A Very Bad Night

I had a rough night last night. It wasn't the evening part; the evening, late as it was, was great. I went out to a musical dinner theatre show with a group of people, some of whom I know and others who I don't know. Then a buddy of mine came over later and we sat up and talked until about 1:30 AM. So it was a late evening, but definitely not hard.

Then, at about 4:15 AM, I woke up shivering. It was probably an 9 on the human Richter scale. I was shivering violently, uncontrollably. To top it all off, my bladder decided that this was the very moment it needed to empty itself, yet the part of me in charge of that process was unable to gain control of the body parts needed to complete the process. I sat up, and could not deliver. So there I was shaking like mad, shivering like crazy, desperate to go pee, and unable to do so.

The way I chose to approach this problem was to start with the shivering first. I pulled myself back into bed and back under the covers, seeking the warmth that I knew would slow the shivering. I also got into my own head and calmed it, seeking to have my body feel the safety and warmth around it. As nature would have it, I dozed off, my mind reclaiming peaceful slumber from rattling wakefulness. Then, as I was finally settling down, my bladder and the rest of my system decided it was now safe to release its contents. Yes, it happened.

I managed to gain control of the process somewhat but the damage had been done. I pulled the sheets from my bed and then went to the bathroom to finish what my sleepy corpus had started. Yet in this process the shivering started again. I was rattling once again, a human earthquake reaching from shoulder to seat. Oddly enough, my teeth were not chattering nor was my head cold in any way. My feet were freezing but this is more an effect of blood flow than anything else. ALS has stolen the muscles in my upper leg, the muscles that pump blood into, and out of, my lower legs.

After doing what had to be done, I got back into bed and pulled myself under the covers, seeking to be warm once again. My quilts, the combination of the one my Mom's friends made for me and the one that I bought for my bed, did the trick. As warmth came the shivering settled. Then I slept. As I awoke this morning I still felt a small shiver and even as I type now there is a faint quivering in my torso. Mostly this event has passed and I am truly grateful for its passing. Perhaps I can have a decent day today, a day that makes up for my very bad night.

Life Lessons In Construction

I slept on my camping cot in my living room last night. It's only peripherally related to ALS. I can still get in my bed; nothing bad happened. I just can't get into my bedroom thanks to the renovations being done to my apartment to make it more livable. Of course the process of making a space more livable often includes tearing things down and starting over. That's true in life, not just in renovations. Sometimes in order to get to a place where you can live, you have to tear apart your old life and start over.

For my renovations, there are a couple of key areas we are changing. The biggest thing is the bathroom, making it larger and putting in a wheelchair shower. Fortunately that is a relatively enclosed space. If you don't count the mess from construction, I get along in there pretty well right now. The second biggest thing, and perhaps the most difficult part of the job, is widening the doorway to my bedroom.

You might wonder why it is so difficult to simply widen a doorway. The difficulty arises because the beam that holds up the floor above me runs across the hallway right at my bedroom door. In order to widen that area, we need to move the post holding up the beam and replace that beam with a larger one that is attached to a crossbeam on the other side of the hallway. This is a major piece of construction.

Doing this work involves bracing my ceiling up; my ceiling is the floor for the apartment above. After the bracing went in, my brother Jim, who is doing all this work for me as his gift to me, along with my friend Mike who is coming again today to help finish this job, had to hack and cut and hammer and chisel out the old beam, along with the roughly 1,000 nails that were used to secure it. The removal of the beam, a task that was originally thought to be fairly simple, took three hours.

Jimmy came to the end of that task yesterday and needed to stop. The day was done and so was he. So we left the bracing walls in place for the night. Unfortunately, given that the now missing beam runs across the hallway and terminates on a post that is the end of my bedroom doorway, the temporary bracing walls are in place on either side, blocking both my access to my bedroom and my bathroom.

The bathroom part was easy. The mall across the street has a wheelchair friendly bathroom and I still have my urine jug; I just don't have a lot of privacy for going pee. The bedroom part was fairly easy too; Jim got my pills and clothing for me and I setup my cot in the living room. I like sleeping on my cot; it reminds me of camping. It's comfortable, sturdy and relatively easy for me to get into and out of. It's not great for lounging around or reading in bed, but then again I am back in my own bed tonight.

Think of the life lessons in all this. Sometimes the easy looks hard and the hard looks easy. You can never tell how tough something will be until you are personally in the midst of it. The loss of luxury doesn't mean you can't be comfortable. When things don't go as planned, you are better off looking at it as an adventure instead of a failure. For most problems, the solution is right there with you if you look for it.

Decisions, Decisions, Decisions

Some decisions are easy to make; some make themselves so you really can't even call them decisions. Others are hemmed in by time and circumstance, making the decision swift and while not necessarily painless, once made you move on. Then there are the really tough decisions, the kind where you are wracked with self-doubt, wondering if this is really the right thing to do. These decisions, these moments of torment, are enough to distress even the most healthy, let alone those of us facing additional burdens. But then again, we all carry burdens, many not so visible as mine, many unknown to those around, hidden within the folds of daily life.

For me, the easy decisions are the practical ones, the ones where necessity simply places a choice in front of me, leaving me to weigh the pros and cons, and then move in the direction most likely to produce the desired result. These are the business decisions, those with limited impact. I simply look at factors like cost, utility, duration of use, quality and such. Then, I decide.

The decisions that I find tough are the ones that impact my emotional space, the decisions that leave me in a place where I wonder, pondering the outcomes of the alternative, worrying about what might or might not happen. These decisions almost always have to do with my illness these days; in fact almost every decision in my life these days, from where to put the coffee in the kitchen to where I go shopping or where I get gas for my truck, is driven by the outcomes of ALS. Most of these daily decisions are the easy, practical ones. Put the coffee where you can reach it; go shopping where they have a power shopping cart; get gas at a full service gas station.

Then there are the really tough decisions, the lifestyle decisions, those affecting not only my life, but the lives of those around me, those who care for me. These are the really hard decisions, not because I have to make them but simply because they would not have to be made were it not for ALS. It's just harder to decide even though the outcome is inevitable. So many times I wish others could make these decisions for me, but I am the one with the disease, I am the one who has to live, and die, with the outcome. I have to decide.

Changing My Bed

When I came to Calgary to stay, my fourth coming to this place I might add, I had made the commitment about where I wanted to live, and how I wanted to live. My first three arrivings were marked by their temporary nature; temporary apartments, temporary furniture, temporary transportation. This last time, in the fall of 2012, I planned on making Calgary my home.

In that effort, I finally went out and bought real furniture; not furniture for free from Kijiji or low priced from the thrift store, not furniture I hated but was sufficiently cheap that getting rid of it would be easier and less expensive than moving it back to BC or into storage. I bought my Ikea Phoang chair, the one in which I can no longer sit. I went out and bought the leather couch and chair I had always wanted. I went out and bought a spare bed for my guest bedroom. I went out and bought a classic looking bed with headboard and footboard along with matching dresser for my own bedroom. This was to be my home, furnished the way I wanted.

When I bought the mattresses for my own bed, I bought comfort and quality. I bought a good, solid box spring to go on the bedframe. I bought a soft yet firm European pillow top mattress to rest upon. All of this was done with a view to living with these purchases for a very long time. Since I was going to be here a while, I thought, I should get stuff I can enjoy for that while.

Unfortunately ALS is once again having its way with me. I am rapidly reaching the point where I can no longer safely transfer from my wheelchair to my bed. That solid box spring and comfortable EuroTop mattress rise up about 8 inches higher than the seat of my chair. In order to get into bed, I must stand, or at least force myself vertical in a pale imitation of standing, then rotate and slump backwards onto the bed. As the weeks and months have gone by, that slump has been getting more and more difficult. These days I have to hold on tight to the M-rail on my bed just so I don't slide off after slumping on.

Of course the solution to this comes in two parts. First, at this stage where I can still do some sort of sideways transfer, I will need to get rid of the box spring and replace it with a small, shorter, pad-type box under my comfy mattress. This will do while I can still make the trip across. However at some point even that will become impossible. At some point I will need a lift to get into and out of bed. At that point I will probably spend a lot more time in bed and will need something adjustable, something where I can make the bed sit up on my behalf. At that point I will lose my bed, having it replaced with the cold, hard frame of a hospital bed.

I'm going to have to change my bed.

The Bear Got Me

I got up early this morning. I woke up early, seeing the warm orange glow of the rising prairie sun pushing its way through the thin curtains covering my bedroom window, watching it spread, a lineal stain squared by the panes of window through which it must pass, changing in hue and intensity as the sun worked its way up past the distant horizon and into fullness. First orange, then peach, then a bleak, soft yellow and finally, the cold white that is the morning chill on the plains.

It was a hard day yesterday, one that drove me to bed early from a combination of physical, mental and emotional exhaustion. The day itself was not what was hard. I awoke late yesterday, having been out the night before until well past midnight. I gave myself the luxury of sleeping in until near noon. I did some work yesterday, stick-handling some systems issues and changes, reviewing reports and writing some documentation. My total work day was a mere few hours, yet that was enough for me to feel it.

Then, having been housebound for the day, I decided to go grocery shopping. I must confess that this was a marginal event, a decision made merely to get me out, away from the bounds of these four walls, free, or something resembling free if you consider that I require both wheelchair and truck for this kind of expedition, for at least an hour or so outside. That's where the trouble began.

The shopping was easy. It was coming home that was hard. If you read my Facebook postings you will have seen it. I came home from shopping to find that my two neighbouring parkers had inadvertently parked in such a manner as to make my life "interesting". While they were completely parked within their spots, the had moved over towards my spot by perhaps as little as an inch or two. The one on the left had moved slightly right, and the one on the right had moved slightly left.

This peregrination of parking had left me limited space. If I parked so that I could get my wheelchair out, I could not get my groceries out from the passenger side of my truck. If I parked so that I could get my groceries out, I would not be able to get my wheelchair past the big cement post at the end of my parking stall. I was left with a choice, so what I chose to do was go up to my apartment for my shopping cart. My plan was to come back downstairs, pull the truck forward enough so that I could get at both sides, unload my supplies into my cart, then pull the truck back into the parking stall; tedious, but workable.

I went up. As I came to return and come back down, the elevator in the building, the one elevator in the building, decided that it was tired and simply refused to come when called, rather like a recalcitrant dog in a game with a ball. When it finally did respond, the elevator car stopped about a foot higher than floor level, a step impossibly high for a crippled man in a wheelchair. So there I was, stuck on the third floor with my frozen pizza and cold beer gaining headway in the temperature race, down in the basement parking lot.

At that point I simply gave up. There is no way to beat this stuff sometimes. I knocked on the neighbour's door, asking them for help. The octogenarian husband and his injured wife limped their way down the stairs and retrieved my store-bought booty. I sat in my apartment, feeling more and more crippled, more and more broken, fully handicapped. I sat there thinking about what I have become, and what lies ahead. I sat there, helpless while two very kind senior citizens trooped up and down stairs that now defy me, carrying with hands that I will soon lose, walking with legs that have left me.

Some days you get the bear; some days the bear gets you.

The Kindness Gene

When my Dad was sick, late in the summer of 2010, I tried to spend as much time with him as I could. Certainly my brother Adam carried more of that load than I, flying regularly from Louisiana to BC, staying for extended periods with my Dad. I did what I could, spent what time with him that I had, staying with him when I could. My Dad was failing by then, well along the path to the ultimate end we all face.

In one of my visits, perhaps in mid-July, he said to me "How long do you think I have?" I considered for a moment, calculating what I knew about his multiple cancers, thinking about the numbers, pondering what the doctor had said. Then I answered, "Dad, I think you will see August, but I wouldn't count on September." He went quiet. Then, after a few minutes, he turned to me and said "I wish you hadn't told me that."

I think about that moment a lot, what he must of felt like to have someone he trusted say such a thing to him, to know that those who loved him thought he had so little time left. I recall so strongly the sorrow in his voice, the sadness of his response. Then I think about the way he raised us, the lessons he taught us. He never taught us about kindness; to him life was a harsh reality. In fact some days I think we are missing the kindness gene, my brothers and I. I know that is not true; I know that we can be kind to one another, yet that is not our "go to" place. We deal in the harsh reality, presenting the facts as we see them, often with no softening of the blow. We present our view as fact and usually not a compassionate one.

I wish I had learned more kindness as a young man. Perhaps it would have helped my marriage. Carla certainly knew what kindness was; perhaps that is, in part, why I married her. My Mom knows what kindness is, and it is often with sadness that she looks upon the way I interact with my brothers. We seem to struggle with giving each other the emotional, sensitive support that runs in other families, as if it were some sort of unnatural act. We try, doing what we can for each other, in the practical ways, yet we are truly rather hit and miss on the emotional side. Often we go to the brutal, unadulterated reality first.

Perhaps I am being too unkind to my brothers; kind of makes sense that I would do this. I, too, seem to be missing that kindness gene. I wish I had done better in this regard, especially with my children. I wonder if her innate kindness is what causes my children to prefer their mother's company; I know it had that effect on me. I wish I had been better able to show my friends the kindness they have shown to me, the natural care and easy consideration that marks their interactions with me. It's not to late to try, at least in some respects, and try I do. But I cannot go back and change those lost years when a kind and tender father would have been good for my children.

Notes From PALS

This is an important blog post, one which I will begin with a plea for forgiveness from all those who may find themselves quoted here without attribution. It is intentional that I leave names out. We have a story to be told, but it is not the story of one of us, it is the story of all of us. I am sorry if you disagree or if I have broken any presumed code of silence. As far as I know, PALS don't do omertà, at least not all that well from what I've seen so far. It is also a long entry, written not by my hand, but by the hands of many.

I am not the only person on the planet with ALS; there's lots of us. We talk to each other, mostly via Facebook but many in person. We visit one another, members of a special club which one of my friends described as the kind of club "people are dying to get out of." We ask about symptoms, share information about treatments, distribute news about research and new drug developments, topics ranging from mundane to meaningful, silly to sublime, rude to reflective. Often, most often, we simply commiserate, supporting one another through one of the most difficult voyages anyone can imagine.

Those postings, those thoughts and feelings from other PALS, strike me on a regular basis, hitting hard, forcing me to recognize that what I deal with is common to us all, a shared experience. I wanted to share some of that experience with you, so I grabbed the first six postings I could find on an ALS group, just so you could see. Some of these postings speak for themselves, with others I will add a note or two. Each of them is a story on it's own, a story not just for me but for hundreds, even thousands, of PALS.

"I am suffering with dry scalp. Any body else? What can be done for this?" There were many responses to this post, mostly focused on what to do. The most powerful was "Wow I was wondering about all that. Could it be all the drugs?" You see, while ALS itself is essentially untreatable, there are any number of other conditions that come along with losing your muscles, things like muscle cramps, dietary insufficiency, respiratory insufficiency, DVT, wheelchair rash, swelling, and on and on. So some of us get lots of drugs, and these drugs all have side effects.

"For those of you who believe in the power of prayer please join me in unity of faith for the healing of our good friend (name withheld). He has been hospitalized since Saturday critically ill with bilateral pneumonia. Nothing is impossible with God." We see this every day, not just for one of us but often for more. This disease ends in a slow, creeping hospital bed bound death. That is just our reality.

"Welcome (name withheld) to the group. His family has FALS and he has the SOD1 gene. He hasn’t been totally diagnosed yet but knows what’s coming down. I will say it again. I hate FALS." In response, "Thank you, (name withheld). I have been through this a few times with relatives the last 30 years. Unfortunately, I know exactly what to expect." The course of disease for PALS, the prognosis, is entirely predictable. How much worse must it be to know that you are more likely to get it thanks to a family gene?

Regarding one of the PALS in one of our groups... "He has purposely gone off food and water has he not?" And in response..."Yes.  I've seen other people take the same path. All I really know is that he is at hospice. I spent a week with my father-in-law at the hospital and then hospice. I talked to the nurses, they really know what they're doing and they are compassionate. It's amazing how well they are able to check into a patient's status. I do not know what the various procedures are for ALS patient end game. "

"I feel like I'm going downhill very quickly. Upper body all weakening, breathing very shallow . Eating well in small sessions but decreased urine again. It seems I'm drinking fluids but apparently not enough. Was in ED last week for IV fluids and sodium was low. That's been better. I signed up for hospice this week. Have waffled on feeding tube, but had decided early on to let things take their course. I hope my decision doesn't lead to a lot of distress as I let things go. I'm probably over reacting and will be on this earth a lot longer. Good or bad." As PALS we face heart-wrenching decisions like this every day, decisions not only about how we live, but how we die.

And finally, this... "If you are newly diagnosed with ALS please as hard as it is try not to pay attention to the death. Internet is a great tool to educate yourself. However you can be mislead. Just know there is great support. Try not to focus on the negative and live life strong. Never give up!"

ALS is a terrible disease. With its terror it brings out bravery, humour, pathos, fear, love, hate, anger and any other emotion you could care to name. It makes the small seem large and the large seem small. It forces us to focus on living, not on dying. We will live for years, some of us. We will live out our days, some of us. We will all die, in only a moment. The dying is easy; the living is hard.

No Bathroom, Almost

I just washed my hair in the kitchen sink; try that from a wheelchair, it's a messy business. My bathroom is in the midst of renovations and all I have in there these days is a toilet. Soon even that will disappear as we move into the process of putting in a new floor, a raised toilet with a washing system, wheelchair accessible shower and sink. Of course all of this is driven by my life in a wheelchair, and all of that is driven by the depredations of ALS.

Living rough doesn't bother me all that much; I've spent plenty of time on a small boat or in a hunting camp. Not having all the parts of my bathroom working is not a big deal. There is a toilet and for that I am grateful. I have a kitchen sink for morning cleansing and all day hand washing. When the toilet goes, I will still have my ever present urination jug for the few days that the toilet is missing, and, when needed, I can always head across to the mall where they have a wheelchair bathroom.

What does bother me is that I have to do this at all. These renovations are another example of the hidden costs of ALS. There are no government grants for this, or at least none that I qualify for. I made too much money last year and am therefore not sufficiently poor so as to need government assistance. The pace of ALS is sufficiently fast that it taken my legs in less than a couple of years and will take the rest of me soon enough. Most subsidy and other government programs are designed for longer term illnesses. PALS die at a prodigious rate, usually in less than a handful of years from diagnosis, so we just go too soon. At least I get to some sort of tax deductibility for the costs as I am now registered with the government as being disabled.

Nevertheless, I need these changes and will take the money out of my ever dwindling savings. It's a choice I made, to try to live as comfortably as I can for as long as I can on what money I have. It's a choice I made, to make a home where a wheelchair fits. I could have chosen to move; there were apartments that were somewhat wheelchair ready, mostly in seniors care facilities, but would still have needed some renovations. I could have gone into one of those hospitalized care homes where I could sit around simply waiting to die. Instead I choose to live as much as I can, for as long as I can.

There is an upside to this. My brother Jim is doing a large part of the work for me, driving down from Edmonton, a three hour drive, spending much of his week here and then going home for weekends. Here he labours, tearing down and putting up walls, taking away the rubble, working with sub-trades, and eventually he will even do the painting and trimming. All of this he does as a gift to me. I am fortunate to have him, and appreciate all that he is doing for me. And I get to see my brother; that's even better.

I Hate Doing My Taxes

I hate doing my taxes. Even the contemplation of dealing with taxes is enough to send me into an emotional tailspin, spiraling downwards, my spirit and psyche trailing behind me like the smoke and flames from a defeated aircraft crashing from the destruction of an aerial dogfight. My record keeping is a mess, my receipts distributed like snow on the Arctic barrens, the papers stacked and shoved into boxes in the vain hope that a magical book-keeping fairy will take pity on me and carry me through this hated annual ritual while I, like the princess of fable, sleep undisturbed by the devil of these details.

It's not that I mind paying taxes; quite the reverse, the money is not the real issue, although I am not without a wistful gaze as my cash heads east. After all, there are limits even to this incredulity. While I am not truly joyful in the sharing of my income through this enforced redistribution system, where government nabobs and elected officials make themselves wealthy by making the public poorer, I recognize that taxes cannot be escaped. They are a necessary evil, and a perpetual one at that. Napoleon was right. I will pay my taxes and while there may be inequities in the system, they will not stop me from my responsibility.

In fact, as a Canadian and in my present condition, I am doing fairly well with respect to the tax system. I think for the first time in my life, this year I will be a net recipient of government largess. Last year, not so much. Now, however, for the first time in my life, this year the government will spend more on me than I will on it. I know that others are paying so I can get world-class health care, albeit with the odd bump in the middle. I know that others are paying so I can get my minuscule disability pension. I know that the care and concern shown to me by our government is simply my expected return on what has been over 40 years of giving more than I got.

No, it's not the taxes that bother me although I do have some limits there too. None of us wants to pay too much. It's the paperwork, the tracking of receipts, the filling in of forms, the reporting; that's where my knickers get in a knot. Over the years I seem to have developed a type of "form related dyslexia", where documents requiring completion frighten me and supporting documentation and record keeping escapes me.

My tax files and records are a mess. I greatly fear that there will be no tax fairy appearing in a twinkle of stardust to turn my pumpkin into a carriage. I will, with all the attendant stress and anguish, once again be forced to face that which I fear the most - explaining my finances to the government. If anything is going to kill me before ALS is done with me, it will be the stress from this annual exercise in futility. It will be done, badly, more expensively than needed. I will delay. I will dawdle. I will defer. I will procrastinate, linger, loiter, postpone and put off. Then, hatefully and bitterly, I will comply. It will exhaust me.

I Don't Know What To Do With A Compliment

Last night, while at my weekly Trivia event, one of the fellows who comes regularly and with whom I have spoken a few times told me he thought I was a great writer. I felt uncomfortable at hearing this, uncomfortable at being complimented. I pushed the compliment aside and moved on with what I was doing. I regret that; that I would not only dismiss a genuine compliment but that I would dismiss it so fully as to not even properly thank the person who proffered it.

I don't understand why compliments make me uncomfortable, why I feel unworthy of recognition in this way. Certainly I don't mind recognition for my accomplishments, yet somehow I feel that my writing is not really something worthy of that same recognition, as if it was not so much an accomplishment but a fallacy, that I really am not doing much by doing this.

In some ways I feel very certain about what I can do and how skilled I am. There are things where my confidence level is not only high but most likely out of proportion too. I am comfortable walking into any room full of people, knowing that I will easily make my presence felt, easily mix and mingle, easily associate and do well. Of course there are times when this proves untrue, yet I feel I can do it well. There is very little I fear when it comes to land and sea, very few places in the woods or on board ship where I will not go.

Yet should those things be noticed, should someone compliment me on them, I am placed at unease, unwilling to take what in many cases is such a freely offered gift. When I look inward at this, I wonder how much of it arises from my childhood. My Dad was not good at recognizing achievement. When I would do well in school, he would be quick to point out those who had done better. When I would work hard or showed some physical strength, he was quick to say "You'll be a man before your mother yet." When I figured out something particularly difficult in my work or in my career, something I was proud of, he would respond by saying "If you're so smart, how come you're not a millionaire?"

My father would play the comparison game, pitting one sibling against another. Even as adults he would do this, spending his time with me by telling me how great my brother Adam was doing, how successful his career was, how much money he made, where he had been lately. He talked about Matthew and his radio stations, Peter and his international travel, Jim and all the houses he owned. Yet he regularly dismissed me and my accomplishments. As he aged, my Dad skipped a generation, focusing his lauds on my daughter Kate, creating a virtual shrine of pictures of her in his living room, as if his other grandchildren, mine and others, didn't even exist.

I really can't blame my Dad for this. I am a grown man with failings of my own. I suspect my own son will remember the slights which I have directed towards him, the judgments of him which I have made unfairly. I am old enough to know better; I regret these things. I can still recall my Dad telling me of his own father and the lack of recognition in his life. My Dad would tell the story of his Dad like this; "When I got 99% on a test, my Dad would ask why I didn't get 100%. When I got 100%, my Dad would say 'Must have been an easy test.'"

Tragedy surpasses generations. The sins of the father truly are visited upon the son. I hope my son learns this lesson earlier than I, and can escape this cycle. I hope he can, with humility and gratitude, accept a compliment. I wish I could.

What's Likely

Insomnia seems to be fairly common amongst PALS; I hear about it on a regular basis. Contrapunctually, PALS need more sleep and suffer from high levels of exhaustion. So even though we try to sleep more, even though many of us are tired all the time, we have trouble sleeping at nights. Last night was a good example of why and how this can happen, and how it impacts my life.

Last night wasn't a bad night. In fact it was fairly good. After going to bed at 11:00 PM, having seen the Calgary Flames lose yet another hockey game, I settled in and tried to sleep. It didn't happen, so out came one of the many books I keep by my bedside just for this purpose. The current tome is a massive dissertation on the factors driving Europe towards the Great War; an evaluation of social, military and political conditions which beset the key players between 1890 and 1914. Oddly enough, material like this, dense and convoluted as it can be, is not always sufficiently hypnagogic. Last night was no exception; I read until around midnight, at which point I once again sought the land of slumber.

Then it started; the thinking, the wondering if, the worrying about, the planning for. My mind started latching onto things, mentally masticating madly on each, pulverizing my thoughts with a combination of intellectual and emotional cannonades, all while pretending that some pale imitation of sleep would eventually arrive within. I was awake and my mind was active.

I thought about how ALS has screwed me royally, beyond measure. There, in my bed, by myself, having spent a whole day without human contact, I thought about how alone I am at what is most certainly the most difficult time of my life. I wondered if, by some miracle, I might meet someone who would love me for who I was, where I was, how I was; it's not likely. I contemplated how my career had come grinding to a halt, stolen from me by ALS, and if, by some miracle, I might find a way to work again without wearing my body into further loss; it's not likely. I worried about my financial situation, driven down by the absence of income and the demands of living with ALS, things like renovations, wheelchairs, truck modifications, and wondered if I should buy a lottery ticket. I might win, I might get lucky; after all, I am due for some luck, right? It's not likely.

What is likely as that my life will continue until it stops. I will continue to be alone against this disease even though many are with me. I will work, as best I can, but never in the way I could in the past, never doing the fascinating and interesting kinds of projects I did before ALS. I will have to find a way to survive on a severely reduced income, a pension of small numbers, having lost the last 10 years of my working life. ALS will continue and then it will be done with me. This is what is likely.

Eight Pointless Months

I did another Functional Rating Score test online yesterday. I do one each month at around the same time of the month. This gives me a track of how I am doing. The Functional Rating Score, or FRS, measures your physical changes with ALS. It does not measure psychological or emotional change, something that the medical community is more and more coming to recognize as an important part of this illness.

The online test is subject to variation, as the assessments are patient based and subjective, however I am consistently impressed with its correlation to the clinical assessment of FRS done by the neurologist whenever I go to the ALS clinic. When I was first diagnosed my clinical FRS was 40 and my FRS in the online test was 38. In my last clinic visit earlier this month my FRS was rated at 32 and the one I did yesterday as 33. It's not perfect but it's pretty damn close.

It's also an important point to make that my FRS is not a predictor; it is simply a measurement of where I am at a given point in time. There is certainly a trend path which all ALS patients follow and that path is almost invariably downward. The FRS is what they use to measure the rate of downward in the past. The other challenge, particularly with the online FRS, is that it is a fairly coarse measure, looking at rough approximations of key points along the ALS pathway. The finer points, those that might indicate progression or change, can only be seen by the patient in daily life, or by the neurologist. For example there is no rating on the FRS for increased clumsiness, per se; there are questions around handling of utensils, cutting food and dressing which would cover this but no direct questions about it.

What has been interesting to me, and my neurologist, has been the relative stability of my FRS since last May. When diagnosed, I had an FRS of 38 using the online tool. My FRS fell a bit faster than the one point a month that is a "typical" progression rate. In May of last year, my online FRS rating was 30, a full 8 point drop in less than 7 months. Things were not looking good.

Then something happened, or rather something didn't happen. The expected progression into my upper body did not immediately appear. In fact the progression seemed to slow dramatically. While there have most certainly been changes over the last 8 months, one could look at them more as consolidation of pre-existing gains by the disease as opposed to significant changes in my upper body. There are things happening, but they are more in my legs; my arms are showing early signs, but they are only measurable at a clinical level as opposed to an observational, subjective level.

My FRS score was 32 yesterday. That's essentially the same as it was last May. It's been 8 months, like this; 8 pointless months. In this case, that is a good thing.

How Cool Is That?

My friend Brian is getting married. This is really good. He's met a wonderful woman and they both love each other. Brian is a kind man, funny, quick to laugh, gentle and easy going. He has had his struggles in life, including finding the kind of woman who would love him and whom he could love back. Tanya, his fiance, is equally kind and funny, that calm reassuring kind of person whose care and affection are readily apparent. It's no wonder she is a pediatric nurse; she has love to spare.

It was interesting to watch them over the last year, seeing them go from tentative first meeting to living together, and now to making a life long commitment to each other. Of course I saw most of this from Brian's side initially. Then, as Tanya became part of his life and by extension part of mine, we talked about things that mattered to her, and I learned more about the picture from her side.

Brian is a gentle soul; I don't think I have ever seen him get angry. He laughs and talks in a voice that seems completely void of harm. When he has something serious to say, his voice softens, almost becoming tentative, as if he is not sure that what he is saying is even true. That's what his voice sounded like last year, when he came over to talk, and said "I've met someone." So he told me about Tanya and I asked all my usual nosy questions. Then he said "I would like to bring her over to meet you." That's when I really knew it was serious.

Things got even more serious about six months later when he and Tanya decided to share a home. Actually it made sense; he was at her place five nights a week and she worked overnight for at least three of them. They just enjoyed sharing each other's space. They are comfortable together, supportive of each other, and yet still strong as individuals. It's the kind of thing we all hope for.

A few weeks ago we talked and his voice got that tentative, cautious sound to it again. He said "I'm going to ask Tanya to marry me." I nearly shouted "Congratulations" and with that his voice rose in pitch and strength, saying, "She hasn't said yes yet but we've talked and I know she will. I want to do it in the New Year." The other day, actually last weekend, he popped the question and she said yes. Of course she said yes. How could she not say yes to a man as kind and good as Brian?

Then last night he came over to watch a hockey game with a few of us guys. He came early. I was suspicious of this; Brian's sense of timeliness is rather like his sense of direction. This is the guy who set off for the mountains by driving east and didn't figure it out for an hour or so. Brian never comes early. He came through the door and was barely in before he said "There's something I want to ask you." He used that voice, so I knew it was important. He went on; "Would you be my best man?"

I said yes. Of course I said yes. How can you say no to someone as kind and good as Brian? I am not only flattered and honoured, I am thrilled. Now, at 58 years of age, my life nearly over, stolen from me by ALS, for the first time I get to be a best man. How cool is that? This is a real gift, something I will treasure from someone who has been kind and good to me ever since we first met.

Memories

You've probably heard me say it, if you've spent any time with me in person, that line I use to describe the outcome of my divorce. "She got the house, the car, the furniture, the dog, the tools, the friends and the kids. All I got was my freedom. I think I did okay." Well that's pure hyperbole. First of all, only two of my children are living with her; the other two live on their own, unfortunately still afar but certainly not trapped in the house that I help pay for but don't get to live in. On top of that my son lived with me for a year, arriving right after my diagnosis and leaving almost a year to the day afterwards. Secondly, I did get a financial settlement. While it was certainly not all I could have gotten if I had fought to the bitter end, I wanted an end to the bitterness, so I settled.

There are some things my ex-wife kept that I miss, things like my sewing stuff and tools, things I probably couldn't used even if I had them, things that are easy to replace. But the things I miss most of all are the memories; the trigger for those being the hundreds of photographs that we had take over the years, photographs of our children, of time together, of places seen and explored, of a life lived in union. I miss looking at a picture of my daughters when they were small, of my son on his first day of school, of a picnic by Rolley Lake, of Christmas' long past.

My own photo album starts with digital photography, a storehouse of pictures as if time started in June, 2002. While that is well over a decade ago, my son was already 12, a recalcitrant near-teenager not wanting to be with us, seeking to have is own apartheid, a life separate from his Mom and Dad. He also, like the others, disliked the almost constant tension that had taken up residence in our marriage by then. I have no pictures of him as a little boy, helping to make cookies or playing in the living room.

By the time my pictures begin, Kate was 16 going on 17, Meaghan had graduated from high school and Mary was off living on her own. I have no pictures from when we were all a family, a unit together. I am going to ask my children for help with this. I want to remember, I want to go back to when there was a before. I want to see those children who laughed, loved Mommy and Daddy, played in the yard, jumped from trees, stacked blocks, and simply were there. I want those memories.

Uncle Adam

I was sitting with my Dad when he was dying, talking about family and relations, when the topic of his brother, my Uncle Adam, came up. He talked about him in glowing terms, and then I asked about my Uncle Adam's time in prison. My Dad's response was "Why do you have to bring that up?"

My Dad wanted to admire his older brother; he did admire his older brother. It's one of the oddities in my Dad's life, that he would admire the scoundrel who was his older brother, forgiving a great many wrongs and putting him up on a pedestal, revering his memory of his brother rather than seeing the reality of his behaviour. My Dad wanted to remember the parts of his brother he loved, and forget the parts which caused him to feel shame.

My Uncle Adam could best be described as a "character". Born in 1925, five years ahead of his younger brother, my Dad, he was much like his own father, my grandfather, a bit of a scrapper, the right guy to have with you in a fight, except if you were his little brother. My Dad once told me that his older brother's nickname for him was "Dick the Shit".

In 1940, at the age of 15, my Uncle Adam lied about his age, enlisted in the Princess Patricia's Canadian Light Infantry, and went to war. His initial posting was to England, where he was to remain until the Italian campaign began in 1943. He talked about being in Italy but in truth I am uncertain as to where he served. My Uncle Adam was one of the prime advocates of the McBride family motto, "Never let the truth get in the way of a good story." So at times I repeat the stories he told, scarce believing them myself.

I do know he was a courier for the army in France after the D-Day invasion. One of his great stories was of changing the gaskets out on the Indian motorcycles they used for courier work, using paper instead. This way they could get higher compression and greater speeds. The unfortunate side effect was that on occasion the paper gaskets would burst into flames on the edge, causing the rider to have to hold one hand on the bars while swatting away incandescence with the other, all while hurtling down a dirt road at now uncertain speeds.

In 1945, when my Uncle Adam came back from Europe, I am told he had changed. These days we would say he suffered from PTSD. Back then he just had trouble fitting in, a trouble that lasted most of his life. There were brushes with the law, his propensity to steal cars when he needed them ever an issue, and the perpetual family issue with booze. Most of his misadventures started with the line, "We were sitting around having a few beers..." Yet he lived a full life and was very kind to my children whenever he saw them.

Who knows what makes a man the way he is? The trauma of war, the horrors of an abusive, alcoholic father, the struggle with fitting in to "normal" society; all of these and more made my Uncle Adam who he was. And my father loved him.

Activity

Practical life rears its ugly head. My apartment is a maelstrom of busy. Jimmy is ripping apart the bathroom fixtures, leaving me nothing but toilet. Rosa is cleaning, dusting and vacuuming away to dust results from Jim's activities. I had my own errands this morning, off to the blood lab for another in my continuing series of tests for clotting and then off to get passport pictures; I am getting myself a passport once again.

On top of the things going on around me, there is work I have to get done. I am steadily progressing in a project I have underway, working on it as others are able, not working when things go to rest. It means there are many days when I do just a little, and then the odd day where I do a lot. In some respects this is the perfect arrangement for me, allowing me to keep my mind active while ensuring I have lots of time to rest in between

Now that Rosa is back, I get clean sheets on my bed. Kate did this for me when we went down to Vancouver at Christmas. I was away for almost two weeks, returning home the day before New Year's Eve. So I've had the same sheets for a couple of weeks. I can live with that, especially when you consider that I can no longer change them for myself. She will take care of watering the plants, those that did not die in her absence, and she will make sure my living room is tidy. She will put the butter in the fridge and I will take it out as soon as she leaves. It's silly; it works.

Jim keeps interrupting me as I write. In fact this morning I just headed out immediately rather than doing my blog first. That way I could get things done quickly. Now that I am back the interruptions continue. It appears as if my strategy of avoiding the noise has failed me once again.

This activity is good for me. The changes my be stressful but I am past the point of fear, looking forward to the upside of action. It makes me feel alive to have life around me. I love the interaction, the noise, the bustle. This is all good for me in the long run; it's the short run that gives me grief.

My Clock Is Ticking

ALS is a sneaking disease, hiding itself amongst the normal changes of life, an imitation, in many cases, of other issues, other problems, other diseases. It's hard to tell if the changes I am going through right now are just a part of aging, or a part of ALS, or both. Both seems to be the most likely answer yet I look around at others my age and there are things going on with me that I just don't see in them.

Take the clumsiness and shaky hands for example. This is something new to me, something I had not expected. Yet when I look back at the first symptoms, back in the spring of 2011, almost three years ago, I see similar conditions in my legs. When I first began to stumble, I thought it was my bad knee. When I sat down hard, unable to control the rate of fall from standing to sitting, I thought it was because I was out of shape. When I felt so tired all the time, I told myself I needed to exercise more and lose some weight.

Yet at the same time, looking around me, I saw people equally out of shape and overweight who were not having these problems. Somehow it just didn't make it past the filter of my thinking that what I was going through was more serious, that the weakness I was experiencing was different than aging or physical conditioning. I wanted to believe that all I had to do was lose some weight and do some exercise. No doctors needed, thank you very much.

Now I look at my arms and hands, the shakiness of my extended grasp, the clumsiness, the soreness of the muscles, the exhaustion I feel when using them. I don't trust them anymore. I don't see them as reliable. It's easy to say that my arms are tired because I use them for my wheelchair all the time, yet when I see others in wheelchairs who don't have ALS, their arms gain strength from use whereas mine lose strength. I look at the clumsiness as I looked at the tripping three years ago, knowing now that it is something different, not just age or physical condition.

It would be easy to attribute all these effects to something else. It would be easy to say that it's just aging, that it happens to everyone, that I am hyper-sensitized to this set of symptoms, that aches and pains are common to all people. It would also most likely be wrong. Time will tell; it's told me a lot already. My clock is ticking.

Mom, Don't Read This One

(This is a pre-script, written after, as a post-script, but posted here, first. Know that my days often start badly and the act of writing about it helps. Today I am sharing this short journey with you. This is the first hour of my day; not my physical day, my emotional day.)

I am without motivation as I awake. I don't feel; I feel nothing. I am a void in the space time continuum. I awoke thinking to myself, why am I here? What is the point of all this? As I lay abed, looking at the pills and the wheelchair and the urine jug, thinking about the struggle to dress, the barriers to even making a simple cup of coffee, Keureg and all, I just want it to be over. This listlessness, this malaise, this ennui is not quite enough to stop me from writing, but it is enough to make me wonder why I am bothering to do so.

Today, this morning, at this moment, I just wonder... why? I look ahead of me and I see no road; I look behind me and I see no result. I sit alone in my apartment, awaiting my own demise, wishing it would arrive, dreading its arrival. I am without purpose. In a time gone by, I would be long dead, lost to the predators seeking the old and wounded. I would be adrift on the iceberg, awaiting the cold, finding solace and comfort as its chill crept in, depriving my brain of oxygen, lulling me into endless sleep.

Now before you run for your phone or your jump to your keyboard, before you jump into action to tell me that you are worried about me, before you express some deep and wailing anguish, telling me that most people feel this way at some time or another, to tell me I shouldn't feel this way or that I have every reason to feel bad, to say that I should just get off my ass and get moving, read this. Some days I feel shitty; most days start like this.

Do not offer sympathy; it's pointless. As my father often said "You can find sympathy listed in the dictionary, between shit and syphilis." He was a man small prone to sympathy, yet in this failing there was also dim gleam of wisdom. Sympathy lacks effect. It minimizes, diverting from the issue with false homily. Sympathy does not help; it is an act of pity, an attempt to express emotion without truly understanding how I feel. Don't try to talk me out of my feelings; they are mine and I plan on holding on to them for a while. Soon all I will have is what I feel.

Some of you will be unable to stave off the temptation to post or email, others will fight an heroic battle and in the end will lose, succumbing to that innate need we all have, the need to offer the dreaded "advice". In the literary field, I prefer the quote from H. G. Wells; "No passion in the world is equal to the passion to alter someone else's draft." We all feel the need to comment, to proffer guidance, even me, especially me. I am the most afflicted of this, feeling the need to spew sagacity without considering whether or not there is requirement or request. As my brother said recently, "we share the same genes; they demand that we offer advice."

The day itself will move me to action. I have things to do. Jimmy will be here this afternoon; I will once again pester him with excess management. I am going out tonight; I will once again dazzle my peers with my treasure trove of useless knowledge. I have work to do, reports to write, stuff and stuff. The mere act of writing, the simple expression of how I feel is enough to move me forward, enough to get me somewhere away from this endless well of self-pity, shedding the cloak of morosity and donning the cloth of life. The mere act of thinking, or making my mind focus elsewhere, of putting thought into keystrokes is enough to lift me away from the edge of darkness. Perhaps, just perhaps, I will find some purpose in my day.

Siobhan Is Dead

Siobhan Rock-Zych died yesterday; a part of me died with her. Siobhan (for those of you not in the Gaelic know, you say it "Shivaun") was a beautiful young woman who leaves behind three wonderful children, aged 2, 4 and 19; a terrific husband, Tom; and an amazingly supportive, kind and loving family. Her life was stolen from her by ALS, stolen too soon, as if any time would not be too soon. She was diagnosed with ALS while pregnant with her youngest child, and fought this horrifying illness for these last few years of her life.

I met Siobhan online, in an ALS forum on Facebook. Her posts, always supportive and bright, felt so real to me, so personal. After the first few months of anger and frustration with ALS, I decided to do some travelling, part of which was a visit with her and Tom last summer. I posted about it in my blog from September 1, 2013. It was an amazing, laughter filled couple of days complete with hugs and jokes and wine and Scotch, food, family and fun. She left in me an impression of a woman in the prime of her life, in spite of her struggle with ALS.

The truth is that I am drawn to strong women. I have two women who serve, not so much as role models for me in my struggle with my illness, but as examples of how you can deal with ALS and still retain so much dignity and so much personality. Siobhan and Ellen, who I wrote about both in a blog entry and in poetry. (Just so you know, I have men who I am close to in the ALS community too but this is not their story.) Both of these women, so different from one another, attacking ALS in such different ways, have shown that life need not be defined by this affliction. They both, each in their own unique way, have made it very clear that they are alive inside their withering bodies, just as am I.

Siobhan and Ellen both have young children. Siobhan, with an older son too, has seen at least one of hers grow to adulthood. Ellen is fighting to be with hers as long as she can; as she ruefully noted yesterday, ALS may take her in a few days, or it may wait for five years. Each day Ellen makes the most of that day; each day Siobhan lived her life fully and completely.

This is a disjointed writing, an entry not well crafted. There are tears coursing down my cheeks as I write this, the sadness disproportionate it seems. After all, I've only know Siobhan for a year. Yet that year seems a lifetime, that two days with her and Tom a beacon in my journey. She made a difference to me. Siobhan made a difference to many people.

I Just Went Home

I am late in writing today; this seems to be a pattern of late, my sleeping in later and later. I don't know if this is a good thing or a bad thing, it's just another thing, another little slip and slide in the changes that seem to have infested my life of late. I used to get up early, needing only 7 or 8 hours of sleep a night and often needing less than that. There was a time when I thought nothing of going to bed a midnight and getting up at 5 AM. There was a time, a recent time, when the thought of a long day didn't bother me in the least. Now it is not the long day, but the long night that dominates my life.

Yesterday, especially the evening, was tough. During the day I did nothing, accomplished nothing. I remained at home, slept in late, took it easy during the day and readied myself for an evening excursion dancing. That may sound easy, but even the easy things have a new layer of challenge to them, living my life in this chair. Alas dancing was not to be. It didn't happen; as with many things in my life these days, there is a bit of a back story to this whole thing.

Some time ago it was suggested to me that I needed to start hanging out with people more my own age. I am not sure why, but some of my friends and family thought I should be with a more "age appropriate" group. I saw this as nonsense; my friends range in age from 25 to 60, with a pretty broad cross-section in the group. But I listened and started looking for groups that were more dominated by those in their 50's. In particular I found a social group online, a Meetup group, called the Calgary Baby Boomers. So I signed up.

These Meetup groups post events, get-togethers at venues selected by the group hosts. I've tried to go to a few of them, and in all cases I have had trouble with parking, especially handicapped parking. In one case, I managed to park on the street, across from the venue. In another I had to ask for help from a passer-by to get my wheelchair over a curb, in another I had to fight through the snow to the sidewalk before I could gain access to the venue.

Since the venues change all the time, I cannot simply talk to management at the location; I won't be there next week. Since it's winter, most of these places use the snow as their excuse for not providing handicapped access. The snow conveniently covers the handicapped parking signs painted on the parking lot, so those spots disappear quickly, both beneath the snow and then beneath vehicles parked thereupon.

Last night I was excited about going dancing with this new, age appropriate group. Imagine my dismay when I arrived at the venue to find a parking lot covered in snow and a massive pile of plowed snow where the handicapped parking would have presumably been. The sidewalk access ramp was nowhere in sight, also presumably covered by this massive pile of snow. I drove around the parking lot twice, looking for a way to get into the venue, then simply gave up and drove home.

You might ask why I didn't just ask for help. Well the truth is I am tired of having to ask for help. I am tired of constantly seeking access, wondering where and how I will get into a place with the others. In the places I go regularly, the ones where my mixed group filled with younger people, the age inappropriate people, I don't have to ask for help. They help me without my asking, blocking parking spots for me and coming out to make sure I can get in. The group I hang out with takes it upon themselves to make sure I don't have to ask. They act, without me having to beg.

More than the asking part, aren't we supposed to be in a world where access is equal, where people in wheelchairs are not barred from entry? Why do we accept this? I don't. But last night I was just too tired to bother with the fight, to worn from the daily struggle of just living to try to battle the inequity with which I must contend on a daily basis. I just went home.

Just Listen!

Yesterday I was telling my brother Jim about some the challenges I face with ALS, some of the less than obvious impacts of this illness. In particular I was telling him about PseudoBulbar Affect, or PBA as we say in the biz. This came up because we were talking about something fairly benign having to do with him helping me with renovations and I found myself struggling to hold back the tears.

He looked at me, rather placid, his face almost immobile yet I could tell that inside of him there was turmoil. So I asked him, "What are you thinking?" He said "I don't know what to think or do here. Remember, I am a guy and we like to fix things. There is nothing I can fix here." The problem is, of course, that what I have cannot be fixed.

In response I said to him, "Jim, you are doing the best thing possible. You are listening." That is not all he is doing. Like most men, he wants solve a problem. Action is what we are good at. Jim is taking action. He is giving me large amounts of his time and efforts to renovate my apartment, making it more wheelchair accessible. He is taking time out of his life to give it to me; I cannot think of anything more action oriented. I cannot think of a more giving thing to do.

When it comes to feelings, however, there is very little that anyone can do. When it comes to the emotions, the anger and frustration, the fear and doubt, the sleepless nights and wondering days, there is nothing anyone can do, except to listen. When I need you to hear me, I don't need you to fix anything; I don't need you to tell me the error in my thoughts or how I might look at things differently or why I should change my attitude. When I need you to hear me, the best possible thing to do is simply listen without trying to correct, redirect, caution or fix.

Sometimes I'm not even sure about what I want or need. These verbal expressions, the words that fall out of my mouth, are often unformed in their reality. These expressions of pain, or anger, or anguish, or frustration, or fear, are what lies beneath the surface sea of self. They are the outward expressions of my inner depression and fear, the turmoil needing an outlet, a way to escape before the pressure becomes intolerable. There is nothing you can do. Being there, just being there; that's what counts.

In reality, seeking to respond, either in words or action, is almost the worst thing you can do. When action is needed it will quickly become self-apparent. You will see when I cannot do something. If I cannot reach a cup on the upper shelf, action matters. When I am talking about what I am going through, action not only doesn't help, it may hurt.

When it comes to understanding what I am dealing with, when I talk about my feelings and frustrations, my emotional state, my inner life, action, either in correction or in response, does not imply caring; it's you saying I am unable to fix things; I am deficient. I am not deficient although I often feel that way these days. My body is deficient, not me. I am a whole human being with newly learned limitations, a man who once was capable but is no longer, suddenly and without remittance.

Doing nothing is the hardest thing to do, and often the best thing to do, when I talk about what is happening to me and how I feel about it. Listening is often the most powerful thing anyone can do. Physical help is good; emotional help is essential. Hearing me, affirming me, understanding where I am, this is listening. Listening is good; it doesn't require action.

The Conundrum Of Living

I had another semi-sleepless night last night; they seem to come in pairs, one right after the other, pushing me until sleeping is the only option. I was thinking again last night, thinking about how my life has ended up this way, what I have become in my final months and years, or what I will become, who I am and how I am. I thought a lot about things gone by, the massive events of the last year and a bit.

Part of my mind's wanderings last night were a reflection back to the days of my diagnosis, that week where fear and fate stepped into my life for good. I thought about bathrooms, leading me to remember an incident in the hospital after I had been given my diagnosis. While staying in the hospital, a friend came to me. She said I needed a shower. I was in a daze, still trying to contemplate what the doctors had said to me, still in disbelief, stunned by what I was going through. She simply took me by the hand, lead me into the hospital shower room, sat me on the shower chair and helped me shower. She was kind, gentle, and tender, taking care of me, respecting both my dignity and my emotional state.

After cleaning me up, she returned me to my hospital room and I slept. The next morning she came to help me get out of the hospital, aiding in my escape from the nightmare. As we waited for the discharge nurse I had a moment of meltdown, heaving great sobs and tears, my body shaking from the effort. Between sobs I managed to get out the preeminent thought that needed to explode from my psyche. I said, between wracking and convulsive cries, "I.. don't... want... to... die!"

That was a critical moment for me, a turning point really, where I realized that this disease was going to take my life, in more ways than one. This was the moment when I came to the crystal clear realization that I was going to die. The truth is that each of us will die, each of us is born unto death. Death is not what I fear; it is the moment of death, the process of dying; it is the transition. I can do nothing about dying; I must do what I can about living.

When my Dad was in his final days, we took him to the hospital; the many cancers within him were clearly winning, his body failing in so many ways; he was in tremendous pain. We sat in the emergency ward and I heard the doctor tell him there was nothing to be done. My Dad said "So we just give up?!?" The doctor replied, "No. We accept that this is what is going to kill you." My father passed away a few days later. He did not want to die; he knew he could no longer fight, no longer go on living. He died.

Nobody wants to die, not even those who profess no fear of it, even those suicidal souls standing on the precipice. They don't want to die; it is more that they are willing to give up their life for something or wanting desperately to escape the pain of living. The kamikaze pilots in the Second World War did not want to die; they were prepared to give up their life for something they believed in. The person taking his or her own life does not want to die: he or she simply wants to escape whatever is driving them over the edge.

I do not want to die. I want to live. It becomes more difficult as time goes by. One day the work of living will exceed my fear of dying. I know that day is out there, not visible yet, still beyond my horizon. I do not want to die; I will die. That is the conundrum of living.

Thoughts In The Night

Last night was a tough night. I was tired and went to bed at 10:00 PM, an hour earlier than usual. I expected, on sleeping through the night, to awaken early this morning, ready to get started on my day. Jim is different; he is a night owl, usually staying up until 2:00 AM and not getting up and started until nearly noon. I accept this. He is doing the work on his own time and in his own way. The work gets done; that is all that really matters.

After heading to bed early, I awoke at 12:30 AM, laying in my bed, uncomfortable and unable to get comfortable. I tossed and turned until about 2:00 AM, finally giving up on both sleep and comfort, instead grabbing a book to read and hoping that the density of the material would give me pause and cause to sleep. I heard Jimmy go to sleep at 2:30 AM while I remained awake. I read for a while yet continued to be unable to drive myself to restful slumber. At 4:00 AM I put the book aside and once again closed my eyes in a sham of sleeping. Eventually tiredness took over. The last time I looked at the clock it was 5:00 AM; the next time I looked was when I awoke for my day at 10:23 AM.

I am fairly sure I know why I could not sleep last night. Despite the ultimately positive outcomes heralded by the renovations to my bathroom, these changes are a reflection of the continuing losses foisted upon me by ALS. The ripping, tearing, banging, cutting, dustiness of my apartment is a simple fact driven by my changing body and abilities. It's upsetting. It's painful, each bang and cut reminding me of what is happening and why.

I spent much of my waking time last night thinking about what was happening and what I was doing. Then I would worry more about whether or not we were making the right changes, and what might go wrong with the changed layout. That meal sufficiently chewed, I would return again to considering the source of these changes and what might happen next.

I am tired today; I'm going to need a nap. I sit here tapping away, listening to the TV in the background as Jim has his pre-work rest, his period of mental preparation before he begins the heavy physical tasks of the day. I'm already thinking of going back to bed. There are things I need to do today, and I will do them. I'll just be tired, not something new or unusual these days.

My Project

Jim is here and renovations have begun. We are just getting started, or should I say, rather, that he is just getting started. Jimmy is particular about things, kind of like the rest of my brothers. There is a way he wants things to be. He works at his own pace. On the other hand, Jim is doing all of the work, or at least all that he can, at no cost to me other than materials. It seems a good deal for me, especially since he has to drive down from Edmonton each week to do the work, a three hour drive on Tuesday and a return trip on Friday night or Saturday.

The first step is the tear down. We are considering a couple of different ideas for the final layout; all of them include the complete removal of the existing bathroom wall, enlarging the bathroom and adding a wheelchair sized door. All the potential layouts include increasing the size of my bedroom door. So the tear down will take place in the bathroom and hallway regardless. This is where he is starting.

Jessica, my friend and the architect doing the layout ideas, is coming by tonight for dinner. We are going to debate the various merits of the approaches. All approaches imply widening either the hallway or my bedroom door and that means modifying one of the load bearing beams in the ceiling. The structural engineer wants the ceiling opened up so he can see the beam that goes across the hallway. That particular beam bears the load of the upper floor; moving it might cause serious problems with the building's structural integrity. The initial assessment from the engineer suggests we can extend the main beam but he won't sign off until he actually sees it in place.

Between Jessica, the engineer, Jim and the other intended subtrades, I think I have a project. Maybe that is a good thing. After all, I am a Project Manager by profession. Perhaps it's time I put these skills to work for myself. The pay is terrible but the work is interesting. The only challenge I will have is not upsetting Jim. He, as with most others in my family, doesn't like to be "managed". So, as with all other human relationships, I will have to use a light management touch, simply directing the overall view and leaving the details to the various experts. Some things never change.

Change Happens

Kate leaves today. Jim arrives today. This afternoon we review renovation plans. Tomorrow we start tearing walls apart so we can make the bathroom and hallway bigger. This, of course, will make the bedrooms smaller, but only the guest bedroom. The master bedroom will lose a small bit, but it will still be plenty big enough for me and my wheelchair. In fact with the new 36" doorways, it will be big enough for me to use my power wheelchair inside the apartment, something that will become important as time goes by. Change is a good thing.

One of the persistent problems in my marriage was my ex-wife's inability to adapt and deal with change. She would not only resist it, she would refuse it, reject it, ignore it, and when it finally happened she would be distraught about it, seeking someone to blame for the change. Yet after change was forced upon her, she would adjust to a new reality and ultimately deal with it. The problem was more with me; I was unable to withstand the rigours of her process. It simply wore me out and eventually the battle against change became so difficult that I switched rather than fight.

I find it interesting, the people who resist change so strongly. Change happens. If you fail to see it coming or refuse to believe that it might happen, you end up destroying other parts of your life in order to avoid the change. The problem isn't the change so much. It's that change implies loss. Whenever something in your life changes, one thing goes away and a new thing arrives. That's what change is. For those who fear loss so greatly, who are so loss averse as to be immobilized by its possibility, change is a terrorizing experience.

What these people fail to understand is that change doesn't just take away, it also gives, bringing something new, some exciting possibility. The problem for many of those fearful of change is that they fail to see the opportunity in the new, that getting it means letting go of the old. That old thing, so comfortable and reassuring in its constancy, may be a bad thing, a hurtful thing, The thing that needs changing, even though it may be safe and secure, may be a thing that is holding back, keeping you from learning and growing.

I don't really like change a lot; very few people really like it a lot. In fact I think it is part of our anthropologic makeup, a survival skill, to be suspicious of change; it helped us in our caveman days. Change can be exciting, interesting, and it is inevitable. Trying to stop change in one area simply makes it pop out in another. It's like trying to squeeze a balloon in your hand and not have it bulge out anywhere. No matter how hard you try, eventually it comes out somewhere. My goal is simply to accept that change will happen, and then to find the good parts. They're there; you just have to look for them.

Before It's Too Late

Kate is visiting me. I love it when my kids come to visit, yet I am so at a loss as to what to do with them here, with me. I have this life, this set of activities; it is full and busy and active. Yet most of what I do is uninteresting to someone who is an interloper, not a part of it on an ongoing basis. If you only go to one of my trivia nights or Name That Tune with me on rare occasions, there is not enough time to get the real point of the exercise, getting to know the other people there, enjoying the human part of the equation.

It's not that there are not interesting things to do in Calgary. It's that I want my children to understand and see my life, know the people in it, understand why I am here and how much I enjoy the community of friends I have surrounding me. I want them to see that some of these people care for me in such powerful and practical ways that I am never really alone. I want them to know that I am happy, and why I am happy here.

There are museums and zoos and shops and attractions in every city, in every country of the world. Visiting a museum here or an art gallery there is certainly interesting but it shows nothing of my life, neither the simple nor complex parts of it. I think my children learn more about my life by going grocery shopping with me, by seeing me navigate my life in my wheelchair, but watching me work my way through the stores, getting a power shopping cart, reaching things on the high store shelves. A zoo is an attraction and a distraction, creating an artificial experience that lacks any exposure to how I really live.

Sometimes the best memories of a visit are those captured minutes shared in the interstices of activity, when the minuscule gap between activities leaves a void where some penetrating or insightful conversation craftily slides in, nature, as she is wont to do, abhorring the vacuum. The best parts are those that happen in between the artificially created attractions and distractions, those moments when our guard is down and our mind is open, vacant of those things which would draw it elsewhere. Then we talk about things that matter, quickly, briefly, the conversation tumbling about like rapids in a mountain stream, seemingly needing to expend this large amount of emotional sharing in the fastest way possible.

I like having my children around me, not so much for what we do as for the time we have together. I don't have much time; whether I spend it with them driving to Drumheller, visiting the zoo, or sitting at home watching a hockey game, the best times are the small ones where we really get to share things about life. I want my children to know me, and for me to know them, before it's too late.

I Feel Good

I must confess to an odd feeling of contentment today, an inexplicable feeling of satisfaction and comfort in my life. While I most certainly have all the challenges you can imagine, while I am certainly unhappy with my illness and shortened life span, while there is no doubt that ALS dominates my life these days, it doesn't seem to be able to take away the joy and pleasure I find in my daily existence. I'm not sure why, or where this comes from, but I feel good, not just today but lots of days.

More and more I find myself looking inward. As my world collapses towards me, my circle of life getting smaller and smaller with the passage of time, I find myself less upset with it than I thought I might be. There was a time when the idea of sitting in this living room, looking out that window, seeing the mall and distant sky, day after day, seemed anathema to me, seemed some sort of punishment, some sort of loss. Oddly enough, it doesn't really happen like that, the losses that plague my body seem unable to consistently plague my spirit. Some days you get the bear; some days the bear gets you.

It's not always like this, me with this internal sense of calm and comfort. There are most certainly bad days, bad hours, bad minutes, when I just want it all to end. These usually happen when I am deep in the midst of some struggle with an activity of daily living, with those mundane tasks that we all deal with morning to evening. These bad bits come when other bad bits conspire, yet all I need do is put one foot in front of the other, figuratively speaking, and keep going. Then things seem to get better.

With this time and personal contentment, I find myself more able to contemplate the really large thoughts in my life. I think about why, who, and what, in ways that go beyond my doorstep, in ways that reach outside of my personal shell. I begin to look at the inputs and outputs of my life with more meaning, the anger of ALS slipping away and the reality of a life well lived coming through. I see things better.

I am still living my life even with this broken body. I am fortunate. I have the time and at least some of the strength to continue. I have the space in my spirit to find joy in my daily life. I have the gift of laughter and love. I have a lot. Perhaps that is why I feel so good today.

It's About Communication.

The following analogy describing ALS is from my online friend, Robin Hanna-Mower. She posted this on Facebook. The analogy is so good, I asked her permission to use it. I've made a few edits but essentially these are her words

ALS for those who don't understand : say you are in a relationship. Women will be the nerves, men are the muscles. When a relationship starts to go, the nerves want to communicate with the muscles. The muscles, in the beginning, start slowly detaching, not wanting to communicate. This detachment makes them uncomfortable, so they start twitching and the more they twitch the more they start to spasm. The more the muscles detach, the harder the nerves work to communicate. They even try to rebuild the connection with new nerves. All this work at communication is exhausting, both physically and emotionally. As with all bad relationships, eventually the communication stops. Many times the muscles will come back into communication and, in ALS, this shows up as spasms; the muscles and nerves want to communicate but don't have the ability to do so. Finally, they divorce. Communication ends.

Take that analogy a bit further and you can better understand this horrible disease. It's not just one relationship; there are many nerve/muscle relationships in the body. Some of these relationships are working just fine. There's lots of excellent communication. Other of these relationships are in the early stages of failure and others are well down the path to complete divorce. In ALS patients, the relationships deteriorate in different places and at different paces. So while one of us has bad legs, another has bad arms, and yet another has bad swallowing and speaking.

Finally, think of how wearing this is on the overall spirit and health of the typical ALS patient. We are exhausted, not because we do anything to exhaust ourselves, but because our nerves are so tired from trying so hard to communicate to our muscles. We are expending nervous energy without doing anything at all. When things are going well in a relationship, it's easy. Communication flows easily and can even energize the relationship, building strength in both the nerves and the muscles. When communication begins to become difficult, you invest a great deal of energy in the hopes that you can become strong again, yet ultimately all that happens with ALS is the muscles become weaker and weaker, and the nerves become tireder and tireder.

ALS; it's a relationship of one part of your body with another. Eventually all the relationships between nerve and muscle fail. Communication ends. Then, so will I.

Lessons From A Wheelchair

The snow devils came once again last night, layering my city in sheets of white, snow upon snow, crusted with a crunchy top layer of thin, crisp ice. The temperature outside, merely freezing for the moment, is at a peak and ready to slide into the depths of arctic chill. I'm sitting here in my living room, looking out my window and thinking about the errands I had planned for today.

I wanted to take my kilt and jacket to the dry cleaners; should have done that yesterday when it was merely mushy. I wanted to take my truck through the car wash, the last few days have seen the Calgary street mud fly up in a concerted effort to hide the blue paint with brown and grey muck; should have done that yesterday when it was merely mucky. I wanted to go to the liquor store and stock up on missing items, bringing my supply to its fully glory and status, as it should be; should have done that yesterday when it was merely yucky.

Even though I contemplate housebound-ness today, I am not truly trapped here. I have, in my first full wheelchair winter, learned how to push on through the drifts, break the crust and force my wheelchair up a slippery slope onto the sheltered sidewalks of most malls and stores. I have learned to glove up and go, despite the dampened chill that inevitably makes its way into my fingers and hands, suffering the slings and arrows of ice and snow on the wheels of the chair. I pop up my front wheels in a mini-wheelie and lurch forward, wheelchair stamping my way through the drifts and drops. I am not trapped; my options are merely less appealing than a trek on a summer's afternoon. All it takes is time and patience.

Wheelchair life has its challenges but it is not completely limiting. I still go dancing. Aside from the Deep Vein Thrombosis, a gift of spending all my time seated, and aside from the shortened stature and low view provided from this vantage, there are not a lot of things I cannot accomplish in the chair. Stairs, sand and narrow doorways are my greatest impediments. Even these roadblocks in my travels can be overcome with a bit of planning and a bit of help. I get around.

Today, however, I think I might stay in. The kilt can go another day. The truck can stay dirty for a while yet. I don't really need more alcohol. All of these things are options, not necessities. I have all I need, and what I want I can wait for. These are lessons you learn from a wheelchair; timing and patience.

I Need A Rest

Fatigue is one of the most common effects of ALS. PALS I know consistently report needing to sleep more, feeling tired and exhausted all the time. I get this way too, that feeling of constant weariness. If you watch me carefully, particularly early in my day and late at night, you will see the signs of it. My body moves more slowly, it takes me longer to form a sentence or I use short sentences, my voice volume drops and my tone gets dull and flat, I sigh.

There are other elements of this fatigue, things like anxiety, crying, and a general loss of caring about things in life, including a loss of care about how I look or dress, forgetfulness and my increasing self-isolation. I become more about "why bother", and less about living life. All of these elements make up the fatigue that defines much of my waking day.

ALS is ever the great imitator; one could think I was clinically depressed. Certainly the symptoms are similar and if anyone has a reason to be depressed, it's an ALS patient. If you think about it, this fatigue is a kind of depression, one where ALS depresses my general strength and ability to deal with things, not my spirit or mental wellness. This deepening well of tiredness need not define my life completely. I can do some things to manage it; other things I just have to live with.

First and foremost, I need to sleep more, and I do. These days I get out of bed at around 10:30 AM or even later. One of the good things about no longer having a regular workday is that I don't have to get up in the mornings. And I can go to bed when I get tired; I don't have to be up for a certain time at night. These days I sleep somewhere between 10 and 12 hours a day; many PALS tell me they sleep even more than that, napping in their wheelchairs during the day. We just need our rest.

The next thing I do is pace myself. If I have a big task, or a big evening out, I make sure I get plenty of rest beforehand, and plenty afterwards. When I am in the midst of something I will often stop to rest, doing something else for a bit or more likely just sitting still and allowing my body to recover. If something makes me tired, I stop. Then, when I feel better, I start again. It's a simple approach that works.

Stress is another big challenge for exhaustion. What wears me out emotionally wears me out physically. So I try to avoid stressful situations or places with emotional conflict. I simply don't have the strength for it. I watch myself; when I get emotionally stressed I snap, lashing out at those around me, unkind and seemingly ungrateful. When this happens, please know that it's not me, it's the disease and the exhaustion.

So I got up at 10:30 this morning. I used the toilet, had a shower, shaved, and brushed my teeth. When I got out of the bathroom, an exhausting exercise on its own, I looked at the clothes laid out on my bed and said to myself "why bother". I have yet to dress but I will get there. First, I need a rest.

Starting Date

I slept in until noon today. Even that bright, glowing orb working its way across my horizonal dome was unable to persuade me to rise from restful slumber. It was a beautiful, lazy, easy way to start this new year, a relaxed entry into another year of my life. My ALS symptoms began in the spring of 2011. I was diagnosed in the fall of 2012. I spent 2013 getting used to this illness and its ways. Things will happen in 2014, of that there is no doubt. The disease will progress and I will regress. There is no need to wonder, no point in worry. I might as well sleep in, today at least.

Last night I went out to a New Year's Party. This arbitrary date, dedicated to the celebration of the Roman god Janus as well as the deification of Julius Ceaser, has been celebrated since pagan times, before the birth of Christ. Janus has long been depicted as having two faces, one looking forward and one looking back. This idea, that the first of January, so named for the Roman god, was the first of the year has been around for a long time, yet still the date was set by mankind, either by tradition or fiat.

In reality, for each of us, individually, our new year is our birthday. This is when life began. The celebration of a common new year is more linked to the social needs for the confirmation of life and the continuation of living. This choice of date is common only to those under the Roman tradition. We all know that other societies in other parts of the world have chosen different dates to celebrate the successful completion of a single solar rotation, celebrating with joy the simple reality that the world did not end, along with the hope that it will continue as it has before.

For me, each year used to start with my birthday, the steady move from one year to the next, my personal calendar incrementing. This whole New Year's Day celebration was more just a good reason for a party and some fun. Now my date has changed. For me, November 20th is now my New Year's Day. It was the day I was diagnosed, the day I learned about ALS. I mark my calendar from that day, each day an incremental move down my life's pathway towards an inevitable outcome. Of course everyone faces that outcome; I just have a different start date.