Sunday, 31 August 2014

Pioneer Square

All things have a natural rhythm to them, even the irregularity of a random road trip. Mornings come, days pass, miles go by, evening arrives. We start from some place, visit some things, go somewhere else, and stop. Even in the inconsistency of a wandering life, there are events and actions on which you can depend.

The one great thing about travel is that you see different things, different ways of living, places you have not seen before. Even when you travel to the familiar, it takes so little to see it through different eyes, to look at the common as if it was unique. Life does not have to exist in the boring tedium of the unchanging; even if you don't travel there is so much new to be found every day, right where you life. Travel is not necessary for life, it just makes it more interesting.

Yesterday we started with a trip to the Boeing Museum in Everett, Washington. It was not a great value, spending $10 to see a bunch of static pieces and display boards. Personally I think the "gallery" is just a way to hold you in the building until you get the tour of the Boeing factory. Unfortunately our wait yesterday would have been about 3 hours; to be honest, spending 3 hours waiting to see an airplane factory was not something I wanted to do. It wasn't the additional $10, it was the lost time in my life.

After Boeing we headed to the Seattle Center to see the Space Needle and the EMP Museum of Pop Culture. I've been to the Space Needle a couple of times; it wasn't necessary to go up. The EMP Museum was where we really wanted to go, a place I would recommend. It had a great exhibit on Sci-Fi and Fantasy writers, a terrific display of guitars, and a wonderful collection of architectural displays made out of Lego. We spent a couple of hours there until I became truly over-stimulated. I was done; so was David.

I wanted to go to the Dale Chihuly Glass Museum and Garden but I was simply too tired. Instead we decided to head south. On our way out of town we stopped in Pioneer Square for a moment, where I parked next to the Mad Mouse Toy Shop while David got us coffee from the Starbucks across the street. This location, this store, holds may memories for me of times when I took my kids there, and then to Cow Chip Cookies across the street. I sat there lost in a few moments of melancholic nostalgia while the traffic pushed past, waiting for David to return.

The rest yesterday was the long drive from Seattle to McMinnville, Oregon, where David wants to see the Spruce Goose. That, along with heading east after lunch, is our general plan for the day.

Saturday, 30 August 2014

Moving About

I am sitting the the living room of my suite at the Embassy Suites in Lynnwood, Washington, just north of Seattle. David is here researching what we will do today, and tomorrow. There is almost no noise yet I can still hear the sound of a baby screaming in the breakfast lobby below. That kid's got volume. The noise passes and the only sound remaining is the click-click of the keys as I tap away at the keyboard.

Outside it is raining, the soft kind of rain that permeates this coast, small enough to filter into every pore and crack on your skin. The sky is covered in a dull grey blanket stretching from the tree rimmed edge of my horizon all round. There is no break, no ruffle, no patch of blue; it is a solid, soaked, leaden blanket offering no reprise from the rain. They call Seattle the Emerald City because it is so green; this weather is the reason. It may stop raining today, perhaps tomorrow. By then we will have moved on, down the road to Portland or perhaps Bend, eventually wending our way to southern Idaho before we turn north once again and head home.

I have a quietude about me this morning, a thoughtfulness that is also seeping inward. I am enjoying one of those rare mornings of calm and ease. While my fingers are sore, along with my arms and neck, I am okay with the whole thing. It is what my life has become and I am becoming more and more used to it. It is an internal sense of equilibrium, where the stress of travel has left me and the excitement of the road has not yet arrived.

Suddenly there is a bang, a slam of the door next door. It looks as if my neighbour has suddenly realized the free breakfast will end in a few minutes. It passes, the sudden shock and noise disappearing as quickly as it began, and the quiet returns. Today will have other excitements; David wants to see the Boeing Museum and the EMP Museum, and maybe the Spruce Goose. I simply want to enjoy another day of being alive, another day of freedom on the road.

I like road trips. They reek of promised adventure and expected unknowns. They turn life into a passing play, a show to watch as we move along the highway. Perhaps it is the simple act of being in motion, where I can pretend that my disease is not real, where I can escape the bounds of ordinary daily life. To move about is to be free; one day that will be stolen from me too, but not for today.

Friday, 29 August 2014

Anger Like A Mountain

There is an anger deep within me, an anger that sits unseen for the most part. This anger is the anger of ALS, the anger at the loss of my life, at my failing abilities, at the opportunities I might have had. I keep this anger away from people, at least as best I can; there are times when no amount of restraint or self-control can stop the anger, and more often the frustration, of ALS from spilling out of me.

I liken this anger to an old, ancient volcano. It is a solid mountain, seemingly. It rises about the lowly things that gather at its base, feeding that which needs to be fed from the minerals within, creating a weather system, a life giving system, simply through the process of being a mountain. Yet deep below this mountain lies a chamber of brilliant boiling lava; a magma chamber kept in place by the strength of solid igneous rock above.

The mountain would not exist but for the lava that once flowed freely. That solid dome of granite that grew above it encased the lava, keeping it deep within. But that lava, that anger, wants to come out. It seeks the cracks and flaws in the stone above, finding the thin slivers that lead to the surface, bubbling out when it can, exploding out when the pressure is too much. That anger rises, regardless of the strength of the stone.

When that lava explodes, it damages so much. The anger hurts so many around me, scalding them in the heat of my frustration and distress. Like the mountain, I hold that anger back, keeping it safe, deep within. The lava need not see the light even though it will find the odd crack here and there. The pressure will be eased by other things, doused and cooled as best I can, even though the anger continually resides within me.

Like that mountain with anger beneath, I stand seemingly strong. Yet all that needs to happen is for a weakness to appear for that lava to seep out. Perhaps it is another person who fails to see me as they walk past entranced by their cell phone, near stumbling into me in the process. Perhaps it is the woman who rushes in front of me to get into the elevator because my wheelchair takes up too much room. Perhaps it is the sense of uselessness that goes with needing others to help and care for me. Perhaps it is that moment when I realize that I am no longer what I once was, can no longer do what I once did.

It doesn't really matter where the cracks appear. In my case they don't let the light in so much as let the lava out. I try not to share the anger much; I don't talk about it very often. After all, it does no good. The anger is within me; it will only die when I do the same. It doesn't eat me from inside. It doesn't dominate my days. It isn't the thing that will kill me. I will leave that up to ALS.

Thursday, 28 August 2014

Summer's End

Mornings are tough for me, especially early mornings when I have to get up to accomplish a schedule or make a meeting. It takes an awful lot of energy for me to even get dressed, let along transferring to my wheelchair and completing those things that need to happen first thing in the day. When ALS was just stealing my legs, it wasn't so bad. As the disease progressed and exhaustion became standard, mornings started to bet worse. Now that ALS is attacking my arms and hands, they ache from the moment I get up.

It would be easy to dismiss this pain as a simple effect of aging; it is a common mistake that people make when they first start to show symptoms of ALS. Unless, of course, you are 25 years old. Then you just wonder why the heck you hurt so much. Nonetheless, it is the pain of ALS, the early signs of muscle loss, the desertion of fine motor skills in your hands and arms. That is how mornings feel, and moreso for me.

Yet here I am, up early. I am headed to Victoria today, taking the ferry from Tsawwassen, a short drive from my Mom and Ray's place, to Schwartz Bay. Although the drive time will be about an hour, the trip will take about four hours thanks to waiting for the ferry and the ride across the Salish Sea, what I used to call the Georgia Straits. I look forward to the time on the ferry; it is time on the water once again.

In order to make this run, we needed to be up early. My Mom has a doctor's appointment at 11:00 AM and they want to leave by 10:00 AM. In order to be ready to leave at the same time they do, I have to be up at 8:30 AM. It takes me about a half hour to dress, including putting on my compression socks. After dressing and getting ready for my day, I write. Then I will pack and go. That takes a lot of time for me.

All of this is worth it, worth the effort and energy, the exhaustion and pain. All of this means I will get to see my daughter and grandchildren, possibly as early as this afternoon. All of this means I get to see Victoria through the eyes of David, the friend who is doing this road trip with me, someone who is seeing this quaint and lovely city for the first time.

Oddly enough a couple of other friends from Calgary will be in Victoria today. It is the long weekend and Victoria is a place a great many people want to visit over our short Canadian summer. That summer officially ends this weekend. Schools start except where there are teacher's strikes as they have here in BC right now. The days grow cooler and the nights get longer. Winter approaches, yet while summer is still here I will take what I can from it; exhaustion, pain, and ache aside.

Wednesday, 27 August 2014

Incremental Loss

I am in Vancouver, awake and mobile. I was up early this morning, off to do an interview at Global News BC. I have done a few interviews lately, enough so that my message is becoming consistent. It would appear that I am reasonably good at this, at telling my ALS story and the story of so many with this horrible disease. Yet even with all this attention there are those who still don't know what this disease is, or why it is such a scourge on those of us stricken.

Yesterday was a great example of the creeping incrementalism of ALS. We, David and I, drove from Calgary to Vancouver yesterday. I drove the first shift, until Golden. Then David took over until Kamloops where we had dinner. Then I took over as we headed down the Coquihalla Highway, breaking through the mountains and racing along side the Fraser River in towards Vancouver. We got here at about 10:00 PM, exhausted.

That exhaustion, for me, was complicated by more stomach troubles. I seem to be having lots of them lately, a persistent diarrhea requiring additional care and caution in the bathroom. Thank goodness I have lots of spare clothing to wear. Last night, however, we came to my Mom's place, an apartment where I cannot get into the bathroom, and I really needed that bathroom. So my friend David literally lifted my wheelchair around the corner of the bathroom and into the door, positioning it so I could make the transfer to the toilet.

Once complete that which was so urgent, I tried to wiggle back into my pants while sitting on the toilet. It's the only way to get this done. However with Mom's toilet and bathroom I was simply unable to get it done. So I got halfway there and asked David to help me back into my wheelchair. He then pulled my chair, with me on board, down the hall, once again lifting it around corners as needed. He maneuvered my chair into the bedroom where I would be sleeping, and where I planned on using the bed to finish the process of wriggling into my jeans.

It was then that I discovered that over the last few months I have diminished enough that I can no longer do a direct transfer onto the bed. I simply am no longer strong enough to get the vertical and sideways motion needed to move from chair to bed. David had to help me with that too.

This is what I know about ALS. The incremental losses eventually catch up to you; you just don't notice them in daily life because you adjust. It's not until a rare task comes along that you discover how much you have lost since the last time you tried it. It's a tough disease some days.

Tuesday, 26 August 2014

Not This Trip

I am about to head out the door on a road trip with my friend David. Both he and I are micro-managing control freaks so it should be an interesting time. Actually I am looking forward to it a lot; I have learned to relax once I am underway and I know David will too. It's just the beginning of things that is a challenge, and funny to watch according to my daughter.

Right now David is heading across to get a last minute prescription filled. Then we will transfer stuff from one vehicle to another and park his car in my spot in the garage. Once that is done, we will head to Vancouver as our first stop, followed in a day or so by Victoria, then Seattle. After that, we will wander our way home through Oregon, Idaho and then Montana.

I love the drive through the mountains to the coast, those massive peaks defining the continental barrier separating coastal BC from the great prairies that sweep out of the north and run clear through to the Gulf of Mexico. Here in Canada we call them the prairie provinces; in the US they are called the great plains states. In both cases it is an impressive shift from the gentle rolling plains to the spires of granite.

Each time I do this drive I wonder if it will be my last. It is the vanity of spirit within me that convinces me continually that there will be another time, another trip. I even think about the road trips that might happen after I can no longer drive, where I will perhaps convince one of my many friends to take me up into those heavens of stone once again. Yet I know that one of these times will be my last time.

When my Dad was dying, in his last few weeks, my brother Adam arranged a fishing trip, the last fishing trip my Dad ever took. I remember the look on his face when we drove along the coast of Vancouver Island and he looked out over the Georgia Strait to the mountains across the water. I think he knew that this trip would be his last, that this view of the mountains would be his last, that he would never again see the glisten off the water or the life of the ocean's surface.

That will happen to me. But I am not yet convinced that it will be this trip. Maybe the next one.

Monday, 25 August 2014

Going To The Zoo

I'm sitting here listening to my daughter neegotiate with her daughter with respect to the appropriate clothing to wear to the zoo. Apparently a Princess Rapunzel dress with matching shoes will not make the cut despite furious negotiation on the part of the younger. An adventure clothing set, says Mommy, would be much more appropriate. The negotiations ended with the younger being able to wear her Rapunzel dress for five minutes before we go, just long enough for me to do some writing, since as I know, five minutes for a woman is never five minutes, even when that woman is 3 1/2 years old.

It's fun, and frustrating, to watch my daughter parent her daughter. I would do it differently; we all have different approaches and responses to parenting. The more interesting aspect of this is that parenting never ends, even with an adult child. We talked earlier this morning about some of the challenges of having children, of having to be a parent constantly. It is one of the things in life that never changes, regardless of generation. Parenting is important work, hard work.

Grandparenting, on the other hand, is much simpler. All I need to is be generous, funny and kind. When I got up this morning I had to go out to arrange my driver's test; I will do it when I get back from my road trip over the next couple of weeks. This test is required because I have handicapped controls in my truck. Since I have a degenerative disease it is required annually from now on; I suspect this will be the only one I ever take, the last one I ever take.

While explaining to my granddaughter that I had to go out, the inevitable "why" was almost immediate. I explained to her that I had to go to a doctor kind of meeting, something simpler for her to understand than a medical driver's test. She furrowed her brow into a serious look of concern until I told her I would be back soon, and then we would go to the zoo. It's difficult to explain to a child that Grandpa will only be with her for this short while, then gone.

This is another of the tragedies of ALS, that I will not see her go off to school, graduate, learn to drive, choose a college or career. I will only have these few days, then she will return to her home in BC. I will see her again at Christmas, along with my other children and grandchildren. Then, it will be done. That's just the way it is.

Sunday, 24 August 2014

A Pink Fishing Kit

I am in a home surrounded by the chatter of my children and my granddaughter. Right now my granddaughter is arguing with her aunt about who should get to sit where. The logic, or at least the attitude, of a 3 1/2 year old child is unassailable. She may not win the point, but she sure can make the discussion.

I love the sounds of my children, their thoughtful conversation, their laughter, just the sound of them. Even the temper and tears of a small child are sounds that make a home. It helps me remember a life before ALS, before my divorce, before I came to Calgary. I once had a life where I had was a father, a care give, the person who others depended on.

My daughter is visiting me, along with her husband and daughter. They are staying with me for a few days before heading down to Lethbridge where they will attend a wedding. My other daughter is taking the time to make sure she comes to visit too, ensuring she gets some sister time in at the same time as I get some Dad time and some Grandpa time. It doesn't happen very often; I wish it happened more often.

My children are adjusting to ALS, to what is and what will happen to me. They get to see the reality of this illness when they come to visit; the wheelchairs, the lift, the shower seat. They come to better understand what I am losing and how I am declining. Yet they also get to spend time talking to me, sharing my daily life, hearing how I see the world through this lens.

There is fun too. Yesterday we went shopping over in the mall, specifically we went to the Disney Store and the "Barbie store", giving me an opportunity to spoil my granddaughter even further. On our way over, she sat on my lap in my power wheelchair, demanding that I go fast, and faster. She even got a turn to driving, saying to me "Can I drive with the stick?" That's the joystick that controls the chair. Straight lines don't appear to matter when you are 3 1/2 years old. She loved it, and so did I.

In a moment we are off to Bass Pro to look for a pink fishing kit. After all, isn't that what Grandpa's do, teach their grandchildren how to fish? I may not be able to get all the way there, but a pink fishing kit is certainly a good start for a little girl.

Saturday, 23 August 2014

My Leg Fell Out Of Bed

My leg fell out of bed this morning. That  may sound a bit strange to those of you with normal legs; mine don't work like yours. Yet my legs, when I move about in bed, slide along with the shifting of my upper body.

When I go to bed at night, I transfer from my wheelchair to my bed. That transfer requires that I do a semi-stand with my arms, using the the M-rail on my bed and the wheel on my wheelchair as push points. I force myself up as far as I can then rotate sideways, slumping quickly on to my bed. This process has become increasingly difficult as time has gone by, with me becoming less and less successful in the lift and rotation.

Regardless of the difficulty, the end result is that I find myself sitting on the edge of my bed. I then slide backwards to get as far on the bed as I can, my legs setting the inward limit due to their hanging over the edge of the bed. Once I am on as far as I can get, I rotate my body as much as possible, lifting my legs, one at a time, until I end up roughly in a semi-prone position, or at least halfway there.

At this point I simply roll over until I am completely on my side, allowing myself to sleep that way. I then position my legs into something resembling a running position, with the upper leg in front of the lower. This way I remain until I become uncomfortable. Once comfort has left me or I feel like moving for no reason other than not being able to sleep, I roll from my side onto my back.

This is where the trouble begins. When I roll from my side to my back, my legs don't come along, or at least not easily. The momentum from my torso rotates my legs somewhat, such that near the end of the process they simply flip sideways, inevitably ending up crossing one another in the process. This means my left leg is now across my right leg, the cross happening at the ankles.

The cruciform leg position becomes uncomfortable fairly quickly, the weight of one leg at the ankle pressing on the other at the ankle. I cannot move them; there is no micro-adjustment for comfort. At this point I have two choices; I can rotate slightly further allowing my upper leg to slide off the lower and then roll back, or I can sit up and lift the leg off using my arms. When I am tired and sleepy, the rolling method is preferred.

Remember, with all this going on, I am only a couple of inches from the edge of the bed, usually on an angle as the sit/roll process for bed entry is never perfect. About once every couple or three nights, I do the partial rotation to slide my upper foot off of my lower, only to have that foot overshoot the edge of the bed and slide off. The weight of my foot then drags the rest of my lower leg. My leg falls out of my bed.

At this point I have to get up and essentially do the whole "get into bed" process all over again. Then I try to get back to sleep. Fortunately the effort of this work and the fact that it usually happens in the middle of the night means I am tired.

Friday, 22 August 2014

A New High Water Mark

I continue to be amazed at the response to the Ice Bucket Challenge for ALS. Once again today I have been contacted a media outlet, this time CKNW in Vancouver, looking to do an interview about the Ice Bucket Challenge and ALS. It is an amazing time for me, for all PALS; to see what is happening and how it is happening, this is something that could not have happened any other time in history. The convergence of social media trends, awareness, and interest in neurological diseases is making this a steam roller.

There are still those who are negative about the whole Ice Bucket Challenge. Yesterday the Archdiocese of Cincinnati asked Catholics, and especially Catholic schools, not to do the challenge because some ALS research uses stem cells. There are those who call the whole thing narcissistic, saying the challenge is all about ego and not about ALS.

I don't care what they say. Last night I was out with a group of friends at a social function. The total group was about 80 or 90 people and I knew perhaps 30 of them. The evening was supposed to be a fun time at Aussie Rules Duelling Pianos. My friend David, who organized this event, decided to make it a bit of an ALS fund raiser. He said if the group donated $250 to ALS he would do the Ice Bucket Challenge right there. Then I got in the act, saying if the group raised $500, I would do it too. The a couple of others volunteered and even a couple of the staff at Aussie Rules volunteered. We raised $750 just that night.

Afterwards I went over to the Cat 'n Fiddle, one of my local hangouts. While I was there one of the servers asked me how she could become involved, how she could do the Ice Bucket Challenge. You see, they all know I have ALS but most of them don't really know what it is. Now they are asking about it. The same happened at Aussie Rules, friends who vaguely knew I was sick and was now in a wheelchair started talking about ALS, about how they could help, about what they could do.

There is a tide in this. It will, as with all tides, wash away back into the sea one day, sooner than we would like in all probability. People will get tired of seeing challenges. Challenges will get sillier and sillier. Memes will show up and the Internet will slowly become bored with ALS. That is fine with me. This tide has created a new high water mark; people are more aware of ALS than ever before. It's the first step towards a cure, and that is all I can ask for.

Thursday, 21 August 2014

Guest Blogger: Chris Gordon - Hold Your Water!

My friend, Chris Gordon, wrote this entry. He is one of the most logical, intelligent and thoughtful men I know. Here is what he has to say about the ALS Ice Bucket Challenge detractors.

Thousands of people, big names and no names, celebrities, political leaders, corporate suits, Silicon Valley tycoons, and of course regular people, all dumping ice water on their heads, AND giving money, to fight ALS. Charlie Sheen actually dumped a bucket of money on his head, and then announced he was giving it (US$10,000) to the ALS Foundation.

But so popular has the #IceBucketChallenge become that mocking it seems to be becoming its own meme. Not just the contrarians, or the cynics, but other celebrities, journalists, Twitter stars and regular people, lining up to join in the backlash against it. Think about that. There are people who don’t want you to participate in supporting a fight against one of the most terrible, dreadful, execrable diseases that ever struck humanity.

“WTF?? Why not???” You say! WTF indeed!

Do something more constructive some say, thinking that these folks are doing it to avoid making a donation. (The original challenge was: dump a bucket of ice water on your head, or if not, you must make a donation). But that’s not what’s happening. These people, and the people they are bringing along to their events, are donating millions, MILLIONS to a foundation that has never seen the like in its lifetime as well as dumping ice water on their heads.

Spend the money elsewhere, don’t just follow the herd, some say. Spend it on charities that produce better results. Why? Is the fight against ALS not deserving? Are all charities to be judged solely on the lives saved per dollar? If that’s the case why don’t we hear equal railing against the Big Pink charities, the runs, rides, races and bake offs to support the fight against breast cancer. After all, women run much more risk of premature death from heart disease than any cancer, let alone breast cancer. So shouldn't we be hearing a movement against Big Pink or asking them to start shuffling their funds to other charities? How about Movember? Most men struck with prostate cancer will die with the disease, not from it. In fact, there is strong evidence to suggest men “of a certain age” should *not* get tested at all.  Should we shut it down? Campaign against it?

So up against all these big, well-funded charities we have the ALS groups, fighting to gain any scraps that fall from the donation table to fund their support to aid the sufferers, and their families and friends, and to fund research to find the cause and cure. As a percentage of the population, and a percentage of those that die early, the sub population with ALS (PALS) just isn’t big enough to make those donations worthwhile. And so even funding publicity campaigns to kickstart a donation cycle is incredibly difficult.

And that’s one of the great things about this campaign, it’s not just the money, which is huge, but the publicity. Sure, many people will never give to this cause again, it probably is just a flash in the pan, but all charities suffer from that. And what a flash! With all those names added to their donation list, the ALS foundations, who will work hard requesting and earning further donations from that small percentage of folks who respond to follow up requests, will find that small percentage represents a lot more people and a lot more funding.

Economists like to think of us as rational, but this model has been dismantled by the Behavioural Economists. We are not rational. We muddle our way through modern life, looking for facts to support our pre-existing beliefs. Why has this campaign gone viral? Nobody really knows. Heck, we don’t know why a cat video goes viral, but something somewhere resonates. This campaign is fun, it’s based on a challenge, and it hit the right combination somehow. And so folks are giving.

Enough about the numbers, what about the process and end of the disease itself? The horror and indignity of being trapped in your own body, not for days, not for months, but for years. If it happens to someone you know, to a friend or family member, wouldn't you want to spend anything, *anything* in return for a cure? For many of us, this is personal. We have friends and family stricken by ALS. I lost my stepfather to it, and I will lose my good friend Richard to it. You’re effing right I’m participating, logic be damned!

Oh yeah, the stupidest argument: … you've seen the postings on Facebook and Twitter, the drought stricken African child superimposed against a photograph of a line of people getting soaked in the challenge, with an attributed comment that the child finds it incredulous that we would waste our precious water on such a ridiculous event.  Such piffle. The amount of water we waste washing our cars, our pets, even our houses makes this event’s amount literally a drop in the bucket. And it’s not as if we could seal up the buckets and fed ex the water to the latest drought area. No, we have good organizations for that. Which is why, when I participate in my own event next weekend, I will also be donating an equal amount to Oxfam, my favourite charity for overseas aid.

So to all the naysayers, my parting words to you: Go soak your head!

Wednesday, 20 August 2014

A Quiet Doom

There's been a lot in the news lately about the ALS Ice Bucket Challenge; I've been part of that cacaphony. People are talking about ALS, talking about a disease that has been largely missed in the public spectrum for the last hundred years. It is a tragedy that there are a great many people who have heard of Lou Gehrig's Disease yet so many don't really know what it is, let alone those three letters that change your life - ALS.

As with any successful campaign, the Negative Nellie's and Debbie Downer's have come out to feast. The more successful the campaign, the more of them are coming out to feast. It's even happening with people who know me, people who have seen what this awful disease has done to me; some of them have been questioning the process and effectiveness of this campaign. As with all things, I have a opinion - they are so wrong as to be far from reason.

The Ice Bucket Challenge is the best thing that could ever have happened to ALS. I am deliriously happy that it happened to my disease, something so successful at raising awareness and money. For those who would disagree, first of all I challenge you to something different. Try having ALS; see what it's like to have your Mom, your Dad, your brother or sister, your child die from ALS! That will change your mind.

Imagine that you wake up tomorrow morning and find yourself in a sterile hospital room where the neurologist comes in and says "You have ALS. You are going to die from this disease in about 36 months, perhaps less. As you go through these short months, you will see yourself slowly become paralyzed, one little muscle at a time, until you cannot even breathe for yourself. Along the way you will lose your ability to feed yourself and eventually even to eat. And you will lose your ability to talk, to share your life with those you love."

"Over the course of this disease you are going to have to rely on others for support; emotionally, physically, financially. You are going to lose every bit of privacy and self-reliance. You will lose your ability to bathe or shower, and ultimately even the ability to go to the toilet on your own. You will struggle with depression and loss; your appetite will diminish until one day you realize you have forgotten to eat that day."

"To keep you going as long as possible, we will arrange medical care along with all the machines. They will cost you a lot of money, probably most of your savings, and you will have to modify your home too, assuming you own a home instead of renting one. Eventually you will likely have to go into a facility for 24 hour care. The machines you can expect are things like walkers, manual and electric wheelchairs, a feeding tube, a tracheostomy and a breathing machine that will be permanently attached to you."

"All along the way, you will retain your mind. Your intellect will be mostly intact although you will experience things like uncontrollable emotional responses, panic attacks, depression and fear. You will still be able to feel; it's only your motor nerves that are dying, not your sensory nerves. Pain will become a part of your daily life."

"In the end, you will die, not all at once but slowly. You will be able to see the loss of all you worked hard for in your life. There is nothing we can do for you. There is no cure, there is no treatment."

Of course, when your doctors tell you that you have ALS, they don't tell you all of this all at once. I suspect they realize suicide rates amongst ALS patients would skyrocket were they given the whole story all at once. Instead they let you discover this all on your own, as you slowly die. It's up to your family and friends to keep you from wanting to die; it is a burden on them too.

So next time you hear someone say the Ice Bucket Challenge is silly or pointless, show them this blog entry. Ask them if they would want funds for research or education. Ask them if they would like the world to at least know that ALS is a disease, and that it is real. Or would they prefer to be quietly doomed, like I am.

Tuesday, 19 August 2014

The Next Big Thing

It's day two of Ice Bucket Challenges. It amazes me how willing people are to become involved in this, and how much they want to spread the word about ALS. It humbles me to see what they are doing simply because they know me or simply because they know someone else with ALS. Today I will go to Associated Grocers here in Calgary where, with any luck, CTV will film five or six people getting iced, and raising money for ALS.

Even getting to go is a terrific thing. While my arms are weakening, I can still drive. I will continue to drive as long as it is safe, for as long as I can safely manage the wheel and the controls. I don't know how long that will be, perhaps six more months, perhaps less. The thing that will really be the determiner is not likely to be my ability to control the truck, but my ability to get into it safely.

The lifting and driving system for my truck is a complicated mechanism. It's all mechanical with electric winches and push button controls. There is a lift seat that rises from the floor level of the truck to the height of the truck seats. The seat itself folds down and back up, so you can have it when you need it and when you are driving it neatly tucks in beside the truck seat. Behind the seat, in the back seat of the truck, is a lift crane that swings out. The crane has a web strap cable system with a hook on it to pick up my wheelchair. Once attached to the chair, the strap winds up and lifts the chair. Then the whole crane arm swings back into the truck, wheelchair attached.

The lift seat that takes me up does not come quite down to the level of my wheelchair. There is about a 2 inch rise from my wheelchair to the lift seat. This means I must lift myself up that last little bit when I transfer from the wheelchair to the lift seat. Once I am on that lift seat, it's all good to go; it's just getting there that is the last physical hurdle for me.

If I fail anywhere it will be around having the strength for that last bit of transfer, that last couple of inches that I have to lift. I am heavy; as my arms weaken I am less and less able to make that lift. It takes far less work to drive my truck than it does to make that lift. If I have to give up the truck, it won't be because I cannot safely drive it; it will be because I can no longer make the transfer. That's the next big thing.

Monday, 18 August 2014

Ice Bucket Challenge

I am sitting here at my table with tears at the edge of my eyes, threatening me, the small pressure on my lower eyelids warning me of that lachrymose state which will often accompany the fullness of feeling I get when I see how many people care about me, support me, and help me. Today I went to an Ice Bucket Challenge at the CBE, where I used to work, back when I could work. So many people showed up, so many donated, so many doing so much.

The Ice Bucket Challenge thing has really taken off. I see it constantly online, on Facebook and on the news, in other social media. I see it done well, with people making a real statement about fighting ALS and finding a cure. I see it done poorly, with people not even mentioning the terrible illness that underlies this icy public awareness campaign. My favourite celebrity so far has been Charlie Sheen, who pretended to dump ice water but instead dumped $10,000 over his head, all of which he publicly pledged to ALS research.

Despite all of these very public ice bucketings, it is the private ones that mean most to me. Today is a good example. My friends did not do the ice bucket challenge for TV, although it was on TV. They did not do it for publicity or for sharing on Facebook although I am sure a lot of that will happen. They did it for me, to help me and to help the ALS Society of Alberta find a cure for this execrable illness. It is thinking of them, of what they did and said, that makes my eyes fulsome.

It's happening again tomorrow. Another group lead by another friend will do the same at Associated Grocers here in Calgary. They are making a company event of it, with a staff lunch where $5.00 per meal will be donated directly to the ALS Society of Alberta. It will happen again on Thursday at an evening event where a friend of mine will do it at a social event we are attending. I suspect it will happen even more with the challenges from today, tomorrow and many other ice bucket challenges happening.

This is a temporary thing, a kind of craze sweeping the world right now. But it is more than that. Even though the ice bucket challenge will pass, the donations will not. Even though fundraising will slow down after this bulge, the awareness of ALS will last. We are taking this disease out of the shadows and into the light. As with all evils, it will not survive the light of full exposure. We will find a cure. It won't be on time for me, but it will happen.

Sunday, 17 August 2014


More and more I am coming to realize that my life is a team event. With each and every passing day there are more and more people involved in what I do, when I do it, and where I go. This morning was a great example of how much support and help I get from those around me.

Today was my interview with GlobalTV Calgary for the Sunday morning news segment. It was a short piece; there was so little time and so much to be said. I missed some things I wanted to say while doing my best to make the time count. However the simple act of getting me to the studio was a group effort. Cheryl was over and woke me up at 7:48 AM. Emma called shortly thereafter to ensure I was up and getting dressed. David showed up at 8:00 AM to help me get to, and get into, the studio. After the interview, Dion and Elizabeth met David and I for breakfast.

All of this was in aid of getting me on TV. I know I could have done all this on my own. I know I could have woken up on time, driven myself to the studio, navigated the doors and ramps, and done the interview without anyone there to help me. But as several of my friends remind me on a regular basis, just because I can do things on my own doesn't mean I have to do them on my own.

During the interview today, I talked about the terrific support I get from my friends, from the ALS Society of Alberta, and from the medical system here in Calgary. My experience with support like this is not unique to me; I hear from many PALS here in Calgary who find themselves well supported as they navigate their way through the murky waters of this nasty disease. I don't have to be alone, and being alone is one of my greatest fears as my life winds down.

Tomorrow even more people will be supporting me by doing the Ice Bucket Challenge, then more on Tuesday, then more on Thursday, and even more after that. It's not about me, though. Through the lens of my life, they have seen what ALS does. Through our friendships and relationships, they have seen me deal with living, living with ALS. They are making a difference, not just for me but for anyone struggling with ALS, for PALS not just here in Calgary, but everywhere they reach and go. It is a wonderful thing to see.

Saturday, 16 August 2014

Spread The Word

I am going to be on TV tomorrow morning. Global TV in Calgary wants to interview me about the Ice Bucket Challenge and ALS. It will happen at 9:20 AM, Sunday, August 17th. This is not the first time I have been interviewed regarding the challenges of living with ALS. Last year, when Alberta Health Services decided to eliminate the role of ALS Case Manager, the local CBC affiliate also interviewed me, wanting to know how this loss of service and support might affect my life. Years ago, in an earlier life, I was on radio regularly and interviewed on TV in a number times as well, mostly about finance and politics.

This experience will be new in one respect. In all of my other interviews for TV, they were live and on location. The CBC reporter even came to my apartment to do the interview last year. This is the first time I will be going to the studio, to do an in-studio interview. My first thought, of course, is what will they do with my wheelchair? Their couches and settees are set in well marked, camera perfect positions. I hope they don't ask me to transfer, or if I can stand up and move.

Then there is the whole issue of what to wear. I have been told not to wear green. The backgrounds in most studios are "green screened" with the actual content digitally added. The set's backdrop is simply a green felt mat or other green surface placed where they want to overlay the additional content. So into my wardrobe I go, eliminating all shirts with the least of green in them. I'm also going to try to avoid any tiny stripes or anything that might be too shiny under the TV lights. I wonder what they do when they want to interview someone on St. Patrick's Day?

Of course the biggest single challenge will be getting to the studio on time. I will have to be up before 8:00 AM in order to shower and dress. The studio is about 20 minutes from my apartment and I have to be there 30 minutes before air time. That means leaving my apartment no later than 8:20 AM, not including the time it takes for me to get into my truck and get going. At least the sun will be up, the traffic will be light, and it's summertime, so no snow.

The interview itself will only be 3 minutes. How on earth do I explain what ALS does to me and other PALS in only three minutes? There is the whole Ice Bucket Challenge thing too! I am going to have to stick to the facts on ALS and the Challenge. I want to be sure to get the message out that this is an illness where we have yet to identify the cause, where there are no viable treatments, and where death is a certainty, usually within 3 to 5 years. I also want to let people know that curing ALS will almost certainly lead to treatments and cures for all kinds of neurological disease, things like Parkinson's and Alzheimer's.

Tomorrow, after the broadcast, I will come home and write. I will post a link to the online version of the interview in Facebook and on my blog. Then we can spread this message even more.

Friday, 15 August 2014


Robin Williams had just been diagnosed with Parkinson's Disease. He had spent most of his life struggling with depression. I am living with ALS and constantly struggle with depression. When I die the papers will say nothing. There is nothing to be said; I am just an ordinary working stiff, a regular joe who raised his family and paid his bills. My disease is slowly bankrupting me, along with slowly stealing every bit of movement from me. I consider my own suicide now and again, but each time I simply say "not right now". One day that will change, but not today.

I think a lot of the reason for my enthusiasm for life lies in my own attitude. I am forever curious about what might happen tomorrow. My own sense of life is best expressed as "You're going to live until you die; you might as well live before you die." Add into that a fair bit of "I no longer give a shit", and you have pretty much described my general attitude towards not just life, but death as well. I certainly think about suicide, but that is almost immediately followed by the thought "What about tomorrow?".

I know that my "hell bent for leather" approach to being alive has its downside. I suspect there are more than just a few people I have pissed off lately, more than the odd person here or there who was had to deal with the crap I leave behind in my wake. I am sorry for that, sort of, but not a lot. It may cause people in my life to leave it, that's true. Some say "you can never have enough friends". That's not true. My real friends are with me constantly, helping me deal with this pile of crap that is now my life. They encourage me, even in my bad behaviours at times, and help me when I screw it all up. They are real friends.

Winston Churchill once said "Attitude is a little thing that makes a big difference." Trust me, I got "tude", in spades. Perhaps the only thing I worry about is those who are closest to me. I want to be sure that I don't go over that edge, or at least not once too often. I want to be sure that my desire to squeeze every bit out of what remains of my life is not completely destructive to those around me. I can see it happen sometimes, where the nonsense that falls out of my mouth or the thoughtless actions I take cause them to distance themselves from me.

I don't care all that much about living or dying. I care about how I live, not where I live. I care about those who are with me on this roller coaster. I try my best, but it's hard to keep it all together sometimes. That's when I really need the extra push from a little bit of attitude.

Thursday, 14 August 2014


A week ago I opened up one of Kate's cards and it asked the question "What was it like growing up with your brothers?" It's been a bit of a tough week and though I had an answer almost immediately, today is the first day where my life has given me room to respond. Growing up with my brothers was actually three different lives, so different as to seem completely disconnected with one another. The first life was early childhood, from 1955 to 1963. The second life was East Vancouver from 1963 to 1967. The third life was out in Stave Falls from 1967 to 1970. There is a denouement from 1970 to 1972 but little is explained; it's just the tag end of childhood.

The early period of my life, from birth to 8 years old, is almost a complete blank for me. My only memories, those that are mine and not triggered by others, are of being stung by bees while trying to climb the big rock across the road from my house, and of coming down the hill to the Esquimalt Spit. Oddly enough, there are a number of years separating these two memories with absolutely nothing to link them. Both were dramatic, one was traumatic, neither offers any linkage to brothers. In other words, in those years, I don't actually remember growing up with brothers. Perhaps the only memory I have is of my brother Adam and I sitting down to watch "Brakeman Bill" and "J.P. Patches" on our black and white TV; I'm not sure if I remembered this or someone told me.

The next period of my childhood, from 1963 to 1967, are what I think of as the halcyon years; these were the years where my brothers and I were truly a family, a band of boys living an active, vibrant life in East Vancouver in those dramatic years of social change. Almost everything I remember from those years is linked to brothers; my older brother Adam and I going on the bus to Stanley Park to go fishing, playing on bikes with any one or all of my brothers be it Peter, Jim, Matthew or Adam. I remember going to visit my grandparents who also lived in East Vancouver, even walking there on my own at times. It was perhaps the happiest time in my life, the most contented I have ever been and will likely ever be. If I could go back to a time and place, it would be there and then.

Then came the dark years, the difficult years as my father and step-mother tried to blend two already seriously damaged families into one, to serve no purpose other than my father's ego. In the summer of 1967 all my brothers decided to go live with my Dad in Stave Falls. I held out, but my Dad finally connived me into going during Christmas of 1967. I still view that event as my ultimate betrayal of my Mom, leaving her alone not just at Christmas, but for the next three years.

Life in Stave Falls was not just life with brothers; it was life with step-sisters, my step-brother and my baby half-sister. It was a life of conflict, where my father pitted us against one another, creating competition and confrontation between brothers, especially between Adam and I. It was a time and place rife with difficulty, stoked by the fires of a house full of pubescent young boys and girls all demanding the attention of their respective parent. My father did not give attention; he demanded it. My step-mother struggled with a houseful of rowdy children, seven of hers and five of his, all wanting to be fed, clothed, cared for, and mostly loved.

Ultimately we all left Stave Falls but the damage had been done. We went back to my Mom, one by one, some for a year or two, others for longer. Our lives were very different given the age differences that now played such an important part in our family development. We were no longer brothers; we were competitors. During those years in Stave Falls the patterns of behaviour were formed which are still with us today.

In looking back, I wish we could have retained the relationships we had in the middle years, those founded on being brothers, being a team, playing with and ultimately looking after one another. Those are the brothers I remember growing up with, laughing with, living with. Those are the brothers I miss. They are still there, hidden under the cover of damage wrought by the difficult years. They are still there, some more and some less. Yet they are gone too, like shadows in the mist of falling night. Would that we could return.

Wednesday, 13 August 2014

Safety Railing

The toughest thing about dealing with ALS, at least for me, is the emotional stuff; the uncertainty, fear, doubt, anger, frustration. The worst thing of all is the continuing feeling I have of being alone. Take these emotions, mix in a fair degree of exhaustion and the daily physical challenges of life, and you have a perfect recipe for serious depression, the black hole kind of depression where you cannot, no matter how you try, see a way out. That black hole, that deep, dark place that weighs on you heavier than the earth on Atlas, that is the hole that Robin Williams gazed into.

I gaze into that hole on a regular basis. It takes very little to tip me over that edge. I fear so much. I fear the loss of my abilities, the loss of my community, the loss of my family, the loss of my life. Oddly enough, dying is probably the lowest thing on my list of fears; it's still there, it's just nowhere near the fear I have that I might be, or am, driving my friends away as I deal with this illness. It would be much easier to be dead than to face a life alone, lonely and afraid. It would be much easier to be dead than to live with a lively mind trapped in a body that simply cannot function.

Of course all of these fears, all of these things that cause me emotional pain, can be refuted, argued away, explained off. My friends say they will stick by me and it is true that I have what many would consider a vibrant social life. My children visit me and Kate lives here in Calgary now, plus I make the trek to the coast as often as I can to see them, along with Mom and Ray and other family. And look at Steven Hawking, the most brilliant mind alive today trapped in a body riven with ALS, fully supported by machines and technology.

While the fears can be explained away, argued away, it doesn't make them go away. In fact to argue with me or to dismiss them simply makes me feel worse. Now not only am I afraid, I am being foolish too. Rationalizations won't help either; I spent 32 years married to a woman who rationalized away every desire, thought, feeling or need I ever had. I will have that no more. In fact the only way to deal with my fears is to move forward, to keep living, to see if it will be different tomorrow.

That's why, when I look at the pills on my dresser, knowing what will happen if I take them all at once, I consistently say to myself "not today". The black hole that I stand next to has a railing, a railing I cling to regularly, a railing that keeps me from stepping into the abyss. I don't really know what that railing is, nor how long it will hold me. It's there. That's enough for today.

Tuesday, 12 August 2014


When I was a child in grade school, about a half century ago, things were different. Name calling was a common part of every day experience. The names we called one another were often cruel and derogatory references covering a broad spectrum of human deficiency. One of the more popular was the use of "spastic". We didn't know what a "spastic" really was except that it was those kids in the wheelchairs riding in the "bunny bus", the term we used for the Easter Seal Bus for the handicapped. Forgive me; I just didn't know any better. Now I do.

I am now a spastic. I struggle with spasticity. Before going on in detail about how this nerve misfire affects me, let me say that, in general, it has to do with muscular failure. When we were kids, we used the term whenever someone dropped something or tripped, or if we just wanted to make them feel bad. We even shortened it to "spaz"; some even took it as a nickname.

These days I really do suffer from muscle failure. I trip. I drop things. My hands shake badly sometimes as the weakened muscles in my arms try to hold on for just a moment more. When I first get up in the mornings almost every part of me vibrates in a shaking, as if my nerves were collectively testing their connections prior to the effort of starting the day. At any point I can develop spasticity, from the slightest of twanging of muscles during my stretching exercise or the shaking of fingers as I type, all the way through to a violent shaking in my arms and hands.

Without all the medical terminology that goes with defining spasticity, it is essentially a stiffness or tightness with the muscles only on a "vibrating" basis; it is a muscle spasm, an excessive contraction in the muscle typically in a repeated manner with the muscles creating a responsive reaction in the tendons. In my case it is almost always related to the stretch reflex. If you stretch me, I will spasm. It's like twanging on a guitar string, only the guitar string is my muscles and tendons.

Although spasticity is muscle related, it is actually a function of the neurological damage from ALS, at least in my case. This same issue can occur with almost any neurological disorder including things like stroke, MS, spinal cord injury, cerebral palsy and so on; anything that affects the part of the central nervous system that controls voluntary muscle movement. The damage causes a change in the balance of signals between the nervous system and the muscles which then causes a chain reaction kind of signalling issue, triggering the muscle reflexes to stretch and release rapidly.

All in all, it can be a bloody nuisance. My hand shake, my arms shake, even the dead muscles in my leg seem to participate although in reality it is the tendons more than the muscles. I vibrate unwillingly. I'm a "spaz". It happens mostly in the mornings, when I try to get going. During the day, it's there but not so bad. It's just another part of ALS.

Monday, 11 August 2014

Early Arrival

My homecare worker arrived early today. Not unannounced; she called me at 10:35 AM to say she would be arriving at noon. The scheduled arrival time is 1:00 PM. That hour makes a lot of difference in my daily routine. I need about 10 - 12 hours of sleep a night. Typically I go to bed somewhere between 11:00 PM and midnight, except on those nights when I go out and stay out late. On those night, all bets are off.

Last night I went to bed at 11:30. Unfortunately I didn't get to sleep until about 1:30 AM. This, once again, is not all that uncommon. It takes me longer to get to sleep these days unless I have a few glasses of scotch in me. Yesterday I had none; it was just one of those days. With a bedtime of 11:30 PM and a bit of sleeplessness, I would expect to wake up sometime around 10:30 or 11:00 AM. I awoke at 10:30 AM.

Waking up is not an easy thing for me. It takes me a fair bit of time to get myself from not being asleep to up and sitting. There are a few reasons for this. The simple act of sitting up often takes enough energy to make me want to lie back down. It regularly takes me three or four tries to actually get from lying down to sitting up, with about a 10 minute rest between efforts. Even then I typically rest for about five minutes once I am vertical. Then there is the whole "why bother" thing going one; it's worse some days than others.

This morning I was just awake a few moments when the phone rang. It was my homecare working announcing that she would be here at noon, a mere 85 minutes away. I am flexible around this. I can adjust on short notice; 85 minutes is too short. Nonetheless, I said yes. I was still lying down. It took me until about 11:00 to get vertical. Then I needed a shower, an activity that can take me a half hour or more if you include time for other bathroom activities. It was 11:35 when I got back into my bedroom to get dressed.

In my situation, getting dressed isn't simply getting dressed. Before I even begin I have to deal with my urine jug. Each morning I empty it and then sterilize it, leaving it to soak in the bathroom sink. This morning I also needed to wash my compression socks; I rotate the two pair that I have so I can have clean socks on a consistent basis. These morning activities don't take long, about ten minutes. This means it was 11:45 before I even started to dress.

It typically takes me somewhere between 15 and 30 minutes to put on clothes, depending on what I am wearing and how tired I am in the process. This morning, fortunately, I decided to wear shorts and a t-shirt, the easiest possible attire. Unfortunately I always have my compression socks; putting them on is usually half the time I take in getting dressed. I was halfway through the second sock when the homecare worker arrived.

It's important to understand that by this time I was up and almost dressed, but had not had any breakfast nor any time to write. And I had pushed hard to make it this far. Rather than make her sit around while I ate and wrote, something that would make me uncomfortable and hurried, we went right into my exercises. When she finished I needed a rest, something that usually happens after exercises. While I rested the homecare worker did my dishes and tidied the kitchen. After I got up, she made my bed. Then she left; it was 1:00 PM, the usual starting time.

I explained all this to the homecare worker, letting her know how her impromptu schedule change had affected me. She claimed to understand but her English is poor at best, so I am not sure what will happen next Monday. If this continues to be a problem, I will have to ask the agency to replace her. That will be a shame as she is good at her work, just bad at her timing.

I've finally had some breakfast and I am making coffee in a moment. However I am already tired and it is only 1:30 PM. I think I will have a nap later today. That will mess up my evening, and probably mess with my sleep tonight. It's all of a piece.

Sunday, 10 August 2014


It was an interesting evening yesterday; it almost seems like two different evenings, split by a short break, a halftime in my social play. The evening also served as an object lesson in how the human mind works, how it makes assumptions and develops stereotypes in order to make life simpler for the overworked brain of homo sapiens.

The first part of the evening was a football game, the second in as many weeks. The game itself was not notable; in fact it was decided early in the first quarter and became almost boring as the game moved into the second half, so predictable that we left early in the fourth quarter. While the game was not notable, the fellow I was sitting next to was indeed notable.

There is only one wheelchair section in McMahon Stadium in Calgary, a covered section in the north end zone. The view isn't all that great and we of the wheelchair class are all lined up in a row with seating for our "attendants" in a row behind us. It means that if I go to a game with someone, I cannot talk to them side by side, but am compelled to do so over my shoulder. I would like to talk side by side, but since this section is for "handicapped", and since not all handicaps are equal, many of those seated beside me and further on down the row suffer from fairly severe handicaps, both physical and mental.

Last night the fellow next to me happened to be a consulting geologist, a man who through a car accident was a paraplegic. He was intelligent, a family man with three children, funny and easy going. His mother sat behind him and fortunately for Cheryl she was much the same. So we chatted sideways instead of up and down. Part of my chat with my neighbour was a discussion about how it felt to be stuck all together in this section of the stadium, essentially missing much of the action and certainly feeling segregated by our physical limitations. We didn't view ourselves as handicapped; we just happened to be in wheelchairs.

After the game, after Cheryl went home, I got a message from a young friend of mine who wanted to talk. We agreed to meet in one of our regular watering holes. He and I talked for a while, then he went home. I stayed on to talk with some of the staff, sitting and chatting about life, the universe, beer and rum. Suddenly, for no apparent reason, this very inebriated young lady came over and, after randomly grabbing me from behind, sat in a chair and challenged me to an arm wrestle. I won.

Having discovered that being in a wheelchair did not mean I was easy to beat, she blearily looked around the table, struggling to focus. It was then that she noticed one of the guys, one of the cooks. This fellow was born in Calgary, grew up and attended local schools and now made a living in the kitchens, cooking. He also loves to eat his own cooking, so one might say he is large. He also has a great sense of humour. Oh, and he is black.

The drunken young lady realized upon gazing at him that he was black. My friend had not spoken a word, being totally stunned at her behaviour so far. She looked once again at him and said "Are you from Louisiana or something?" We simply could not stop the burst of laughter that exploded around the table, said laughter driven by a combination of the absurdity of the question and the stupidity of the assumption. She left after we told that he was not, in fact, from Louisiana.

When I got home later, I thought about both these situations, the parallels between them, how the assumptions about people in a wheelchair and the assumptions about someone based on their skin colour are both driven by our minds need to package information for easy recall. Wheelchair people are all the same, black people are all from Louisiana. We do this in so many ways. In the end, I would like to be treated as a person regardless of my wheelchair. My friend would like to be treated as a person regardless of his skin colour.

Unfortunately I still have to sit in the end zone at McMahon Stadium. It's the only place where they will allow wheelchairs, regardless of who is in them.

Saturday, 9 August 2014

No Power

I awoke this morning to find that the electricity in my apartment was only half working, a classic brownout. I went online to see what I could find out, but Enmax, the local power supply company, has nothing posted on their website. I called the trouble support line and they told me there was a cable failure just down the block from my building and that the whole neighbourhood was out, or at least halfways out. It looks like it might take most of the day to repair.

I immediately thought about what might happen when I needed breathing assistance. In fact so much of my life will be come dependent on mechanical assistance as time goes by. I will need things like a Bi-Pap breathing machine and possibly things like Dynavox, along with the lifts and such. Fortunately most of these things use a recharge battery system, but not the Bi-Pap machines.

Even now, 3 hours after getting out of bed, there is no full power on any of my circuits. My bathroom lights don't work, or at least hardly work. My refrigerator and freezer are humming along at low power and the lights in the rest of my apartment might as well not be on at all, so I have them off. Where there are no windows to let in light, it's dark. I can't even go out. The elevator is not working. I am stuck here at home.

Fortunately one of my friends is here today to help me with some household maintenance things. We've fixed a broken moulding strip on my front door and added a grip bar to allow me to more easily close that door from my wheelchair. He helped me rearrange the closet in my spare bedroom, tidying up the wine bottles and straightening up the closet contents. Now he is across the street getting some lunch for me; I cannot cook without a stove. It doesn't matter; am not alone. There are always people around me, helping me.

I rely on my friends and family, even more than I rely on my electricity. I am constantly aware of how full, or empty, my life is, or would be, with and without them. They make me laugh, listen when I am unhappy, hold me when I am in tears, support me each day. Electricity can't do that.

Friday, 8 August 2014

I Will Fight

It takes an awful lot of strength to deal with this disease; not just physical strength but emotional and spiritual strength as well. To get up each day and face the loss, to dress and eat and do the activities of daily life, to keep from sinking into permanent depression, to keep going when all logic and common sense say that you should give up and stay home; this takes more strength than anyone can imagine.

It would be so easy to give up, so easy to slide inward and stay here, to live alone in my little apartment like a hermit, seeing no one, touching no one, talking to no one, just looking out my window and listening to the world go by. It would be so easy to stop fighting to live and instead just find a comfortable way to die. It would be so easy to give up inwardly, to condemn myself as having no useful purpose or worth. All I would have to do is let it happen, to allow this kind of life to come into me and reside. All I would have to do is refuse to fight.

It's the whole fighting to have a life part that takes so much strength. Think of how simple and easy  it would be for me, or someone like me, to stay at home and let the world come to him. It would be a quiet, empty, sleepy world; a world where I could slowly slide into the end zone of my life, lost deep in my own self. It's the fight to have a life that consumes much of my days.

It's not just the physical fight. So much of the world around me is set up for me to disappear. People in wheelchairs shouldn't be out drinking at night. People with terminal illness shouldn't be off galivanting around the world, driving across country, taking off at a moment's notice. People who are sick like I am sick should be staying at home, resting, trying everything possible to give themselves a bit more time, time to live a quiet, sickly life.

I decline the opportunity to live down to that expectation. I may be obnoxious. I may be loud. I may be inappropriate. I may be just a little bit over the edge, perhaps just strange. One thing I am not is a quiter; one thing I refuse to do is to die quietly, without having lived. I will fight for that, even though it wears the hell out of me. I will use every bit of my emotional, spiritual and physical strength to keep on fighting until I can fight no more. I will fight to live.

Thursday, 7 August 2014

Revenue Canada

When I was diagnosed with ALS, most of my world fell to pieces. Other than the small group of friends around me, the friends that have stuck with me and are with me still, I had no family or anyone else around. My brother was working in Calgary but went home most weekends. About a month after diagnosis my son came to live with me; he moved back to the coast last December. He got to see the anger phase in full bloom. My daughter has recently moved here; she gets to experience some of the life I face with this disease. I am fortunate to have them near me, even more fortunate to have my friends around.

All of my life I have done the "responsible" thing. I've raised my family, stayed when it was tough to stay, paid the bills and worked hard. I've paid my taxes, donated to church and charity, volunteered in my community and tried to be a good friend and neighbour. I think I did a good job, up until the day of my diagnosis. Since then it has been more of a struggle to do all the right things, both financially and emotionally. I tried; I even kept working for a while. It's a tough gig when you look at a future with ALS.

My consulting company is one area where I have completely failed to be responsible. After I was diagnosed it just didn't seem to matter any more. I stopped keeping records, I stopped filing taxes and submitting GST remittances. I just gave up on everything. Three months later I even stopped working. There was nothing left in me, and nothing left for me. I walked away, taking what money I could to pay for things like truck modifications, bathroom modifications, wheelchairs and all the other things that go with ALS.

Today, Revenue Canada finally called me to ask what happened. I told the agent about my story, about my illness, about my divorce, about how I just gave up and walked away. He asked me when and I told him that too. He was a bit shaken; I suspect they don't get many responses like mine. He said "Look, I will mail you a letter and we will take it from there." I told the agent that I had nothing left, that if Revenue Canada wanted anything from me they would likely have to get it from my estate.

There are some who might think I should have been more responsible, should have filed the taxes and made the remittances, should have cleaned up these loose ends. They are probably right, I should have. I should also have had time in my life to rebuild it, time to see my grandchildren go to school and to see my other children marry and have children of their own. I should have been able to go sailing this summer and river fishing this fall. I should have been able to work and live a decent life.

It was an interesting conversation with the Revenue Canada agent. Napoleon said that the only things certain in life are death and taxes. I get to deal with both of them. I wonder how it will end? It doesn't really matter; there's nothing left but the paperwork, and I don't want to bother.

Wednesday, 6 August 2014

I Don't Feel Like Writing

I don't feel like writing today; I knew this would happen one day, that eventually the effort of writing something would be more than I was able to make. I am going to push myself, make myself write, simply because I know if I stop once, I will stop again and again. So even though I don't feel like writing, I will write

There are a couple of things contributing to my not wanting to write today. First, my hands and arms are tired, my general level of fatigue is high. This is due in part to my late night last night, but also to the general tiredness that is with me every day. Second, I am feeling more and more like I have less and less to contribute, both in this blog and in general. The last few days have been tough on me that way, with me thinking there is so little that I have left, so little that is worthy of interest or attention.

Last night at trivia there was a young man dominating the table. This should come as no surprise to me of all people; I almost always dominate the table. However this young man was so intent on winning, so certain that he knew all the answers, that he was ignoring most of the others at the table. I was not the only one to feel ignored; others have talked to me about feeling the same way when this person is at the table.

The other day I asked one of the other players why she felt this way. She said he ignores others and doesn't really play as a team member, but more like he is the only one there. She said that to me last week; she didn't come to trivia this week. After spending about half the evening feeling the way she felt, I just said to the team "I don't like being ignored. I'm going to go play with another team." I did just that; the team I joined ended up winning.

There was a time when I was relevant, when I mattered. I get the feeling that I don't anymore. I feel like I am all too easy to ignore these days, marginalized in my wheelchair. I said something last night, made my case known. I am sure I can participate in life still. It's just that I am feeling less and less capable, less willing to put in the energy. Energy is what it's all about, and that's what I don't have enough of. That's why I don't feel like writing.

Tuesday, 5 August 2014

Highway Construction

I've been struggling with depression of late, something that should not be all that surprising given my situation. Depression is common amongst PALS; most of us struggle with it at some point or other. Last year I wrote about feeling depressed in a blog entry called Morning Sickness. At that time I concluded it was more sadness than depression; not any more. These days I think it is best described as situational depression. After all, I am in a pretty depressing situation.

It's rather like driving a highway in the summer here in Canada. When you are on the road, you know full well that there will be construction. You know that there will be more than one construction zone in your travels, that they will get in your way and slow you down, that you usually can't predict where they are or if you can it is only an approximation, that some are easier to get through than others.

The situational depression that I go through, and that so many other PALS go through, is just the same. You know you will get depressed at times. You know it will be an obstacle in your life. You know that these periods of depression are only moderately predictable and sometimes not predictable at all. You know that you just have to keep moving along to get through them, that sometimes they will be short and other times, much longer.

Just like being on the highway, the longer you are on this road called ALS, the more construction you will encounter, the more depression you will have to deal with. As I become more and more weakened, more and more tired, I am more and more likely to slip into a situational depression. I've had enough of them by now to recognize what is happening and to go with the flow, rather than get all worried about it. However I think that one day it will be too much, that I will decide to leave at that point. I suspect that there is this element of depression in all PALS who decide that they are done.

My time is not yet. There is plenty of highway in front of me. There will be plenty of construction for me to deal with, plenty of times when I will just have to go through the zone however long it may be. As my disease progresses, there will likely be more and more depression zones. I can see them coming, along with the emotional retreat and withdrawal. I will deal with them as long as I can; then one day I won't.

Monday, 4 August 2014

Ocean Swells

I used to sail; there's a lot of "used to" in my life, sailing is just one. I loved it, to be free on the ocean, to feel the wind in my face and the sweep of the sea past the tiller in my hand. I miss it, that sense of adventure, the feeling of wonder from seeing whales and porpoises and dolphins, the separation by mere yards from life ashore, the camaraderie of boaters both power and sail. One of the things I miss the most is the power of the sea, it's vastness and variety.

I was sailing off the coast of Vancouver Island some years ago when I truly began to understand how insignificant my boat and I were against the vast Pacific Ocean. I had come around the top of Vancouver Island and was headed down its west coast. The previous night had been in a tiny little hideaway called Sea Otter Cove; this day was dedicated to making it into Quatsino Sound. When I left my anchorage in the morning, there was fog; while I could hear the waves breaking onshore I could not see them. I navigated out to sea a couple of miles, safe from the dangers of a rugged coast strewn with random rocks and jagged shores.

It was there that I felt, not for the first time, the long rolling swells of the open sea, gently rising beneath me, lifting me and my little sailboat high up, and gently putting us down. I looked out to sea and saw only gentle ocean, no threat and certainly not high swells. I set my sails and made my way, confident in the knowledge that today on the sea would be safe.

After a couple of hours the fog began to lift, slowly revealing the wilderness coast through a gauze of mist and gentle rain. The sun came out; I could see the trees off on the shoreline a couple of miles away. That's when I noticed it, that the swells out to sea looked nowhere near like they did with the land in the backdrop. I realized that, with each swell that passed, the first couple of rows of trees on the shoreline would disappear completely behind the rising swell as it passed underneath me and on towards the shore. While triangulation and distance certainly amplified the area blocked out by the passing water, it was enough to make me wonder how big these swells really were.

I looked out to sea again in an attempt to gauge their size, just in case there was trouble to come. Yet the sky was clear and cool, the wind was moderate, and the sailing easy. The ocean looked as its name would suggest; Pacific. Looking out to sea gave me no perspective for understanding the size of the swell. I needed the land to understand the sea.

My life is like that these days. I sometimes lose the sense of the size of what I am dealing with. I need to take time, to gain perspective, to understand the changes that are going on in my life. The ocean of my daily life rolls on, lifting me up and taking me down on an irregular rhythm. When I am in the trough, I lose site of those thing that would give me perspective. When I look away from the things I must face, the ocean of my life seems calmer, less threatening. When the swell of life lifts me once again, I can see that there is much more before me than behind me, much more to live with. I just have to wait for the sea to change my point of view, and keep my boat off the rocks.

Sunday, 3 August 2014

Don't Respond

Some of you are going to read what I write today and think you need to do something, to respond, to reach out to me. You will think I need you in some way, or that this blog entry is a cry for help. It is neither. I want nothing from anyone. This is just a place for me to say how I am feeling today, this is a part of my journey; it is mine and mine alone, a walk that I take solitary.

I am tired today, too tired for explanation or definition, tired as if I had spent endless hours on a Herculean task or like a man too many days without sleep. Yet I have slept, 14 hours on Saturday and 16 hours today. With all this I am tired, hands to tired to pull on compression socks, body too tired to wiggle into pants, fingers too tired to button a shirt.

With all this tired, I have arisen, resentful of my blog, demanding of me that I write, that I keep my commitment to myself. I am up, coughing, rubbing sleep from my teared eyes, feeling the sweat of an overheated apartment, all the while wishing I had not left my bed. I am worn and weary, ready to give up the day to sleep once again.

My shoulders hurt, my neck hurts, my hands hurt, my body hurts; all a low grade pain like an arthritic. My upper body is one big ache and my lower body is numb with inactivity. Nothing on me works like it should; no part of me functions normally any longer. I am just a semi-functioning animal, living a pseudo-human life.

Today is the kind of day when I want to quit, when I wish it was just done with me. Today is the day I feel like I am dying from ALS, not living with it.

Saturday, 2 August 2014

Brian Fender, Guest Blogger - Killing A Healthy Body

When you get diagnosed with ALS, you join a pretty exclusive club, one with a very diverse membership, the club of PALS. One on the People with ALS I have had the pleasure to meet online is Brian Fender, an artist and writer. Brian, and his partner Ron, lived in New York until Brian was diagnosed. They've returned to Little Rock, Arkansas to be near family and friends. In the cruelty that is ALS, he is bedridden and no longer able to hold a camera, but he is very thankful that he can still type and create. The other day he wrote the following.

I have been telling myself little lies. I have been able to maintain my weight on less calories for over a year now. Thoughts of “maybe the disease is sedentary or even reversing itself” flow in and out of my consciousness. Maybe if I get stung by a bee or bit by a poisonous snake it will change everything and cure will be found right under our noses. But after several days of not being able to push myself up in a sitting position I know these little thoughts are delusions.

My muscles are deteriorating and I have to sit in this fact and learn to accept the whole truth that I will soon be stuck in this body. Many others have done it before me and done it beautifully I might add. I have met a couple this month that doing amazing things that keep them going.

I sometimes wish that everybody would become paralyzed for a year. I think that if everybody experienced the loss of their free will there wouldn’t be all this destruction we seem to be hell bent on doing to this planet we have been give or to each other. People would just be happy to be able to hold and kiss their loved ones. I can’t pucker to give a proper kiss. Just be happy to speak to their loved ones, happy just to be able to get up and walk out the door. Instead we habituate to everything around us and need more shiny things to keep us from habituating. I’m still guilty of it.

A young employee of my brother’s killed himself the other day. I don’t want to know the details I am going to have enough loss to deal with, with my ALS friends. All I know is that it was a shock to everyone. I am quite certain that if he had lost the capacity to do anything for himself for a year he would never have ended up killing a healthy body.

Friday, 1 August 2014

Something In The Way

I don't want to die, at least not yet. I want to live and I am ready to live as much as I can for as long as I can. Yet within this life that I live, there are many moments where I wonder if it is all worth it, if the work and effort of being here provides enough reward to keep going. The struggle of so many parts of my daily existence is something most people simply cannot grasp. The humiliation that encompasses so much of my loss and inability is a daily weight, a pressure on me, a burden which I am forced to carry.

The simple issue of going to the bathroom is a great example of this. For the second day in a row I have awoken with "tummy trouble"; it really was the cherries. I ate too many I guess, and they are having that laxative effect which, in combination with coffee and other foods, causes me to get out of bed in a hurry and head for the throne room, hoping I can make it one time.

Of course the problem isn't just getting there; it's getting out of whatever I am wearing before it's too late. What a lot of people don't realize is how well trained your body becomes with respect to having a bowel movement. For most, it starts with the pressure sensitivity that says it's time to go. You go into the bathroom and drop your drawers, then you sit and things happen pretty much automatically from that point, in most cases. What you don't think about is the training you are giving yourself. Sit... then go.

But what happens when something interrupts all that training? What happens when something is in the way when you sit, something that you cannot quickly get out of the way? For me, the process has just that interruption. I sit, then I have to struggle out of my jeans and underwear while sitting. In the meantime, however, the bodily functions that I have trained for nearly 60 years are in automatic, wanting to start their side of the process the minute I sit.

This interruption of process is worse when urgency increases. A body wants to do what a body wants to do. So here is my challenge to all of you. Next time you go to the toilet, sit on it fully clothed. Then try and get your jeans off without standing or lifting. Let me know what that does to your level of success. I know what it does to mine.