Friday, 31 May 2013

Wheelchair Travel

Travelling solo with a wheelchair is proving to be a bit of a challenge here in the north. Going to Cuba wasn't a problem, but getting a wheelchair accessible room in High Level, Alberta is problematic. The Super 8 has an excellent wheelchair room; one only and it is a smoking room. So I could have access but only if I was willing to sleep in a stinky room. The Best Western has no wheelchair rooms whatsoever. Nor do any of the other hotels in town.

The situation was similar in Chetwynd where the Days Inn said they had a wheelchair accessible room but really it was just a room with a big bathroom; no bars, no shower seat, all the shelves and hangers at standard full height. I wonder what it will be like in Yellowknife tonight?

The wheelchair has been my mode of transport for six months now. It seems like forever some days. As my condition deteriorates I know that I will have to use the power wheelchair more as well. I am already using it when I do errands at the mall across the street from my apartment. Soon it will be my only choice and that will mean the end of my solo travelling days.

Fortunately the airlines have the wheelchair thing down pat; they even have policies and practices for power chairs. That means flight will be possible. I am also looking at putting a wheelchair gate on the back of the truck so that I can travel by road with the power chair. However I will be unable to get from the back of the truck to the driver's seat, so that means I will not be driving once that happens. I will need a constant companion, someone to be with me in all situations.

I will have lost my independence; I will be dependent.

Thursday, 30 May 2013

Empty Hours

Not every road day is a good one. Sometimes they go wrong, not just for the obvious reasons of weather, road and rest, but for other not so visible reasons. On the other hand, even a bad road day is still better than sitting around waiting to die. So perhaps I should use the terms good and great. Yesterday was like that, not a great road day.

The road itself was drearily wet with the spring monsoons of BC. There may have been sun somewhere, but it wasn't showing itself in central BC. The drive from Cache Creek to Prince George follows the Fraser River, using the route first cut through the bush by the Cariboo Gold Rush miners in the early 1860's, past Williams Lake, the drainage point for Williams Creek where Billy Barker struck gold in 1862, and onward north with the Caribou ranchlands on the right and the high Chilcotin plateau on the left, across the river.

From Prince George the Hart Highway wanders its way north, slowly rising towards the Continental Divide at Summit Lake, leaping up to Pine Pass and then following the Pine River through its mountain gorge and into its lazy valley as it winds its way to the Peace River at Dawson Creek. This water makes its way north, out of the eastern Rockies, through the Mackenzie River system, ultimately draining to the Beaufort Sea.

Chetwynd, where I stopped for the night, is one of the many one industry towns in central and northern BC. It follows the standard one horse town plan, with the highway running through the middle, a parallel road on each side hosting the one or two restaurants and hotels that service local industry and the tourist trade. It's the kind of town where the hotels have laser printed signs on the doors asking loggers to take off their muddy caulk boots before entering the lobby, a rough and ready town with the ever present mill or mine.

The road was the road; that's all. The unfortunate part of this is when the road does not distract, when the road goes for mile after mile with easy turns and nothing but the odd ranch house to force my attention, I get to thinking. Thinking is not always a good thing and on the road I often think about my marriage. Carla and I shared a love of road trips; we both loved the exploration of new places and unseen sights. Road trips were some of our best times; they were also some of our worst times as we fought over the cost of motels and meals.

With empty vacant hours, the easy road winding by, I think about the woman I once loved, and probably still do love in some way. Do we ever stop loving those we once loved? A scene on the road, a sight on the mountainside, a meadow demanding a picnic; I know she would have loved this drive. I think about what I did wrong, what I might have done differently. Could I have worked harder, been more patient, given more, waited longer for change to come? Why couldn't I make it work? Why was I such a bad husband, so poor at being the kind of loving, easy to live with man she wanted me to be?

There is the road. The road, the road, the road; leading me onward, carrying me upward into the empty hours. The empty hours are the worst hours.

Wednesday, 29 May 2013

Going North

I am on the road again, this time from Vancouver to Yellowknife where I will pick up my daughter Kate and return to Calgary. As you can likely surmise from this blog, I like to be on the road. It keeps my mind busy and helps me think of the many adventures and wonderful things that have happened to me as I have explored the back roads of this land.

Yesterday started with that kind of dreary, grey misery that is a chilled rainy spring day in Vancouver. The clouds were so heavy and low they clung to the North Shore mountains like damp wool. The rain was thick enough to be torrential, near monsoon. Yet into this Ricky and I plunged, down to our boat to get the last of readiness ready and to deliver it to Race Rocks Yacht Services for its annual bottom inspection. Ricky did this run on his own this year as there is no way I can get off the boat at Race Rocks. They lift the boat out of the water into a sling and the only egress is by walking off the pulpit while the boat hangs halfway up, near the edge of the boat yard wall.

It was Ricky's first time as skipper and he did well, guiding the boat out of Sewell's Marine, around Tyee Point, past Whytecliffe Park and into Eagle Harbour. Once the boat was on the hard we headed to have the truck serviced; I have put a lot of miles on my steel chariot in only 16 months. Serviced and ready, we headed out. I dropped Ricky off in Abbotsford and headed up the Fraser Canyon for Cache Creek.

The canyon road is another one of those amazing feats of engineering which I failed to truly appreciate the many times I drove it in my younger years. It is a thin band of pavement notched into the near vertical sides of the Fraser River canyon. This rip in the granite and shale mountains was cut by glaciers in the last ice age and has been beaten deeper down into the gorge by 10,000 and more freshet seasons of the roaring Fraser River.

The road winds and climbs, clinging to the edge of the mountains and sometimes going directly through them via tunnels with romantic names like Yale and Ferrabee and Alexandria, or landmark names like Boston Bar, Kanaka Bar or, one my my favourites, Hell's Gate. Hell's Gate is the narrowest point of the Fraser Canyon and for time immemorial blocked access to the upper Fraser from the lower Fraser. It demanded a road, so we built one, carved through the mountain by Chinese and Irish labourers in the early part of the 20th century.

Clearing the canyon brings you to Lytton, the place where the Thompson River meets the Fraser River. After that you head up the lower Thompson Valley and end up in Cache Creek. From here I get to decide. Go north, or go east? Today, I think north.

Tuesday, 28 May 2013

Root Cause Analysis

Does knowing the cause of ALS lead to a cure? If history is any reflection of the answer to this question, then the answer is "not very quickly". That's because this baffling disease is linked to so many other issues, to so many other potential triggers as to make it, to quote that great statesman Winston Churchill when asked about Russia, "a riddle wrapped in a mystery inside an enigma".

In August, 2011, the ALS world was put all aflutter with the new that a study by the Feinberg School of Medicine at Northwestern University had uncovered a common cause of all forms of ALS. The study found that the "basis of the disorder is a broken down protein recycling system in the neurons of the spinal cord and the brain."

"Feinberg scientists found the cause of ALS by discovering a protein, ubiquilin2, whose critical job is to recycle damaged or misfolded proteins in motor and cortical neurons and shuttle them off to be reprocessed."

The study further found that "ubiquilin2 isn't doing its job. As a result, the damaged proteins and ubiquilin2 loiter and accumulate in the motor neurons in the spinal cord and cortical and hippocampal neurons in the brain." In other words the proteins aren't working; they're just hanging around like unemployed waste transfer station workers.

There were articles heralding the potential for a cure and urgings from various quarters for new studies and research. Two years have passed since then and still no cure has been found. Still no treatments have been uncovered. Still no success with drugs and other therapies. This is not particularly surprising. In something as complex as neurodegenerative disease, a cure based on a single element is highly unlikely in a short period of time, nothing short of a miracle, that miracle we all pray for daily.

It is not enough to know that the protein recycling system is failing, there has to be a way to re-trigger the failed system. Researchers need to find out what causes the system to fail and how to link treatment to reversing that underlying cause. It's your basic root cause analysis, asking why after why after why.

On May 26, 2013, Stanford University School of Medicine released a study which "identified mutations in several new genes that might be associated with the development of spontaneously occurring cases of the neurodegenerative disease known as amyotrophic lateral sclerosis, or ALS." Please note the use of the word "might" in that statement. At a minimum this new discovery helps researchers look more closely and improve the efficiency of their research.

Once again researchers are narrowing the focus. Yet once again they need to dig deeper, further investigating the failed protein sequence that these genetic mutations can trigger and the amino acids that are critical in the functioning of these failed proteins. We have a cause and researchers are looking ever more deeply into the why behind that cause. It is still tantalizingly just beyond our grasp.

So we know, mostly, that it is likely a failed protein sequence and that protein sequence is linked to a specific random genetic mutation. We still need to discover why that gene mutates, why the process fails and how to re-trigger the process of recycling those failed proteins. There is yet more work to be done. We still don't actually know the "cause", just symptoms that make up this enigma, needing to be peeled away until the mystery is unwrapped and the riddle can be solved.

We need to ask "why" yet a few more times.

Monday, 27 May 2013

My Plan

In March 2012 my friend Juanita Thiessen died from pancreatic cancer. She was 52 years old. Juanita was a wonderful woman, kind with a ready laugh, easy going and devoted to her husband Gerald and her three children. Pancreatic cancer is another sneaky disease; people often go undiagnosed until the cancer is well advanced, in many cases leaving them with weeks or only a few months to live. This was the case with Juanita; she died shortly after her diagnosis.

When I compare ALS with something like Pancreatic Cancer, I consider myself lucky, especially after days like yesterday where I go the time to visit my children and grandchildren. Juanita did not get that opportunity. She did not get to meet any of her grandchildren, and while I may not get to meet all of mine I at least get to meet some of them.

Spending time with small children can be exhausting and exhilarating. It is a time filled with laughter, giggles, tickles and tales. Watching my grandchildren play, seeing them explore their new world and learn about how life works, this is the stuff that I have time to do. This is what Juanita never got to do.

This few weeks has been, and will be, very special to me. Yesterday it was time with my daughters, Meaghan and Mary, and their daughters Charlotte and Rose. Over the last few days it has been time with my son, working on our boat, preparing for the summer. In a couple of days I will head north to Yellowknife where I will pick up my daughter Kate and we will spend three days driving back to Calgary. These are the things I get to do because I have time. These are some of the things I may not have done were it not for ALS.

Having this illness is frustrating, difficult, maddening, aggravating, upsetting, demoralizing and all the other words you can imagine. Yet this disease caused me to write. This diseases causes me to spend time with my parents, my children, my grandchildren. This disease makes me see these moments for the special things that they are.

I may have a crappy disease, but I am lucky. I have time. I plan on using it as well as I can, to be with my family, my Mom and Ray, my children and grandchildren, as much as I can. I plan on loving them and those around me, as much as I can. ALS has focused my attention.

Sunday, 26 May 2013

Anger and Depression

I am in a good mood today. It is a nice day outside. My daughters are bringing their daughters to my Mom's place for a visit today. My son is here in Vancouver helping me get the boat organized. In a day or two I will head up to Yellowknife to see my other daughter. I am feeling productive.

Days are not always good like this one. Sometimes I just get depressed, and angry too. I have a fair bit to be angry about. I committed my life to a relationship that failed me. I ended up with a disease that has left me with nothing and I have to wait two years to die unless I commit suicide. I struggle to go out at during the day and at night and don't really know where to go regardless. My legs are useless, my arms are weak, my outlook shadowed; it's not a happy picture.

Those very things that spark anger in me also spark depression. Those two emotions are often wrapped up together, thrown into my bleak space wrapped in a ribbon of suffering. Despite my best efforts, I simply cannot keep these dark beasts at bay. Despite my best efforts the anger and depression find a way to seep in through the cracks and cuts in my emotional space.

Some days I just get one. Some days it's just the anger that hits me or just the depression that hits me. With anger I find it passes more quickly, like a fire burning hot and cooling fast. Depression is more pervasive, subtler, sneakier. It creeps over me without notice. Then, with no warning, I feel it's full weight as if I had a blanket smothering me. Anger is transient; depression is persistent.

What do I do with these two? How do I manage them, and me, as I go through this process?

The first step is to recognize these emotions and accept them as a normal part, not only of what I am going through, but of life in general. Each of us feels these feelings on some level or other on a regular basis. Everyone I have ever met has had "bad days" or has gotten irrationally angry. It just happens. In my case these normal feelings have something to chew on, a way to grow and fester. I just have to see them for what they are.

The next step is to realize that these are passing emotions. Just as clouds in the wind and waves on the ocean, these feelings will rise, crest, and pass. What I have to do is to allow myself the freedom to feel these feelings and then let them go. While I am in the throws of them, it seems like they will never leave. Inevitably they do; sometimes quickly and other times slowly, but always.

Finally, in those situations where I just feel overwhelmed by it all, I need to reach out, to let others know what I am feeling and how those feelings are impacting me. I can share the good feelings and just as importantly I can share the bad feelings. Sharing; that's how this blog helps me.

Saturday, 25 May 2013

If You Can't Say Something Nice...

I hung out wirh a couple of my buddies last night. They were so good to me. I have great, supportive friends. They help me and they reminded once again of the positive power of kind words.

Thumper was right. "If you can't say somethin' nice, don't say nuthin' at all". It is so much easier and simpler to share the light, the kindness in things, than it is to spread the darkness, at least for me. I have seen it so often over the years where people say something negative where it would be just as easy to say something positive, as if the only valid feedback was negative feedback, as if the only useful comment was critique.

Some people seem to live for spreading the darkness. Criticism, harsh words, unkind truths are their stock in trade. These living black holes of emotion seem to gain personal fulfillment from the negative. I think it is easier for them to bring someone down to where they are rather than lift themselves and others up. Being with and around these negative black holes can sap energy like a lightening rod to ground.

There is an insecurity in all of us, a sense of not being good enough. In some people that becomes a feeling that we need to pull others down, the feeling that it is not enough for us to succeed but all others must fail. Yet positive is so much better; spreading the light brings joy and uplifts so many. People know the bad stuff already; there is no need to spread that around. If you are afraid to face your bad stuff you will never be able to focus on the good stuff. If you focus on your worthiness, you will find yourself feeling an ever increasing sense of self-worth.

That insecurity, that lack of self-worth shows up in other ways. We become strident, terrified of being wrong, inflexible and unwilling to concede other points of view. We fail to listen, fail to consider other ideas. We resist change, demand intense control over our living space and emotional space, refuse to allow others in our lives to have the space they need. Our inflexibility makes us incapable; incapable of change, incapable of self-reflection, incapable of true love and kindness. We believe that if we can only make this iron-clad, unchanging world where we are always right, we can find some worth in ourselves.

Despite what you think you can't hide yourself in this iron-clad life; the real you comes out in your words and actions. As Abraham Lincoln famously said, "You can fool some of the people all of the time, and all of the people some of the time; but you can't fool all of the people all of the time." Eventually, despite your hard work at hiding yourself, you will show up. Life catches up with all of us.

Sometimes we cloak this urgent need to claw down those around us. We call it. "constructive criticism". There is no such thing as constructive criticism; there is just criticism. No amount of negative feedback can be deemed to be positive just because we want to cast it that way. Criticism is just criticism, plain and simple.

Here is an exercise. For today, just for one day, do your best to take every negative statement and recast it. Take every "can't" or "won't" or, my favourite, "shouldn't" and turn it into a "can" or "will". Find a positive way. Do the right thing. Say somethin' nice.

Friday, 24 May 2013

Hidden Costs

In a previous blog I wrote about the costs of ALS. This disease has a lot of hidden costs along with the highly visible costs associated with renovations to allow for a wheelchair and modifications to vehicles and all the other sundry things that crop up. Here are a few additional costs that you don't think about unless you face life in a wheelchair and a continuous loss of strength.

When we went to the boat, the first thing I noticed is that the engine needed servicing. So I called the Mercury shop at the docks. They asked if I could take the motor off and bring it up to them, something I have done almost every year for the last decade. This year I could not, so they would have to do it. It adds $100 or more to the cost of the service.

If you keep a boat in ocean waters, you know about the detritus that grows below the waterline. The nice clean lines of a boat become home to all kinds of sea creatures, especially muscles. This is true with my boat. Each year I would take the boat to Race Rocks Yacht Services where they would lift it out of the water at a cost of about $200 round trip. Then I would have them pressure wash it, a service included with the lift. At that point I would assess the boat and paint the bottom if required, something that would happen every other year or so. This year is a painting year but I cannot paint. So, for the first time ever, I am paying to have the boat bottom painted for an additional cost of about $400 or so.

As of now I can get on and off the boat with some effort. It occurred to me last night that my condition will deteriorate between now and the end of August. I will likely need some additional aids to getting on and off board. The best system will be a block and tackle over the boom attached to a bosun's chair. The boom will swing sideways over the dock and can be used to lift me in and out of the cabin too. The chair and tackle will likely cost about $300 - $400.

There are other things too but I am going to stop here. This more than $1,000 additional expenditure is simply because I can no longer function normally. It is a cost of having ALS, a hidden cost.

Thursday, 23 May 2013

On Board!

Yesterday was an important day and an exciting day. Yesterday was the day when my son and I tried getting me in and out of my sailboat, and in and out of the cabin. It was a difficult day and we worked hard at it. Ultimately we discovered a relatively easy way for me to get on the boat and into the cabin. Getting up out  of cabin and off the the boat represent more of a challenge.

The reason this is so important to me has to do with the losses in my life. If you know me well you know how much I love being on the water and in my boat. You know what the smell of salt and the sound of gulls triggers in my heart. When I die, it will be at sea and if not at sea, that is where my thoughts will be. I will be remembering the wonderful times with my children while cruising about the Gulf Islands or watching the fireworks on English Bay. I will be thinking about my family with me as we drifted down  Agamemnon Channel, breeze astern, summer sun gleaming off the top deck and eagles overhead. I will be at peace.

Getting on is relatively easy. The key is having the boat at an "alongside" tie where the boat is parallel with a dock wide enough for my wheelchair. Then I simply transfer sideways, manually pulling one leg over the gunwale of the cockpit and ultimately simply falling inboard for the remaining two inches onto to the cockpit seat. After that all I have to do is swing round into a sitting position and I am good to go.

Getting in the cabin is relatively easy as well. All I do is lift my legs over the lip of the hatchway and slide myself into a sitting position above the gangway ladder. My legs simply fall inboard and by dropping down to the next step on the ladder I am suddenly standing in the cabin. After that all I have to do is maneuver myself to the seats by the galley table and I am good to go.

Getting into the head is a challenge as I have to "walk" the three steps down the companionway into the forward hatchway area. I can do this now but I wonder how it will go a few months from now. We may have to get creative around using the head. That remains to be discovered and we have some ideas around how to resolve that problem.

Getting out is a greater challenge. By aligning myself with the gangway ladder I can reverse the process of getting onto the second highest step of the ladder. Then, using my arms, I can push myself up to the lip edge of the hatchway. From there I lift my legs up one more step on the ladder and force my derriere onto a bench board across the cockpit that rests on the cockpit benches on either side. After that non-trivial effort, I can pull my legs up and transfer myself onto the cockpit bench. The board will be useful in transferring from side to side in the cockpit as well.

The last step is getting off the boat. This is the most difficult. I have to sit on one cushion, then lift myself higher while transferring onto a bigger cushion. This conquest over weight and gravity eventually puts my rear end on the same level as the gunwale edge. With help I can then lift one leg so I straddle the gunwale and ultimately transfer sideways onto my wheelchair. We are going to get my power lifting seat from home and see if we can use it in someway to raise me up more easily. We are also looking into a block and tackle over the boom to see if we can use a system like that to help me.

I cannot do this alone. I could not do this without Ricky. We are set for July but I am not sure what will happen in August when he has to attend to other commitments. I will need additional crew. Any takers for August at sea?

Wednesday, 22 May 2013


I have known for a while that ALS was taking other muscles from me. When I was first at the ALS clinic the neurologist who saw me at that time, one of the five who have seen me so far, one of the five who have all concluded I have ALS, said that he thought there was some initial weakness in my hands. The medical assessment I provided for my divorce stated that the likely path of this disease for me was loss of my upper body and breathing muscles.

Over the last six months I have noticed issues with shortness of breath, especially with physical activity. I find myself coughing and feel consistent phlegm in my throat. These are early signs of loss of strength in my diaphragm and upper GI muscles. This loss of strength in my diaphragm will cause my breathing to weaken; this means fluid will eventually build up in my lungs causing the pneumonia that will likely end my life.

For now I get acid reflux, also known as Gastroesophageal Reflux Disease (GERD), particularly after a couple of glasses of scotch. It is such a shame because I really like a nice glass of scotch. People with ALS have a greater tendency towards GERD due to a weakening of the lower esophageal sphincter. This loss allows stomach acid to reflux into the esophagus and into the back of the throat. It also means there is a possibility that I could inhale stomach acid into my lungs. Mostly it's just plain uncomfortable

I am already seeing something called laryngospasm, a brief blockage of the airway. My soft palate seems to "block" my throat at times and I have trouble swallowing. I already have heartburn and some moderate pain in the pit of my stomach especially after eating. I find myself awakening at night coughing although I do not yet experience shortness of breath while resting. That just happens with activity like standing or putting on socks.

It looks like I am moving from the inconvenient, annoying phase of this disease to the challenging, uncomfortable stage. It is progressing down the expected path, if there really is an expected path for this random thief. I am two full years into ALS with two years expected ahead of me. This new phase will be a time of reduced activity, reduced diet, reduced options.

The losses continue. The ropes grow tighter. The choices diminish. The train gets closer.

Tuesday, 21 May 2013

A Matter Of Time

In May 2010, my father fell down in his garage and hit his head. He wondered what might be causing this as he had never fallen before and he was, he thought, pretty healthy. About 3 years earlier he had been diagnosed with mesothelioma but it didn't seem to be progressing, or so he thought. All in all, he just didn't know why he fell.

So he went to the doctors and they found a lump on his kidneys. After a fair bit of fussing around they determined he had cancer and it was spreading. Soon cancerous growths appeared on his lymph nodes and probably other places too.

My brother Adam and his wife Lisa gave up most of their summer that year caring for my Dad and her Mom. It was a rough time for them, flying back and forth from Louisiana almost constantly. I did what I could to help, as did my other brothers, but Adam carried most of the load.

Dad did his best to carry on. It was tough to watch him slide over the summer, getting thinner and weaker all along. We did things with him, shared time with him and sometimes just watched him sleep. We took him on road trips and fishing trips, all to ensure he could spend the days he had doing the things he wanted to do. Once again Adam took the lead on this but we all took part.

As Dad dwindled, he remained at home most of the time. Then, in early September, 2010, he was having trouble and Adam took him into the hospital. At that point the doctor said there was nothing to do, it was cancer and it was going to kill him. I will always remember my Dad's angry words at that point. "So we just give up." The doctor said "No. We accept that this is what is going to kill you."

It was a terrible thing to hear. My Dad did give up at that point and lasted only a week, never leaving the hospital again. It was hard to watch him die even knowing the inevitability of death. It may not have made any difference, knowing the reality of it or not knowing. But it is a reality, I knew he was dying. Something is going to kill each and every one of us. Life is a death sentence.

I miss my Dad. I miss others who have gone before me. Others will miss me when I go. It is the human condition. I hate the idea that I will die sooner than others but I have already lived longer than some, and longer than many in a historical context. As my brother, Adam, is wont to say, "Suffering is inevitable; misery is optional." I choose not to be miserable, insofar as I can; I accept that ALS is going to kill me.

It's just a matter of time.

Monday, 20 May 2013

The Pain Of Living; The Pain Of Dying

Some days it is almost impossible to detect, other days it rampages over me like a storm. “It” is the slow, creeping determinism of ALS. Each day is incrementally more difficult and what frightens me now most of all is the acceleration. A year ago I was climbing in and out of my truck, driving to the Arctic Circle, camping in Inuvik, fishing on the Beaufort Sea. A year ago I did not know I had ALS; I was blissfully unaware.

Six months ago I was walking with a cane, struggling with stairs, tiring easily. I could still drive my truck, and drive it I did, but getting in and out was a real challenge; I might add that it was a challenge that I failed at a few times. Six months ago I was still able to lift a turkey out of the oven, grab a few bottles of wine from the pantry, carry my laundry to and from the laundry room.

Now there are times when my fingers are too tired to type and my hands need a rest. I leave my wheelchair only to get into bed or into my chair in the living room. Soon even those things will be more than I can do. My hands shake; I cough; I find myself short of breath after almost every exertion.

The horrible, terrible, awful thing about this disease is that you get the pleasure of seeing it coming, knowing what is coming next, feeling the progression both slowly and quickly. This disease has the pacing down to an excruciating exactness, a timing designed to inflict maximum destruction on the body and spirit. It has an evil, debilitating, destructive approach and there is no release but to die.

I am not ready to give up yet but I am certain I will die. I do not yet want to depart from the land of the living but I will not complain with it comes time to cross the stygian stream. Dying will be a pain; dying will be a pleasure. I am at peace with either outcome, each and every day.

My friend Chris once said that “you will stay in a situation until the pain of leaving is less than the pain of staying”. He was talking about my marriage at that time. Little did he know that he was also talking about ALS. As long as the pain of ALS is less than the sadness of death, I will live. Once the pain of living is worse than the pain of dying, I will leave.

Today, I choose to live. When I choose not to live, please don’t judge me. It’s too painful some days.

Sunday, 19 May 2013

From Mountains to Coast

The drive from Calgary to the coast of BC is actually two separate drives, at least for me, taken over two days or perhaps even three if you want to wander. The first drive is through the Rockies. The second is up out of the Shuswap and North Thompson region into the Thompson Plateau, down through the Nicola Valley then piercing the Coastal Range, breaking out from Hope into the Fraser Valley.

These two drives are as different as can be despite their immediate proximity. The Rockies and its ranges represent the rugged terrain for which BC is famous. The Interior Plateau, shadowed from the rains by the Coastal range, is a drier, a sparser grass and thin forest plate between the mountains.

All of BC is amazing to me, wonderful in its diversity. This is a land of stunning variety, running from steep-sided granite slopes to wide open grasslands to lush, productive valleys. These upper plains and surrounding hills are covered in a thin forest coat of lodgepole pine, well spaced with spreads of bunch grass that cover the many meadows of the high country. It is the land of deer, moose, elk and bear. Ranchers range their cattle in these well logged woods and cougars use what trees they can to hide above, and leap down upon, their unsuspecting prey. This forest is a haven of life, and death.

My Dad and I used to hunt these plateaus, although it would be more realistic to say we used to explore them. We would traverse the logging roads cut into the hillsides, rising steep to one side and falling just as steeply on the other. Our day would be spent wandering with the vain hope that a deer, or perhaps a bear, might be foolish enough to step out onto the edge or maybe even the middle of the road, where shooting, recovery and loading would be made easier by the lack of forest slope.

Most days we would be unsuccessful, at least from the meat acquisition perspective. Yet all days were a success for us, scrambling along the back country pathways, seeing new things, discovering old and lost logging camps, abandoned towns and camping sites tucked away in the woods.

The Coquihalla Highway, rising from Kamloops and crossing over to Merrit, takes me over this plateau, transferring me to the Coastal Mountains. These rugged peaks, more distributed than the Rockies but just as massive, stand as a sentinel barrier covered thick with heavy evergreens, thatched beneath with bramble and bush prove the words "coastal rain forest" and "temperate jungle".

Then, as quickly as I rise to the land, the land falls away, dropping in steep decline down the Coquihalla River valley as that eponymous stream bursts its way into the Fraser River at Hope, mountains splitting at the root of the vast "V" of the delta, depositing me along with a million tons of earth at the top edge of the Fraser Valley where ten thousand years of silt laden freshet have made a farmland unparalleled.

I love this land, its span and scope. Around the world it is unequaled.

Saturday, 18 May 2013

Road Days

I am on the road again, driving once again that friendly highway, the known road from Calgary to Vancouver. Once again I see the masifs rise before me, slowly molding and slumping their way into the soft shouldered peaks that run to the coast, watching the emerald green water pound down from the icefields and glaciers, adding their writhe and foam to the arterials that snake their way through the mountains and down to the life giving sea, carrying battered logs and the loam that will one day make lush farmlands at the deltas of the coastline.

This is an easy road. I remember it and it asks for little but my attention and care. This grey string that connects the archipelago of habitation which makes this land of Canada, these lines of grey limber that plait together the fabric of our northern civilization run bent and swirled through mountain passes, straight across plains and meadows, leap up into summits and plunge down into valleys. They are beset with the inevitable sites of construction that mark our highways in this short season of thaw, like pods of dandelions in a garden pathway, denying our pace, demanding that we slow, defying us to pass. These are the roads that make up the Canadian conscience, the lines of connectivity from village to town to city; these are the lines that link us.

Driving is an easy thing for me. It asks for little and gives much; freedom, ease, stimulation. My tasks are a gentleness; my burden is light. I stow my wheelchair, lift myself into the cavernous bowels of my mechanized mammoth, and start the engine. I put it in drive. The heavy lifting is done by the automatic transmission and cruise control. All I need do is point it where I want it to go and mechanized nature takes its course. I turn on the music and run.

The road goes by, bounded by a coloured riot of audacious greens, competing for sun and space. Trees, grass, bush and bunch, all wanting the heat and light of spring, push out of every crack and cranny along the way. Hour after hour of rolling, twisting, straightening, mesmerizing highway, lulling me into forgetting who I am and what I am. Time passes, towns pass, cars pass and I am at ease.

For a glistening, shining moment I can forget, and feel, almost, well... normal.

Friday, 17 May 2013

Chores And Challenges

Once upon a time there was a man in a wheelchair. This man lived in a nice little apartment where all the doorways were wider than normal, where the counters were lower than normal and had room underneath so he could roll right up, where the bathroom had lift bars and extra room so he could roll in and out. This man felt very lucky and was happy to live on his own.

This fairy tale is not mine. My apartment is a standard apartment with standard counters and standard doors. The floor is carpeted and it is nearly impossible to roll up to the counters. To accommodate for this, I use my walker in the kitchen as a kind of rolling platform, allowing me to sit and yet still letting me reach the counters and cupboards.

Back when I could walk and stand, I did all my own chores. I washed my dishes, cleaned my counters, vacuumed the floors and did all the other little chores around the house. I am not a "house" kind of person; I prefer utilitarian, more reflective of my view that a house is just a place where you store your stuff. My expression has always been "it's not where I live, it's how I live". Nonetheless I know that if you own a home, you must maintain it.

I have always enjoyed some of the house kinds of things that had to be done. I loved working on the house, fixing decks and painting rooms, renovating and changing. Oddly enough I also used to love washing, drying and putting away the dishes. I made me feel accomplished to see an empty sink and a cupboard full of clean dishes. Except for nasty, dirty pots. Those I would do without; let 'em soak.

Unfortunately this is lost completely to me now. Not only do I no longer have a house, if I did I could not do these things. I can do the dishes somewhat but even that can be an exhaustion for me. On the other hand I wish I had hired a housekeeper long ago. I am not a fan of dusting or cleaning the bathroom.

All in all the loss of ability around my home has been a double edged sword. Losing the ability to do the things I like to do hurts me; having to hire someone to do the things I don't like to do helps me. Still, it is a sword I could have done without.

Thursday, 16 May 2013


Fasiculatons, or muscle twitches, are small, local, involuntary muscle contractions which are a common symptom of motor neuron disease. They are caused by a spontaneous depolarization of a lower motor neuron which in turn leads to a contraction of all of the skeletal muscle fibers within a single motor unit. In other words a lower neuron goes nuts and causes the related muscles to twitch. ALS is a form of motor neuron disease and fasiculations are an indicator for the clinical diagnosis.

Fasiculations do not mean you have ALS. In fact fasiculations are common in most people and are rarely bothersome. For those of us with ALS, fasiculations happen more often and can be quite bothersome. They are not only annoying but they can seriously interfere with quality of life.

I get fasiculations in most of my major muscle groups. They are quite common in my legs and I get them in my arms too. Sometimes my diaphram will get them and that is truly exciting. However the fasiculations that bother me the most, the ones that drive me nuts, are the ones I get in my upper eye lids.

As noted previously, fasiculations are not exclusive to people with ALS. They happen to all of us. The only difference is the quality and quantity of fasiculations for people with ALS. We get them more often and in more places. Most often we get them in areas of denervation but they happen all over the place.

For those of you without ALS, you can thank Benign Fasiculation Syndrome (BFS). This is a common condition related to weight, stress, heavy physical activity, drug reactions and any number of other ingredients. In fact, like ALS, the actual cause of BFS is unknown. Yet fasiculations are common.

This twitchy eyelid thing is a bugger. I don't know what starts it and I don't know what stops it. Sometimes if I hold my eyelid still the fasiculations seem to settle down. Other times nothing helps. The twitching starts and goes until it is over. Then I need to be patient for I know that the fasiculations always pass with time. The lower neurons settle down and all is well.

After that, I can rest. Well, sort of.

Wednesday, 15 May 2013

Life, Death and Buddhism; by Carol

Richard asked me to provide a guest spot on his blog after reading some of my thoughts and I am very happy to contribute how I can. My name is Carol, I am 50 something years young, I live in Scotland and I was diagnosed with ALS in February 2013. Here in the UK we call it MND or motor neurone disease. Now I have the disease I can trace symptoms as far back to at least June of 2012, and I wonder if some times of sickness many years in the past might have been due to ALS.

I had a wonderful career and life until the illness took hold in December and its effects have been devastating on me and are difficult to deal with. I was a team leader for one of the best oil consultancy companies in the UK. Now I am more or less housebound, disabled, feel sick and fatigued and have had to retire from my job. I live on my own but I have a wonderful dog to keep me company. The support forums for ALS have been great and there I came across Richard and his blog which has been an inspiration to me. We are not alone in this disease.

I noticed on Richard's blog a comment about a life being cut short through a tragedy and I felt I had to email Richard how I felt about that and death. Death is something we don't usually want to talk about, something we want to put to one side.  With a terminal illness like ALS it cant be put to one side. We can think that with this disease ALS/MND we have the worst deal. I'm not so sure. Dying is not easy however it comes.  

To have life cut short through a tragedy or accident is devastating for everyone. I think in my case I have time to wrap up loose ends, to say things to people I normally wouldn't, to pass on how I truly feel, to become a hero, to make amends, to leave this life well, to help others however I can. I recently learned of the death of one of my heroes in my professional career, a professor. I had known him for over 40 years. He died recently after a battle with cancer, which I can imagine must have been beyond endurance and painful. No I'm not sure that ALS/MND is worse than any other terminal illness.

I don't question why I am dying and I don't think 'what have I done to deserve this'?. There is sometimes a view that somehow we have done something wrong - to die - to get ill, somewhere we have sinned or abused our bodies. I don't see this, I don't feel this way. The simple fact is that everything that is born dies, from a tree, to an insect, to a human being, that is the way it is. I am Buddhist by the way. I came across Buddhism when I was very young. I picked up a book on it and it just made immediate sense to me, it seemed to talk to me about things directly and simply in a way that I could understand, that was rational. So I accept since I was born then I will die. The one follows the other, cause and effect in action.

When I was doing my PhD (I am a Dr. in science) a close friend of mine decided to become a Buddhist monk in a Buddhist monastery in England and there I came across some great people. I stayed in their community several times. I listened to one of my teachers on Buddhism again recently on YouTube (search: Ajahn Sumedho Death, is the talk I listened to) and it again struck me, to hear his voice again and to feel his wisdom.

Ajahn Sumedho's view is that life is a state of death, an inevitable process resulting from birth. In order to stop death and suffering one has to stop birth or rebirth in the first place. In his view this time we have is important as we have a chance to see the realities, to stop rebirth and further suffering. There I think is heaven or nirvana or transcendence. Oh I wish it were that simple!! Meanwhile I struggle with the realities, the effort to live, the effort to move and do basic things like eat!, of trying to deal with things, to stay brave and strong and simply to do the best I can.

Thank you Richard for your inspiring blog and for giving me an opportunity to speak on it. My best wishes and love to everyone, Carol

Tuesday, 14 May 2013


The news this morning is filled with the details of the tragic death of Hamilton, Ontario resident Tim Bosma. Tim was a young father and husband. He listed his truck for sale online. When two men came to test drive the truck, Tim went along, and never came back. His charred remains were found in a field not far from his home and his truck was found in a trailer at the home of the key suspect.

Tim was the perfect example of a good man. He worked hard, went to church, loved his wife and was active in his community. He was a good guy who cuddled with his young daughter, joked with his buddies and took his dog for rides in his truck just for the fun of it.

The key suspect in this case is Dellen Millard, a man described as "a very unassuming, humble person. He's intelligent, well-educated and financially well off", who has "never had a brush with the law, never been to jail." There is no logic behind this crime and I suspect there is much more to tell.

If you think having ALS is tough, think about Tim, who woke up one morning thinking his life would be full and wonderful, thinking about his future, his child, his wife, his dog, his home, his family. Think about Tim getting into that truck never knowing that this would be the last moment of his life, that his life would end suddenly and violently for no apparent cause or purpose.

This is a true tragedy. This is a true loss. Tim had no time to prepare, no chance to say goodbye to his children and wife, no opportunity to play with his dog that one last time. There is nothing good to say about Tim's loss, no words to describe the pain for Tim's family. His Mother had no chance to say she loved him. His Father had no chance to say goodbye. His wife will not even be able to touch his body one more time before it is laid in a grave.

Whether sudden or long, we all die. No death, disease or loss is fair. Yet I think Tim's death is so unfair, so much more tragic than mine will be.

Monday, 13 May 2013


I cry at the drop of a hat these days. Almost everything, every act of kindness, every story of pain, every moment of sadness or joy, can bring not just a tear but tears to my eyes. My emotions are very near the surface. It is as if the ALS was not just tearing away the protective layers of my nerves, exposing the raw nerve beneath, but was also tearing away the protective layers of my emotions, exposing the raw emotions beneath.

This is a part of ALS. My own mortality, my own debilitations, have made me very sensitive to the mortality and debilitations of others. The pain in my own heart, the destruction of my spirit, has made me more aware of the pain in the heart of others. With my own emotions so close to the surface, it is easier for me to identify with the emotions of others, especially joy and happiness.

I have always been an emotional man. I cry at movies; hell, sometimes I cry at TV shows and even the odd commercial. Mostly I cry when people are happy and loving, when people connect and become more. The analysts amongst you can puzzle over the why of this; I just know it’s true for me now more than ever.

What I find most interesting is that it is not the moments of sadness that most affect me. It is the moments of joy, the moments where love reaches out, where the human spirit is exalted, where we triumph over the banal, the ordinary, the futile and reach out to something greater than ourselves.

To steal a quote from a very old movie, “I cry for happy”. I take such great joy in the good things. I find such fulfillment in kindness and love. Perhaps because much of tomorrow has been taken from me, or perhaps it is the growth in my spiritual self compensating for the loss of my physical self. What I know is that I treasure even more that which I can see and feel today, the love and joy of this moment right now. When it is good, I am happy. Then the tears come.

I don’t cry for sad. I wonder why?

Sunday, 12 May 2013

Feeling Two Ways

A lot you you will have noticed the patterns in the style and content of my blog entries. When I am in a good space, my blog entries are light and easy. When I have nothing to say, my blog entries are generally vapid and listless. When I am struggling I often write about my condition and the impact of ALS on my life. Contemplation begets contemplative, and so on.

Today I have a lot of different feelings. I am having what I used to call “a bad leg day” except now that term covers most of my body. My shoulders and arms hurt, I’ve been coughing a lot the last few days, I am tired despite having slept well last night. Yet I want to be up and about and active and alive.

Also today I have the split feelings of wanting to stay in Cuba for a few more days and wanting to go home today. I like it here. The hotel staff are wonderful to me and I am really enjoying my time here. Yet I also want to go home. I miss the “normalcy” of my life at home, my own kitchen, my own coffee maker, my own bed.

The apartment is well setup for me and it takes less energy for daily living. Here I have to wheel everywhere, to dinner, for coffee, for lunch. Even the Internet is in a small space at the end of the hotel and there is no ramp so I have to get help to get up the single step. At home, everything is in its place; here, everything is someplace else.

In reality much of my emotional space is a duality. Newton’s First Law of Physics says “For every action, there is an equal and opposite reaction.” Richard’s First Law of Emotion says “For every feeling there is an equal and opposite feeling… mostly.”

I am looking forward to going home; I am sad about leaving. I want help; I want to be independent. I want to love and be loved; I don’t want someone else to suffer from this disease too. I want to explore the world; I want to be safe at home. I want to work and be productive; I want to relax and enjoy my life.

I want to live; I want to die. Which is it? Both, I suppose.

Saturday, 11 May 2013


Yesterday I went to Havana. I was supposed to go the day before but the car and driver that I had lined up failed to show up. There are any number of factors that might have caused this no-show. He may have misunderstood the time or day for the trip. He may have decided that it wasn’t worth it for him. He may have gotten a better offer from someone else. All of these things are possible; the only thing I know for sure is he didn’t show.

When the driver did not show, I asked the hotel management for help in arranging something. The price went up, from 90 CUC to 120 CUC however may package now included car, driver and a very pretty young translator/tour guide. It seemed like the right thing to do, so I did it.

Rather than write about Havana here, I am going to write a longer article about it when I get back. I want to do some research and get some facts straight before spouting off. Spouting off is what this blog is about.

It was a long day in Havana. We left at 8:00 AM and got back at 5:00 PM. The drive there and back is about two hours each way so we spent 5 hours in the city, looking around, shopping for cigars and stopping for lunch and coffee. On my return, I had a nap from 5:00 PM, after sleeping the last hour in the car too, until 8:00 PM.

After I awoke and had the usual buffet fair at the hotel, I went to the “Beach Party” advertised as the evening’s entertainment. It was a loud, energetic affair where hotel staff shot soap suds and water over the crowd on the beach while they played loud disco music. People were dancing and soaping up and dancing and rinsing down. It was fun to watch.

In the midst of all of this I met a young lady not getting wet or soapy. I asked why she wasn't taking part and she said, in broken English, that she didn’t want to get wet but wanted to go dancing in Varadero instead. Apparently she was visiting from Milan and those who know me know how much I like that part of Italy. I said “let’s go”, so we grabbed a cab and went into town. It was fun!

I think I might be recovering my sense of adventure.

Friday, 10 May 2013


I have noticed another change, only this time it’s not physical. I am becoming more cautious, more risk averse, more fearful. It’s not that I am a particularly brave man, but I have never thought of myself as fearful.  Discretion has often been the better part of my valour. Yet I ran away today, of all things, from a rain squall. Well, I wheeled away.

I struggle with the fact that I responded to the squall in this way. Those of you who know me well know that a little thing like a storm doesn’t usually cause me to flee. Certainly I would be frightened if I was out in my boat; that’s just normal and reasonable. But I have never run from danger before. I have often walked from it, avoided it, stayed away from it; not often have I run, rarely, perhaps never. And a little rain squall? I like weather.

It was an awful moment for me, realizing that I had become that frightened man in the wheelchair, desperately fleeing indoors because a squall was coming through. The man I was would simply have let the rain fall, let the wind blow, and thrilled in the energy of the storm. The me of days gone would have let the raindrops splash off my cheeks, let the wind buffet me, let the clouds drive on through, daring the storm to leave a mark on me. I used to love this kind of weather.

I saw the black clouds gathering over the sea, rolling towards the beach, the squall driving the ocean surge ahead of it, the waves smashing the beach and foaming at the shoreline. This was a classic ocean squall, all bluster and boom, soon to pass. Rather than simply wait it out I made the wheelchair equivalent of a mad dash from the beach bar where I was reading, up to the main hotel, hiding indoors as if the rain might damage me.

I have begun to notice this more and more, that I am challenged by the risks of living, the dangers that come with daily activity. I worry about whether or not I can open a door, or if a location has stairs, or where the impediments will be. I have gone from carefree to careful, from risk managing to risk avoiding. I have gone from brave to cautious. I have gone from strong to weak, from fearless to frightened.

The dash exhausted me; I rolled into the cafe and had a coffee, reading and awaiting the slow muscular recovery that I now need with virtually any exertion. Then I waited for the rain to fall, wondering why I ran, or rather wheeled, away. As I sat there the clouds passed, the sky cleared. It didn't rain.

Now I wonder, am I going from living with ALS to dying from it?

Thursday, 9 May 2013

It’s All Random

It’s funny how quickly we as human beings can adjust and settle into a new routine. We seem to need routine, the constancy and security of doing the same things each day, somehow expecting that the continuance of pattern will protect us against the unexpected.

This belief we have that if we do the same thing daily it will make us safe is pointless, yet we do it even in the face of evidence to the contrary. We are comforted in our routine; we feel like we are in control of our lives and our world when we shape our patterns thusly.

The reality is that we can never expect today to be like yesterday, we have no cause to believe that tomorrow will be safer if we stick to our established patterns. No matter what we do, no matter how hard we try, we cannot change tomorrow or yesterday. We can barely change what we do today given the multitude of random elements that can change the course, not only of our history but of the history of all mankind. Control is a chimera; routine is a self-comforting hubris.

After only three days of “vacationing”, I have returned to my routine, rising at around 8:00 AM, having my morning coffee, typing at this infernal keyboard, and not even three full days at that. If my disease has taught me anything it is that no amount of human intervention, no exertions on my part, no routine; nothing I do or will ever do can change the randomness of life and death. Yet here I am in routine, comforted.

I am not a fatalist by any stretch of the imagination. It’s just that I continue to be humbled by the minisculity of that which I can do when faced with the panoply of randomness that surrounds me, my efforts are akin to the buzzing of a mosquito against the ambient roar of a jet engine.

Today I have arranged for a car and drive to take me into Havana and to show me a bit of Cuba. Will he show up? I don’t know; it is, after all, Cuba. Where will we go? I don’t know; I am, after all, a visitor to this place. Will I be safe? No; safety doesn’t exist no matter how much routine we put in place. All we can ever hope to do is limit the risk; we can never escape it.

Randomness abounds; it gets us all sooner or later. It’s just a matter of time.

Wednesday, 8 May 2013

Creeping Cynicism

This staying up all night nonsense has got to stop! I did the same thing last night as I did the night before, and I slept in today until noon. Even in retirement in mode this is very unlike me.

Actually last night was not as much fun as it could have been. Certainly the entertainment value was there. The locals were dancing in the streets, the rhythm of the salsa dance and the beat of the Cuban drums was certainly enervating. Yet last night I found myself looking around at the crowd, the people, and started thinking about things. This is never good for me.

I watched the men and women of all ages dance in the street, laughing, moving to the beat, seemingly having fun. I noted that it wasn’t just the youngsters although there were plenty of them. I also noticed that the dancing was the way people meet other people here in Varadero. And I noticed I was not dancing, something I might have done had I working legs.

It was a different kind of a crowd too. Last night there were a great many Canadians, sadly many of them drunk. Those representing our wonderful country were not doing it well, unless getting drunk is a good representation of Canadians.

The other thing I noticed was the size difference between Canadians and most of the rest of those in the crowd. We, like our neighbours to the south, are an obese nation. It is a tragedy, especially a health tragedy in the making.

On the other hand many Cubans have told me that they like the Canadians as opposed to the Russians or Europeans. I suspect, though, that the statement is reversed when they are talking with a Russian or European.  I suspect it may be a case of “follow the money”.

By the way, for those of you who think of Cuba as a cheap vacation, think again. The Cuban government has designated the region around Varadero as a “tourist zone”. They’ve created a completed economy based on tourism dollars, a good thing for those Cubans working here. However that economy is a relatively expensive one.

The cost of most things is pretty much the same as the cost at home and in some cases more. A night out here in Varadero costs about the same as a night out in Calgary. Only the rum is cheaper, and that not by much. As with all tourism economies, much of what is here is intended to extract maximum tourism dollars. It’s just the nature of business and money, like pretty much everything else in life.

Am I becoming too much of a cynic?

Tuesday, 7 May 2013

Energy For Living

It is my first full day in Cuba, and more importantly my first full night. This morning I awoke without knowing the time of day. It was with a purpose that I left my cell phone at home; it won’t work in Cuba. I also left my watch at home; I really don’t need to know what time it is here. I am, after all, on vacation although from what I am not sure. It looks like the rhythm of my days here is falling into place very quickly.

I wake late; both days so far I have missed the breakfast buffet even though it is open until 11:00 AM. No matter, I don’t need the extra calories these days. Actually I supplant one sort with another, having a latte at the 24 hour bar and stuffing a croissant into my mouth while the hot, sweet coffee winds its way into my complaining stomach.

Next, Internet time. There is no Internet in the rooms in the hotel. Instead you come to the Internet Salon where you pay about $8 / hour to go online. I am writing this offline and will simply post it when I am done. I can check email and post to my blog. The view from the window is pure tropical hotel; palm trees wafting in a light ocean breeze, bright sun, manicured gardens with pathways leading from pool to bar to pool to restaurant and all round to the bar again. From the main courtyard it is a short roll down to the ocean restaurant, the Playa Del Sol Cabana. Yesterday I sat, near the sea, listening to the waves and reading on of the five books I brought along for this trip. This works for a routine; I can take it.

The day went by in a slow laze with a long nap that stretched into 8:00 PM. I went down to the buffet for a late dinner then went into Varadero for a bit of night life. After a short cab ride from the hotel the cabbie deposited me at the “Calle 62” bar where I spent about half the evening drinking Mojito’s and watching the salsa dancers of all shapes, forms and sizes writhe and wend their way around the dance floor. Plus there was entertainment too!

I met a couple of very nice young ladies and at about midnight we all decided to go up to the Club Havana, a night club up the street. It was tons of fun and I even got into some chair dancing with the girls. The girls I was with decided to leave and I was about to as well when I was approached by a woman walking with a cane. She was from Belgium, Ypres to be precise, and said she was inspired when she saw that I could have fun, even in my wheelchair. So I stayed, she stayed, and we chair/cane danced the night away.

In the midst of all of this frivolity, out of the blue, a couple of men came over and shook my hand. I had no idea why! When I asked what that was for, one of them said “we think it is amazing that you are out here, living life and having fun”. These men did not know why I was in the wheelchair. They did not know what my disease or condition was nor did they really care. They were simply saying that my energy for living was uplifting to them.

That was the best part of the evening; that and the chair dancing.

Monday, 6 May 2013

Travel Challenges

Well, my trip did not start of auspiciously. If anything it started with a couple of major letdowns. On the other hand, I am in Cuba and about to start a week of relaxation combined with adventure. How can that be bad?

Yesterday Ricky dropped me off at the airport and did his usual yeoman's job of ensuring I arrived at the gate, luggage and wheelchair at the ready. The airline, Sunwing, checked me in and escorted me to the gate. So far so good. The first real indication of how they make money on these trips came when I boarded the plane. In order to maximize passenger loads, they squeeze in every row of seats possible. There was sufficient legroom for a small child.

The flight crew took one look at me and my legs, dead as they are, and said "this won't do". They couldn't move me to another row as many people pre-purchased seats with better legroom. Now I know why, and now I know how Sunwing makes a few extra dollars. So what the crew did was relocate the other two people in my row to an empty row at the back of the plane. This allowed me to swing my legs sideways and, more importantly, to stretch them during the flight.

The flight itself was uneventful; arrival in Varadero no so much. When I boarded the plane, the gate crew took my wheelchair and put it in luggage. When I deplaned the wheelchair, which went in the plane last, came out of the luggage last. How does that happen? Maybe it was a good thing since the gate crew took about 30 minutes to arrive at the plane with an airport wheelchair. But we made it out, finally.

Then it got even more interesting. Despite several emails and messages back and forth, the good folks at Sunwing had forgotten to mention to their Varadero associate that I was in a wheelchair; his report simply said I might need "assistance". So when he presented me to the bus, with its four steep and deep stairs, we were both in trouble. I looked at him; he looked at me; we discussed, and discussed, and discussed. In the end I took a cab to my hotel. As the agent said, "it is the only way."

When I arrived at the hotel, Sunwing had taken note of my challenges and decided that I really did not need the oceanview room I had booked and paid extra for. Instead they put me in one of the two small rooms with handicap rails in the bathroom. The bathroom is accessible; the rest of the room is almost impossible.

Fortunately I talked with the hotel manager this morning and she was very understanding. Noboby can do anything about the $40 cab ride; that's mine. On the other hand the hotel, which by now has sold out every ocean view room, has provided me with a suite that sort of overlooks the ocean.

The site itself is lovely; all palm trees and plants and flowers. I didn't sleep much last night having finally gotten into my room at around 4:00 AM EST. So I am a bit tired today, too tired to go into much more detail. Suffice it to say that I am starting to relax. I have a nice room, I found the bar, and I am about to go exploring.

I'll be alright, won't I?

Sunday, 5 May 2013

Packing For Cuba

I am packing to go to Cuba. I leave this evening, placing the care of my home in the safe hands of my 22 year old son. There are a few things that  make me nervous about this trip, but at least that's not one of them. I am sure he will take care of things; plus, Rosa will be in on Friday to tidy up.

People give an awful lot of advice about packing for Cuba. The say "take extra clothes and give them away". Isn't that something I can do here at home? They say "take soap, toothpaste, aspirin and give them away"; apparently these kinds of things are tough to get in Cuba thanks to the US embargo. They say "take small toys and candy and give them away"; apparently the children get short-changed on toys and tooth decay.

The reality is that Cuba is a limited economy, where things that we take for granted each and every day are hard to come by. Car parts, a diverse food supply, over the counter medications; all these things and more cannot be easily gained in Cuba. This does not mean the people are poor. Nobody starves in Cuba, nobody lacks medical care in Cuba, nobody goes uneducated through lack of funding in Cuba.

As I understand it the limitations in Cuba are all based on access to markets, something the US had limited for Cuba. They simply cannot get supply in many things. On the other hand I am told there is ample housing, ample food though lacking in variety, ample schooling. People make very low incomes but have very little to pay for. Most of the basics of life are subsidized; the primary expenditures people make are for things above subsistence level.

There are some areas where I am concerned, mostly around wheelchair access and travelling alone in my condition. I know I will need to use cabs instead of buses. The tour operators assure me that the buildings are all accessible however they also say that none of the rooms is "wheelchair friendly". There are no grab bars in the bathrooms and no wheel-in showers. I am hoping I can get a chair for the shower at a minimum. It could be interesting.

Another area of concern is the simple fact of travelling alone. There are some areas where I need help, such as handling food trays and drinks. I am told that I can get help with these things from the hotel staff but my experience in the Caribbean and Mexico have taught me that the staff in most establishments are not highly motivated to help. It could be interesting.

On the other hand, I am travelling. It's supposed to be interesting. Now all I have to do is pack.

Saturday, 4 May 2013

Fat 'n Happy

I'm fat. There, I said it. I admit it. I am gaining weight and it's all around my belly. My inner Buddha is fast becoming my outer self. My waistline is out of control, expanding without restraint. Isn't that the first step, admitting that you are out of control?

When I was diagnosed I had been on a healthy eating kick for more than 18 months. Prior to my accident in the summer of 2011, I had been gaining weight for some time and was very heavy, obese. I was not morbidly obese, the kind of food planet that you see double plating at the Golden Corral. I was just plain large, very large, double extra large. Okay I was verging on food planet, weighing in at about 255 or 260.

After dropping the motor on myself I thought that my weight was part of the problem. So I changed my diet, dropped processed foods where possible, stayed away from starches and grains, focused on greens and proteins. My weight dropped rapidly from a likely high of 260 down to a low of 215. My goal was 200 pounds and my plan was to keep pushing after that. Then came November 23, 2012.

After my diagnosis I said "To hell with the diet; eat what you want. What's the worst that could happen?" I was aware that ALS patients generally lose weight. At the ALS clinic the provide nutritional and dietary advice to ensure you keep you weight up. I was doing that on my own and I may be the only ALS patient in history to die morbidly obese!

So I am gaining weight. There are a few factors that impact this. First of all, I can no longer do active exercise. My muscles in my legs are gone and the muscles in my arms are weakening. So no matter what I do, I cannot "burn off the calories".

Secondly, the increase in my metabolic rate due to ALS is not sufficient to burn off the limited calories I take in. Even though I try, my appetite has lessened substantially over the last few months. I simply cannot eat what I used to eat. Yet due to my diet these limited calories still sing "Shall We Gather At His Waistline", dedicating themselves to morphing me into Jaba the Hut. Thirdly, it's probably related to my highly successful beer and nacho diet. Let's face it, I am eating things that, in the absence of exercise, will make me fatter and drinking things like Rum and Coke that won't help at all.

Now the moment of truth. Do I care? Well, in fact I do, a little bit. I don't like looking heavy. I don't like lifting this extra weight. Will I do anything about it. No. Why bother? ALS will look after that for me.

Friday, 3 May 2013

Never Argue, Never Agree

Years ago when I was teaching salespeople, I used to talk about "objections". In sales an objection is a roadblock customers throw up in the process. Often it's not really an objection at all, but a lack of understanding about the product or process in question. My guiding rule was "never argue, never agree".

Never argue is simple to understand. When someone raises an objection they are telling you what they think. If you argue you are minimizing their point of view. How can you gain a commitment from someone when at the same time you are diminishing their thoughts and ideas? How can you build agreement while denying validity? Rather than argue, seek to understand.

Never agree is more complex. Basically it comes down to this. In as much as you must learn to respect that other persons point of view, they must also see that you respect your own point of view and will not abandon it at the first push back. The person on the other end of the conversation needs to know that you are willing to stand behind your opinions and ideas and will not attempt to succor favour by easy acquiescence. It's mostly about building confidence and trust.

So how do you find the bridge through this conundrum? How do you build commitment without arguing or agreeing? First of all, you listen. You discover what the other person wants or needs and you find ways to help them get it, preferably with what you have to offer. Then you seek common ground, a compromise way where both parties get what they need.

Life is like that too, all about finding common ground, places to agree. It took me a long time to learn that judging another person, or judging their position, is a poor way to build relationships. It took me a long time to learn that you simply have to accept people where they are and how they are, then build from there. It took me a long time to learn that there is always common ground.

The problem is that both people have to see that common ground and work towards building the bridge where you can meet, respecting both people and allowing both parties feel successful. Both have to want a win/win outcome. If one person wins all the time then eventually both people will find themselves losing. When there is imbalance, neither wins.

Most often this happens when one or both parties in the deal see winning as more important than finding common ground. I see this in business and in life, where one or both persons see their side as having more value, being "better", or "right". Except in rare cases, there is no "better" or "right", there is only "different". You have to work to find the bridge between different and common ground.

Never argue, never agree. Listen, learn, build. Look for common ground. Win/win; it all seems so simple, doesn't it?

Thursday, 2 May 2013

Praying For A Miracle

I want to continue on the post from Anonymous, this hope for a (sic) "miricle". What if a miracle happens? What if I woke up today and was suddenly cured, free of this disease? It's not likely, but what if? Well... it would be wonderful.

I don't really think that way; I am far too pragmatic a person to see life in terms of the extremely unlikely, far too realistic about what can happen and how likely it is to happen. In my work life I would manage risk by looking at both the impact of an event, in this case very high, and the probability of an event, in this case very low. The likelihood of this miracle is so low that it would be simply a waste of emotional effort to focus on it for more than a micro-moment.

I also think about all the other people with ALS. Don't they deserve a miracle too? What about the 27 year old single mother of two, struggling to know her small children before she dies? What about the 16 year old boy in Japan facing the reality that he will almost certainly never grow to have a family, experience a career, see the world? What about the many men and women around the world whom I have met online, suffering from this awful illness? Don't these people deserve a miracle more than me?

If you really want to pray for a miracle, pray for the miracle of modern medical science. Pray that the hard working researchers, doctors, nurses, technicians and specialists can somehow stumble across the cause of this disease or create a wonder drug to slow, maybe even stop, the progression of this disease. Pray for funding, investment, support networks. Say a prayer of thanks for what we have now and the support system that is in place. Then put your money where your mouth is and make a donation.

Every morning I get up and pray, momentarily, for a miracle for me. Yet this prayer is really not the one that fills my day.The miracle I pray for is a miracle that serves all ALS patients, a miracle that helps not just me but every person afflicted with this dreadful disease, this pernicious pestilence. Then I go on to pray for the more immediate things. I pray that I can get up; some days this is not so easy. I pray that I can make it to the bathroom, disrobe and get to the toilet before it's too late; some days are good, others not so much. I pray that I have a good day, that something nice happens. I pray that someone will come into my life and share what remains of it with me.

There are lots of other things I pray for, and lots of other people praying for me. Mostly, I just pray for the grace and dignity to get through today; I pray for the now, not the never. Living another day, supported, cared for, helped; this is the real miracle.

Wednesday, 1 May 2013


Anonymous raises more questions. The latest is "How about salvation and a hope for eternal life? How about a hope for a (sic) miricle?" Both of these are interesting questions in that they assume a belief structure. First and foremost, those who know me well know I am Christian and believe in God. It may not be the kind of Christian belief structure Anonymous has, but it is one that works for me.

So how about salvation and a hope for eternal life? Too late. I am already saved; His salvation is mine. As to a hope for eternal life, this whole premise is predicated not on Biblical pronouncement but on interpretations of very limited coverage in the Bible, often used to manipulate the uneducated or those unwilling to accept that they just don't know. In fact, the Bible reveals very few concrete details about heaven, the afterlife and what happens when we die.

What the Bible does say about death and the afterlife is mostly drawn not from the words of Jesus but from the Apostle Paul. He wrote to the Corinthians about death, saying "Then, when our dying bodies have been transformed into bodies that will never die, this Scripture will be fulfilled: 'Death is swallowed up in victory. O death, where is your victory? O death, where is your sting?' For sin is the sting that results in death, and the law gives sin its power. But thank God! He gives us victory over sin and death through our Lord Jesus Christ." (1 Corinthians 15:54-57) Remember, these are not the words of Jesus, but the words of Paul attempting to interpret what Jesus had to say about life after death.

Perhaps the clearest statement from Jesus about eternal life comes in the Gospel of John; "Do not let your hearts be troubled. Trust in God; trust also in me. In my Father's house are many rooms; if it were not so, I would have told you. I am going there to prepare a place for you. And if I go and prepare a place for you, I will come back and take you to be with me that you also may be where I am." (John 14:1-3 ) There are several other passages in the New Testament that offer comments from Jesus on "life eternal", mostly around the need to believe and trust in God.

The simple truth is that none of us really knows what happens when we die. There is no documentation, no testamentary evidence, no communication of any sort that tells us what happens. As far as we know, when we die, we just cease to exist.

As for me, I am not afraid of death. The dying part is easy. It's the living part that is hard. This disease is tough to live with, slow in progression, debilitating, humiliating and frustrating. If I want to be saved, it is not from death but from this kind of life. Everybody dies. Me too. I am just keeping track, very publicly, of the process. Death will be my salvation.

As to a (sic) "miricle", I have a few opinions on that too, but not today.