Tuesday, 30 September 2014

Why Me?

Kate has given me another card, one with cute stickers all over the front. Inside she has her own epigraph, words of encouragement to me. She says "You can't let life get in the way of living". It is hard sometimes to get ALS out of the way, to not let this turn of life get in the way of living. Overall, though, I think I do a pretty good job.

A friend and I were trying to set up a dinner appointment yesterday. We compared calendars and both of us realized we had very busy schedules. Each of us has days with little in them, yet those days seem well offset by the activity filled days. Today, for example, is a very quiet day for me, with no homecare workers coming in, no appointments, no shopping plans. Yet tomorrow is filled from 9:00 AM until well into the evening. It just works out that way.

I like my busy life. I like living it. I like getting out and being social, enjoying the pleasure of friends both here at home and my favourite haunts around the city. I like their company; I come alive in the company of others. As my world closes in around me and ALS confines me more and more, my hope is that, when I cannot go to the party, the party will come to me. Regardless, I am going to keep heading for the party as long as I can.

Both Johnny Cash and Kris Kristoffersen made a hit out of a song called "Why Me". You might think that this would be a plaintive country song asking God why so many bad things were happening. It is not. In fact it is an uplifting song, thanking God for all the good in life. The opening lyric is "Why me Lord what have I ever done; To deserve even one of the pleasures I've known."

While I get sad at times, down at times about the way my life has turned out, I need to be reminded now and then that at least I've had a life, and a pretty good one at that. As I said to another friend the other night, "I'm pretty happy with my life except for this one small health problem." It's important for me to remember that struggle and suffering are an inevitable part of living, and so is death. The struggle that I am going through as I head towards my final end is really only one small part of my life. I've had a lot of pleasures along the way.

Monday, 29 September 2014

Am I Negative?

I've been told that my blog entries have been a bit depressing of late. One of my buddies told me I had to stop writing all that "dark shit"; another suggested that I had been awfully negative. When my daughter came over yesterday we talked about it as well, the tone and content of my thoughts and words.

Then we talked about the book "Tuesdays with Morrie". We've both read it, and interestingly enough both remember different key passages from it. For me, the strongest thought was when Morrie commented that "some day, someones gonna have to wipe my ass." It was a statement about loss of independence, the ever progressing nature of ALS. Kate remembered the line where Morrie saying he allowed himself 30 minutes of self-pity each morning and no more.

I occurred to me that perhaps this blog was my 30 minutes of self-pity, although many days I don't see a lot of self pity in it. This is, however, the space where I get to talk about living with ALS, and life in general, in pretty unflinching terms. In this space I try very hard to hold no punches, to leave little on the table. I want, in this journal of my journey, to share with as much reality as possible.

Self-pity is something I used to do. It's interesting that I do so little of it now, when I have a lot that I could use as a rationale for self-pity. Misery could easily be a part of my daily life as well. Yet I am far too pragmatic to spend large amounts of time in either of these places. They do so little for me, and even less for those around me.

When I am in public, I know this for sure. After about 30 seconds of hearing about ALS and my life challenges, people are pretty much ready to talk about something else, anything else. It is a depressing and boring subject, rife with all the emotions that drag us into our own misery. People don't want to hear about sad things, so I talk about other things, happy things, funny things.

On the other hand, I truly treasure those moments when I can talk about it, especially with those who care about me. I find those time, those minutes when I can say what it feels like to live with this, even more revealing and uplifting than the process of writing. So if my blog seems a bit negative to you, understand that this is where I get to tell the real story; it's not a very positive one. I get it out early; that way I don't have to carry it around all day.

Sunday, 28 September 2014

Another Thing To Manage

I went to another football game last night, another game between my two favourite CFL teams, the Calgary Stampeders and the BC Lions. I like to say that when these two teams play, my team wins either way. The truth is that I have been a BC Lions fan since I was 9 years old, the year my Uncle Peter took me and my brother Bobby, now known as Adam, to a BC Lions game in the old Empire Stadium in Vancouver.

It must have been quite the challenge for my Uncle Peter, a young, single man only in his late twenties at that time, to haul two rambunctious little boys to an open stadium football game, expecting them to sit and watch, cheer at the right time and only stand up when there was a touchdown. It was quite the ritual for Peter. I remember him more than once telling me to sit down.

Of course I was just a little boy. When I sat down I couldn't see that much of the action, especially down field. When the BC Lions scored a touchdown, I stood up like everyone else, only to discover that the people standing all blocked my view anyway. It didn't really matter, though. I remember that day, I remember my Uncle Peter and his love for football. I remember his laugh, much like my Grandpa's laugh, and his love of humour, still a family trait.

Unfortunately for me, outdoor games in cold weather are becoming more and more problematic. With my leg muscles no longer pumping blood properly and no longer generating heat, my legs and feet become very cold, even in the mildest of conditions. I can take the cold; it's no big deal. The problem is that it takes many hours at home for my feet and legs to get warm afterwards.

This means I go to bed with cold feet. When my feet are cold, I cannot get to sleep. Last night I was able to move my upper legs about and generate some warmth. I even tried rubbing my lower legs and feet, but to no avail. The circulation is so poor and the muscle activity is essentially non-existent. My feet stayed cold and I stayed awake.

It was about 3:00 AM before I finally got past the cold feet and into the warmth of sleep. Fortunately I have no plans for today, so I slept until well past noon. It's just frustrating. In times past when this happened, I could just get up and put on a pair of socks. That's a major deal now, with the wheelchair and my legs not working. And anyway, I doubt that would have worked all that well. Even with socks on, there is no circulation down there. So I would be putting all the effort in for socks, only to find my feet remained cold beneath them. It's just that way these days; things that used to work don't, and working hard to make up for it doesn't usually work either. It's just another thing to manage.

Saturday, 27 September 2014

One Little Bit At A Time

I've learned lessons from the sea, the kind of lessons that cannot be learned by listening to the stories of others nor by reading them in some guide or magazine. I've learned lessons about weather and helm, distance and direction, lessons about the limitations of ship and crew, the power of waves and water. I've learned about attacking odds, moving against them steadily and defeating them not through force, but through persistence.

There is a stretch of water along the Sunshine Coast of BC which challenges all who come there in anything except the easiest of times. It runs from Welcome Pass, just up from Sechelt, down to Gower Point, the entry to the safety across Shoal Channel and into Gibsons Harbour. This stretch of water is exposed to the long fetch, the full fetch of the Salish Sea, running clear from the islands that protect the entry to Puget Sound all the way to Campbell River, an open stretch of water where southerly winds build a pounding triangular sea, bounced back and forth in a bathtub action by the shores of Vancouver Island on the one hand and the mainland coast on the other.

It is a dangerous stretch of water in bad weather, having claimed more than one vessel whose skipper was insufficiently experienced or arrogant enough to assume that the mere power of engines could surpass the strength of the sea. It is possible to navigate this stretch in all but the worst of weather, yet each year it claims someone, whether professional mariner or recreational boater. It is not dangerous if you know what to do; it just takes those who lack the experience to know when to turn back.

In one of our many sailing trips, my daughter Meaghan and I were traversing this stretch of water in late afternoon, an afternoon of foul weather and adverse conditions. The wind was pounding us with a near gale, driven up by a building southerly rising in the Strait of Juan de Fuca, turning the corner in Haro Straits, running fast, furious and free up the Strait of Georgia, finally blasting itself onto the open shores of Davis Bay.

Meaghan and I made this run carefully. The wind held us back, the tide pushed us back, the waves pounded us back, rising alongside and running green water from the open seas over the foredeck of our small sailboat. I knew this water and I knew this boat. The way to take it was steady, a hand on the tiller and an eye on the water. This stretch is an 11 mile run; with wind and wave against us we were making no more than 2 or 3 knots; it was going to be a long stretch.

As we passed Davis Bay we heard a Mayday on the radio; this was one time when I wished I was running with the radio off, something I would rarely do. We had passed Davis Bay but behind us was the call for urgent assistance. A boat had overturned and people were in the water. We knew what we had to do; we turned and suddenly were headed at 9 or 10 knots away from where we wanted to go.

As it turned out, the mayday was a false alarm, a roadside motorist seeing a windsurfer go over and assuming it was a boat, not just someone taking advantage of the full surf that this weather drove before itself. Once we cleared the mayday, we still had 9 miles to go while making at best 3 knots an hour. It was to be a long run.

I settled in, hand on the tiller, face against the rain, standing square in the cockpit, bracing myself with the railing and seat, prepared to work against it all, headed for home and safety. I had my GPS beside me so I could get a better sense of run and speed over ground. It showed each mile, each tenth of a mile. I came to realize that every 14 waves represented a 10th of a mile; every seventh or eighth was a bad one. I held the tiller, counted the 10th's of miles, and knew that with each passing minute our goal of safe harbour grew ever closer. We got there safely.

Tonight I was at a social event. It was at one of my favourite hangouts and, as usual, I stayed late. When I arrived I could not park in the regular handicapped spot; it was already taken. So I parked in the laneway across the street. After my evening with friends I made my way out of the pub. I approached the curb and gutter, one that has given me grief in the past. I made my way slowly down the the edge and worked across it.

Once safely setup, what lay before me was the steep rise to the crest of the road, the hump in the middle. So I edged my way up slowly, adjusting my body to maintain a center of balance and moving the wheels on my chair a bit at a time. I inched forward to the top. Once there I rolled down the other side where I was again presented with the steep slope up the alley way. Again I move in careful, measured increments, balancing myself as I moved up the rise to my truck.

It was there I realized the similarity between my adventures in sailing and my adventures in my wheelchair. I am no longer strong enough to simply force my way up something. I am no longer able to push with the power I once had against the slope of the road. But like my sailing adventures, if I take each increment, each rise, each stage in small bits, I know I can get there; every push, every struggle, every part; none is monolith, all can be taken in smaller pieces. I may no longer be able to run, to stand, to walk, to stretch, yet I can still get there, one little bit at a time.

Friday, 26 September 2014

I Can't Help

My daughter bought a car yesterday. This is something she has been struggling with for a while; what to buy, where to find it, when to buy it. She wanted her transportation issue settled before going away next week, a trip which will see her out of town for all of October. She didn't want to come back to Calgary having to purchase a car in the midst of a Calgary winter.

She is a smart girl. Her car purchase decision involved research and a clear analysis of her needs and wants. She took into account things like winter driving and maintenance issue, the need for both winter and summer tires, fuel consumption and all the other thoughts that one goes through when making this kind of purchase. And of course, she considered cost.

I knew about her needing a car; we had talked about this a few times. I haven't really been able to give her a lot of advice on this on. She seemed to be struggling with making the purchase commitment and I didn't want to encourage her into something she might regret. On the other hand I knew that she was ready to get this done, ready to have one more thing out of the way before her big trip.

She called me yesterday to ask if she could come over. She was with a friend of mine and she told me they were looking at a car. When she arrived she was very excited to tell me that she had bought her car, a small Korean model with manual transmission, manual windows, no air conditioning - a basic little car. She had asked my friend to come along so she could have a sounding board to help her check out things like the engine, transmission, tires, and general wear and tear.

I am happy that she bought a car, a car she wants and likes. I am sad that I could not help her. I could not help test the manual transmission. I could not help check under the hood. I could not get underneath to look for road damage or weather wear. I could not even get in and out of the car all that easily. In short, I couldn't help her make this decision. Instead she turned to one of my friends for this help; he took her and helped her decide.

This is another thing ALS is taking from me, my viability as a source of help for my children. Both financially and physically I am failing, no longer able to do the things a Dad should do, no longer to offer the kind of support a parent should offer. I am happy she bought a car. I am sad she didn't ask me for help in checking it out. I am even sadder that she new without asking that I couldn't help her.

Thursday, 25 September 2014

A Semblance Of Dignity

It was another sleepless night last night. I am finally getting to the place where I plan to talk to the doctors on my next clinic visit. I am not sure what causes this inability to get to sleep. Perhaps it is because I simply slept too much a couple of days ago and I just don't need the sleep. Perhaps it is because I am anxious and worry too much as I head to bed. I just don't know. All I know for sure is that I finally got to sleep at about 3:30 AM last night.

When Rosa came in this morning, she was a few minutes early while I was late getting up; she managed to catch me about half-way through putting on my pants. I asked her to wait for a minute at the door so I could cover up. Once reasonably covered, she came in and closed my bedroom door; I finished putting on my pants. This kind of interruption, this kind of privacy issue, is nothing new to me. I have a disease where modesty and privacy go out the window fairly early.

When I was in the hospital way back when, getting diagnosed, there were all kinds of people who wanted to see my legs sans pants. There were doctors and nurses and orderlies, even volunteers, who got to see what I looked like in my underwear, and less. Friends have had to endure watching me dress and seeing me deal with bathroom issues. Those who have traveled with me have had to put up with me using my jug in the middle of the night.

My dignity is long gone around physical matters. I know this will get worse. I will need help getting dressed soon, putting on clothes, fighting with compression socks, fighting my feet into shoes. Those people will want me to wear loose clothing, pants that slide on easily and shirts that are loose for simplicity. My wardrobe will be defined by others, those seeking to make their work easier. I will soon be dressed like a slob on a permanent basis; sweatshirts, sweatpants, oversized shoes, and probably, in the end, one giant bib so I don't mess up my clothing. I saw that guy in the mall last year and didn't like what I saw.

I hope that those who help me understand that this is important to me. I don't have to look like a fashion plate. Nobody could ever accuse me of having high end clothing. My jeans come from Costco, my shirts mostly from Walmart or Mark's. I dress simply, but in clothing that fits. I want it to stay that way. I want to retain at least some semblance of dignity.

Wednesday, 24 September 2014

The Darkness

There are two people living within me, two spirits with two different sets of emotions and feelings. There are two parts to me, constantly battling for the forefront, constantly seeking dominance one over the other. No, I don't have a split personality. No, I don't hear voices, nor do I talk to myself, at least not out loud. Yet I know these two sides live within, side by side.

The first is the me that most people see, the me that is social and positive, the me that is upbeat about living and life. This person wants to have fun, wants to smile, wants to do things and go places. This person is compassionate, caring about those around him, yet at the same time mischievous, continually finding reasons and causes for laughter. This is the person who comes out in public.
The second is the darker, broodier person, the one who prefers to hide in a silent, darkened room, seeking solitary spaces, gloomy places. This is the one who is filled with pain and anger, frustrated at what life has done and given, saddened by the daily losses and struggle, frustrated with the past, present and future. This is the person who comes out when I am alone.

Sometimes these two get mixed up. Sometimes these two people cross paths, the dark side coming when the is light all round, the light side finding its way accidentally into the gloom. It can happen; you can see it happen. Mostly, however, the darkness only comes when I sit quietly alone, contemplating just where I am these days, what brought me here, what is in front of me.

There is a reason I am social; it locks out the darkness. In the company of others I find it easier to live within the light, the battle with sorrow ever diminishing as those around me give me strength just by their presence. Yet that person, that sad and depressed soul, is always present just below the surface, the melancholy seeking a crack through which to seep, a way to darken the brightest of days.

The tears are always nearby. I suspect it will be that way right up until I breathe my last. I don't live with them forever there; I rarely see them myself let alone allow others to see them. I try hard, really hard, to keep this darkness packaged away where it cannot hurt those around me. It is work, real work, to keep the balance, recognizing the reality of my sorrow at the same time as not letting it constantly burden others.

My mind is a dangerous place. Sometimes, usually at night, when I am alone, that darkness, the anger, the pain and frustration bubbles out, blackening everything about me, stealing everything that looks like joy and happiness. I go through this darkness, this valley of the shadow of death, eventually emerging to see once again the light of day. I hate this darkness, this sadness. It serves no purpose, offers nothing of value. It's just there, stealing what it finds, destroying what it can. Yet no matter what I do, it is there.

Tuesday, 23 September 2014

A Day Of Nothing

I've decided to stay home from my regular Tuesday night Trivia group for tonight. I'm not ill, nor am I too tired, nor am I depressed. I just don't feel like going tonight. It can happen. Instead I have decided to stay home, watch something on Netflix, eat leftovers, have a few beers, and do almost nothing.

This whole day has been about doing nothing. In fact I just got out of bed a few minutes ago, purportedly to get dressed to go to Trivia. It was in that effort that I decided I would just stay at home. I've never really done this before, spent a whole day in bed, unless I was sick. Even when I have been sick, even in hospital, I have made it a point to get up and out of bed.

This all really started last night. I went to bed at a decent hour but could not sleep. As the sleepless hours wore past, I started to get angrier and angrier at my disease, the frustration and rage rising within me as I thought more and more about what ALS is taking from me, about what it is stealing, about how much of life I am missing, how much more I will miss.

This kind of anger is a common part of the grieving process. Yesterday I had to confront the reality of another stage of losses, both past and soon to come. With ALS you don't just grieve once; you do it repeatedly, almost constantly, for much of the time you spend with this silent killer. I am coming ever more firmly to grips with what this disease is doing, and will do, to me, for the rest of my shortened life.

Eventually last night I finally fell asleep. When I awoke late this morning I remembered that I had nothing to do today, nothing on my calender; no visits from home care workers, no appointments with doctors, nothing to do until Trivia tonight. So I decided to rest. Once I was done resting, I got myself a good book and read it, completely, while staying in bed.

I have food at home. I have beer in the fridge. I need a quiet time after a very busy week last week. A day of nothing is not a bad thing. I like the calm of it all.

Monday, 22 September 2014

The Beginning Of The End

Over the last three weeks I have noticed a marked decrease in my arm strength. This is happening in both arms at about an equal pace. Up until now my left arm has given me more trouble than the right. Now it seems pretty evenly distributed, with my left arm being weaker and my right arm suffering more pain as it tries to take up the load. It is essentially a repeat of what happened to my legs.

If things go the same way as my legs did, I am now most likely at the beginning of the "rapid decline" stage, where I see the progression take off more aggressively than it has over the last year or so. This first indication of arm trouble was actually this time last year, when I began to notice a general aching in my left arm. It weakened over the fall until it was first measurable at the ALS clinic early this year. From then the decline has only been slight. Now it is more, and my right arm is joining in the fun.

Of course yesterday this was all the more noticeable than other days. I was exhausted from a busy week, with people over or going out every night from Monday onwards. There was the wedding reception on Friday, usually a day when I am home alone and happy for it. There was the wedding on Saturday, a day with a great many activities and responsibilities. Even Sunday had its chores and requirements. By Sunday night I could barely move.

This has already meant more changes for me. For example I can no longer consistently get into my bed from the wheelchair. Sometimes I can make it all the way up to the rotation point. Other times I get half-way and give up, using the wheelchair wheel as a resting point before completing the trip. Then there are the times when I simply cannot get up to get across the gap no matter how hard I try. Then I simply lift myself onto the wheelchair wheel and fall sideways, trusting in God and the fates that my chair won't move and I will be able to pull myself into bed.

There is a new sling on the way for my recently installed lift system. This will make a difference as it is designed to help me make the semi-standing position needed to rotate onto my bed. This is simply one of the things that I will need to make life easier. It will likely be spending more time in my power wheelchair as my arms are becoming too tired for long haul pushing. I will also need more help at home from family, friends and home care.

My life of independence ended when home care workers started coming in a while back. I will become more and more needful of their help as this process continues. While my progression has seemed slow for a year, I think that is about to change. It is the nature of this illness to take all it can, and then take some more. This is starting to look more and more like the beginning of the end.

Sunday, 21 September 2014

Late Day, Early Night

It's a very late and very short blog today. I got home last night from Brian and Tanya's wedding at about 2:00 AM and I woke up at 11:00 AM this morning. I was exhausted despite 9 hours of sleep. It's getting harder and harder for me to get enough sleep these days. I am simply tired all the time, regardless of how much I sleep.

I had errands today and needed to get them done before it got too late; I had my tuxedo to return, some things to pick up at Ikea and a few groceries I wanted at Costco. Thankfully my friend Dion came with me to do these errands; without his help I would be much worse than I am right now, and right now I am still completely wiped.

My daughter is arriving in a few minutes. She and her friends are making beer and wine under my supervision here in my apartment. I won't have to do all that much, other than stay awake, yet even that seems like too much of a task.

Tonight is a sleeping night. I expect to be in bed by 10:00 PM and I expect to sleep until near noon tomorrow. I really need the rest.

Saturday, 20 September 2014

Holding The Rings

It's the wedding day today. My friend Brian is marrying the love of his life, Tanya. They are the most terrific couple and I see a great life ahead for them. My role in all of this today is to be the best man. When Brian asked me to be the best man last winter, I shook my head and wondered at why he would do something this foolish. I had just gone through a rapid decline over the last year and could not imagine that I would be doing as well as I am today. He, however, could imagine it, and gave me one of the most amazing gifts one man can give to another, the chance to stand beside him in on of the most important days of his life.

I've wondered over the years about the term "best man". Isn't the best man the one who gets the girl? Am I not the "second best man"? Of course these kinds of thoughts drive me to research; it's just the way my mind works. I have to know. So I opened up Google and away I went.

The term "best man" arises from our ancient days, back even before the birth of Christ and the theft of power over marriage by the Catholic Church. It would seem in those days, in the world of small, isolated villages, rather like rural Saskatchewan, there were few decent brides to be had within local populations, the best and prettiest of girls often being taken up by the local lords with others shipped off by fathers trading pretty daughters for political or economic gain. So often a young man would have to seek a bride abroad.

Of course the same problem occurred in other villages, where eligible brides were a valuable good in trade, women at that time being the possessions of the man of the house. If a young man had nothing valuable to offer in return, he had little hope of a decent date. So, in this circumstance, the young man would gather together a group of his best buddies, the strong and healthy swordsmen in his village, and they would go on a bride raid.

In a situation where you are stealing a bride, you don't want some weak, lillied skimp by your side. You want the best man you can find, the man who will beat back the defending family, sword in hand, ready to fight for you, ready to best the foe. Hence you wanted your "best man".

Once you got your unwilling bride back to the village, you wanted someone to keep your prize at the alter, so you got your Mother or Sister to stand beside her while marriage vows were invoked and expressed. By your side, you wanted a man who could protect you in case your young bride's family should show up unannounced to reclaim the property in question, your soon-to-be wife. Weapons were kept discreetly out of sight, in most cases beneath the alter or behind a convenient screen, except for the best man who was generally encourage to wear his sword at the ready.

Then there was the whole ring thing. You didn't want to hand that over to just anybody. In many cases your wedding ring was the only piece of gold you could afford. You really wanted someone you could trust to handle that while you stickhandled the rest of the whole wedding. You needed someone beside you that you trusted, the best man you could find in the village.

So today I get to be the best man. The world has changed a lot in the last couple of thousand years. Yet these terms, and a great many other old traditions, stay with us in the marriage ceremony. I suppose it is a good thing that my role is largely ceremonial, as I can neither wield a sword nor protect the groom. I can, however, hold the rings.

Friday, 19 September 2014

A Better Life

It's been a very busy morning here in my apartment, with home care sending three people to see me, to care for me, each with their own mission and responsibilities. First the home care worker who was to help me with exercises arrive, along with a supervisor to ensure she could do the exercises properly. This is exactly the right thing to do, as many home care workers are exposed only to a limited subset of the exercises needed to keep my leg muscles from stiffening and contracting.

About a half our after the first two arrived, another young lady arrived to take care of my housekeeping; she is my substitute Rosa. She headed right into the kitchen, and while her process is not what mine would be, she is doing that which needs to be done in order to make my home tidy and livable.

What is interesting is that all three of these women are from East Africa, two from Eritrea and the third from Ethiopia. One of the other women who comes in periodically to provide me with home care is also from East Africa, from Somalia. The three women today were all surprised to see one another; they all work for the home care agency but had no idea that they were all from the same region and all spoke the same languages.

This is a fascinating country of ours, where immigrant groups come at different times, diasporic and seeking a safe place for a new life, only to discover that others from their "old country" are have joined them. Here they can settle in a diverse country free from the threat of war or rebellion. Here they can raise a family and plan for a future, free from the violence they left behind. I love the fact that we have this diverse ethnic polygot in Canada; we gain much more than we lose from most immigration.

This is not to say it's all rosy and good. Some of these new immigrants bring the intolerance, hatreds and mistrusts with them that they are attempting to escape by coming here. Many come with little or nothing and are compelled by circumstance to work in low paying jobs, often both husband and wife working while children attend day-care or school.

Of course it is never an easy thing being an immigrant with limited resources. Yet these people will work, and work hard, to build not just their own future, but that of their children and their communities. We hear so much about those immigrants who seek to perpetuate the dissonance of their homeland; we hear so little of those who come, work, pay their taxes, raise their children.

I've met three women like this today, women who have given up much to be here, women who are working hard for their families, working hard to make a better life for themselves, and for me too.

Thursday, 18 September 2014

Rob Ford

Another PALS died today. I could start every blog entry with this sad note; we die at a prodigious rate. It was another PALS whom I knew through the Internet. My online friend, his sister, is really the person I know. Now she has lost a brother, a man near my own age who struggled with this nasty disease for only 14 months. A family and community grieves.

As I started my day today, I read a news article about Rob Ford, the celebrated mayor of Toronto. He has been diagnosed with Liposarcoma, a rare and aggressive form of cancer. This type of cancer is highly treatable through chemotherapy, radiation and possibly surgery. Rob Ford has hope, a fighting chance. We with ALS don't.

Here are a few thoughts to consider as we think about the lives of these two men, with two different and terrible illnesses, one still fighting for his life, and Jim, a Person with ALS who fought a battle that had only one possible conclusion.

Rob Ford has a form of cancer called liposarcoma. It attacks 2.5 out of every one million people. Jim had, and I have, ALS, a form of motor neuron disease that attacks 60 out of every one million people.

Research into other forms of cancer has lead to treatments for all forms of cancer, giving Rob Ford a fighting chance to beat his illness. Research into ALS has lead to no truly viable treatments, offered no chance of a cure. There are other forms of motor neuron disease such as progressive bulbar palsy, pseudobulbar palsy, primary lateral sclerosis, progressive muscular atrophy, spinal muscular atrophy Type I and Type II, Kennedy’s disease, and post-polio syndrome. This doesn't even begin to look at similar diseases that are quite possibly related to MND and certainly fall under the broader net of neurological illness, things like MS, Parkinsons, and Alzheimer's.

Rob Ford has a disease with a 60% five year survival rate and a 40% ten year survival rate. That sounds terrible yet it gives him more than a fighting chance to live well into old age. Jim had, and I have, ALS, a disease with a 20% five year survival rate and a 5% ten year survival rate. I will almost certainly not live much past 60, and I was 57 when I was diagnosed. Jim only lived 14 months after his diagnosis; he was 63 when he died. Most PALS die with the first three years.

Every year we raise millions to find a cure for cancer while only a fraction is raised for neurological illness such as ALS. I think I know why. You can see cancer, or if you cannot see it you can certainly visualize it in most cases. It's a lump growing wildly inside of you, your body destroying itself. We actually know that some things in specific will cause cancer, and we know how to avoid a great many kinds of cancer. It is a tangible thing,

Neurological diseases, on the other hand, are largely hidden away in our brain. We cannot see ALS; all we can see is its results. We cannot visualize the complex, microscopic functions that this disease uses to kill PALS; we just see them wither away and die. ALS is a hard sell; it is largely intangible and it deals with the brain, a part of the body we still know so little about. ALS, along with a great many other neurological illnesses, will be beaten one day. I hope that day comes soon.

Wednesday, 17 September 2014

Clean Up

I am cooking again, already, first thing in my day. This makes it two days in a row where I have cooked for dinner, two days where I have had company over to eat with me. This is a good thing. The only downside is the time and energy it takes to prepare food, whatever it may be.

This morning I tried desperately to get up earlier than usual so I could have extra time to make the ribs we are having for dinner. I do them in the slow cooker. First I chop up some onion for the bottom of the cooker, then I add a can of pork and beans. After that I cut up the ribs into serving size pieces and brown them under the broiler in my oven. The ribs go into the slow cooker and a full bottle of barbeque sauce goes over top. Then they cook for about 6 hours before they become a delicious dinner.

Getting up early did not go so well. I simply could not force myself out of bed before 11:30 AM; this is after going to bed at 11:00 PM last night. Of course when I went to bed I couldn't get to sleep. It happens fairly often these days, that sleep is slow in coming. At midnight I had to get up and use the bathroom. This happens every once in a while, that I finally get to where I might sleep and my body says "Oh no you don't."

For most people, getting up at night is a mere inconvenience. For me it can be a real adventure. On the plus side, when this particular adventure finally ended, I was well and truly ready for sleep. It was 12:30 AM.

All of this is to say I have Barbeque Pork Ribs in the slow cooker, bubbling away for tonight's dinner. This might seem like a good thing but I can even find a cloud for this silver lining. I have a new care giver, a lovely young lady building a life here in Canada after escaping the terror and war of Somalia and the strife taking hold in Kenya. Unfortunately she is a Muslim.

Her religious beliefs are of no matter to me; we are all entitled to believe what we want to believe. At least I can rest assured that she will not attempt to convert me, or I hope so. The problem is with the kitchen, and in particular with doing the dishes from my cooking. They have pork on them. It will be a new lesson for me in cross cultural care; probably for her too. At least Kate, Mike, and Liz are coming for dinner. They can clean up if it has to be that way.

Tuesday, 16 September 2014

A Visit From A Friend

Yesterday a friend came by for dinner. She comes by regularly and I really enjoy her visits. She has this ability to make me feel positive and even downright contented. When she stops by, I make dinner and we share some wine. We talk. She is a great listener, which really helps since I am such a great talker.

These visits, along with the visits from other of my friends, are becoming increasingly important to me. I find myself more and more willing to stay at home these days rather than go out. Today is a great example. I know I have to go out; I have a commitment at 1:30 PM. Yet here I sit, reluctant to put in the energy required to get into my truck and drive to this meeting. I have other things which need to be done today, yet I find myself wishing them away so that I could just sit here at home and take it easy.

I can see how people become reclusive. At some point the energy required to get out and do things becomes larger than the rewards in doing them. Take cooking, for example. I love to cook, to make and create things in the kitchen. Yet more and more I find myself skipping the process when I am alone. It seems worth so little to go through that effort for myself; it is far more rewarding when I can prepare a good meal for others. So having company come over becomes even more important. If they visit, I will cook... and eat properly.

The quiet of my little apartment is also becoming more appealing to me. I love a good party, no doubt. Yet more and more I find myself sitting here with the TV off, listening to the sounds of the world outside, simply contemplating my life and situation. It's not at all depressing; it is comforting to have this peace about me. The world is a cacophony, an untuned orchestral blast. Inside, here at home, it is calm and serene. I am getting to love the tranquility.

It's a strange kind of thing. My friend's visit was the best part of my day. There were other parts; home care came to see me and I had some calls to make. Her visit was the best part because of the companionship, the food, and because I had someone to listen to me without offering solutions or passing judgement. After she left, I sat withing my serenity, contented with my life, feeling good.

Monday, 15 September 2014

I Would Rather Just Stay In Bed

I have a new home care worker, a very pleasant young lady who, along with pretty much all the rest of my home care workers, is a relatively new Canadian. She came to Canada from Ethiopia via Kenya, arriving here in Calgary in 2006. She has a husband back in Kenya and has applied for him to come here as well. Canada continues its historic tradition as a land of immigrants.

Having a new home care worker is a bit of a chore for me. First of all, on their first visit they are supposed to come with a supervisor for onsite training. This means they want to arrive early. For most of us, coming at 12:30 PM instead of 1:00 PM would not seem like much of a hardship. For those of you who have seen me try to get up in the mornings, you know what that loss of a half hour does to me.

The whole sleeping thing is problematic; I go to sleep at about 11:00 PM or so at night, except on those nights where I stay out late, typically Tuesday and Thursday. Then all bets are off. Nonetheless, even on nights when I get to bed at my typical time, I need about 12 hours of rest. That 12 hours is not all sleep. Usually I am up three or four times in a night, either to adjust my legs or to go pee, or both. In fact the very act of waking up to adjust my legs invites my bladder to participate in the activities. So these two things usually go together whether I like it or not.

Waking up itself is not a single event. I wake up tired, whether from a night of constantly interrupted sleep or the general exhaustion from ALS, I am tired from the get go. The mere act of sitting up is often enough to convince me to go back to sleep again. In fact that is usually the way it goes; I try to sit up, then lie back down for a while, often repeating this process two or three times until I can force myself to stay upright. So while I may awaken as early as 8:30 or 9:00 AM, I often drift in and out of consciousness for at least a couple of hours.

Once I do finally get there, to the point where I can face the ordeal of getting dressed, I start with underwear and socks. My compression socks are a major ordeal, a fight of the first order, getting them on my foot, over my heel and adjusted on my calf. Underwear, on the other hand, is a simple process of rocking and rolling sideways, adjusting the opposite side upwards with each shift of weight. Then comes the easiest part of the whole process, my shirt. I just slip it on with joyous ease and simplicity. Finally comes pants, another dance of rock and roll with pull and twist. Once reasonably close, I lie back down to give myself the needed pant slack to do up the button. While I am laying down, I usually close my eyes for another 15 minutes, just to catch my breath.

All of this takes quite a while and this is without bathroom needs or a shower. Add those things in and my usual morning takes at least an hour or more. So if you ask me to get up early, that takes a real commitment on my part. I would rather just stay in bed, thank you very much.

Sunday, 14 September 2014

The Morning After

There is calm about my apartment. The patio door is open; I can here the swish and whoosh of traffic going by unseen below my balcony. Everyone has gone home. I am sitting here, alone, appreciating the solitude, though somewhat disturbed by the street noise.

Last night I hosted a bachelor party for my friend Brian. I am happy and fortunate to call him my friend; he has given me the opportunity to be his best man. As such I am responsible for the the bachelor party. We managed to avoid all the cliches that so many of these events seem to fall into. there were no strippers, no cakes popped out of, no drunken blackouts.

What we did was very simple. A bunch of us guys got together, drank some beer, ate burgers and chips, watched football and played video games. It may sound very pedestrian, even boring to some. For us, however, it was a perfect night together, just guys being guys without the need for things that inevitably end badly. It was, from my view at least, a lot of fun. Brian said it was perfect for him too. That's what matters.

Today, of course, is the inevitable aftermath. As is usual with these things at my place, there were plenty of hands in the making and plenty of hands in the cleaning up. Brian arrived early to help set things up; Brad took over cooking burgers in the kitchen; Dion brought his 51" TV; Dan brought his Nintendo: everyone brought beer, lots of beer. This morning Brad, Brian and Dan were still around and help clean up. Yet no matter how much we try, there is always something left for me at the end. I think I do that on purpose. I think I need this bit at the end to confirm that I can still host and accept the responsibilities of hosting.

I like this feeling, the contentedness that goes with making others happy, with providing others a safe place to have fun without worrying about all the other stuff in life. I like the calm before the storm, the noise and excitement of the storm itself, and the quiet time after the storm ends. I like it all; it makes me feel good. It makes me feel alive, in the best possible way.

Saturday, 13 September 2014

It Takes A Lot Of Work

One of the toughest things about ALS is keeping a positive and enthusiastic outlook on life, to live with any sort of hope whatsoever. It's tougher than the physical challenges, and even tougher than the emotional challenges. It takes a tremendous amount of psychological energy to get up, and stay up, in the face of this horrendous onslaught.

Today is a good example of what can pull you down and how much you have to fight it. My left arm is essentially useless today. The other day one of the guys I hang around with punched it to make a point, the way some guys do, as if the physical pounding would drive home is idea like he was pounding it into wood. Unfortunately my arms can no longer take that kind of thing; they damage too easily.

So this morning when I tried to get onto my bed to get dressed, I couldn't. I had to resort to using my lift sling, the one that is sized incorrectly and hurts my legs when I use it. There is a new sling coming; it will be here in a week or two. I didn't think I needed it yet. I had to do this because my arm hurt too much to lift my weight out of my wheelchair. Trust me, I'm going to tell my buddy about this, but the damage is done.

I managed to get onto my bed and get dressed. Shortly I will go out to do some shopping and to attend an ALS support group meeting. While there I will be cheerful and upbeat. Some of these people are in way worse shape than me; they would happily trade me places in terms of onset and progress. I will try and share positive, humourous stories about life with ALS, life with a wheelchair, life with lift systems and bathroom bars and specialized toilet seats. I will try it, and I will do it. It takes a lot but it is something that I believe in.

This is a hopeless disease, unlike cancer or diabetes or even Parkinson's. I cannot take chemo or radiation. I cannot take pills or modify my diet to make this disease slow down or go away. The losses from this disease are irreversible and unstoppable. Yet in the face of all that, people want me to talk about hope, need me to talk about hope, beg me to talk about hope. That takes a lot of energy, especially when there is no hope.

What I have to do is find hope, positivity, enthusiasm; all from within me. I have to find the things I can be hopeful for, the things that make my life positive, the things that give me enthusiasm for living. This disease may be hopeless but life is not. This disease may breed negativity, but I don't have to let it breed within me. This disease may sap my enthusiasm for living, but I don't have to give in completely.

Just remember, it takes a lot of work.

Friday, 12 September 2014

Decisions, Changes

ALS forces you to make decisions; some easy, some hard, some normal like everyone else, some just plain strange and unique to having this disease. Decisions for me are much the same as decisions for everyone else on the macro scale; it's when you get down to specifics that they take on a whole new level of challenge and complexity. They fall into one of three categories; decisions driven by financial needs, decisions driven by lifestyle needs, and decisions driven by personal care needs. In most cases, however, it is a bit from column A, a bit from column B and a bit from column C.

Take for instance the decision about what to wear. That seems normal to all of us; we all make clothing choices every day. For me however, that decision is becoming complicated. As my arms weaken, I can see the time coming when I will no longer have the strength to easily put on my favoured blue jeans. One day will arrive when I cannot put them on at all. I have to make a number of decision around this, not just one; those decisions will be made in increments until there is no more to decide.

First, I will likely have to decide when I can no longer put in the energy to get into my jeans. I make this decision almost daily already, still deciding I can do it for now. When I can't, I have to decide if I am going to switch over to loose fitting things like jogging pants, or if I am going to start having someone come in each morning to help me dress.

Second, regardless of when it happens, I know already I will get to the point where I will need help getting dressed. So now my decision is how I get someone to do that, to help me with the very intimate tasks of putting on underwear and pants and shirts. By that time I will probably also need help with my shower too. I will likely ask HomeCare for this assistance, and then they will ask me what time of day I get up.

That forces a new decision. I don't always get up at the same time. If I say, I get up at 10:30 AM, then there will be a caregiver here every day at 10:30 AM. But what about those days where I am up late the night before? What about those days where I am just too tired to get up? I will have to decide if I want my schedule set by my needs, or those of my caregivers. And of course, all along the way, I will have to decide what kind of clothes I need, purchasing the new ones as the time comes when the old ones no longer work.

I had to make a decision yesterday. I asked Rosa, my housekeeper, to cut back on her visits, to visit every other week instead of every week. I can no longer afford to have her here each week. HomeCare will be coming in every other week to do home making, and you might think that is a good replacement, especially since it saves me money. Unfortunately there are issues that most people don't have to think about with this situation.

HomeCare will not take keys for my apartment. They will not accept responsibility for entry when I am not at home. When Rosa comes on Thursdays, she is here regardless of whether or not I am at home. I can go out on a Thursday without worry. When HomeCare comes, it will be every second Friday; that is what their schedule will accommodate. I have to be here. This means every second Friday I am trapped at home to ensure HomeCare can get in to clean. If I want to get away for a long weekend, my apartment will remain dirty until Rosa comes the following Thursday.

That loss of freedom might not seem like a big deal to most people. The problem is that I don't have just one loss, but many losses. This is just another one, another decision forcing changes I would rather not have.

Thursday, 11 September 2014


September 11, 2001. I was asleep in bed after a long night at work, fixing servers and systems at the software development company where I worked. My phone rang. It was my Mom telling me to turn on the TV, telling me what was happening at that moment in New York City. I watched, horrified and entranced.

I went to the office as soon as I could tear myself away from those terrible images; we had people in transit, flying from Chicago to Vancouver, right at that moment, people on planes. They were grounded in Chicago and it would take several days for them to get home, out of those airports crippled by terrorism. They were safe; other people I knew were not safe.

In a past career I was a sales and management training consultant to Wall Street firms. I worked with a fellow who had his offices in White Plains, NY; most of our clients were in that fateful part of downtown New York City. The first thing I did was call his offices to see that he and his team were all safe, not in the city that day. He was also in Chicago and the rest of the group were in their offices in White Plains. Then I reached out to others I knew, others who shared the contacts with people I knew in the building. They knew nothing; in some cases we would never know what happened, only that our friends did not come out of the building.

I had worked in the WTC buildings and stayed there while in New York. I had the opportunity to see the views from the upper floors, to have dinner in the restaurant at the top of the building. I was in there regularly over the course of a decade. In fact I was in the building the day before the first attack, where terrorists set off a bomb in the parking garage on February 26, 1993.

On that fateful day I was supposed to be in the building, most likely in the subway station when the bomb went off. I was supposed to be meeting someone on Friday morning in the building,  and then heading to the airport at lunch, but we managed to do the meeting Thursday afternoon so I could fly home Thursday night instead of my planned flight for Friday afternoon.

I was not there on 9/11, at least not in body. I thought about my friends, people I knew and people I didn't. I watched in horror as those towers fell. It was a year or two before I would return to New York City; on my first visit back I could not go to the site. In subsequent years I would return again, inching my way closer to Wall Street and the Trinity Church, gazing at the gaping hole in the ground, the rubble and remnants. It's now been several years since I've been in New York City, years in which they have built new towers and memorials, years where things have both changed and remained the same. Perhaps I should go there again, just once more.

Wednesday, 10 September 2014

The Best Idea

I am once again trapped, powerless in my apartment. This late summer snow storm has brought substantial snow to the trees and branches along my street, those branches then collapsing under the weight of the snow, taking out the powerlines below. I happened to be awake last night when it happened here, the dimming flickering of my lights as the power grid tried in vain to keep itself connected, then the bright flash as the lines collapsed with the trees. I've been without power since.

This time, in addition to the usual challenges of the elevator and the front door not working, I have the added difficulty of not having my phone charged. It is about to die, taking away my only real link with the outside world. It's been working so far today; the battery will likely give out in the next few minutes. Then I will be dependent on the kindness of friends and neighbours for all help and communication.

The kind of situation I now find myself in is not a new one for me; this has happened before, a power outage. It once again reinforces how much more limited my life is and has become. I can't just run across to Starbucks for a coffee and Internet access. I can't even go down the the front door to let someone in. My home care worker couldn't get in the building to help me with cleaning and exercises. Fortunately a friend brought me coffee from Tim's; I took the risk of throwing the keys down to him, selfsame keys landing in a snowbank where he had to dig them out. It worked.

Time has now passed. Power has returned. People can come and go. I am writing this last part of my post at the end of my day, a day in which I mostly stayed in bed. After all, when there is nothing you can do, sleep seems like the best idea.

Tuesday, 9 September 2014

I Choose

It's a lazy kind of day today, the kind of day where sleeping in until well after noon seems like a good idea, the kind of day where pants feel optional as long as you are indoors, the kind of day where breakfast and lunch are the same meal, at the same time, with the same good stuff. It's the kind of lazy where you know there are things to be done; you just don't do them.

I look out at the window, seeing the snow delivered to us by this late summer cold front, a bit of weird weather that really isn't all that weird for Calgary, home of the winter Chinook wind that can lift our temperatures from sub-zero to summer-like in the depths of winter. This early brush with winter is disappearing quickly, but not fast enough for some of the branches and powerlines. The roads are bare and wet; through my window I can hear the squish and swish of tires on cars making their way to and fro.

It's quiet, calm and peaceful, but not completely silent. Messages on my phone come and go; calls come in. The freezer hums and burbles behind me as I sit at my table, making my own click and clack with the keyboard. I get the pleasure of this time, It is mine to enjoy, this peaceful solitude. Tonight I will go to Trivia, once again back on my regular path of Tuesday and Thursday nights out, friends visiting on so many other days and nights.

If I must have this disease, if I must live this enforced retirement, impoverished by the physical and financial costs of what it takes to keep me going, I will draw pleasure from it, where and when I find it. I could be unhappy this morning, looking at the cold, miserable weather, jealous of those who are reclining neath the sun in warmer climes. I could envy those who are in exotic, foreign destinations, drinking wine on a sidewalk in Europe or wandering through fantastic, ancient temples in Asia.

I choose not to be unhappy; envy is a bit harder to control. Certainly I am sad. The losses continue; ALS takes a bit more from me each day. My arms are getting continually weaker. My fingers hurt these days. Soon even the act of typing will become more than I can do. Yet here I am, with nothing else before me to change this.

If I cannot change what is happening, I must change how I respond to it. I will not curse at the snow, or bemoan the early arrival of winter. I will take joy in my time here, watching the snow collect and then fall from my tree, seeing the summer birds seek shelter neath the branches, listening to the world noises that sneak into my space. I choose to be happy.

Monday, 8 September 2014

Nature's Ice Bucket

I have to go do a driver's test. After 45 years on the road, the last 35 without any road accidents and that one only a very minor thing with no damage, it is now deemed necessary that I prove that I can drive my truck safely. I understand this. After all, there have been substantial and costly modifications to my truck to put in the hand controls and the lift system. Now it is up to me to prove that I can operate them in a manner that doesn't put the public at risk. This is the job of government, to keep all citizens safe, to prove that I can safely be on the road in my truck.

Of course the fact that I have driven nearly 70,000 kilometers with these controls matters little. In fact, if anything, it demonstrates that I have been driving far too long without submitting to this safety evaluation. I don't blame this on government; I blame this on ALS. It is this disease that has stolen my legs, my ability to walk, to drive like a normal person. This test is just another of the hidden costs of ALS.

So off I go to the testing location, into what is one of the nastiest September days that Calgary has seen in a long time. The clouds above are delivering a mix of rain and snow onto the roads. It is near freezing outside. This won't bother me in the test; I am used to far worse. Where it gets nasty is in the embarking and disembarking from the truck.

When I get into the truck, I have to open the door, transfer to the lift seat, remove my cushion from the wheelchair and then fold the chair up. Once complete, I open the rear door and, using the controls, swing out the wheelchair crane arm. With the arm in place, I hook up the chair, lift it with the crane, and then swing it back into the back seat using the controls. All of this takes place while I remain exposed to the weather. Once complete, I lift myself up with the seat and transfer into the truck, drop the lift seat back down, fold it into place and then, finally, close the truck door.

Getting back in is a reverse of the above process. It takes a few minutes in total, just enough time to get wet from the snow and rain mix falling on me. Often, in a cruel twist that only nature and my friends could find funny, the rain and snow will fall into the back of my neck as I lean over to connect the wheelchair to the crane. It's stimulating. I need that, right? It's nature's own ice bucket challenge.

Some days it seems that if it weren't for bad luck, I doubt I would have any luck at all.

Sunday, 7 September 2014

Go To The Sun Road

I'm home. The excitement of the road trip has ended; I am back in familiar surroundings beset by familiar routines. The last of day of our road trip was as exciting and interesting as any of the others. Unfortunately it was also the last day.

The drive yesterday started earlier than normal. Oddly enough, in spite of the bathroom challenges in the hotel, I slept well. So did David. We were both up early, before 8:30 AM. We both wanted to get underway early, as early as possible knowing it would be a long day on the road. So he went for breakfast while I went through my usual morning struggle to get dressed and ready. He packed the truck while I did some writing. Finally, by about 10:00 AM, we are underway.

Our drive took us from Butte, Montana to Missoula, Montana, and then up the Flathead Valley into Glacier National Park. The drive from Butte to Missoula was uneventful although our stop for lunch in the town of Missoula was great. Missoula is a small college town blessed with terrific restaurants and more brew pubs per capita than anywhere else in the USA. We stopped at a place called the Iron Horse where the Saturday worship of US college football was in full swing.

After lunch we headed for Glacier National Park where we had one of the most exciting drives of the whole trip. The road up from Missoula is uneventful, through low rolling hills covered with well cropped grass, home to massive cattle herds and plenty of horses to manage them. At Flathead Lake we went right, then on up to the park.

You enter Glacier National Park just as those low hills begin to turn into mountains, their sides covered in the kind of dense evergreen forest that I remember from my youth in Stave Falls. The road through the park was narrow, with trees covering much of it overhead. For the first while all you can see is the forest beside you, the branches overhead, and a view of Lake MacDonald beside you now and then. But slowly, almost imperceptibly, the road begins to rise, its edges more defined by rock and cliff and less by forest and lake.

Then it happens. You are driving along the canyon floor and you look up, way up, about 3,000 feet up in the air, along the cliff edge of the massively rising peak in front of you, and you see the road up there, with cars on it, driving, very carefully. It's then that you realize you are headed for a real mountain drive.

As the road rises ever more steeply, the edges become defined by the mountainside, the pavement merely poured right to the rocks rather than to any straight edge of the road. This slither of pavement snakes its way up the mountain face, twisting and turning along the lower half on one big switchback they call "The Loop", turning halfway up the mountain to make the long, winding snake across the face of the mountain up to the the pass at the top.

You realize how narrow and winding this road is about 3/4 of the way up, when you look down the edge and see the 3,000 or so feet of rock face below you. You realize how this road must have challenged the builders when you look at the arched supports melded into the rock of the mountainside, and the tunnels carved through where there was no place to make a road.

The road twists in difficulty, so twisting that vehicles longer than 21 feet are not allowed, with turns so tight that no trailers are allowed, carved into the rock so close that it overhangs and no vehicles higher than 10 feet are allowed. This is a ride straight up and once up most people come right back down. David and I were headed out the other side of the "Go To The Sun Road", as it is called, right out to the other side of the park and then north to Calgary. The traffic was much easier on the other side of the mountain, still exciting in places but nothing like the climb up.

It was an exciting drive, a great way to end a road trip.

Saturday, 6 September 2014

A Stepladder To Get Into Bed

Yesterday was a very long day on the road. We started a bit late, not surprising given that I had another bad night and so did David. Once underway we headed up through the Grand Teton National Park, then into Yellowstone Park. We toured the park extensively, heading in through the south gate and ultimately heading out through the north gate. By the time we got to Butte, Montana, it was 11:00 PM.

The day itself was terrific. The drive alongside Grand Teton and the rest of the lesser Tetons was scenery worth a great many pictures. These sentinals of stone rise sharply from the floor of the Snake River Valley in the Jackson Hole region of Wyoming. The absence of any foothills in front means you see the whole of the mountain, from base to  peak, over 8,000 feet almost straight up. Their sharp edges and hard faces tell the tale of their rapid rise in a tectonic upthrust millions of years ago. The dry sage brush and bunch grass at their feet makes a perfect habitat for elk, all of whom managed to stay magically hidden through our drive.

The south entry to Yellowstone Park presented more opportunity for wildlife to hide from us. We were not doing well at "animal bingo" so far, having seen nothing more than cattle all along the road trip. This was to change later in the day; at this point our luck held and the critters stayed away from view. The south gate entry joins up with the figure "8" that is the road through Yellowstone. Right at that junction is one of the larger and more active geothermic areas in the park, right on the shores of Yellowstone Lake. I stopped and David quickly discovered why I am so enamoured of this park. The hot springs and bubbling mud pots are fascinating.

We continued on the lakeshore heading east, counterclockwise up the lower circle of the figure "8" drive path. Along the way we stopped at the Yellowstone Lake Lodge where we finally managed to break the critter drought. There was a buffalo munching away on the grass in front of the hotel, mindless of the crowds stopping for a classic photo opportunity. Rather than lunch at the hotel, we got burgers in the diner at the nearby general store and sat out front, eating and enjoying the lake view.

Once again underway we made the run up the loop and across the middle of the park, headed towards Old Faithful. As we made the run down the other side, we began to encounter large herds of buffalo scattered throughout the meadows and open range areas of the park. One of them, a sad looking old bull, managed to stop traffic completely as he wander his way down a hillside in the middle of the road. We finally got to Old Faithful, and as suggested it blew its proverbial steam off about 15 minutes after our arrival. After watching the geyser do what geysers all do, we headed into the gift shop and did what all tourists do. My grandchildren will be happy at Christmas this year.

It was 6:00 PM before we began the long drive out of the park, heading north up the western side towards the north gate. There was construction on this road and we got to be witnesses to a minor accident where a truck towing a trailer tore the front left quarter panel off a minivan in the midst of a left turn maneuver. We were stuck there for a half hour, waiting for construction and traffic and for the participants in our entertainment to complete their exchange of information.

As we left the park, we finally filled in a few more spots on our "animal bingo" card with the obligatory Yellowstone black bear and a couple of herds of elk. Then it was off into the night to Butte, MT, arriving at about 11:30 PM. I called the hotel while we were underway and confirmed a room with two beds and a wheelchair shower. Of course, when we arrived the room was, as is what I believe to be normal with all hotels these days, nothing like what they had confirmed to me.

There was, in fact, a wheelchair shower. However there was only one bed; David and I will not share. And then the really strange thing. In this wheelchair accessible room with a king size bed, the mattress on said be was one of those double pillow topped European style monsters, a mattress so high that an able bodied person would need a step stool to get up to it. How on earth they thought someone in a wheelchair could get on to that bed is beyond me.

I called the front desk, initially just to ask about this mystical room that the Comfort Inn in Butte had promised me, the one with two beds and a wheelchair shower. They said that room did not exist, and this was the only accessible room in the hotel. I commented on the bed and the clerk said "Yeah, we wondered about that. Our other accessible rooms are like that too, but that is the bed in that room." We switched to a standard room; it looks like a shower will have to happen tonight when I get home, and I will have to use the toilet at Starbucks. But at least we slept well and are underway early today.

Friday, 5 September 2014

Left Behind Luggage

There are a lot of things that ALS has taken from me, a lot of losses. This disease is also teaching me a few things along the way, lessons which I wish I had learned many years ago, lessons about enjoying the moment, finding the humour, accepting help. One of the greatest lessons for me so far has been about time.

One would think that having a limited life span, a future of only about 16 to 20 months so the medicos say, would make me anxious about time, determined to get the most out of every moment, every instant of it. It has, but not in the way one might expect. What I have learned about time is that, as a finite and ever wasting resource, there are just two ways to "spend" it. You can spend it joyfully, taking everything that every moment has to offer, or you can spend it grudgingly, finding distress in everything that takes time from you.

Yesterday is a good example of what I mean by this. David got up earlier than me, letting me enjoy some extra time to rest in the morning. It was precious and so kind of him to do this for me. As we left the hotel, much later than he would have liked, he took my luggage out to the truck with me wheeling alongside. He had just placed it at the back of the truck, ready for loading, when I asked him for help with the transfer board so I could slide over to the passenger seat. He brought out the board and got me seated, put the board in the back seat, hopped in the truck himself and we took off, leaving my luggage unnoticed, standing there in the parking lot.

It was about an hour later, roughly halfway to Yellowstone Park, our intended feature destination for the day, when David stopped to take some scenery pictures of a beautiful lake along which we were driving. While out there, David went to get a couple of drinks from the cooler in the back of the truck. That is when he noticed that my luggage was no longer traveling with us. He returned to the front of the truck and asked me if I "had any sharp objects".  I gave him my pocket knife, wondering what was going on. He then said "Your luggage is back in the hotel parking lot at Idaho Falls".

I don't know what reaction he was expecting, but I burst out laughing. It was just like some slapstick buddy movie. I could see nothing but humour in the situation in spite of the many hours of lost time that this might have represented to someone else. I could find no annoyance within me, no critique or judgement of the situation. It was my fault as much as his, perhaps more. And it was just plain funny.

A younger me would probably have been angry about the lost time, the damaged schedule. I would have spent hours criticizing myself, telling myself that I was "stupid" for this truly human mistake. I would have made the drive back resenting every minute that I was "losing". Of course the truth is that we lost no time yesterday; there were the same number of hours, the same number of minutes in the day no matter what happened.

The difference is how I saw that time. I could spend it joyfully, finding humour and laughter in the situation, or I could spend it angrily, criticizing myself and David. I chose to enjoy the moment and the situation. After all, I couldn't change it one iota; I could only change how I responded. So back we went, enjoying the drive and the view, laughing at the silliness of it all. There was even a plus side to our return trip; David got to see the Rigby Museum and it's exhibit of local inventor Philo Farnsworth, the inventor of television, something he had wanted to do but gave up when he found the museum opened at 1:00 PM, well after we left Idaho Falls. Now he could go.

We didn't get to Yellowstone yesterday. No worries; they aren't closing the park today and even if the were, there's beauty in this drive no matter what. We will get there today. Last night we stayed here in Jackson, Wyoming, an amazing little resort town in the Grand Teton Mountains. We had a fabulous dinner where I enjoyed Buffalo Tartare, Elk Steak and a terrifically tasty Argentinian Malbec, none of which would have happened without the left behind luggage.

Thursday, 4 September 2014

I Need A Rest

It finally happened. I knew it would, it was just a matter of time. David and I have been on the road for 10 days now. For the last 9 nights our sleeping patterns have been fairly close; he has taken this opportunity to get some extra sleep time in the mornings, I have been working hard to get up early. We are managing to get underway by around 10:30 or 11:00 each morning, with the notable exception of yesterday in Salt Lake City; I blame that on the two girls in the bar. We got to bed very late.

Today, however, is different. Last night was one of those nights where sleep escaped me. This morning was one of those mornings where David got up early. It was bound to happen eventually. I rarely go more than a week or so without one of those nights and David was certain to wake up early at least one day on this trip. So he was up at around 8:30 AM, still late for him, while I needed to stay in bed and rest.

I am truly grateful for the friends who have traveled with me and seen these kinds of mornings. Mike, Cheryl and David have all been tremendously patient and kind with these rough starts that I have now and then. The lack of sleep, for no reason that I can determine, hounds me some nights and leaves me completely bagged the following morning. It takes a special understanding to see that I am not simply being lazy or that I am not just seeking to stay in bed. I am truly worn out on mornings like these.

This morning David took the opportunity to go wash the last of the Bonneville Salt Flats off of the truck. Despite the car wash immediately following our high speed adventure, he assures me there were massive amounts of salt in the wheel wells and undercarriage. I could see the load of salt on the running boards. I believe him. After cleaning the car he went and had breakfast, followed by some local sightseeing here in Idaho Falls. There are sights to see here? I wouldn't know; I was still in bed.

When he got back and found me yet still in my vain attempts to sleep, he offered to take the truck out and fill it with gas. I promised to get up and dressed, here I am so accomplished. My hope is that the road today will offer stimulation sufficient to keep me alert. David will do some of the driving; this is a good thing. We are headed for Yellowstone Park via the Grand Teton National Park, taking the road into Yellowstone through the south entrance. It is a route I have never taken.

We will go and see Old Faithful, that geyser with a timing so consistent and persistent as to earn its name. It will be the third visit for me to this geologic oddity. And of course, there are animals in the park; buffalo, moose, deer, bear, elk and wolf. David will continue in his role of designated photographer; I will simply wonder at the beauty and power of these denizens of the dark woods. And try to stay awake.

Wednesday, 3 September 2014

Going Too Fast

Yesterday I drove my truck on the Bonneville Salt Flats at 100 MPH, that's 160 KPH for Canadians. The flat salt track seemed to run endlessly and had I the enthusiasm for it, I could have turned off the speed governor in my truck and gone even faster. Why not? I wouldn't survive an accident at that speed and, in my mind at least, that is a plus. Yet I did not; the work required to reprogram the truck's computer really wasn't worth that particular thrill. And after all, I can still drive.

I think a lot about the things I can still do, my abilities that are still with me. I can still eat and drink, I can still cook, I can still laugh and tell a good story, I can still have an adventure. Then I think about the things I cannot do, the things I will never do again. Then it gets dreary, my spirits dampened by the sadness of these losses. Some say I should focus on what I can do, not what I cannot do. It's not so much what I cannot do, but what I could once do and can do no more. This is the real sadness, the real loss.

I will never stand up again, never use my legs with any sense of purposeful or meaningful movement. I will never walk upright in the sun, stand in line for a coffee, run after a grandchild, stand on the foredeck of my sailboat and feel the wind on my body. This is not something I could never do; these are all things I could once do that I can no longer do.

I will never get dressed normally again. Sure, I can still slide and slither into clothing which inevitably sits rumpled and poorly fitted to my body. I will never put on plain socks, ordinary socks, unless I take the risk of not wearing my compression socks for a day. Perhaps the bloating and swelling is worth it, just to gain one thing back from this awful disease. Yet the rest of me cannot be clothed as one would normally do so; it's just never going to happen again.

I will never have sex again, never feel the physical thrill of a woman beside me. Perhaps I should say "probably" in this case, as it may happen. Yet even if that miracle were to take place, it would be a very one sided affair. I can no longer take my body to the places it needs to go in order to fulfill my side of the bargain. And of course the wheelchair thing is a whole 'nother kind of barrier to this unlikely event.

There's lots of other things I could once do that I will never do again, too many to list, too many to come. So the best I can do is enjoy what I can do, while I can do it, like driving at 100 MPH on the Bonneville Salt Flats. I can still go too fast.

Tuesday, 2 September 2014

Another Sucky Room

I continue to be appalled at the lies, or lack of truth or understanding, perpetrated by the hoteliers of the world with respect to wheelchair access in hotels. It's just incredible the number of places that claim to have wheelchair accessible facilities when they clearly do not. It becomes more and more obvious to me that most hotels do simple lip service to offering something for a handicapped person; a few, a very few, do it like the mean it.

Last night we stayed at the #HiltonGardenInn in #TwinFalls, Idaho. This experience was sufficiently disappointing as to make me consider calling a local lawyer and launching an ADA complaint with legal action. The room, advertised to us as ADA compliant, was anything but, with a tiny bathroom offering toilet access only, and that access could be called dangerous, no shower nor access to a tub with a shower seat, and a standard sink in a standard counter, making it essentially unusable for me. It was, in a word, terrible.

I have come to expect bad hotel experiences, not as the exception but as the rule. In Canada the lack of a single federal guideline means most places do whatever they think is best. In the US, even with the Americans with Disabilities Act, it's still a crapshoot. Some places do a great job, others do a terrible job, and most are somewhere in between. I appreciate, at least, those who honestly admit they don't have wheelchair access. I detest those who claim they do, like this junk joint by #Hilton, and do not.

So far on this trip, the two best places have been the Harbour Towers Hotel in Victoria, , with a room offering a bathroom with not only wheelchair fixtures but standard fixtures as well, and the Embassy Suites in Lynnwood, Washington, offering the only true ADA compliant room we have found so far in our drive across the USA.

The frustrating part about all of this is that I know for a certainty that nothing will change with all my yelling, at least not until the lawsuits begin. Hoteliers won't be encouraged into making life better for those of us condemned to wheelchairs; they will have to be frightened or legislated into it. After all, we are not their major market, and no business person does anything without either a desire for profit or a fear of loss. I wish some of them could have my kind of loss for a while. They might see things differently, or at least stop lying about their wheelchair accessible rooms.

Monday, 1 September 2014

Book Ends

There are discoveries to be made on a road trip, things to find in place you would never expect to find them. Yesterday was a bookend day of those discoveries, a day with one in the morning, followed by a long drive, and one in the evening.

The morning discovery was in McMinnville, Oregon. David wanted to see the "Spruce Goose", the largest wood frame airplane ever built. It is a creation of the genius of America's mad aviator, Howard Hughes, housed at the Evergreen Air and Space Museum, on Highway 18 just outside of town. In our plan to go there, I was think "amusement and road side attraction", not "incredibly impressive aviation and space museum". If our stop at Boeing, north of Seattle was a 3 out of 10, this place is, without doubt, and 11 out of 10. It is probably the best aerospace and flight museum I have ever seen, a place completely worth the drive.

Our original plan, or rather David's original plan, suggested we might spend an hour at the museum; we spent two hours just walking the floor before even getting close to looking at the Spruce Goose, which, by the way, has a frame made mostly of birch. The media dubbed it the Spruce Goose, most likely because birch rhymes with almost nothing aviational.

The EASA Museum, the "Air and Space Association" Museum, hosts dozens of aeronautical and space displays, many original and many replicas. The displays are static but extremely well documented and presented. The curator has done a fabulous job of documenting the exhibits and that documentation, in summary form, is there beside every exhibit. The reader boards include information on the history of the artifact, whether the display is real or replica, the provenance of the artifact and the list of previous owners. It is an amazing walk down the lane of flight history.

This museum is large, encompassing three separate buildings that include the air museum, the space museum and a theatre. We spent a couple of hours in the air museum before we had to rest, having a low budget lunch in their onsite cafeteria. It was airplane food in an airplane museum. Then we spent another 90 minutes in the space museum before finally running out of energy. We didn't even get to our free film presentation in the theater.

On top of all this historical excitement, something that could hold me for endless hours, there is an aviation themed waterpark in another building, the fourth on the site, set up with waterslides and pools to entertain the young while those of us who revel in the past can wander for hours to our hearts content. This is a place I will remember and recommend.

We spent so long at the EASA Museum that we were late in our final departure, well behind in the time it would take to get to Boise, our intended destination for the night. Instead we arrived in Pendleton, a dusty cowboy town in north central Oregon, at about 9:00 PM, where we tied up our iron horse and wandered into a nearby saloon. We knew we were in a real cowboy town when our waitress said proudly that "we got a nice big little rodeo here".

This particular saloon, Hamley's, is a cornerstone business here in Pendleton; it's been around for nearly a century. It started as a saddlery. Then, some years back, they added a cafe. In 2006 they added the restaurant and saloon. This is no dusty beer and whiskey hall in the dry prairie. This is a beautifully built interior inside a refurbished exterior that has been around for nearly 75 years.

The whole of the re-finished inside is oak lined. They have a world-class kitchen and an incredible wine cellar. Unfortunately for me the wine cellar is in the basement, down stairs that I cannot climb. David, however, could climb, so down he went, taking photographs for me so that I could see this wonderful room below. We ate our dinner of simple, good food. David had a beer and I had a glass of local red wine. Between that and our long day, we were done.