats the hell out of going out with a whimper.

Unfortunately Doc Holliday and I share the same fate; we are destined to survive the bullets, ultimately to end up expiring ignominiously in a chair somewhere barely noticed by history in our passing. We, both the Doc and I, are irrelevant in our expiry. Our relevance, his and mine, is only in our living, not in our dying.

I am not much for quitting; it is not in my nature. It's just that I am fed up with fighting. I really don't want this daily slog, this trench warfare the only parallel of which I can find in my grandfather's journal of the First World War. The difference between he and I is simply this; each day as he fought his way through the trenches of western France, he hoped and prayed he would return once again to the sainted soil of his home. As I fight this perpetual slog, I know that there is nothing at the end but defeat in body.

The only thing I have left is my spirit, my mind. Okay, I quit with my body. My mind, other the other hand, refuses to surrender. That is all I have remaining. I quit, but I can't. This is so fucking stupid.

Sunday, 11 January 2015

Mind and Body

The sleeping episode yesterday has driven home the reality of a much larger issue I have been facing lately, an issue which has been apparent to me from the beginnings of my journey with ALS, but has, so far, been confined to the sidelines by my approach to life and living. I am beginning to have to deal with the certainty of physical failure. I am seeing, in a real and tangible way, that my mind and my body have become two separate entities, one working well and the other failing constantly.

It might seem a little weird to talk of mind and body as two separate things, especially in the physical realm. The more spiritually enlightened amongst us have long known that you can separate these two things. Most of us use some sort of chemical agent or drug to assist in this separation, to help us "get out of our own body". There are people who regularly speak of "out of body" experiences. Alas, mine are not at all like that.

What I am dealing with is the more practical reality, that my mind says I am ready to go while my body insists that it is not. I see this most prevalent in my sleeping, or more correctly, my awakening patterns. I wake up, at least my brain wakes up, after about 8 hours of sleep, often even less. My brain feels good, ready to go, alert and alive. Then I ask my body to move; it has become like a delayed second request. My body says "No thanks. I want to sleep." So even though my brain feels ready to go, I simply am unable to make my body move as I wish.

It goes a bit deeper than this simple connection. I've been losing physical control of my body for almost four years. It started with the smallest of things, the most dismissable things. As time has gone by, the failed link between mind and body has become clearer, more evident. Yet even with this powerful physical evidence I was able to ignore the facts and simply push myself to do things in other ways. No legs; no problem, get me a wheelchair, a lift, a grabby stick. Arms tired; no problem, use the power wheelchair, get someone to push, call friends.

Now, however, I can clearly see the loss of function, of all things, in the waking process. I wake up mentally ready but my body just can't do it. My brain is awake while my body demands rest. My mornings almost always start with an hour or so of just staying in bed waiting for my body to catch up with my mind. I use this time; it's a place where my mind can be creative without my body participating. I also doze, slumber flowing in and out of this period of enforced idle.

It's a strange time, and a strange thing to see. I know my mind would go if my body would permit. I know I can function mentally; it's the physical that is failing me. My mind is active and my body is failing; that's what ALS is all about.

Saturday, 10 January 2015


Yes, this is the blog entry for January 10, 2015. Yes, this entry is coming at 9:15 PM in the evening. The simple reason for this very late blog entry is that I just got out of bed about a half hour ago. Up until about 8:00 PM today, I was asleep. I awoke, struggled as usual getting out of bed, had a shower, got dressed, and here I am, late as can be.

I went to bed last night at about 3:00 AM, not an unusual thing for me given the lack of restraints on my bedtime and my awakening the next day. It's not like I intended to stay up that late; I had the opportunity to go to bed hours before. I just wasn't tired and did not feel sleeping. Then, at around 2:45 AM, I started to get dozy. I finished my wine, turned of my TV show and rolled off to bed. My head hit the pillow and the last I have of the clock, it read 3:08 AM.

The next time I saw the clock, it read 10:00 AM and I was barely able to read it. Knowing full well that I was not going to make my noon appointment with friends at the Farmers Market, I sent out a note letting them know. My demanding body dragged me back into slumber; it was 4:00 PM before I awoke once again.

I knew by this time that my body and my brain were having a fight. I wanted to get up, at least in my mind. Yet every effort to convince my body to cooperate failed once again. I just couldn't do it; I was too tired. So I posted a note on Facebook to let friends and family know I was alive but tired. Then I returned to slumber. I awoke again at 6:00 PM and realized I would not make the 7:00 PM cribbage game I had signed up for. Once again I sent out an apologetic cancellation notice. Once again I returned to slumber.

The last part of my marathon sleep was off and on. I slept; I woke up for a few minutes. I slept; I woke up for a few minutes. This is not unusual for me in my last hour or so of sleep. Today it lasted for a couple of hours. Finally, at about 8:00 PM today, I began the process of getting out of bed.

In some ways, this Rip Van Winkel episode is not a real surprise. On Wednesday night, I got about 11 hours of sleep. On Thursday night, I got about 9 hours of sleep. Last night, and today, I got about 17 hours of sleep. That's 37 hours of sleep over three days, or about 12 hours a night; my average. I guess my body was just catching up. Now that I am up, I think I will go out. After all, I'm not that tired.

Friday, 9 January 2015

Don't Say Stupid Shit

Be forewarned. There is swearing in this entry. I can help it, but I won't; some things just need to  be surrounded by expletives.

Today another PALS online posted a thing about what not to say to someone with a "chronic" illness. It's a list of the kinds of crap that I hear often, the kinds of mindless things people say because they don't know what else to say, because their brains don't have the power to express empathy in any meaningful form. Some of these things piss me off so much, and so often I have to smile politely and pretend that the shit that just came out of someone's mouth is actually meaningful.

I think the biggest single one on the list of 12 is the one I write about so often; "but you don't look sick", or some other inane variant thereof, where people think that you only look sick if you look deathly. My favourite variant is "Other than the wheelchair, you look great." It's like saying to the dead person in a casket, "Other than being dead, you look great." Before you tell me I look great, ask me how I am feeling. Then you will know. If I feel great, then you get off scott free. If I feel shitty, which is pretty much how I feel all the time, then find some other mindless drivel to spew.

The next most annoying thing on this list of stupid things to not say is what I call the inane comparison. The list has "My friend has real bad back problems but he is still working." The variant that drives me crazy is when people say shit like "I broke my leg once and I was in a wheelchair for three months. It was awful." All I want to say back is "Well, dick-head, you seem to be walking just fine now, so walk right the fuck out of here" Your temporary time in a wheelchair is absolutely no comparison to my life sentence. You always knew you would get out; I know that I will never get out.

Coming in a close, but perpetually stupid third, is the advice about how I should change my diet, or take such and such a vitamin, or do some weird, fake, stupid fucking exercise program. Don't you get it, you dumb shit, that stuff doesn't help me! Just because your aunt's neighbor's cousin's dog's third owner got better by rubbing eucalyptus leaves on his testicles doesn't mean my ALS will slow down if I eat like a koala bear. For those of you who talk about "eastern medicine", look up good old Chairman Mao. He died from ALS. All the mystical shit you call eastern medicine didn't manage to help him.

Then there is special mention for "I am praying for you." I appreciate that a for a great many people, prayer is a self-calming and deeply internal spiritual experience. I appreciate that, for those who can do nothing else, this at least makes them feel like they are helping. My problem is the irrationality of it; why pray to a God for healing when it was this same God who gave me this disease in the first place? Pray for acceptance, pray for peace; sure, but healing? I think the prize winner for stupid responses in prayer goes to the PALS who first posted the list. Some mutton head said to him that his ALS progression was slow because their prayer group prayed for him and they had a good success rate! Is it a competition, some sort of winner/loser kind of thing? Do I need to hire a better prayer group, one with a good success rate, so I can be relieved of this killer illness?

There are 8 other things you should never say to someone dealing with a chronic illness, or terminal illness. Check yourself and see if you know what they are, and if you have ever said them. Then, please, strike them from your lexicon. I don't need that shit. If you really want to be helpful, how about paying my mortgage for a couple of months?

Thursday, 8 January 2015

Three Devices Mechanical

There is no doubt I love to travel; I've spent much of the last couple of years engaged in the exploration of places known and unknown, so much so that I have at times thought I was more using my apartment as a place to store my stuff than a place to live. On the other hand, in the perversity that is true within all of us, I love to come home, to that place where my stuff lives, where I can once again spend time with family and friends, once again enjoy my kitchen, once again settle into my familiar routine.

When I come home from a trip, there are three things mechanical that make a great deal of difference to me. Certainly the people I love and the routine I live is important; these three things mechanical, however, top my list of excitement when I roll through my front door. These three things mechanical make all the difference in my daily life. I miss them dearly while I am away.

First, and absolutely foremost, at the top of my list, is the M-rail on my bed. Hotel beds are the bane of my travel existence. They are too high, poorly placed, without adequate wheelchair access, and on and on. The simple expedient of my M-rail makes my bed, and would likely make a great many other beds, accessible. I will never say "easily accessible"; nothing works that way for me now. What I will say is that with a simple M-rail, so many other bed problems would simply disappear. I think I might start taking it on road trips, ready for use, riding along in the back of my truck.

The second mechanical device that makes my homecoming a joy is the bidet seat on my toilet. This wonder of modern cleanliness is the highlight of what is a normal, daily activity for all of us, or at least those of us with something resembling regularity. This mechanical treasure allows me to keep my posterior clean, something that is very difficult otherwise, given that it is constantly occupied with me sitting on it. When I am away, I must use "alternate methods" for this cleaning. I often find myself embarrassed at the soiled washcloths I leave behind for unwitting hotel cleaning staff. Then I remind myself that they have, almost to a certainty, seen much worse.

The third thing that makes homecoming worth doing, while it is certainly not the last, is something I try to find in hotel rooms where and when I can; a roll in shower with a proper shower seat and properly placed controls. This is so hard to find; most hotel staff and designers just don't understand the challenges of showering or toileting in a wheelchair. To come home, knowing with a certainty that I can clean up, is a delight.

Three things mechanical, and yet they make such a big difference in my life. Were they not here, my home would be a prison, a misery of struggle and uncleanliness. I love coming home to the people and routine in my life; I treasure coming home to my three devices mechanical.

Wednesday, 7 January 2015

Arm Weakness

The best thing I can say about the decline in my arm strength in the last couple of weeks is that is has been remarkable. My legs went like this, going along with seemingly no change then a sudden drop in ability or capability. One week I could walk a block or two, the next week I would be unable to make it across a Canadian Tire parking lot.

Over the last week or so, I seem to have almost completely lost the ability to lift myself free of my wheelchair. It's almost as if my arms have gotten shorter. I can lock them and lift, but the clearance is less and less. It's gotten to the point where I cannot reasonably lift and transfer myself from my wheelchair to any bed at all, let along a high hotel monstrosity. I just cannot seem to lift off.

This is all a part of the continuing, invisible decline that I am going through right now. When people are with me a lot, they see it in the exhaustion and inability. For those who are just casual observers, they would not see much of a change, if any at all. For those who help me, they see the slow way I deal with hallways in hotels and sidewalks outside, the difficulty I have with lifting even smaller things, my complete inability to lift myself.

This part of my decline is so insidious that I appear unchanged; I still hear the occasional "other than the wheelchair" comment, although they are getting fewer and farther between. When it is finally noticeable, people will ask what happened, thinking I was doing so well. I am not doing well. My arms hurt constantly and they are increasingly weaker and weaker.

I am pretty sure I have reached the point where solo travel is no longer a possibility; we'll have to see. I am pretty sure that the boundaries of ALS are catching up with my boundless desire to live independently. I'm not giving up, not by any means. I am being forced, arm wrestled, into the acknowledgement of my condition. I can still do stuff, lots of stuff. It's just getting to another, more limited place.

The odd thing is that my arms are still probably stronger than a great many people I know. I can still drive, easily. I can still twist the top of a screw cap beer bottle where others cannot. I can still type. I'm not done yet.

Tuesday, 6 January 2015

Desparately Longing

"Have you ever found yourself surrounded by people somehow desperately longing for some sort of human connection? Knowing that your life is full of friends and family who care about you, but also knowing that you are actually utterly and completely alone? It's sort of debilitating in a way that allows you to keep moving. No matter how far I reach, there is no one within arms length."

I did not write this. It wasn't written by someone with ALS, nor even someone struggling with the kinds of physical or emotional challenges those of us cursed with some kind of illness face. No, it was written by a young person who struggles with something else entirely, that kind of aloneness we face in our modern, active world, someone who is surrounded yet alone, someone who has much in life, yet is missing that last, most important piece; a personal love relationship with that one special individual.

It's an easy feeling for many of us to understand, we singles who are seeking that other half, that person who makes us feel complete and whole. We struggle to find that right person in a world filled with "almost", or more likely "not even close." We, the single, seek to find Mr. or Mrs. Right, or even Mr. Right Now, without great success. It just seems we are surrounded by those who love us in the purest, filial sense, yet we are incapable of uncovering that person with whom we want to spend all of our time.

I see this around me a lot; I hang out with a lot of single people. Trust me, those in solid, working relationships would rather spend time with each other than hang around with singles. Those couples who enjoy the same pastimes and pursuits as I do, such as Trivia and Name That Tune, come as a pair. Even when one comes alone, you know they are there because they simply cannot be with that other special person right now; he or she is at work, or out of town, or otherwise unavailable.

It's a kind of tragedy, to be surrounded yet feel so alone; to be within a phone call or a visit from any number of people, yet to feel like your outstretched hand is untouched. It hurts to waken in the middle of the night to realize the other side of your bed is empty, to get up in the morning and make coffee for one, to sit at home in the evening getting ready for bed knowing that your last thoughts will be of loneliness, of desperate longing.

This is not a condition of illness. It is a human condition. We seek that which fulfills us. This is why I believe we were meant to be in relationships, for that unique kind of fulfillment you can only get through a truly loving relationship. We want it; we yearn for it. Yet for so many of us it remains completely, utterly, thoroughly elusive.

Monday, 5 January 2015

It's Cold Outside

It is winter in Canada. This massive land, beset with ice and snow, is once again huddled and bundled against its only true natural enemy, the cold. This is a land where weather begins in the cold, Arctic north, over the frozen wasteland of a vast northern sea, sweeping across the massive expanse of permafrost supported tundra. The Arctic air masses that form in our great, white north move southward, most often pushed east by the high peaks of the Canadian Rockies, yet often enough even moving over their massifs, high enough to carry their cold load down to the warmths of the Pacific coast, there to bring winter even to those who rarely see snow or ice.

These winds which begin in the north easily sweep down across the Canadian prairies, then further on eastward to the Great Lakes, where they pick up more moisture, delivering their load as snow, ice pellets and freezing rain on what are inevitably the ill-prepared below. No matter how many winters we have here, we all seem surprised at the first great gush of winter precipitation. It happens year after year after year. The problem is, of course, that we know it will come; just not exactly when. It is the great Canadian guessing game. Will it snow this weekend?

That is the other great truism in this country. Bad weather almost always begins on a Friday night, working up its energy and blowing out its contents over the weekend, with the worst of it happening on Sunday night. That way the Monday morning commute couldn't possible get worse. This includes the requisite power outages from lines broken by falling trees and school bus accidents on roads which host merely a suggestion of a plowed surface.

I don't mind the cold, or the snow, or the ice... mostly. I usually hide out indoors, or take it easy and use my truck to get around. In most cases my most difficult passage is across a parking lot filled with slushy ice and snow. Sometimes I park underground, making the whole process easier. Most times I am above ground, exposed to the sub-zero freeze as I struggle my way from my truck lift system, then get my wheelchair and finally close all doors. After this fight, I can head for the doors of the place where I plan to find warmth. I get there; it's just a bit chilly at times.

My only problem today is that I am in Toronto, trapped in a hotel room while Dan is off exploring coin shops in the area. He has his hobbies; I have mine. I have no car, at least not one with hand controls. I have no specific place to go or be. Instead I plan on watching the Junior Hockey Championships today, enjoying a cold beer, perched up on my bed here in my hotel room. My plans for travel today involve going absolutely nowhere. After all, oh baby, it's cold outside.

Sunday, 4 January 2015

Morning Sickness

I think I might be pregnant. I know there are obvious reasons why this diagnosis might not be true. I am male. I am nearly 60, clearly within andropausal and menopausal range. I haven't had sex in well over a year, which, in a coincidence which hasn't escaped me, is about how long I have been feeling this way. Certainly all of these things would mean I mustn't be pregnant.

Yet consider the symptoms. This morning I woke up slowly, with difficulty, and the mere thought of food nauseates me. Right now, as I sit here typing, I am looking for a nearby bucket just in case. Brushing my teeth makes me feel like I want to vomit. My belly is swollen and I feel bloated. Plus there must be something going on with my hormones because I feel like crying so often and I get upset so easily.

Those who know me well enough might try to suggest that this has something to do with over-consumption of wine. Alas, yesterday I didn't drink a drop; I was tired and didn't feel like it. Also, the whole food thing is annoying in that in my mind I am hungry but in my stomach I am not. On top of that, I ate yesterday, although lightly, plus had the requisite amount of water and even some orange juice.

Usually on mornings when I feel this way I simply go back to bed for another hour or two. The extra rest seems to give hunger sufficient time to overtake nausea. Plus it is not every morning I feel this way, just most of them. I think I am reaching the stage where eating is more of a chore than the joy I get from food. I love to eat; this is such a sad stage for me.

My real hope lies in the day. As the hours pass I will become hungrier and more willing to tolerate the discomfort of eating. As the hours pass I will become more alert, more awake, more willing to take risks. As the hours pass, I surely will smell the smell of food from somewhere, triggering the craving within me. At least I hope so. This morning sickness sucks.

Saturday, 3 January 2015

Not Ready For Action

I am beat, absolutely bushed. IT's already 4:30 PM here in Waterloo, Ontario. My day started at 9:00 AM although I did manage to beg for another half our of sleep from Dan. We were expected at the church by 11:00 AM. Dan wanted to have breakfast and he wanted to be sure I was up and about. I understand his concern; I had been up until about 3:30 AM the night before and there was certainly no guarantee that I would get going all on my own.

If you do the math on sleep and wake-up, you will find that I got about 6 1/2 hours of sleep last night, about half of my daily average. All day today I have been sluggish, slow to go and quick to stop. Even my typing right now is slower than normal. As a healthier man, or perhaps just a younger man, I could easily handle a busy day after a short night. No more. Now I need that 12 hours or so of rest each night if I plan on functioning effectively the next day.

The day itself was busy enough that a nap was a near impossibility. I did manage to sneak away from the luncheon; fortunately it was being hosted at the hotel where we are staying right now. I headed up to my room to use the washroom and thought to myself "Sure, just climb into bed and have a nap." Unfortunately the lack of sleep has affected my strength and when the time came, my arms were too weak to lift me up to the high mattress, the pillow top kind that is high enough where I can only get in if I work hard at it. I am too tired to work hard, so I just went back to the reception.

Now that it is over, Dan is here in the room too. He will help me get into bed, something others have had to help me with when traveling. It's part of the deal these days; I simply cannot do everything for myself any longer. There are a few things like that when I travel, like wanting a push rather than pushing myself, or asking others to carry my luggage. I am getting weaker; it is becoming more obvious and is impacting me more significantly.

Fortunately through all of this I have my friends, those who stand beside me, walk beside me, push me in front of them, as I make my way through this journey. I just can't do some of this stuff alone anymore. I'll go to bed early tonight. I suspect I will sleep about 16 hours or so. Then tomorrow will come and I will be ready for action once again.

Friday, 2 January 2015

Travel Limitations

I've been traveling a lot over the last couple of years, since I was diagnosed. Travel, whether by road or air or boat, is something I have always loved to do. Given that I have been given a rough bill of goods to handle lately, I've been doing what I love most, travel. I like to see new places, to revisit old places, to experience life differently. It also allows me to run away from home for a bit, to pretend that ALS really doesn't matter to me all that much.

This trip is different. I am here in Waterloo, Ontario for a purpose, for the funeral of a friend, Marianne, mother to Anisa, one of the close friends in my inner circle. As such, certain parts of this trip are proscribed and other are prescribed. Today I am to attend at the funeral home for the "visitation". Tomorrow will be the funeral mass at a local Catholic church. After these required events, Dan, the fellow I am traveling with, and I have an open schedule until Wednesday evening, the nearest time we could get a flight back to Calgary.

Dan will want to spend as much time as possible with Anisa; they are a couple. That leaves me with a lot of free time here in Waterloo, or possibly up in Mississauga. Once the funeral is over, there is really no need for me to stay here; I can get a hotel closer to Toronto, perhaps even in Toronto. One the other hand, if Dan and Anisa have time and want to explore the local area, I am all for that too. It's one of the great things about free time, be it traveling or at home; I can do something unexpected.

There is one small fly in this ointment. Transportation. Dan and I have rented a car, one with standard controls. We tried to rent one with hand controls but there was nothing available on short notice, that short notice being demanded by the timing of Marianne's funeral. While I am certain I can depend on Dan to be good and polite about driving me from place to place, he is here for Anisa, not for me. There will almost certainly be moments of compromise and crossed purposes.

This morning was a great example. He was up and ready to go while I had not yet written or had a cup of coffee. I need both of these things to start my day properly. It's more want than need, more habit than necessity, yet they are important to me. By way of compromise, he went on ahead to the funeral home and will come get me afterwards. I am sure there will be other things.

I hate to be a nuisance like this, especially at a time like this. Those who travel with me understand, and get to see, the challenges for me these days. I try not to let them get in the way. I am going to try harder over the next few days. It will still be a good trip, if started for a sad reason.

Thursday, 1 January 2015

Another New Year

It is the first day of a new year, or at least according to our Julian calendar. In my mind, this is just another one of those artificial marker posts we, as human beings, seem to need in our life. Watching the calendar, especially in an agrarian society, is a significant and important task. This date, January 1st, while long being celebrated as the start of a new year in western culture, is as artificial as any other year. The closest thing we can attach it to is the winter solstice, a day when days start getting longer; only that happened almost two weeks ago.

Perhaps the most significant thing about today for me is that it marks the fifth calendar year in which I am living with ALS. My symptoms, subtle as they were, first started to appear in early 2011. I was diagnosed in late 2012. Then came 2013, followed by 2014 and now on to 2015. In each of these years I have seen marked change in my physical strength and abilities. I don't doubt that this year will be the same.

There are already two frightening elements I am having to contend with in this calendar year. First, and most significantly, this is what I call my 80% time. The end of this year marks the year in which, with ALS, roughly 80% of PALS would be dead. It's kind of a count down year. I might make it longer, in fact I hope to make it a lot longer. The reality, of course, is unknown; I am just going to have to see what happens.

The next worrisome element, the more practical element, is money. In a few months my RRSP will run out. It was kind of the plan that it would last about 3 or 4 months shorter than my projected life expectancy. To be honest, by this time I was expecting to be in far worse shape than I am. I should be glad that things are moving along slowly, although they are most certainly moving along. It's the vagaries of life that would have me get this one wrong.

I don't think I would change that plan all that much. I have lived a terrific couple of years. I hope to live another interesting year. I know the challenges, or at least some of the challenges, it will put before me. I may have to sell my home. I will almost certainly lose my truck. I will be compelled to reduce my lifestyle. My quality of life will continue to decline.

Even with these challenges, I still plan on living as much of life as I can. After all, the other choice is not all that appealing yet.