I Am Not An Island

It is quiet. It is still. The occasional car goes by, muffled by the snow on the street below. The trees are coated in a skin of frost, white, brittle, waiting for the first wind to shake them loose. I am still, calm. There are errands to be done; I will do them later. There are chores to be done; I will do them later. I sit here now, watching the light flakes of snow float by, sometimes horizontal, sometimes vertical, sparse and spare. I think of a song by Simon and Garfunkel, "I Am A Rock". The first verse...

"A winter's day

In a deep and dark December

I am alone

Gazing out my window

To the street below

A freshly fallen silent shroud of snow

I am a rock, I am an island."

The song continues, talking about a man alone, a man who wants no friends, for friends cause pain; a man who does not want to love, for loving causes pain. I am not that man. I revel in the joy of living and loving, taking the pain and pleasure of both.

Yesterday, as I was wheeling my way into town, I got a text from a friend asking me to dinner, he invited Kate too. A moment later another text from another friend, making plans for a New Year's Eve party tonight. I came home to the gifts and goodies from my Christmas Gift Exchange dinner with friends. I am not alone; I am not a rock; I am not an island.

Today Kate has gone to see her friends in Fort McMurray. Her flight was at 5:45 AM so we were up at 4:00 AM and on the road at 4:30 AM. I came home and went back to bed. When I awoke, finally, at 10:00 AM, there were more messages, texts from friends waiting to be read on my phone.

Certainly I have my lonely days, those days when I miss having a lover in my life. Certainly there are those alone days, where everyone is busy and I must do as many must do, and do things on my own. Certainly there are days where I feel like I have nobody. Yet I have so many full days, so many days with life in them, that this day, this day alone, this day with just me in it, is not lonely. I am not a rock; I am not an island.

Hey It's Good To Be Back Home Again

I'm home again, here in my apartment in Calgary. I am surprised at myself, at the way I was so anxious to get here, at the way I feel "at home" here, at the way these surroundings seem comfortable to me, safe and secure, tucked away from the things in the wide world that challenge me. Here I sit, watching the dry snowflakes whirl past my window, hearing the tip-tap from Kate's keyboard as she responds to emails and checks in for her flight tomorrow, the soft noise of traffic whirring by, the clock on the wall behind me with its soft ticking. All of this reminds me of how much I have come to be settled here, something that surprises me once again.

The drive home yesterday and this morning was fairly simple. Yesterday we stopped in Merritt for lunch with a friend, then in Westbank for coffee with family. After that we headed east, Kate and I, driving on into the evening. It was only 5:00 PM when we got to Sicamous so we decided to push on through to Revelstoke where we discovered there were no rooms to be had. We headed eastward once more, on the Golden, where we stopped for the night. The time zone change meant our 9:00 PM arrival was suddenly 10:00 PM; we went straight to bed, tired from a long day on the road.

The roads were relatively kind to us. We ran into the expected snows on the Coquihalla, their damp drop disappearing once we crested the summit, rolling down into the Nicola Valley where warm air had settled and cleared all semblances of winter snow from the highway. Over the top to Westbank the roads were equally dry and clear, leaving us only the persistent fog that rises off of Lake Okanagan into the lower reaches of the interior plateau. The fog passed as we came down the mountainside.

On leaving Westbank, heading up the Okanagan Valley towards Sicamous, the snow and fog both made appearances yet the temperature was warm and the road merely wet. This was to change once we headed east on Highway 1. Then the bad part; the road through the Monashee Mountains was lumpy with snow and icy beneath. This stretch is always bad. Once past it the road was good all the way to Golden.

The same was true this morning, with clear dry road almost all the way. Winter road crews have done a great job with the highway and we made excellent time, leaving Golden at 10:00 AM and arriving home at 1:00 PM. Now I get to use my bathroom, have a shower, and make some dinner. It's good to be home.

Going Home

I am headed home today; that means back to Calgary. It's funny how my focus on home has changed over the last few years, how it has shifted from Abbotsford to Calgary. Certainly the loss of my home and family through the divorce has had a lot to do with this change. The relationships and life I have built in Calgary also have a lot to do with it. Calgary just feels like home these days.

My first few days in Vancouver were empty. During those days I found myself calling my brother and complaining about being here, about the lack of contact from my children. He said "You mean you are unhappy coming home?" My response was immediate; "I'm not at home! Calgary is home!" I surprised even myself with that admission, the acknowledgement that my home was no longer here on the coast but in a city a thousand kilometers away, a full day's drive inland, two when the roads are bad as they are now, over the Rocky Mountains.

This in no way implies a lost loyalty for the coast. I love the sea and will always love the sea. I root for the BC Lions and the Vancouver Canucks. When my teams play the Stamps or Flames, I tell people I get to back the winning team either way. I love the mountains and forests of this Pacific province, the deep woods where the green never ends, a land filled with deer and moose and bear, rivers alive with salmon, lakes flooded with trout. I love the lifestyle of the coast, spending time on the boat, sailing year round, fishing year round, and in years gone by, golfing year round. Yet for all of this, the Fraser Valley is no longer my home.

They say that home is where the heart is; even this is not completely true. There are so many people I love here, so many people who I miss so much when I am so far away. My parents are here, my kids are here, life long friends are here. When I escaped a bad marriage and found a new life in Alberta, it did not end these relationships. Part of my heart is here, part of me still carries the deep bonds that would have held me here had I not been so firmly pushed away.

I am going home today. It will take two days of driving to get there, two days of travel over rough and dangerous roads, through terrible weather, dealing with snow and ice all the way. I am going home today, back to where I live, back to where my life is. I will never completely leave BC; I will never completely live in Alberta. That's just the way it is.

Off To The Island

Boxing Day was Christmas for me, my Mom and Ray's apartment filled with chattering children, nieces and nephews, grandchildren and brothers, four generations of us in all, sharing our space and thoughts, talking about our lives, giving and receiving gifts. It was the kind of a day I hoped it would be, the kind of day that I wish for more often. I love my family. I love my children. It is the saddest part of my life that they are not around me as it draws to a close.

I am grateful for that day; I get another one today. We are headed over to Victoria to see my oldest daughter. She, her husband and my granddaughter will be spending lunch and part of the afternoon with us. There will be more chatter, especially about her second child, due in early June. She had her first ultrasound yesterday. They were not able to determine gender; it's a squirmy baby. I was that way, not only in the womb but out, forever active, forever running, playing, jumping, energetic and on the go.

The day itself will be a long one. We, my Mom, Ray and I, are all up early, heading to the ferry for the 10:00 AM crossing. That means leaving here at about 8:30 AM, in about a half an hour. I am writing quickly, saving these thoughts before the day takes hold and the travel begins. It takes about an hour and forty-five minutes to cross the Straits of Georgia, a run that would take five or six hours under sail. These are fast boats, these giant ferries plying the coastal waters of BC, nimble too, cutting their way through the narrows of Active Pass and picking their way through the Gulf Islands.

Mary, Albert and Rose live just 20 minutes from the ferry dock in Schwartz Bay at the head of the Saanich Peninsula on Vancouver Island. We will probably spend more time in the unloading line that actually driving into Victoria. I suspect we will meet Mary and her family for lunch somewhere after which we will head back to their tiny apartment to exchange gifts. Then, later in the afternoon we will make the long ferry ride and drive back to Vancouver.

I may not get Christmas with my kids, but I am going to make every effort to enjoy the days I do get. There won't be many left; each day with them is precious. I am lucky to be able to do this, to have both the time and ability to share another year with them, or at least as much as life gives me. This may not be my last Christmas but the odds are fair that I will not spend another here in BC. Next year I will be less able to travel, almost certainly unable to make this drive. I'm not going to worry about next year; I'm going to enjoy today.

Systems

It's raining, the sky a dull grey, heavy drops blown by the wind, bouncing off the branches of the trees outside, hanging on in driplets at each junction, each new shoot from the edges of the trees now barren of their leaves. Almost barren; a few of these leaves, long browned and dead, still cling in pantomime of life, holding on until the last great storm of winter shakes them from their precarious perch. The wind pushes the branches back and forth, both the evergreen and the no longer green, a mixed play of deep emerald and barren birch.

This is the dull day of winter here in Vancouver, the winter wet that descends on the coast in November and stays, locked against the mountains, until the warmth of spring dries the air and rocks along the ocean's edge. This is the dull day of winter on the coast, where the cool, moist air rolls off the great Pacific sea, hitting the steep slopes of the Coast range, unloading what moisture it can and then rising over the mountain tops to settle snow along the interior mountains and highlands of BC.

This same weather here drives the Chinooks that settle into Alberta, the warm air rising high across the Rockies, unloading its precipitation and then lightened and yet still warm, tumbling down onto the western plains of southern Alberta. The air, relieved of its weight of wet, brings clear skies and rushing winds, gathering speed as it flows and blows down the thousands of feet along the mountain slopes, bursting through the foothills and slamming into Calgary, reaching highway speeds along its journey. That warm wetness of Vancouver becomes the warm, windy, dryness of Calgary, pushing temperatures up and driving the snows before it.

Weather is a funny thing, systems in one region driving systems in another. Weather on the coast affects weather in southern Alberta, building the battle between the icy arctic air flowing down the plains and the warmth of these Pacific patterns. Systems, all interconnected, impact our lives in so many ways. Nothing happens without impacting other things. It's true in weather, and in life.

The Itchy And Scratchy Show

One of the more embarrassing side effects of spending all of your time sitting down is the rash which can develop in the groin area. This wheelchair rash is a result of the lack of air circulation along with the constant warmth and moisture achieved as a result of the body parts constantly pressing against each other. It itches, the red edges of welts rising above the even surface of my skin. There are small blisters that form, making the itch all the worse, driving me to the maddening need to scratch that itch, making the situation even worse.

There is a further challenge with this skin damage. Not only is it a result of sitting all day, it is exacerbated by the lack of muscle activity and corresponding blood flow in my legs. This lack of blood flow in my upper legs causes my skin to be more sensitive. More perversely, the same blood that doesn't flow in my thighs will pool in my feet, causing the deep purple swelling that I get to see each day. This swelling in my feet is as damaging to the skin there as the lack of blood flow is in my thighs. So not only do I get skin itch on my ass, I get it in my feet too.

There are a couple of ways to deal with this. Keeping the skin area clean is essential. This means daily washing of that area of my body, something I accomplish each morning at home. On the road I generally use hand wipes or baby wipes to clean my skin, removing the moisture that collects on the skin during the day. I am careful not to use scented or "anti-bacterial" wipes as these contain chemicals that can actually harm my skin. It also means cleaning my feet daily, using similar wipes when I am not near a shower.

Ensuring air flow next to those areas of skin is another important element. During the day I do nothing but sit, and that sitting pushes my thighs upward, flattening them, eliminating the normal space between my legs that muscles would provide. This means there is no air circulation, the kind that most people get when they walk or move their legs. My thighs, immobile as they are, simply push against one another, creating friction points and collection points for moisture. To combat this, I work to ensure my thighs are separated when I sleep at night, positioning my legs in a way that allows for air circulation, sometimes using pillows to keep one leg off the other.

Clothing is another key ingredient in keeping my skin healthy, especially in those private areas of my body. Garments, particularly underwear, that fold into bunches and rub against the skin create irritation, causing more sweat and more discomfort. If my clothes are too loose, they bunch. If they are too tight, they bind on the skin, increasing the itch and discomfort, damaging more than just the surface of my body.

Finally, there is my wheelchair cushion. A good wheelchair cushion costs in the area of $600; it's worth every penny. These specialized cushions are designed to allow for comfort and distribution of weight. They separate the legs, supporting each independently. It's getting so I want to spend more and more time on that cushion. It's not just comfortable, it's healthy too.

Tomorrow Is Another Day

It's Christmas morning. My gift today is a seething ache in my hip, the hip where I had a chunk taken out to be used as a bone graft in my right hand. The doctors warned me that I would likely suffer more long term pain thanks to the carving out of my hip than in the rebuilt scaphoid bone. They alluded to arthritic pain; they were right, more the curses to them for it.

Oddly enough my left hand hurts too, as well as the bicep in my left arm along with the muscles in my right leg. It's strange that dead muscles can hurt, but I assure you they can. It would be nice if I could blame this on ALS; I cannot. These aches are a simple function of growing old, a process from which I gain no exemption even though I have a terminal illness.

I am convinced these added aches and pains are simply a result of being here on the coast. It's wet here, a kind of winter dampness that creeps into every ache and injury of years gone by. The dampness here seems perpetual, unending, created at creation, continuing until the end of time. It hangs heavy over all things, the very air weighted with it. To walk in it is to wear it; to roll in it is to have dampness cling to you, your body magnetic to the moistness.

So I ache, every motion wrapped up in a subtle pain. Were I mobile, could I walk, I would shake off this ache, moving muscle and joint, pushing blood and energy into my body's limbs. Could I climb, I would climb the stairs, walk the pathway, feel the cold and shake it off with the warmth generated by my own being. These things I cannot do. I am captured, a prisoner of what remains of me and those remains are simply limp, unable to do those things that would shake this ache.

As with this day, this ache will pass. As with this day, a better day will come tomorrow, a better time awaits. Nothing lasts forever, not even ALS. Each day is a transient visitor, bringing what it brings and taking what it takes. I will return home to Calgary where the air is dry. My ache will ease. Spring is out there, waiting for me. The cold will leave. Summer will come. To quote Scarlett O'Hara, "After all, tomorrow is another day".

Perspective

It's Christmas Eve, or at least the day thereof. It doesn't seem like a special day; it's more like just another day on the calendar. Tomorrow is the big day, that day when we are supposed to feel joy and excitement, that day when we are supposed to be with family, surrounded by love, that day when we should be happy.

Many of us will not be happy tomorrow morning. For many of us the day will be just like any other, a day where we struggle to maintain our happy external face while inside we are filled with pain and tears. It's not just me, it's not just ALS. There are lots of reasons why so many of us will not have the storybook Christmas, why so many of us will have days filled with sadness and melancholy, missing those who should be with us, those who were once there but now are absent in our lives, mourning the losses past, present and future.

I hear from a lot of PALS online, their stories often far more difficult than mine. While I do not find solace in their struggle exceeding mine, it helps me understand my own situation, to see it in a better light. You have to be careful not to compare; there will always be those who are better off and those who are worse off. Yet we all do it. We tend to have this negative bias, seeing only those who are happier, in better relationships, wealthier, healthier. We don't see those whose struggles are worse, whose situations are unhappier.

Today I heard from a Person with ALS, a woman whose onset took place at around the same time as the birth of her son. Her son is now 10 years old; she has been struggling with this illness for a decade. She has been watching herself slowly slip away for 10 years, watching each day's loss for 3,650 days and more. Today she told of her husband whose anger and frustration has been rising for all of this time, coming out in ways that made their life together unlivable. She told of the loss of her marriage, the departure of her son, and how her husband took her then 9 year old boy when he left her.

There are difficult things in my life, challenges with family and children, days when I wonder why. I cannot imagine how hard this must be for her, how painful her loss must be. It doesn't make my situation any better but it sure as hell provides perspective.

It's Hard To Die

This time of year is difficult, even for those without the kinds of difficulties I am facing. As dramatic as it sounds, there is about a 50/50 chance that this will be my last Christmas. It is a near certainty that I will not be back to BC again this time next year; by then my health will likely have declined to the point where the arduous trek from Calgary to Vancouver will simply be too much for me. There is a fairly high probability that my driving will be limited or perhaps even non-existent. At some point I will lose enough strength in my arms and hands that I can no longer control the truck.

Taking ALS out of the picture, this is a tough Christmas. My kids are mostly with their mother and I am with my Mom and Ray. The kids will spend Christmas Day with their mother and I will see them on Boxing Day. I tell myself "it's just a day on the calendar"; it's not. It means more than that. Christmas Day symbolizes much in life, triggering those memories of laughing and excited children gathered early in the morning, squealing with excitement as they dig through stockings, sitting impatiently waiting to unwrap their Christmas treasures.

It is supposed to be a time of year spent with family and I am with mine, mostly. Divorce and the destruction of the divorce process have pretty much shattered my life and my relationship with my kids. They seem to get along better with their mother than they do with me, and quite frankly, given the amount of distress that is already present, I don't want to make things worse by demanding they spend more time with me than they want to. So I concede Christmas Day and take Boxing Day. Even with this it will be a short visit; they want to get "home" early in the afternoon.

Despite all of this I want to make this a time of happiness. It's a hard thing to do. In fact I would say that this time of year, knowing what I know and facing what I face, brings me face to face with what I can only describe as the toughest time of my life. It is nearly impossible for me to keep a brave face on throughout all this, almost impossible for me to keep the anger and pain inside, not letting it explode out on those around me. This is a hard disease, and a hard time to have it, or any other terminal illness for that matter.

It's hard to die, hard to live, with this. It is the hardest thing I have ever had to do.

I'm Tired

Some days I get tired, really tired. It's not a physical kind of tired; it's an emotional tired. I'm so emotionally worn and damaged, so destitute of spirit, unmendable by any ministration. I just feel like giving it all up. I wish this stupid disease would just be done with me and let me rest. Some days death looks a lot more inviting than the loneliness and misery of living. I wish it would just end.

I'm tired of waiting for my kids to reach out to me without my reaching out first. I'm tired of hoping they will show some level of caring and initiative, some sort of responsibility or perhaps even gratitude for the life I gave them. I'm tired of wondering if they care. Where are they? I've driven over a thousand kilometres to be near them, yet it seems impossible for them to drive a hundred to be near me, to even make a phone call.

I'm tired of strangers staring at me in my wheelchair, giving me a full going over while the curiosity flows across their face like a movie on a theatre screen. They look at me as if I belong in some care home or circus. I can see their thoughts, wondering if I am contagious or if my infirmity is mental as well as physical. They stare as if somehow staring will provide them with the answers they clearly need to hear. Why not just ask me? Why not just politely say "What happened?" Yet no, they simply stare.

I'm tired of complete strangers feeling that it is acceptable to touch me, patting me on the shoulders and saying something completely pointless, as if their "atta boy" or "Awwww" somehow provides some encouragement to me. It you want to encourage me, treat me like a person, not an object of pity. I am not your psychic touchstone; you cannot simply touch me for luck and walk on by. Would you do that to someone not in a wheelchair?

I'm tired of fighting for a parking spot, driving round and round looking for a handicapped spot not in use, wondering how long it will be until someone emerges, dashing to their car with the handicapped tag, clearly not struggling in any way. It happens more often than not, that the person with the tag is anything but handicapped. Perhaps the handicapped person is waiting for the car to be brought to them. If so, why use a handicapped spot?

I'm tired of fighting to live, fighting to keep going, fighting to have at least some semblance of life in my life. It's simply too much effort for too little reward. I think the reason people die from this disease is because they want to. They simply get to the point where they are just too tired.

Again

Coming to the coast is a mixed blessing for me. Seeing my Mom and Ray, my kids, my friends; these are all good things. While I am here, I am reminded of the things past, the things which were once a part of my life but are no more, the things I once did but can no longer. I can feel the combination of these two parts, the negative and positive. These feelings invade my sleep, populate my dreams, cloud my thoughts.

As I drive past Abbotsford, I think about the life I once had, a life with children and a home, a life with the sounds of laughter and energy of young people. I think about those days gone by, those times in the past that I will not see again. I think about what might have been and wonder why my life turned out this way.

As I near the coast, I think about summer days on my boat, the wind blowing across the foredeck, the sails bulging, swelling, rounded and curved, bellied out, pushing. I think about the strain of the sheet in my hand, holding and hauling the jib inward, driving the boat onward, the surging sea rushing by, hissing against the hull, my hand on the tiller feeling the vortices of water running through, cutting across the open water to a distant shore. I will not experience this again.

I think about the storms of winter, the wind blowing from the south, the tide pushing down from the north, shaping the triangle waves that slap the hull, smacking my way up the coast, seeking shelter from the coming rain and snow. I think about the warmth of the cabin as the boat lays alongside, safely tied to the dock, the sound of the wind in the wires, whistling and howling as the weather comes and goes, the heater and the coffee both warm. I will not experience this again.

I think about these rich and dark coastal forests, places where I have walked beneath the damp and dripping cedars, where I have camped, hunted, fished and explored just to see what there was to see. I think about the salmon in the rivers that once were mine, the trout in the lakes slashing silver in the waters, the warm days of summer, playing with my kids on the beach, teaching them to fish, sharing with them the joy and freedom of the woods and lakes. I will not experience this again.

I think about my family, my children, hoping they will come to visit, unable to visit them as they stay with their mother in the house that once was my home. I think about my grandchildren and wonder what stories they will hear about a grandfather they will never really know. I think about my Mom and Ray, how this dreaded disease impacts their lives, how they will remember the end of my life, hoping that perhaps, just perhaps, I will live longer than them, saving them from this unnatural state where a child dies before the parent. We spend time together, talk, share our thoughts and feelings. This will happen again; not everything is ended, not everything has been taken from me.

Life Accelerated

There is a physical, neurological component to ALS that imitates an emotional problem called the Pseudobulbar Affect or PBA. Like so many other things with this infernal illness, PBA mimics and expands on a normal life process, that of emotional expression and depression. It clouds itself within the very real feelings of sadness which are inherent in dealing with this illness. PBA is yet another part of the great challenge of this disease.

PBA seems to be related to degeneration of motor neuron pathways from the upper brain to the lower, or bulbar, part of the brain. As with everything in this illness, the actual cause and mechanism is, as yet, unknown. We know so little about the human brain and how it works. With PBA, the neurological pathways which normally manage emotional expression, keeping emotions appropriate, become “disconnected” as ALS progresses, creating out-of-context emotional outbursts. The term pseudo refers to the fact that the problem isn’t in the bulbar neurons themselves, but in their loss of connection to neurons elsewhere in the brain. So things that would normally not bother you make you cry, or laugh, all out of proportion to the cause. PBA can start early in some ALS cases, late in others, and in slightly over half the cases it doesn't happen at all. Nobody knows why.

On top of this gift of tears and laughter, this part of ALS can also occur with something called Frontotemporal Lobar Dementia. This is not a dementia in the classic sense; you don't lose your mind. Instead FTD can cause an ALS patient to become more easily confused and agitated, can cause issues with decision making, and can be linked with aphasia, the ability to find words in your intellectual lexicon and to express those words verbally.

Once again the problem is symptom imitation. The symptoms of FTD can easily be confused with the simple effects of aging. ALS is most common in people over 55, a time when most people begin to exhibit the typical symptoms of aging, including things like aphasia and agitation. Once again ALS imitates life, only moreso. And as with so many things in this disease, neither FTD nor PBA have viable treatments. The best so far is a drug to control emotional outbursts, a drug that treats the symptoms, not the disease.

So if I seem more easily agitated, more easily confused, prone to tears for what you would think is something silly and pointless, it's not me, it's ALS. No, it's not simply getting older. No, it's not emotions driven by my diagnosis. No, it's not the stress of having a terminal illness. Sure, those issues may be part of the problem. They are a part of life, only in ALS they are life accelerated.

Winter On The Coast

I am back in Vancouver once again. We drove down in one shot, straight from Calgary. It was a 13 hour run, all of it behind schedule, through rough weather conditions. It was blizzard conditions from Calgary to Banff and icy road for much of the rest of the way. I drove the first half, through the blizzard, up into the Rockies, through the Selkirks and down into Revelstoke. Kate took over for the second half, down through the Monashees and into Kamloop, over the Coquihalla summit and down the valley to Vancouver.

It's a long drive, too long for me these days. I am good for the first half but these long days are getting to be too much for me. You would think that sitting in the passenger seat of my truck would not be tiring; you would be wrong. For every mile, whether driving or not, I am focused on the ice and the road, the drifting snow, the small slide of the tires as the wind buffets the truck. It doesn't matter who is driving; it's my truck and my responsibility to bring it safely home, passengers and cargo intact.

I can usually do six or eight hours a day on the road, especially if the driving is easy and the weather good. Summer driving, with long days and limited darkness, is a pleasure, a feast of sight and scenery. Winter driving can be beautiful during the day, sun shining on the snow, glistening, sparkling, the light flickering across the mountains. When the clouds part and the crisp rays of day hit the high peaks, there is nothing quite so amazing. Down on the road, however, the ice makes your tires slide, the snow blinds, the pebbles of sand and rock spread to provide traction bounce up and down, smacking your windshield, pitting and cracking, banging the side of your truck, scratching and denting. Then the dark comes and the danger doubles.

Here in Vancouver the trees are barren, the squirrels pouncing from branch to naked branch, the leaves blown free from their hold, leaving a clear view of the occasional cedar and fir sprinkled about the neighbourhood's urban forest. The cold here is colder than Alberta, the constant moisture finding its way into every crack and pore. Even the lightest of breezes drives a bone-aching chill. The sun is hidden behind a gray, cloudy sky, filtering the light that is almost certainly shining on the high mountaintops of the North Shore.

It's winter on the coast. There may not be snow, it may not be cold on the thermometer, but it is winter here nonetheless.

Just A Minute

It's an early start today, at least early for me. Ricky is moving back to Vancouver and Kate is here for the drive down. The three of us will leave in about an hour. The drive may take us one day or it may take us two, depending on road conditions and how we get along in the car. Doing anything with other people requires extra time and patience; that's just the way it is.

The road conditions here in Calgary are rough, with snow all over the place and plenty of ice. Yesterday I tried to get out in my power wheelchair. I transferred into it, drove down the hall, took the elevator to the basement and opened the garage door, all to discover that the driveway ramp had not yet been shoveled. Apparently the power chair cannot handle 8 inches of snow and slush. I ended up going back upstairs to get my manual chair, then driving across the street to the blood clinic and the mall. As luck and irony would have it, as I was leaving the driveway was being shoveled. If I had waited five minutes I could have stayed in the power chair.

Life is like that much of the time. A minute here or a few minutes there can make all the difference to the outcome. A rushed moment or bit of extra delay change change the course of events far more dramatically than we realize. I remember once driving the Fraser Canyon with my then brother-in-law Paul. We were on one of our many hunting excursions, headed out in the darkness of the small hours. As we came around a curve a large chunk of rock and ice heaved itself off the side of the mountain. Fortunately Paul was able to swerve around it with no damage to us or his truck. I wondered about what might have happened if we had been a few minutes earlier. What disaster did we avert simply through the unknown expedient of taking a few extra minutes to get ready?

I was in New York on business. It was February 25, 1993, a Thursday. My normal week in New York at that time was to fly in on the Sunday overnight flight, and fly home on Friday night. It meant I could get a full week in with my client and yet still be home for the weekend. On this particular week, it turned out that the last of my appointments was over on Thursday. So instead of taking the noon train to the airport and catching the afternoon flight on Friday, I caught a late flight on Thursday evening so I could be home with my family all that much sooner.

Out to the airport I went, off in the plane I went. I arrived home in the tiniest of hours on Friday morning and collapsed into bed. Imagine my horror and surprise the next morning when I heard on the news that the World Trade Center had been bombed, the very train station where I would catch the train out to La Guardia Airport, at noon on Friday, the very time I would have caught the train.

A day here, a minute there, an hour or two... life is so random. There is no pattern to it, no reward for the good or punishment for the bad That's why we make up stories about what happens in the afterlife or in heaven. We need a sense of evenness in life, a sense that things happen for a reason. But they don't. They just happen and a minute here or a second there can make all the difference you can imagine.

Generosity

My grandfather, my Mom's Dad, was a great man; not great in the political or social impact sense. He was great inside, strong and caring, steady and kind. He was an amazing man, a good man, especially when you consider his life, going to work in the boot factory at age 12, leaving home for the army a few years later then serving not just all four years of The Great War, but a year after on picket duty along the border of Germany and France. In spite of the destruction and terror of that war, he emerged a man with a real soft spot, a many who knew how to love and care for his family.

I miss him a lot these days, much as I miss my own father. I miss that big snorty laugh of his, only now I realize how that laugh must have arisen from the mustard gas attacks of the war. I miss the way he, my Mom, my Aunt Margaret, my Uncle Peter and my Grandma would all gather in the living room and talk, laughing most of the time. I miss the house they lived in with its wide veranda and long balustraded stairs, the top plank just the perfect size for a small boy to slide down, leaping off the bottom like an Olympian, going for distance rather than style. I miss the dank smelling hidey hole underneath the front porch with its secret entry and lattice front.

My memory of Grandpa is short, too short. He was old when I was young, having married late and fathered children even later. Yet even in his 80's, a time when I was entering my 20's, he was a vibrant and lively man, active and busy all the time. I have no vision of him when he was not strong, when he was not working on something, building something, fixing something.

My most cherished memory of my Grandpa has to do with his generosity. As a boy my family was "blended". My father engaged in serial monogamy and was on his second wife, one who brought six daughters and a son into the relationship. They had another daughter and at one point all 12 children lived with them in a tiny house away out in the boonies.

It was my Dad's responsibility to deliver us boys, his sons from his first marriage, into Vancouver to see our Mom. On one of these visits, my Dad decided to push a few buttons and instead of delivering my Mom's sons, he added our young step-brother to the mix, delivering six boys instead of five, there to my Grandpa's front porch, leaving quickly before he could get caught in this charade. So up the steps we trooped, five and one.

My Grandpa had a bit of a ritual for us when we would come and visit in those years. When we arrived he would deliver unto each of us a quarter, a nice shiny 25 cent piece. In those days that was big money for a kid. We would troop off to the local corner store and spend our largesse quickly, fisting onto a Coke and as much penny candy as would remain after our initial burst of commercial enthusiasm. Candy and Coke in hand we would dash across Knight Street to the park, there to consume our booty.

On the day when my father delivered six boys, my Grandpa looked at Micheal, my step-brother. After a moment, the shortest of moments possible, he dug into his pocket and came up with quarter number six. Six boys trooped off to the store. Six boys played in the park. Six boys got Coke and candy.

My Dad never did that again. I suspect he was not pleased that my Grandpa had shown kindness to a child that was not of his own lineage. Clearly my Dad did not really know Grandpa. Grandpa was a generous man and I have taken that moment with me everywhere in my life. My Dad did not understand that kind of generosity; I did.

I Slept In Today

Sleep returned to me last night, fitful though it was, parsed hourly by dozy waking. I would turn, muscling my body about, glance at the clock and realize another 60 minutes had passed without my noticing the passage of time. All I can assume is that restless sleep came upon me and I had simply awoken once again. The hours passed; midnight, one, two, three, four, then six, then eight and all of a sudden 9:30 AM was here. I looked at the clock then glanced out at the new fallen snow. In my wakeful periods at night I had seen the haze of white blanketing my window's view; I knew it would be there in the morning to greet my day.

After waking at 9:30 AM, I convinced myself that I could do better, sleep a bit more. Sure enough the next time I looked at the clock it read 10:30 and I was no longer wanting to sleep. I grabbed my current historical tome, The Kings and Queens of England, something sure to test my wakefulness completely. It did not fail to tempt me back to sleep but I was no longer tired. I got up and headed for the bathroom and shower, then I dressed and made coffee. It was noon before all was complete. I am rested and ready for the balance.

It has been suggested to me that take something to help me sleep, perhaps a bit of Atavan or something like that. I understand this suggestion; people are worried about my sleepless nights and the anxiety that permeates much of my thought these days. I do not want to do this. It's not because I fear the drug; I completely understand that these sleep medications wear of quickly and don't have the side effects of older or more potent drugs.

These drugs are routinely given to patients in hospital. It helps the staff ensure that the patient will sleep through the night, making as little bother to the nursing nighttime routine as possible. These drugs are given routinely to healthy people who depend on just that bit of help, that "Mother's Little Helper", to quell the anxiousness that resides within us all. Perhaps it might make sense for me to give into the temptation of chemically induced sleep. They tell me it will help my state of mind.

Here is my reality. My state of mind is wrapped up in ALS these days. There is no helper for this condition. My body is at war with itself, a battlefield within me, stealthily encroached upon by the tyranny of my illness. Each concession I make to this disease is a battle lost. When I give ground to this disease, there is no appeasement. There is no "peace in our time" with this enemy. As I have said before, I will not willingly give in or give up; I will not go quietly into that good night. I will fight this one on my own.

I Can't Sleep

I'm tired today. For the last few nights I have been struggling with getting to sleep. I lay in bed, awake, thinking, wondering about things. The anxiety builds in me and I can't seem to shake it. As I lay there, I contemplate what is happening to me, what will happen to me, how long this will go on. I think about what has happened in the last year and visualize what will happen in the next.

As all of this goes on in my mind, my body fails to cooperate. It's not enough that sleep escapes me but comfort escapes me too. I simply cannot toss and turn as others do. For each toss, for every turn, I must manually move my legs, lifting them off, over and down. I have to reach down to re-adjust sheets and blankets; my lower legs are not strong enough to do this. I struggle, ever so slightly, with swallowing while I lay there, so I sit up, then lay back down. All in all it becomes a restless night, night after night.

This is not my situation alone. In talking with PALS, they tell me that sleeping difficulties are not uncommon. Many of them use sleep aids or anxiety drugs, helping them get past the barrier to rest and into the land of slumber. I have decided to avoid those kinds of drugs, instead focusing on my mind and body, leaning heavily on my mental skills to comfort myself. It works most of the time; the last few days have been the exception, not the rule.

Many years ago I went through a depressive period. During that time I took Prozac as a way to moderate the lows of my mood. What I found is that the drug did make the down periods less down; it also made the up periods less up. I hated the general feeling that went with the drug. My ex-wife loved it when I was drugged; it made me easier to manage. Things didn't seem to matter that much when I was on Prozac. I want life to matter. It does matter, and what happens in it matters. I want to be there for it.

If you want to live your life disconnected from how you feel, things like Prozac and Atavan are fine. If you have a true medical condition, clinical depression or some such thing, these drugs can be a life saver. For me, however, I prefer to be in touch with myself. I prefer to feel my feelings and let them go. I prefer to work through my issues and come out the other end with a better understanding of who I am and what I am doing. I'll be okay after a few days; I just need to go through this period of sleeplessness. It will end, as do all things.

I Drop Things

I am getting clumsy. No, that's not true. I have become clumsy. I am clumsier now than I have ever been before. I am more likely to drop things than I ever have before. The neurologist tells me I haven't lost strength in my hands yet, but my legs were plenty strong in the early days of ALS and now I have lost them completely.

Things fall out of my hands. I drop things, large and small. I seem to be unable to keep things within my grasp which once were there, firmly locked in place. Of course the ability to drop things has always been within my repertoire. I have, on more than one occasion, been know to drop large and expensive things into the ocean, along with small and inexpensive things. The sound of "ploop" often followed by some from of expletive has not been unknown to me.

It's not that I am dropping things. It is that I am dropping them more often, more consistently. Of course part of this is being in a wheelchair. You might not see the connection at first, but how you hold on to something is in large part a function of your overall body mechanics. Try this. Pick up something off of your table or dresser and while doing it, try to pay particular attention to your body stance and the muscles in your back and legs. You'll see very quickly that picking something up, or putting something down, or moving something from the fridge to the counter requires the use of more than your arms and your hands.

Notice your height adjustments as you do this. You'll see that your body adjusts for the elevation of the retrieval surface, not just your arms. You don't just pick up something with your hands, you pick it up with your whole body, one part adjusting to the elevation of the surface, the other part stabilizing the rest of your body as you focus on the picking task, and yet another part visually coordinating the process, trusting that the parts not seen are under the control of your brain.

This doesn't happen for me. In addition to the loss of ability in my legs and the coming loss of ability in my arms, there is the general exhaustion that continually runs through me. It means I am already tired when I pick something up. Then I only get a part of my body involved, the part that mostly works for me still. I cannot trust the unseen parts that my brain is trying to control. Finally, I cannot readily see the surfaces involved, most of them being at chest height thanks to my reduced stature in the wheelchair or requiring a rotation in the chair meaning my hands are distracted.

Life is a complicated thing. So is picking up an apple or a laptop computer or a set of keys. The problem for me is that my body no longer works the way I want it to. Automatic patterns and reactions developed over a lifetime no long work the way they are supposed to work. Things that seem simple on the surface take on whole new difficulties as I adjust from mobility to immobility. In short, I drop things.

It's OK To Sing And Dance

Pretty much every day or two someone in my online ALS group dies. It is the nature of this disease, and the nature of life. We all die. Some of us get to hang around for a while, some of us leave earlier than planned, but all of us go at some point. The challenge is the persistency of death in this small group. Every day or two, the outcome of this disease is brought home frightfully, completely. Someone dies.

It would be easy for me to settle in on this, become quiet in my life, simply sitting back and waiting for the inevitable. I could just stay home, watch TV, read, live a quiet life in my small apartment. Nobody could blame me for becoming depressed, continually saddened by the loss of my own abilities and the loss of life around me. Nobody would say I was doing anything wrong if I just curled up inside myself and contemplated what is left of the rest of my life. In fact that withdrawal is what happens to a great many ALS patients; either withdrawal and silence or withdrawal and anger.

I have a friend who may, or may not, have cancer; she is meeting with the doctor today. This is not her first round with this deadly beast, nor is it the only tragedy in her life. She has been challenged by much in the last year. She too has every reason to withdraw, to look inward, to climb inside of herself and spend the rest of her life there. She too has every reason for anger.

So what do we do when faced with the opportunity to give up, to isolate, to go inward and look out from this place of despair? It's understandable, acceptable, and even encouraged in some cases, that we should stay out of life, simply going away somewhere to die and not be a bother. Most people struggle with what to do or say to someone with ALS or cancer or some other deadly condition, not knowing how to respond to this coming loss of life. Let's face it, our illness makes many people feel threatened as they face mortality head on.

I say we should sing and dance. It's perfectly acceptable to shout with joy and laughter in the face of death, to have fun when doom lurks, to live a life filled with family and friends in spite of the rain. When it's over, it's over. In the meantime, I want to live each day as if it was not my last, but my first. I want to live each day hoping for another even though I dread the outcome. I want to be active, out there, doing what others do, living life as much as I can. After that, I will die. That's okay; everyone else will do that too. How many of them will live?

Death Doesn't Worry Me; Dying Does.

I think a lot about my death these days, about when it will happen and how, who will be with me, what my physical condition will be, how I will feel. Given the way ALS takes life and limb, I have a pretty good idea of what the process will be. Most likely I will die in my sleep, my breath slowly taken away by the ever declining strength of my diaphragm and chest wall muscles.

The problem is that it will be a lengthy process, many months filled with terrors at night as I slowly lose the ability to breath, waking in a panic as I cannot get air, struggling to clear the mucus from my throat and lungs. We know this because it is what most ALS patients go through. The "final" stages can take weeks and even months, an exhausting run to life's finish line leaving both the runner and the spectators emotionally riven, only in slow motion.

In my minds eye, I can see the wait that dying will force upon my family and friends, how they will have to see themselves through this suffering and pain. I can see it for me too. I can see them wishing it to be over for my sake, and deep inside themselves, wishing it to be over for their sake too. I can see for me too. I can see, and feel, the wish that it would just be over with, done with so the real grieving could begin and so that life could go on again. Me too.

There will be impatience, an inability to stay. My children will be far away, perhaps they will come to visit but they will not be able to stay as I go through this. Their lives, their children, their families, all will take them to places and times away from my end of days. My brothers will be far away, and even those closer will have demands that mean they cannot stay through a long and drawn out dying. My parents, Mom and Ray, may be here, but may not be. They are, as am I, facing the end of their time here. I may outlive them. I hope so.

All of this contemplation, this visioning of what will most likely be my last days, makes me want to take control, to end my own life on my own terms, to do it in a way that minimizes the stress on those around me, to quicken things, to move them along at a pace that means my death is not a troublesome time. I want to have some say in the means and manner of my death.

There are no "virtues" to suicide. It is a terrifying choice that some of us get to face head on. It is a decision some of us must make, whether we die through an active event such as "taking the pills" or whether we die through a passive event such as leaving the bi-pap unplugged one night. Either way most ALS patients will die in their sleep, slowly, voicelessly giving up their hold on life, unwillingly. The problem is that it takes so long to get there, and the road is so difficult to travel. As my brother says "It's not being dead that bothers me; it's the process of getting there".

Living Alone

My son is moving back to BC. Soon I will be living alone once again. He has been with me for the better part of a year, learning about who his father really is, learning about what ALS really is. It would have been nice if he could have made a life here in Calgary. It didn't happen; he is a West Coast boy through and through. He spent much of his time missing his friends and career opportunities in Vancouver, missing the ocean, missing his life there.

I don't mind living alone, at least not for now. His departure means I don't have to cook for two. It means less to tidy, less vacuuming, less garbage to take out, less recycling to look after. It means I don't have to hear shouting from his room as he plays online games at 2:00 AM. We won't argue about using the truck or him paying his share of the rent. I won't have to ask, and ask, and ask again for things to be done. My costs will go down.

Yet I will miss him. When there was a hockey game on TV he would emerge from his personal dungeon, his never to be cleaned bedroom. He would, if the time and timing suited him, do some of the chores around the apartment. He even did the vacuuming last week. He will, when prompted, empty and fill the dishwasher and will, on occasion, do it without prompting. He helps me unload groceries and puts them away in the pantry when asked. He does the heavy lifting without which wine making would be impossible.

I will miss him for more than what he does. He is my son. We don't get along that well but he is the only family I have here in Calgary. While friends are certainly helpful, and my friends more than most, my son was here, all the time. He has been my travelling companion, my wing man, and he has reminded me more than once that today is far more important than yesterday or tomorrow. While he may be young and foolish, he never lacked a point of view.

As I sit here today, thinking about the quiet, watching the cold, grey sky slide past in blanket of grey puckled with spots of white and even blue breakthrough now and again; as I sit here looking at my tree with its lumps of snow laying heavily on the bending branches; as I sit here thinking about living alone; I must confess that it would be nice if someone were here. I will miss him.

I'm Going To Miss The Do-Over

A couple of people have asked me lately what I felt was the greatest accomplishment of my life, or what I was most proud of in my life. I have a really tough time with this kind of question. I don't think I've done anything terribly spectacular in my life. I don't see great accomplishments or elements of my life where I deserve to be proud. When I look back on my life, I see a man doing the right things in the best way he could.

This does not mean, not by any of the wildest stretches of any imagination, that I am not proud of my children or that I do not see them as wonderful. The truth is, however, that my children are making themselves and have been ever since inception. While I have had a hand in forming them, it has been a small hand. So many other things in their lives have formed them and I cannot even begin to take credit for their successes, nor take blame for their failures. If I am proud of them, it is not through anything I have done other than to give them a belief that they can do whatever they want.

My daily life has been essentially that of a working man. I've done my job, fulfilled my responsibilities, worked my work, paid my bills, raised my children. It's not that my life was a drudgery; it's been a wonderful and wonder-filled life. I've traveled, mostly on business and at the behest of others, yet still enough on my own, within my own desires to explore. Simply travelling isn't really enough to make me proud of my life. I've had wonderful times with my children and I hope they will with theirs, yet this does not make me particularly different or amazing. I'm just a normal guy with a normal family and a normal life.

Nor has my career been one of great accomplishment. My career, while interesting and diverse, has not really changed much in the global sense. I have not been spectacular in my work. For sure I am good at what I do and have been good at many things. But writing training manuals or managing projects or running a data centre or selling securities; these are not things that change the world. It was my job and I did it as best I could for as long as I could. Then, one day, I couldn't do it anymore.

Basically I don't think I am an "accomplishment" collector, nor am I a man particularly possessed of pride. But if you ask me to look back on my life and share the fondest memories, tell of those moments that hold themselves in the forefront of my hindsight, talk about the things that have brought me the most pleasure, this I can do in a heartbeat. I loved being a Dad. That was, and still is, the highlight of my life.

If I regret anything about my impending death, it is that I will not have the time I wanted to be a grandfather. I will not get the do-over that only your children's children can give to. I will miss that gift. Being a Dad was probably the closest I will ever come to holding a true and positive image of myself. I may not have been the best Dad on earth, but I loved the job and would sign up for it all over again in a heartbeat. Fatherhood; this is my greatest accomplishment. This is the thing I am proud of.

My Movie

One of Kate's idea cards posed the following question/statement to me. It said, "A great film role I would have loved playing is ____." It's an interesting supposition, that any role in any movie would be better than, or even representative of, the life I have lead. It begs the question. Are there any film roles that would be as interesting to me as loving a woman, raising my children, having a diverse and exciting career, and living a life filled with so many amazing adventures?

Some days the edge of death does not seem so great to me. Some days as I look back on the panoply that is my life, parts of it appear as a movie set or a stage play. Events, some long and some short, evoke a visual image in my mind that is as entrancing as anything on the silver screen. Certainly I have not been in a great battle, so Star Wars is not the first visual that comes to mind. But I have done wonderful things, amazing things. It's just a different kind of movie.

If there is any kind of film role that I would have loved to play, it would be that of a well-rounded character, someone complex, with no simple answers for things. A film role for me would include a character with deep inner strength and compassion. It would tell the story of a man moving through a complex life filled with interesting people, family and friends, a life well lived.

My film would not be an indoor film, nor would it be an outdoor film - it would show both landscapes. It would show a man who is comfortable no matter where he is, a man who loves adventure whether it is in the confines of a building bound landscape, out on the open sea, or deep in some primordial forest. My film would be one of experience and learning, something you could hear and feel, no matter where it happened.

My film would not be spectacle, it would be a statement. It would be rich in colour and hue, laced with quick wit and laughter, occasionally punctuated with sadness, confounded by moments of deep meaning and intent. It would be a love story, a tragedy, a comedy, and an adventure, all rolled up into one. I would be the lead character; after all, it is my movie. Yet the lead would be shared and in many scenes I would be absent, visible only by my emotional presence, away, off camera but known, veiled but there.

I am not sure I could pick a single movie role, my life has been far too interesting to limit it in these choices. Perhaps the role of Jake Sully in Avatar, when a man with a broken body gets a new lease on mobility, finds love and purpose, and learns that life is not always what it seems; a movie where the end is simply the beginning of a new chapter in his life. Perhaps the role of William Thacker in Notting Hill, a simple man cast into a complex life, a man with a world of friends and family who love him, a man who finds love, loses it, finds it again, holds fast to it, and sees that love blossom at the end, making him a father and building his own family.

It's interesting that both of these films are basically love stories. I wonder what that says about me?

It's Not Just My Disease

It is important for me to remember that this voyage is not mine alone nor am I the only person in my group of family and friends who is being touched by ALS. I forget this sometime, sitting alone with my thoughts as I do so much of the time. Each day as I write this blog I work to focus on sharing my story, yet so often I forget the pain and emotional turmoil that my illness has wrought on those around me who have seen the decline, seen me go from an active, vibrant man to a denizen of the wheelchair set, failing in so many ways.

Last night I was at a friends place for Christmas dinner. In our group there are a number of us who will host these kinds of events. I have one this coming weekend, our annual gift exchange. Yesterday was dinner at Kay and Walter's place. It was an evening I was looking forward to, an opportunity to share laughter and fun with people who I trust, who I know care about me.

Getting in the front door was a tremendous hurdle. Their home has a very small vestibule entry with a large step up to the porch and two small steps at an immediate right angle once you enter the doorway. A couple of the guys grabbed my wheelchair and hoisted me up the outside step. Then we got into the vestibule and found we could not turn the wheelchair sideways to make the next two steps. I was stuck!

I looked at the situation and made a decision. I slid out of my wheelchair sideways onto the smaller steps. Then I slid up onto the floor, my useless legs dragging behind me, until I was well into the house. The guys lifted my wheelchair in and Walter tried to lift me up so the chair could be positioned underneath me. Unfortunately I am taller than Walter when vertical and he was unable to get the final two inches of lift. I asked him to put me down and the arguing began amongst the assembled spectators as to what to do with me.

Needless to say, I was not happy. With all the chatter going on and nobody actually looking at my situation through my eyes, I yelled "Shut up!" They did, all understanding that I just needed a moment to gather myself together. Then I slid over to the stairs and lifted myself up the first three steps. From there I got one of the guys to hold me under my arms while I did the transfer. Good thing too, for without that hold I would have gone down like a sack of flour.

Once in my chair I rolled into the kitchen. I was shaking from the emotional and physical effort, barely able to hold a plate or glass. It took me over an hour to finally settle down, to de-stress from the whole entry process. Towards the end of that hour I was sitting alone in the kitchen, trying to gain my composure, trying to catch my emotional breath. Walter came in and sat with me. I said to him, "I am beginning to isolate myself, to stay away from things like this."

Walter knew I was talking about the entry, but then he said something that really surprised me, something that really hit home. He said "Richard, you have to remember that this disease is not just affecting you. It is affecting each and every one of us. We see your illness and bear a deep frustration about our inability to do anything about it. We love you and care about you, and we are losing you, and it hurts us too."

There are plenty of times when I feel like I am making this journey alone, like I am the only one affected by this. Ultimately, the truth is that I am alone, that I am the one with ALS. But this disease touches so many about me, hurts so many of those who love me, frustrates so many of those who care for me. I need to remember this; Walter was right to remind me.

Winter Travel

It's going to be a cold day today. Right now the temperature is -27 Celcius and it is expected to get colder today instead of warmer! One would think that anyone with an ounce of common sense would stay indoors today. Apparently I am not just anyone, and I don't have an ounce of common sense. I have not one, not two, but three separate Christmas related events to go to today, and one of them is an outdoor event.

Dressing warm in a wheelchair is not as easy as you might think. Certainly I can sit on my rear end and the pillow provides some level of reflective warmth, but my lower legs in particular, with their poor circulation and lack of muscle movement, are prone to becoming really cold. I have learned from previous experiences, such as my moose hunting experience, that I need to pay particular attention to keeping this part of my body warm.

Fortunately for me, I own a snowmobiling suit. It has bib-style pants that are double insulated. I've only worn them a couple of times while out hunting; they are in great shape. I wore the double insulated jacket in hunting camp recently and I should have worn the pants too. They say that the basis of all true learning is experience, and trust me, I have experience in needing warm pants. So down came the bag with the down filled gear, preparation for my 2 hour outdoor excursion today.

The rest of my events are indoors, but even getting my wheelchair out of the truck is a chilling affair in weather like this. I need not just my regular wheelchair gloves, but extra cold weather gloves to protect my hands from the freezing ice and snow that attaches itself to the wheels as I transit the various parking lots. A couple of minutes outdoors is no big deal except that that's how long it takes to unload me and the chair. Then I get to wheel over the snow and ice to where I am headed. I am thankful for handicapped parking spots in this weather.

My friend Kay has done that for me tonight. She is hosting a Christmas party for all of us this evening. I'm taking the Chocolate Martini fixings as my contribution. When she posted the instructions, she told everyone that there was lots of parking on the street, but that they were to leave the driveway for me. That kindness means a lot to me. I didn't have to ask; she knew that it would make a difference to me.

Winter can be a challenge, but it doesn't mean I have to stay home. All it takes is some extra planning and some very kind friends.

No Rosa

Rosa didn't show up this morning. She was supposed to; this was her last day here before heading for Peru for Christmas. I don't know if it was snow, or weather, or something else, but she didn't make her regular 9:00 AM start time. She may come later and it will all be good.

The non-arrival of Rosa this morning has triggered some thinking for me. I have to start to think about what I will do as things progress, once I can no longer easily empty the dishwasher or put away my groceries. Even now some of these tasks represent a real challenge for me. For example I cannot get into the pantry in my wheelchair, nor can I reach all the way into the freezer. On the plus side my power wheelchair will lift me high enough to where I can reach most of the top shelf items in my kitchen. Groceries can get put away. Still, there will come a time, as certainly there must, when I will not be able to do even these things.

Right now Rosa's work list includes the things that are currently beyond me. I can no longer clean the bathroom, nor can I easily make my own bed. I need help with these things. I know that I can ask for help from some of my friends now and again, but I really need regular help around the cleaning and maintenance of my apartment. That will not change; things will just get worse as time goes by. I will need help.

I am not afraid of this future; I am simply thinking about it and planning for it. The renovations that my brother Jim is helping me with will take care of some of these challenges. The pantry will become an entry closet with sliding doors; I plan to put shelving in part of it as a kind of pantry. I am not sure yet what will happen with the freezer. Bathroom access will be substantially improved with a larger floorspace and door; I could probably even do some of the cleaning once I can get my wheelchair in there. The last big challenge is changing my bedding. I'll have to figure out a plan for this.

Rosa will be away visiting family in Peru until sometime in January. Over Christmas I will be out in BC, so there will be no need for cleaning. Jim will be doing renovations here in January. So my life will be a bit of turmoil for the next couple of months. I can live with that, especially since the eventual outcome will be a much more liveable home, with or without Rosa's help.

Legs Akimbo

Well... It finally happened. I knew it was going to happen eventually, given the nature of my progression and the simple facts of ALS. The loss of muscle in ALS forces all kinds of changes in the way you do things. Nearly every ALS patient has had at least one or two, and possibly more, of these changes go sideways, sometimes quite literally. For me these changes had meant falling down, but that was pretty much while I was walking. I have fallen once while transferring to a bed, but it wasn't so much a fall as it was a slide off the edge and onto the floor.

This time it was different. This time my left leg fell out of bed; not the rest of me, just my left leg. My leg was still connected to my body at this time; the rest of me did it's job and held fast, so only my leg was dangling, bouncing off of the edge of the bed rail, wobbling free from blankets and sheets.

To understand how this can happen, you must first understand how I get into bed. These days this is not a simple procedure. First, I wheel my wheelchair parallel with my bed. Then I use the M-rail on my bed along with the right arm of my wheelchair to force myself vertical. Once my knees are locked, I transfer my left hand to the top of my dresser, along with my right hand, and completely force myself into a position that somewhat resembles standing up. Now that I am up, I rotate clockwise 90 degrees and sit down onto the bed.

All of this has worked reasonably well for me so far; the wheelchair gets in the way a bit so I have to manage that. After sitting, there on the edge of my bed I can wiggle my pants off and disrobe myself of shirt and socks. I sleep in my boxers, so at this point I lean backwards enough so that my center of gravity is far enough astern to prevent the dreaded bed-edge slide. Once well back, I use my arms to lift and swing my legs onto the bed.

This activity leaves me in bed, but at an angle. The nature of the lean puts my head further inboard than my legs, especially given that my leg flinging ability is limited so late in the evening, often impeded by that last glass or two of wine. Yet with all this I manage to move, wiggle and adjust the covers such that I can sleep.

Usually I start sleeping by rolling onto my right side. Heaven knows what I will do when I can no longer roll; it will most probably involve not sleeping on my side. As of now, I start on my right then during the night I typically roll from one side to the other a couple of times. Rolling involves rotating my upper body and using my arms to move my legs, or alternatively, I rotate far enough that my hips eventually force my feet to rotate along with me, and my legs make the trip with a sudden lurch.

That's when it happened last night. I was rolling from my right to my left. I stopped in the middle for a bit of a rest. Once rested, I rotated from my back to my left, allowing my hips to fling my legs. That's when my right leg suddenly released the pressure on my leg. The momentum from my now highly mobile left foot dragged my left leg past the edge of the bed and into dangling space. I had over-flung myself. Since I was at an angle to that bed edge, my right leg remained on-board and I simply felt the cool night air on my foot and lower left leg as it swung in the breeze.

So I had to fully wake up; my leg needed reloading. By this time I had to pee, since my body seems to feel that any waking moment is a moment for that function to take place. So I slid my right leg over, sat up, used the jug, then slid both the innocent and offending appendages back into bed. I adjusted and returned thus to slumber, adventure complete.

Standing Alone

I am in a difficult emotional place these days. Of course, with ALS I am almost always in a difficult emotional place. Where I am right now is different. I don't know if it is brought on by the challenges of the winter storm the other day, by the time of year, or by the fact that I am now about a year past my diagnosis; one down, two to go. No matter. Where I am emotionally these days is just another part of ALS.

I feel very alone these days. This is not loneliness; I know very well what that looks like. In fact I am surrounded by people these days. There are friends who check in on me, friends coming over, friends when I go out at night, business contacts, social contacts, lots of people around me. I am not alone in the physical sense, yet I feel very alone, very solitary in the midst of this human crowd. In addition to feeling my physical isolation growing, I can feel my emotional isolation growing.

Part of this is most certainly that I am home alone. This apartment is very quiet with only me, just tip-tapping away on the softly dampened keys of my laptop, listening to the clock on the wall behind me, nothing but the glow of the deep southern sun shrouded by morning weakness, edging just a bit of yellow tinge onto the walls of my living room. The noise below is muted by the snow, the silence is all I have.

Those of us with ALS know this sense of feeling alone all too well. There are so few of us, only a handful for every 100,000 "normal" people. Here in Calgary you could barely fill a city bus with us, assuming you could get us out of our wheelchairs and safely on board. The online community is vibrant and active, but I am the kind of person who lives for human contact, shared conversation, the interactions of life. Still, I talk and text with other PALS and they too have this sense of solo, this feeling of being the only one in the room.

Caregivers for ALS must feel this too. I do not yet have a caregiver; I still take care of myself. Perhaps this is a part of that aloneness I feel, I don't really know. All I know for sure is that these days I feel more and more like I am standing by myself, singing alone in a forest, or perhaps whistling alone in the dark. I just feel like I am the only one here. Even if you were standing beside me, I would still feel this way.

Locked In

I am housebound; well, almost housebound. Were it not for the fact that my truck is parked indoors, underground in my apartment building, I would be trapped by the blizzard which has struck Calgary and environs over the last couple of days. There is a deep, heavy snow on the ground, the depths reflected in the snow collected on the branches of my tree, the tree in front of my living room window. The snow continues to fall, lightly and sparsely, the grip of this storm not yet fully past.

There will come a time when I will be a complete shut-in, unable to move my body, unable to force my muscles into walking, or even managing a wheelchair. When I lose my hands and arms completely, I will need full-time care; I will be unable to move a muscle, to even speak. When people reach this stage of paralysis, the medical community calls it "locked-in syndrome". I'm not there yet, but being trapped indoors by snow is one of my early indicators, one of the harbingers of my future.

There are services, primarily focused on senior citizens, for those of us who are shut in by the weather. It is one of the distresses I deal with daily, that sense of being old before my time, needing services for those who are infirmed by age and not by ALS. If I ride the complimentary bus to the local Co-op to go grocery shopping, the average age of my travelling companions is 80. It's not that they are not nice people; they can be wonderful people. It's just that I am surrounded by the effects of age and I am only 58. My clock is running faster than most others; my time is running out before my time. I would rather take my truck while I still can.

So here I sit, wondering about my day, thinking about the snow, wishing back the time when I would kick the drifts as dust, watching the snow blow away in the wind. Here I sit, thinking about the cold winter air, wishing back the time when I could feel that biting wind as I stood tall against it. Here I sit, looking out my window at the falling snow and wondering what next year will bring, what losses will come. The losses are coming, someday, tomorrow, in the future.

For now I am locked into looking at the snow out my window and remembering last year, when I could walk over to the mall, when I could still feel the crunch of snow under my feet, the bite of winter on my face as I strode the road across. For now I am looking at the snow from my wheelchair, able at least to get to my truck and generate some sense of freedom and mobility, artificial as it is. For now.

My Way

I wanted to put up my Christmas tree yesterday. I had a plan for the day and that plan included putting up the tree sometime later in the afternoon. I got up late, having been out dancing the night before, and posted a note on Facebook hoping my friends would see it, then descend in a hoard to help me. My friend Dion came over in the morning and helped me with some things that needed doing. Dion has been tremendously good to me in the last year, right from the moment of diagnosis onward. Then he asked if he should put up the outside lights for me. I said "No. I'm sure Ricky will do it". I was wrong, about the descent of a hoard and about Ricky putting up the outside lights.

One of the most challenging things about having a disease like ALS is dependency. I have always been a fiercely independent and capable man. Finding myself dependent, a burden on others, is a hard change. Finding that I cannot do things on my schedule, on my plan, that I have to wait and depend on the schedules of others and on their plans, this is emotionally and psychologically the most challenging part of this dependency.

I am not alone in this; other ALS patients face it too. These feelings of frustration and limitation are not mine alone. Here are a couple of recent comments from other PALS struggling with the loss of their ability. "Today is another example of how I feel I am becoming a burden to my family. My wife would like to travel this year to visit family at their home and NOT be the Host again as this adds to the work she has already taken on. I completely understand this. ...No bathing facilities on the main level will make it even less enjoyable. The trip would be 5 hours by car OR 4 hours by train, then 1.5 hours by car. I hate that people don't' seem to be enjoying the season because I am unable to do a lot of what we have done traditionally."

Then there is this recent posting from another PALS. "Thanksgiving may have come and gone but I'm not done. We have guest(s) for (an) extended period of time. The remodeled bathroom is being tested thoroughly. The new bathtub had a slight a plumbing leak. It cost us a ceiling tile downstairs to find out. I am totally stuck in the wheelchair and cannot even go down to look at it. I called my best friend, (name removed). He came over this Sunday and fixed it in a jiffy. He is in the middle of building his own house and has many other irons in the fire. I am so thankful that he came over and took a look. Do you have any idea what it's like to sit in this wheelchair completely powerless and then to come and have somebody help you?"

If you wonder why I want things done "my way" or on "my schedule", think about your plans for today. What of those plans would change if you had to wait on someone else's schedule or do it someone else's way? What would change for you if you couldn't walk, couldn't talk, couldn't reach things or grab things? What would you do if you lost your freedom and independence? Who will help you feel like you are worth it? Who will help you put up your Christmas tree? Are you sure?

The tree is standing, plain and bereft of adornment, in the living room. The lights are in a tangle on the floor. The outside lights are in a box beside them. I will get this done somehow, my way.

My Story Is Not About ALS

Don't let your life get in the way of your living. It's something I live by, every day. It would be very easy for me to settle into a passive life these days, isolating myself and letting the walls of ALS come in closer and closer to me. I have chosen not to do that. I have chosen to live my life as fully as possible regardless of how it crumbles around me.

So many people see me as "inspirational" around this but I am not, not really. All I am is a life-loving guy who wants to live until I die. There are so many people I see who take their life passively, letting life happen to them, blaming their troubles on what life has done to them. It's not victimhood on their part; they've just grown resigned to not getting what they want out of life and seem willing to accept that what they have now is all they will ever have.

In fact it upsets me when people say things like "you're so inspiring". If all it takes to inspire you is a guy in a wheelchair going about his daily life, you must lead a pretty uninspiring life. Perhaps that goes back to my first point. Perhaps they are inspired because so much in their life is bland, tasteless to them. I am not trying to be inspiring; I am trying to live as much as possible before I die.

It would be fair to say that I have been handed a tough deal in these last months and years of my life. There is no doubt that I drew a short straw with ALS. I don't want to be defined by that straw, limited unnecessarily by what life has handed me. I can live, and live well, even with these limitations. That's the real inspiration, not that I can live, but that I choose to live vibrantly, in technicolour instead of simple black and white.

Last night I went out dancing. A number of women asked me to dance simply because they saw me out on the dance floor in my wheelchair. While I would never say no to an opportunity to have fun, I felt almost insulted in a way. Would they have asked me to dance if I wasn't in a wheelchair? I will never know for sure, but I suspect not, mostly because I would likely have asked them first. Being in a wheelchair slows me down a bit.

Still, even though having a handicap does not have to be a handicap, I don't want pity. I don't want to be known as that guy in the chair. I want to be known as that guy who lives a full and active life, that fun guy who loves people, that interesting man with an amazing story to tell. That story will certainly include ALS, but it will also include all the terrific things I have done and have yet to do. After all, I am going to live until I die; I want to continue to live before I die.

Of Mice And Men

There's been another article posted on the Internet by another research team presenting another breakthrough in research around treatments for ALS. This article, along with a host of others, presents a picture of incredible developments with fantastic possibilities, raising the hopes of thousands of terminally ill ALS patients, the hope for a treatment, a cure, a tomorrow and a future. The only problem is that so many of the research discoveries are not the hoped for miracle, they are not the hoped for cure.

Today's article is another in an ongoing bombardment of articles announcing a major advance in ALS treatments using a mouse model. In this particular study, researchers "succeeded for the first time in stopping the degeneration and loss of motor neurons and the progression of symptoms of the disease". This is indeed very good news for mice with ALS, however the key line in the article for those of us humans with this dreadful disease is "While this result was achieved with a model mouse, it is thought that a similar molecular mechanism underlies sporadic ALS in human patients..."

Notice that "it is thought" part. The truth is that researchers can cure lots of things in mice that they cannot cure in people. Diabetes springs to mind as one of the examples. They've been able to cure diabetes in mice for some time now and it is only recently that any sort of progress has been made in replicating the result in human studies. They have'd done it yet; there is still no cure for diabetes in humans. The harsh truth is that they just don't know how to make that leap from mice to men.

However, this article is not a lot of smoke and mirrors, nor is it a simple fund raising exercise. One of the greatest challenges in treating neurological disorders of any sort is having treatments which move across the "brain/blood barrier". We have a system in our brain that stops foreign genetic contaminants from transferring from the blood to the brain. This is a good thing as a lot of bad stuff moves through our bodies and we don't want that stuff in our brains. Watch the movie "The Fly" with Jeff Goldblum; you'll see why.

This particular study successfully introduced genetic material into the blood stream and that material crossed the barrier and impacted the genes that are thought to cause ALS in humans, and mice too. It showed that it is indeed possible to target genetic repair, even in cases of sporadic ALS, using a simple injection of genetic material. It paints the picture of a possible cure by doing something as simple as getting a shot at the doctor's office.

This research does not offer a cure, at least not in humans. What it does is show a pathway for delivery of genetic repairs, something that will benefit a great number of diseases. That's a good thing, for both mice and men.

Thank You

This is blog entry number 366. I have a full year of blog entries behind me and have missed only one day, New Year's Eve of 2012. When I started this blog I did not know how impactful it would be, to me and to many others. My intent at first writing was simply to share my life with those around me, to give my family and friends a window through which they could view this process, this march down the pathway of ALS.

My first entry was short, simply an introduction to what was happening to me. When I wrote that first entry on November 28, 2012, I thought it was a simple statement about me having ALS. As I read it now, with a year behind me of struggle and change, I realize that it was in fact a fist of challenge thrown up in the air, a revolutionary salute, defiance flung in the face of destiny. What I did not know then, but know for certain now, was that the first entry in my blog would be my manifesto, my statement of intent.

That statement is truer today than it was 365 days ago. On that first day, I wrote "My simple choice now is what I do with the rest of my life, just like everyone else. My choice is to live with ALS, not to die from it. Of course I will die from something, but today I choose to live." Each day from that moment I have chosen to renew that vow, to raise my fist once again and demand life from the face of death. Each day I have made the personal commitment to move forward and to keep going.

Since that day there have been nearly 60,000 unique page views. There are hundreds of people each day who take the time to share this voyage of discovery with me, so see these new lands and far horizons through that window, filtered by the lens of these words. The bulk of my guests come from Canada and the USA, yet many come from elsewhere. These virtual visitors arrive on my literary doorstep from all across the world, places as diverse as China and Europe, Central Africa and South America, Australia and India.

There have been comments by the hundreds, and not just from my Mom. People have reached out and shared their stories with me by email and on Facebook, followed me on Twitter, shared their lives with me in person and through the ether. To read these statistics, each representing a search for something, a reason for knowing, is to discover that, despite my greatest fears, I will not die alone. I know you are out there. Thank you.

I Wonder

I am regularly touched by the compassion and care shown, not just to me but to many, by PALS in far worse shape than me. At the same time I hear from a great many of them, how their struggle with this awful disease has left them bereft, aimless, wandering in their lives. I hear from them about their joys and pleasures, and I hear of their pain and struggle. Then I wonder why. I don't wonder why they got ALS; nobody knows why we get ALS. I wonder why about a great many other things, but mostly I wonder why they keep going, keep fighting, keep struggling to live a life against these terrible odds and with this horrible affliction.

Where does this will to live come from? This morning I awoke thinking about my own future, about what will happen with Ricky moves out and returns to Vancouver, something he must do eventually; about what will happen when I can no longer hold anything in my left hand and eventually my right hand; about what will happen when I no longer have the money to pay for my truck or apartment; about what will happen when I can't even get out of bed.

Then I got a message from a fellow PALS, a man who has no meaningful movement, a man who is stuck in bed most of the time. He too was wondering why we work so hard to keep going.

The counselling psychologist tells me to focus on today, to focus on living in the moment. When I ask about rent and car and food, he rightly points out that these things happen whether or not I have ALS. The difference is that with ALS I am no longer working, no longer producing wealth but instead consuming it. He points out that my financial situation is good for another year or two, and who knows what might happen in that time. Well, based on all the data and information available, I know what will happen. My condition will deteriorate. I will become more and more physically infirm. I will lose everything and be left a shell. That's what will happen.

Yet today I got out of bed. Today I got dressed. And when my online friend reached out to me I said to him that if I was there we would sit on the couch together, drink a beer, and watch football. He's going to do that today, with family and friends all round him. When I get that far, I wonder where my children will be? I wonder who will be with me? I wonder how I will spend that day?

My Left Arm

Everyone with ALS wants to be the one who beats it, the one who recovers from the muscle loss and destruction of this illness. Everyone wants to live without the wheelchairs, hoyer lifts, bi-paps, trachs and all the other accouterments. Everyone of us wants out of this place, off of this path, away from this progression. I am no different; I live in the foolish hope that something good will happen someday.

It did not happen today.

Over the last few weeks I have been noticing a tiredness in my upper left arm, rather like the tiredness I felt in my legs during the spring of 2011. I've noticed an ache in the muscle, a sort of low grade sense of pull within it. That ache has translated into me doing things just a bit differently, taking a rest when doing heaving lifting, favouring my right hand, using my power chair more willingly. That ache was something I had seen before.

Today I went to the ALS Clinic, something I do every couple of months or so; my last clinic resulted in the warfarin for the blood clot in my left thigh. Over the summer, however, there had been almost no change in my condition. The progression seemed to have slowed and perhaps even stopped. The doctors warned me that this could change just as quickly to progression as it did to pause. They warned me that this dark beast could, and would, rise up again to steal more from me, that it would come and eventually take another part of my life.

I did not want to believe them. I wanted to be that one person, that person for whom the rules of ALS changed. I wanted to be the person who got stuck at lower paralysis, living a vibrant and active life with the upper half of my body, at least for a while. I wanted to be the patient that others talked about, that guy who went on for years and years, without any further progression.

It did not happen today. At the ALS Clinic today we identified that ache in my left bicep as the subtle onset of muscle loss, the beginnings of the beginning, that infinitesimally small initial step down the path leading to a destination I know all too well. Today ALS decided that my left arm was up for grabs, only it is taking from me the ability to grab it. Today I found out for certain that I will not be that one, the one who beats the odds.

How long will it take? I don't know. It took almost 2 years for me to lose my legs completely, but my arms may be different. I don't know. All I know for sure is that my left arm is weaker today than it was yesterday.

A Weird Kind Of Challenge

I bounce back and forth. I have always bounced back and forth, one day feeling like life is amazing and a few days later feeling like it was just wasn't worth the effort. Now, with ALS, that bounce is even more noticeable, more visible, not just to me but to those around me. Mostly I try to cover it up, try to put on a happy face and saccharine my way through the day. Even with all this, if it is not visible to others it is most certainly visible to me.

Today is the wrong side of the bounce, the sad perihelion of my emotional pendulum. Today I am asking myself "Why bother?" Before anyone freaks out, runs to the phone, hops on a bus or posts all kinds of sappy support statements, this is just another curve in the road of my life, and not even a sharp one at that. Everyone has down days; it's just that mine take on a much different, larger, more oppressive hue, richer in blue and black. I have a bloody good reason to be down.

Last night I was online chatting with another Person with ALS. We both agreed in wondering why we kept trying. If you look at it rationally, with no hope for a cure and not even a reasonable treatment, there is no good outcome to this disease and, by and large, a very poor quality of life as one goes through it. Day by day our lives are stolen from us, not as they are from others, in simple aging, but in an ever accelerating downhill slide into decrepitude. Our lives do not simply pass, they race past, leaving our dreams and hopes spinning in the dust like a license plate in a bad movie scene.

It's no wonder we ask the question, "Why bother?" In fact the most amazing thing is that we bother at all. It is the highest testament to the human spirit that those of us with this disease don't simply give up at the first opportunity. I know we all, or almost all, think about it daily, if not hourly, depending on our condition. I, along with many other PALs I talk to, constantly weigh the balance of our lives, wondering if we should continue, living with the pressure of death. Yet onward we go, unable to quench our desire to live and our hope for tomorrow.

I don't know why I bother. I just do. As my online friend said while describing a particularly difficult moment in his day, a day spent hacking up phlegm, unable to moving, trapped in his bed; "...tomorrow there be small beautiful moments, but I just wanted it over during that (difficult) stint... I have this feeling that I have to see it through to the end otherwise I would take myself out. I have no heaven or hell fears, but it feels like a challenge in a weird way."

Chinook

My weekend adventure is over. Once again I am back in my little apartment, looking out over the parking lot and mall across the street. Once again my life has moved from fairy tale to reality, with household chores and busy tasks lined up for me to attend. Once again I am living my daily life having traded the silence of the surrounding forest for the hum of traffic, and the chatter of surrounding friends for the silence of my living room.

It's not that being here is bad. In fact living here in my apartment is a good thing for me. It is well situated for my life needs, well placed in terms of daily activity. The stores I need are across the street or nearby. I can get there with my power wheelchair when necessary. Access to the building is simple and easy, with ready parking at hand and completely undercover, a must have here in Calgary for someone in a wheelchair. Things are alive around me, just differently alive than the woods and trees that I love so.

The scene here is ever changing too. It moves from day to day, snow to sun, blue sky to grey. When the Chinooks roll in over the Rockies, driving warmth before them in westerly winds, causing the temperatures to shoot up from below freezing to almost springlike, the snows melt and the grass shows through. Then, only a day or two later, the snows return and winter is once again ensconced in my world. These changing scenes, the ever moving vista of life around me, once again reminds me that life is a busy, active thing. Like that life, I need to be busy and active.

I need to do something with my life; I am not yet finished with it. I have more to accomplish, more to change, more lives and people to impact. My work here is not yet done, yet the very effort of it wears upon me moreso than one might expect. This disease is aging me early, forcing the impact of failing life forces into me, stealing away my ability to have my body do what my mind would will. Like the forests sleeping under the winter snow, somewhere deep inside me there is yet life. Like the Chinook over the mountain, all it needs is the smallest warmth to bring it forth, to let it be nourished.

ALS steals my Chinook. ALS is winter, never to be followed by spring. ALS is the unchanging, unremitting march of a destiny too soon for me. I am not done yet, no matter what this disease does to me. Listen to me! I am still here!