Tuesday, December 15, 2015

Week Three Goes Nowhere Near According To Plan


One thing I have learned in my lifetime of exposure to medicine is that the old cliche about it being more art than science isn't quite right. There is loads of science, constantly shifting and evolving science, and there is also lots of art rooted in experience, judgement and a mix of expectation on the part of the doctors and the patients. And these two elements are all wrapped up in the unknowable, how the individual in question, both the conscious being with a name and an identity and that being's body, are going to react to any given experience, any given treatment. 

There are always hitches in a plan...Robbie Burns knew that ('the best laid schemes of mice and men'), philosophers and theologians know that ('from your mouth to God's ear'.., 'Man plans, God laughs,') But I am a relatively optimistic individual and I fully expected that the plan for tackling my cancer would stay on course at least for the first half, but not so.

When the options were laid out during the oncology consult, the doctors were concerned that the option that involved months of chemo might not be compatible with my immune system. Well given that my immune system, or the white blood cell component of my immune system, doesn't seemed to have coped well with two weeks of chemo-radiation, I can at least conclude that they were right about that. 

Measuring things is complicated. On Monday, after having blood work down, one of the pharmacists, explained that one of my counts was at .9 and that they were really uncomfortable proceeding with chemo when a white blood count was lower than 1.5. So no chemo for me this week. I have to admit I immediately conjured up the image of the Soup Nazi in Seinfeld telling Elaine, 'No soup for you'. It was a blow, I am in the chemo waiting room surrounded by all kinds of people waiting to get on with being treated and listening to a very kind pharmacist explain that we just can't go ahead this week gets me down. 

See, I have been doing relatively well with the chemo. Other than fatigue, none of the expected side effects have been occurring. I just imagined everything was going according to schedule. What I now know is that wiping out the immune system is one of those intended-unintended consequences of chemotherapy and when you combine chemo and radiation the possibilities are increased.

What most bummed me out about my conversation with the pharmacist was her response to my question: "so what do I do to boost my white blood count?" She looked at me and replied, there is nothing I could do. ( There are things that can be done apparently but those things are out of my control.) I hate these types of things being out of my control. ( I know, I know...worry about the things that are in your control....yada yada yada)

So this week, no chemo but the radiation marches on. Also this week, consultations with my oncologists about how we get past this roadblock. As I said, I am an optimist. I do believe that, and I have good reason to believe that this is simply a curve in the road, a google maps snafu if you will.

The science is still there, the art and the best judgments that make up the focus of medicine are clearly a bit more of a fudge this week.  

Sunday, December 6, 2015

One Week Done...

In about 12 hours I start my second week of chemo/radiation therapy.

Week one went well, all things considered. All things considered of course include the pumping of powerful chemicals into my body, getting bombarded by radiation every day and spending two hours a day driving to and from the Juravinski Cancer Centre in Hamilton. It is not quite as wearing as it sounds, for me, but it is much much more boring than it sounds. The actual process of chemo infusion and radiation bombardment lacks real observable impact. You lay there, you sit there. Things are done to you but you are at the moment of it happening largely physically unaware that it is happening. Mentally, you are very aware.

People say to me, you look good. I think they are afraid that they will find me wasting away, gaunt, sickly looking and, for most part, none of that is the case. A couple of weeks ago I said to a friend, who had remarked that I looked good, you know if it wasn't for the swallowing thing, I wouldn't know I was sick. That's not quite true but the swallowing thing is the key indicator.

What I mean by swallowing is that it is very hard. At the moment, it is better than it was thanks to the three brachytherapy treatments I had before starting the real treatment. Before that, for a time, I could barely swallow and every bite threatened to make me gag. Now, the threat remains but I gag less and less and can get some food down. My oncologists, my nutritionist, tell me that it could get worse, swallowing could become an increasing problem as the esophagus become irritated by the treatment.

It is more than just swallowing. Eating is a true chore and the taste of food no longer brings any pleasure. The combination of those two things means eating is something I would seriously rather not do. My doctors see this as a real problem. My weight can not change during the chemo-radiation. Everything is calculated on weight and body dimensions. For my weight to change is to throw everything into a tizzy. I have never been lectured as much about anything as I have been lectured in the last two weeks about my weight staying the same. The oncology team also stress that food is a problem for all cancer patients because the cancer tumours emit chemicals into the blood system that decrease appetite.

On Thursday, we met with the nutritionist on the team taking care of me. She believes and insists that I need to eat an insane amount of food, with an equally insane proportion of protein to stay right for the chemo-radiation and to be ready for surgery in the winter. It almost makes me nauseous to contemplate the food she wants and needs me to eat.

Finding things to eat is a challenge. Fish is great, beef not so much. Eggs work. Smoothies laced with whey powder are filling and really help with the protein quota. The staple of the aged, Ensure, I can handle. Coffee is no longer a true pleasure. Beer lacks taste. My subconscious seems to crave Cheetos and my conscious mind thinks my subconscious is an idiot. I have to eat standing up, I am embarrassed to eat in public. I never know in advance what will cause me to choke, gag, throw up. Being told that at the moment my eating is pretty good but it might worsen down the road frankly scares me. Friends knowing what we are going through have been overwhelmingly generous bringing soups, puddings, juices...even a couple of low cost cases of Ensure. It has blown me and Debi away and has seriously eased the burden she is carrying in trying to make sure I can and do eat.

When you are sick, when you are ill, you learn truly interesting things about yourself. You learn about limits, you wrestle with inadequacies and with personal disappointments. I have done this in the past and often surprised myself. This wrestling with food is making me confront issues of desire, satiety, need, want and choice. This is new and this is perplexing.

What isn't new is my understanding that some things just need to be done and sometimes you just need to do the things that need to be done.

Debi tells me I have one job. I have to beat this thing. It is the work I have taken on. And I will do my job. I just never realized doing my one job would mean finding a way to eat as if I mean it.

    

Thursday, November 26, 2015

Changing the Name of the Blog, the Road Map

It is three weeks since I was told I have cancer and the three weeks have been an emotional roller coaster and a real introduction into a world I was only vaguely aware of. The corner of the universe that is assigned to cancer patients, their families and the people who treat them is much larger than I had imagined, much more varied and complicated than I'd ever expected and oddly an almost secret club. The number of lives that have been touched by cancer, the percentage of the population that has coped with or is coping with cancer and its impact is layered, wide and at times scary. On one hand, I know this, I read news accounts, see statistics, read mortality and illness tables. On the other hand, looking around the pharmacy, the massive chemotherapy waiting area and the radiation labs and suites in Hamilton's Juravinski Cancer Centre where I being treated, I am struck repeatedly by how broad the swath, how hard the toll, how complete the damage of the diagnosis and the treatment really is. 

I am truly coming to fully understand the expression, "The Kindness of Strangers." Getting a cancer diagnosis can give you real insight into who you are and who the people around you are. I am overwhelmed by how much love and encouragement people have offered and communicated, I am occasionally moved to tears by the completely unexpected offers of assistance, some times forms of assistance I never knew I might need. I am overwhelmed by the sheer genuine concern, patience and interest that all the people on the team trying to care for me show every time I walk in the door. I am, to use a cliche, blessed.

And this week, I am 'blessed' with a road map. 

This is what we know:

My CAT Scan and PET Scan indicate that I have cancer of the esophagus and that it has spread to some nearby lymph nodes but no other organs, making it Stage Three cancer. The treatment that we have decided on is five weeks of chemotherapy (once a week ) and simultaneously five weeks of radiation ( five times a week ). At the end of the five weeks my body will be allowed a month to recover and then I will have surgery. The other option was five months of more intense chemo and radiation but no surgery. The team was concerned that my medical history is such that my immune system might not cope well with the five months but they were convinced that I would have no problem with the surgery. According to the team, the outcomes of either plan are roughly the same.

Treatment begins on Monday; surgery is expected to take place in February. I was told by the radiation specialist that the main side effect I could expect was sheer exhaustion. I was told by the Chemo specialist that the main side effect I could expect was exhaustion. I asked if that meant I might be doubly exhausted and the answer was...well, yes.

For me, and for Debi, whose slog through this all may well be as hard as mine, the main positive moment was when one of the oncologists warned that for the next five years I would have to keep a close watch on my increased chances of getting pneumonia. He warned that if I felt I was getting a cold or flu, I was to come to them and not a pharmacy. Debi and I agreed that being advised on what you needed to watch for during the next five years is a positive discussion in an oncology briefing.

I don't have any illusions that this whole thing will be easy. It won't. But there is a plan. It is a way forward. 





Monday, November 16, 2015

Ten Days In and This Blog's Name is Changed...it just doesn't appear that way*

It has been less than two weeks since I was first diagnosed with cancer and I know for certainty two things. I am surrounded physically and virtually by an incredible amount of love, well wishes and heartfelt offers of help. The outpouring of support has been overwhelming. How overwhelming can be measured by the fact that I have shed far more tears of gratitude than I have of fear. The second thing I have learned in the past ten days is that time really can slow down, and shift and become totally confusing. So at the same time I am having to wrestle with cancer I am confronted by a heavy course in the metaphysics of time.

On Saturday afternoon, we went to see a movie on the big screen. Debi and I both find that the theatre allows you to get lost for a couple of hours in a way that is just not possible watching a movie at home. Getting lost isn't the best coping mechanism in the world, and it should never be a steady diet but it can and does lift our spirits. The movie we saw, Bridge of Spies did so in a couple of ways. I am a bit of a sucker for Tom Hanks and Spielberg is always good for a big screen extravaganza. I loved in particular the way they were able to recreate late 1950s and early 1960s Brooklyn and East Berlin. But what most pleased me about the film was the reaffirmation of a life lesson.

It has been too much a whirlwind. We saw an oncologist on Tuesday: he had me doing a form of radiation therapy on Wednesday and Thursday and put weight on getting a cat scan done on Friday. And if the speed with which the folks at the Juravinski Cancer Centre stays steady, next week is going to be truly intense. I don't mind the intensity but I am eagerly looking forward to the day the oncologists sit down and draw the road-map in greater detail. As a friend wrote earlier this week, one of the great eases of anxiety is a sense of action. And while that is very true, I also need to wrestle with the idea of anxiety.

And that's where the life lesson from Bridge of Spies comes in. I have always loved the Dalai Lama's explanation for why there was never a need to worry. In short he says there are only two types of things that happen. There are things you can control and things you can't. If it is the former, don't worry, just do something. If it is the latter, there is no point in worry. In the movie, Bridge of Spies, based on a true story, an accused Russian spy, Rudolph Abel is being defended by an insurance lawyer, James B. Donovan. If convicted he could be executed. And everyone wants him convicted even if rules need to be broken to do so. At several points, Donovan delivers bad news or potentially bad news to Abel and Abel just nods. Donovan at one point says, "Don't you ever worry?" and Abel replies, "Would it help?"

Of course there are some significant differences between a man being accused of spying and a person talking with doctors about cancer. For the spy, so much is out of his control, for the cancer patient there are second opinions, advocating, decisions to be made so it is not a complete parallel but it does somehow speak to me.

So do I worry? Of course I worry. Does it help? Of course it doesn't help.

I am learning Not to Worry about things beyond my control, all the other issues I am tackling head on.


* It is harder than I imagined to change the name of the blog but I am working on it. I will plead being distracted by other matters.






Thursday, November 5, 2015

Why This Blog is Getting a New Name

I am changing the name of this blog, both in order to reflect a new reality and to declare a new determination.

When I started the blog, it was to mark the publication of my book, The Man Who Learned to Walk Three Times. It is a book and an accomplishment that I am proud of and that makes me smile inside and out. Learning to Walk is hard and demands attention and true effort. Learning to Walk is difficult and problematic and deserves a record, an account.

Now I have a new goal, a new determination, a new milestone.

For a couple of months now I have been experiencing difficulty with swallowing. I saw doctors, took tests and for a while wrestled with the whole shitty idea of being ill yet again in a life filled with illness. At times, especially in moments where even taking another bite filled with me with dread, it seemed too much. But I would always come back to my touchstone point. Life is what it is. You deal with it as it comes at you.

Today, I was told I have cancer of the esophagus. There is still much to be determined, still tests to be done, treatments to be considered. But I know one thing. This will not defeat me.

As our truly delightful Jane noted today, this is the third time I have been diagnosed with cancer. 12 years ago I was told I had colon cancer. I had the surgery and it turned out the diagnosis was wrong. 6 years ago, a doctor made a preliminary diagnosis that I had a virulent blood cancer. Within 24 hours he had changed his mind and said he was wrong. In both cases misjudgments were made but in both cases I was determined that I would beat whatever was happening to me. In both instances, I had to peer inside and ask what I was capable of.

This diagnosis might be more accurate but it is just a diagnosis, it is not determinant, it is not the final word. Where we go from here is partly up to the medical system and partly up to me.

This will not defeat me.

Wrestling with cancer is hard, difficult and problematic. It demands true attention and true effort. It deserves a record, an account.

This blog is now known as The Man Who Beat Cancer Three Times.


Friday, September 18, 2015

Blue Suede Shoes

Those are my new, only worn twice, blue suede shoes, My daughter, Jane, bought them for me. A present to mark the publication of my book. She of course knew my story - not all my story - but when she read the book, especially the sections that dwell, some might say dwell obsessively, on sneakers and my fascination with shoes, she immediately decided that she had to buy me a pair of shoes.

I am not a shopper. I did learn after my surgery that shopping for shoes didn't have to be the true chore it had been for years. Not having to wear a shoe with a built-up heel, or a shoe that could accommodate a large brace meant that the world of possible shoe choices had grown significantly larger. I wasn't sure about shopping with Jane for shoes. She has a refined fashion sense, I have none. She can spend hours in a mall looking for exactly the right thing and leave not finding it but still happy. I get antsy after a half hour in a mall and can handle at best three stores and if I don't leave with what I was looking for I leave disgruntled. And of course there is the real problem of the gulf between the shoes I might love to wear and the shoes I need to wear. I need shoes that have some support for the ankle, that can accommodate a brace, a slighter smaller lighter brace than those I wore as a child but still a brace.The combination of all of these issues had me anxious.

The shopping trip was a breeze. First store we were in, I found the shoes I needed, the shoes I wanted. When I was in my twenties, I loved desert boots. Never owned blue shoes before in my life. It was cool, fun and a small thrill.

The next week, I wore them to a reading at the Niagara-on-the-Lake Public Library's Wine and Word Series. The night before the reading, I tried them out. Wore them around the house, walked about in them. I had to, I didn't want to trip and fall wearing new shoes. They were amazing. Some one in the audience at the reading asked how the shoes felt. I started talking about how the last time I ever wore sneakers was in the early nineties. Then I broke my foot one too many times and wearing a brace became the norm yet again. so twenty two years later I put on a pair of desert boots and I am transformed and transfixed. They are so light, they feel so not present that I am for a moment speechless.

At one point in my book I describe sneakers as a symbol of freedom. And of course that is a slight hyperbole. Freedom is much more complex than the lightness of a shoe. Regardless, when I put on those blue suede shoes for the first time I remembered exactly what sneakers had always felt like, they felt and feel liberating. They feel like freedom.

Tuesday, August 11, 2015

An Open Letter to the Parents of Seattle


There is a word for it. Gobsmacked. It means to be utterly astonished or astounded and there is speculation that it refers to that inherent motion of covering one`s mouth - gob being a slang term for mouth back in the middle ages - in shock at hearing something unimaginable. And gobsmacked was what I experienced when I read that `Seattle Kids Have A Lower Polio Vaccination Rate than Rwanda, Zimbabwe, Algeria, Sudan, Yemen, Mongolia.`

Stop and think about this for just one moment...There is a whack of parents in Seattle who are quite comfortable gambling with their children`s future because they are suspicious of  the government and or medical community's  reassurances about the safety of the polio vaccine or who have suspicions that scientists don`t understand what they are talking about when it comes to the rate and range of vaccines that should be administered in a child`s development. So these smarter than the average doctor, virologist or public health official individual parents have supposedly thought this through and put off vaccinating their child against polio, and I suspect some other vicious diseases as well.

I maybe gobsmacked, but I am not speechless and in that vein:

An Open Letter to Parents in Seattle (you know who you are)

Hi,

We haven't met but I feel the need to speak with you about this very strange, very risky strategy you've adopted where you don't vaccinate your child against polio because you have no plans to travel to anywhere where the polio virus is still a threat. I would have thought that a hip cool with-it city like Seattle would understand that when the World Health Organization says as long as one child has polio all children are at risk they really aren't kidding. They are talking basic science, globalization, the way people and diseases travel now: by plane at the speed of sound, undetected and pretty much everywhere. You don't have to take your unvaccinated kid to Afghanistan. Someone just needs to travel from Afghanistan carrying the virus and wham...your kid comes down with polio. Know anyone that's been to Afghanistan?

Polio used to have a much more frightening name....infantile paralysis. They called it that for a reason. The majority of the victims were infants. And those who got polio didn't have an easy ride. See children have relatively undeveloped immune systems anyway and polio is a pretty nasty virus. And the paralysis part is no picnic. If you are 'lucky' the paralysis just means a life of misshaped limbs, difficulty walking and a fair amount of pain. The less lucky die.

60 years ago, parents begged for a miracle, a vaccine that might mean their kids could be spared. But you think they were just fools, dupes of the medical establishment, ignoramuses who didn't understand how the world really works. Nothing like you, right?

So here's hoping your gamble with your kid's future works out. By the way, if it doesn't I wouldn't tell them you had a choice a chance to prevent them from coming down with polio. It might make for some very awkward silences, some extremely uncomfortable family dinners.

So you have a good day, you sleep soundly knowing you are doing everything you can to protect your children. Oh that's right, you aren't. Well sleep soundly anyway. P


Monday, July 6, 2015

Standing is Sometimes Harder than Walking

This is a photo of me taken not too long after my surgery. In it I am standing `tall`and `straight`. I am quite proud of that picture, that pose. Being able to stand `straight`has been a life long goal and a hard stance to accomplish. We may not give much thought to walking but for the most part we give even less to standing. Or at least that was true up until about a year ago.

Sitting is the new smoking, standing is the remedy, well actually movement is the remedy but standing is apparently better than sitting but not as good as moving. But standing can be hard. Especially if you are like me and have a default stance of resting my wight on my right leg, which has always been the longer stronger leg. And if your weight is to one side, things can go awry, can get painful, can be wearing. Ask my physio therapist, ask the woman who gives me massages.

When I walk, as I have mentioned, I pay attention to my walking and I am getting pretty good about paying attention and thinking about other things at the same time, which is being on the road to walking 'normally' if I can ever figure that out. But when I stand, I admit I seldom pay attention to my standing and that lack of attention is troublesome,

Yesterday, we went on a garden tour, a marvelous fun-filled exploration of 13 relatively magnificent gardens scattered around the 'old-town' of Niagara-on-the-Lake. In addition to a multitude of different walking surfaces - sand, gravel, uneven grass, slight dips, uneven paving stones - there was much standing and looking. As a consequence, by the end of the day I was worn out. Physically and mentally. Physically because the muscles in my legs were throbbing. Mentally because we are going to India in 6 months and the challenges of walking about in India are significantly more complex and I was getting irritated with myself that a garden tour was wearing me out.

After a rest, I went to our back yard where I did some raking.  After mowing comes raking. Raking has its own challenges but one of the rewards of raking is that it actually makes me confront a number of my nemeses. Our yard, like most yards, is uneven. It is not a parking lot or a lawn-bowling green; it is simply a yard with sometimes almost imperceptible dips and rises. So our yard forces me to attend to unevenness and unevenness forces me to think about how I am standing. Thinking about how I am standing forces me to stand straight, standing straight forces me to balance my weight across both legs which makes everything slightly better, slightly, because there are no miracles here.

No miracles, just one constant reminder after another. Stand straight, pay attention and be in the moment. But the other thing that paying attention teaches me is to be kinder to myself. Getting tired, getting worn out are things that simply happen to us all. Navigating all the different obstacles in 13 vastly different gardens wouldn't wear out everyone but it can wear me out. I just need to pay more attention to what is wearing me out and why. I can manage the physical wearing out much better if I learn to manage the mental wearing out. And I can learn to manage the mental strain if I keep in mind that I am learning to overcome 5 decades of ingrained behaviour. It takes time, and I need to cut myself some slack.

Wednesday, June 17, 2015

Trying to stay balanced...it is harder then we think...

The other day, in our kitchen, I stepped back from the granite island towards the stove. In doing so, my legs moved in order, right leg first followed by left leg and I was now in a significantly different spot and I turned to open a drawer filled with spatulas and ladles. As I picked up the slotted long handled spoon that I often use to scoop out rice and beans from a pot, I suddenly froze as I remembered that I had just stepped back from the granite island, without using the cane I normally have nearby, without any mobility aid at all.  Stepping back, not looking at the direction I am moving in, trusting my brain-body combo to get me there in one piece and upright. I had to chalk that one up in the win column.

Yesterday, on a streetcar travelling south on Broadview heading to a wedding, I ring the bell and stand, with my cane in hand, to head for the door, one leg moving confidently ahead, the second leg not quite finding a firm footing in the sliding shift movement of the street car and there I am almost tumbling down into the lap of a small child. Her look of terror at what might be about to happen and my sense of chagrin and embarrassment at not being able to stand steady on a moving streetcar resulted in me silently adding one to the loss column. But then I thought, well, maybe a tie...I didn't actually fall and no small children were injured in the construction of this life lesson.

Another week in my seemingly never-ending effort to conquer a very particular part of walking, maintaining my balance. Balance is about more than not falling though not falling is a big plus.

Trying to stay balanced is almost like using a yo-yo...it's harder than it looks and easier if you don't think about what you are trying to do. Sometimes, when I am walking, I catch myself in a stumble and when I do, I try and understand why I almost fell, why I almost lost my balance. Balance is about much more than a single activity, it is more like a process. It involves muscles and nerves in the legs and feet, eye and ear coordination, a highly tuned sense of space, some very complicated, very fast calculations by the brain with extensive feedback between the brain, the nervous system and the entire musculoskeletal system.

Balance is actually much more than a mere physical activity; it is a vital indicator of health and prospect. There is a reason the notion of balance gets used in so many contexts. It is about keeping things (mental, social, physical ) on track, on an even keel, so to speak. If you lose your sense of balance, in any one or all of the senses of the word, bad things can and do happen. As you can imagine, and as I have learned, there are all kinds of ways that balance can go wrong. But there is some very encouraging news about how balance can be improved through exercising and challenges.

This is something I learned in physio. Almost from day one Vaiva had me standing on foam, wood, and plastic boards, mats and beams. Some were pivoted on balls, some on half balls, sometimes she put me on trampolines. The idea was, learn to walk,step, balance and move back and forth by challenging the mind and body to conquer all of this. Improving balance is like most exercises; you get better through the doing.

Alex Hutchinson is a writer and a runner and he had a fantastic column in the New York Times a few days ago where he laid out his own experience and some of the fascinating new research going on in the science/medicine of balance. It is a fascinating read and as is true of much of scientific research, the news is good, change is possible.

I know that is true because a few days ago, I stepped back without thinking from the granite island in our kitchen....



Sunday, May 24, 2015

The Man Who Mows The Lawn While Using a Cane

Not long after we moved to Niagara On The Lake, dear friends from Toronto mentioned to us that they had an acquaintance who knew our house and knew the previous owners. In a conversation with our friends, he mentioned how he had driven by and noticed a man moving the lawn while using a cane. I will confess, that would be me.

Before we moved, before my surgery and the lengthening of the my leg, I didn't mow lawns; we didn't have a lawn. We had a magnificent rock garden, a hill of trees, several beds of plants and a big deck. No lawn, no lawn mover. Our new house has even more astounding gardens but huge amounts of grass. So we have a mover (electric re-chargeable) and I mow the lawn. One of the reasons I mow the lawn is because Debi does so much else and besides, I should be able to mow a lawn right?

One the things you learn when you learn how to walk is that walking involves muscles, tendons, bone, joints, coordination and balance. In a way walking is physical, mental, conceptual and complex and no where is this more true than when it comes to maintaining one's balance. It is all about your brain-nerve interface sense of where you are at any moment in relation to the ground and what needs to be adjusted to stay upright. It is done faster than you can think and involves a steady series of adjustments, shifts and tweaking of direction, position and poise. So if you are on an even flat surface, staying upright and steady is relatively simple. If you are on an uneven surface, well not so much. And if you think about a lawn, despite its appearance from a distance, a lawn is some distance from the idea of flat or even. So on a flat surface, I can walk without a cane. On an uneven surface, it is more complicated.

So when I mow a lawn, I keep a cane handy. Yes, it is awkward, and ungainly and to a certain extent ludicrous but it works. It helps me maintain my balance while I mow and yes I know that people stare at me as they walk or drive by and I am sure some of them think, why is that guy mowing a lawn if he needs to use a cane to mow a lawn.

I had dinner with a couple of old friends the other night and one was talking about what life was like after a truly epic service at the CBC and after commenting on a number of aspects of his new life he observed with great delight that he found himself taking huge pleasure in the most ordinary of life's activities. I understood completely. After my surgery, after my stint in a rehab hospital, after learning to move about more confidently, one of the household tasks I took back was emptying the dishwasher. Filling up a dishwasher with dirty dishes and then taking out the clean ones and putting them away may sound close to mundane, boring and mindless but I found and find the process liberating and affirming.

For most of us, doing the ordinary necessary things of life is often truly a chore. But sometimes you learn that ordinary necessary things of life are as much a part of the moments that stitch together to form a life as are the adventures, ecstasies and thrills that we enjoy so deeply. You learn in mindfulness meditation that life is moments in sequence and the moment spent stacking a plate is as much a part of life as breathing. Being able to empty the dishwasher was and is a sign to me that my life is on track, that I can and do help maintain the web of connections that makes me human.

So too with mowing the lawn. It isn`t a `big`thing, but it is a thing that needs to be done and if I don`t do it, someone else has to. If you have a lawn it needs to be mowed. And the reality is that mowing a lawn is good for me. It forces my body to move in ways it may not want to. It forces my brain to pay attention to balance. It shows me things about moving and walking that I need to attend to.

Learning to walk again has taught me many things, learning to walk and mow a lawn is teaching me other things, some different, some just variations on a theme. A wise person once said you can find the essence of life in a drop of water, I am learning you can find the meaning of life in mowing a lawn and sometimes the meaning of life comes with a cane.  

Sunday, May 10, 2015

Being Reminded What Polio Means Today


This morning there was a news alert from the New York Times reporting that the UN was once again taking up polio and measles vaccinations in Liberia now that the country was free of Ebola. It is one of those real good news bad news days when the absence of one extremely deadly disease allows you to continue to work eradicating other less deadly but nearly as devastating diseases. As I have mentioned many times before, I have an ear tuned and an eye pealed for each and every reference to polio. It is that obsessive compulsive reflex that everyone who has ever been touched by a disease or disaster harbours for the rest of their lives.

During the Hot Docs Festival in Toronto, late at night, after talking for two days about my book, I went to see the new documentary, Every Last Child. It is a fascinating film, funded by the United Arab Emirates and the Gates Foundation of the twists and turns, deaths and delays, hardship and hazards of trying to vaccinate every last child of Pakistan against polio. For a variety of reasons sections of Pakistani society are opposed to vaccinating children against polio, in particular elements of the Pakistani Taliban. In the documentary we are taken through various efforts to get the kids inoculated.

Two segments in particular struck chords in me and at times left me nearly in tears.

One involved a man in his late twenties, early thirties perhaps, who had little movement in or control of his legs. His efforts to move about, to take a shower, to find any employment, any community were heartbreaking. Years ago we visited India and numerous encounters with individuals crippled by disease, many probably by polio, left me at the time numb and understanding that all that separated me from them was truly dumb luck. I was fortunate to be born here; they were not. I lucked out, so to speak, in having access to a world-class health care system; they did not. Watching this man navigate the world left me strangely grateful for the opportunity to learn to walk three times. As hard as it has been to do so it pales in comparison to that man's daily life.

The other segment involved a young boy, a toddler who had been stricken suddenly with paralysis of the legs. Watching him be examined, be probed, watching technicians fit him with casts, fashion braces, prepare shoes and then watching physiotherapists try to show him how to walk in the braces was heartbreaking. Watching his father look on with near despair at what his son would have to learn to do, watching him worry aloud about what chance his son would have in Pakistani society without the use of his legs left me speechless. The truth that was beaming from the screen was like a sucker punch. It left me reeling inside. Tom Roberts' film is worth seeking out. The story is both powerful and urgent.

Sunday, May 3, 2015

Talking and Talking about the Book.


The book has been out for three weeks and the reception, the reviews, the reaction have all been very reassuring and somewhat embarrassing. I am not an unduly modest individual but the kudos and congratulations have at times choked me up.

What I have found most moving at the various events is the inevitable approach by a stranger who tells me about a parent, a relative, a friend who is experiencing or experienced some extreme difficulty, often associated with polio but not always, and the troubles that a friend or relative went through to maintain even a semblance of mobility.

The stories don't come with questions or even comments really, they are simply a sharing. It is as if me being there, my book being published is a reason to talk about what they witnessed, the at times incredible pain and effort people sometimes have to make to overcome an illness, to manage a disability. I am reminded again and again that the Buddhist notion that 'life is suffering' has a crystal clear ring of truth at its very core. People endure pain, confront obstacles and wrestle with sometimes near impossible difficulties and for the most part there is no forum, no occasion, no time to discuss or share this most basic reality.

Far too often we find ways of being glib, avoiding difficult conversations, all in the interest of not troubling another person with our own burdens. What we miss, what we lose is that most basic of connections, that sharing of our common humanity. I met one man who describe a near relative who had struggled his whole life with even the most basic mobility and he wanted to know if his nephew would enjoy the book or would the book make him sad. I said I didn't know and we talked a bit about the nephew and his approach to life and then we talked about the book and he nodded his head and said, "I think he might enjoy it," and he asked me to sign the book. As he walked away I thought, wow, would I enjoy this book if I hadn't written it, if it wasn't about my life? I think so, but it is a question I am wrestling with. I never intended my story to be 'inspirational' and some of the most pleasing comments I have received describe the telling as open, honest, blunt. For now, as I mull this over, that will do.

Monday, April 20, 2015

Humbled by My Own Book


Working on a memoir means always learning new things about who you are and always discovering new buttons that, when pushed, unleash emotions and meanings you thought you were long past or finally over.

On Tuesday, April 14th, in the company of many many friends and the loves of my life, Debi and Jane, we launch the book and the air is filled with congratulations. Everyone makes a point of telling me how excited they are and how brave I have been and am being. I am truly touched, floating a few inches about the floor and deeply humbled that so many people both wish me success and are intrigued with the book.

If you think writing a book is a challenge, the task of promoting it is equally daunting. My publicist, Shona Cook, is constantly drumming up reasons, venues and opportunities for me to talk about my story, and expound upon some of the themes in even greater detail. For years, I made my living trying to think up questions for authors that wouldn't leave them bored or seem predictable. Now, I am on the other side of the microphone and finding it much tougher than it seems.

Later this week, I appear at the Ottawa International Writers Festival and for the first time I will actually read from the book to an audience of strangers. I am feeling nervous.

So I sit at my desk, pick a section of the book to read and rehearse in front of Debi. It is the chapter that details the year I spent on my back in a body cast when I was twelve. The chapter is nine pages long. By page four, my voice is cracking, and my eyes are tearing up. By page six, I am weeping. I am weeping partly because I haven't read it aloud before but mainly because I feel so sad for that little guy. I finish reading the chapter, struggling through the tears because I have to, it seems important to do so and because Debi wants to hear the end.

After a minute, I wipe my eyes, half smile and say, "well, maybe I won't read that chapter in Ottawa."

Sunday, April 12, 2015

The Right and The Left of Me: A Tale of Two Bodies


" I could cut your body in half, and it would be like two different people, the two halves are so different"


Throughout much of my life I have experimented with various ways of treating the soreness, stiffness and pain that has to greater and lesser degrees helped define my waking hours. Years ago, the pain and discomfort were extreme and forms of self-medication were as common, sometimes more common, as visiting a specialist in managing or ameliorating pain. And when not self-medicating or meditating I often tried a personal version of stoicism, believing that ignoring the pain might make it magically vanish. Needless to say, none of these were the most effective or soundest of choices.

In the past couple of years, since my last surgery, I am much more attentive to finding the best, the optimum treatment of whatever pain and discomfort I am feeling. Let's just say I have matured. I pay serious attention to all the various alternatives and try and choose the ones that seem most likely to be the healthiest, the most practical.

On Thursday, just five days before the launch of my book I went for a massage, a 'deep tissue' massage, sometimes called a sports massage, similar to a Shiatsu massage. My right shoulder hurts, my right upper thigh muscles throb, my daily exercise routine is at times debilitating and I knew that I needed some way to lower the physical anxiety if for no other reason than so that I could better cope with the emotional anxiety I was experiencing on the eve of the book hitting the shelves.   

It was by no means the first time I had had this type of massage but it was the first time in Niagara-on-the-Lake and the first time with Breanne Schultz who has very conveniently set up her practice right around the corner from me. In many ways it was my classic first encounter with a medical person. Quick recap of a complicated history and a fast summary of what concerns me at the moment. Her reaction, 'well quite a project then' and a question about deep tissue and how much pain I might be used to.

The hour goes by fast and the pain of the massage and the pressure is both extreme and welcome. I can feel the impact and appreciate the partial temporary release and accept the knowledge that this is going to be a longer term thing than I might have thought. At one point while massaging my upper thigh her hands feel like a knife cutting the muscle. At another point she is massaging my upper back and she asks if I feel that hardness like bone, I say yes and she says yeah but it is muscle; it should not be hard like bone. At the end she gives me a sense of what we are dealing with.

She tells me she could cut my body in half and it would be like two different people. My right side is tight, tense and hard bound in ways that are difficult to describe, the left no where near as much. It makes perfect sense to me, the right side has always taken the brunt of keeping me moving, keeping me going and that hasn't diminished since the surgery, since the straightening of my body since the lengthening of my leg. One of the tricks, one of the things I struggle with daily is reminding myself to shift weight so it is evenly balanced. You tilt to the right for 60 years and it takes a bit of reminding, rewiring, to stand even and spread the weight and the burden.

We discuss treatment options. I choose the more frequent visits, I choose confronting this head on. One thing I keep learning is that attending to these things is almost the equivalent of a full time job, but it is the work I have taken on.

Now if I could find a deep tissue treatment equivalent for the emotional tension I am feeling.

Tuesday, April 7, 2015

Update on Sidewalks

A few weeks ago I wrote about sidewalks, in particular the obstacle course nature of sidewalks in Argentina. But as I pointed out then, Argentina is not alone in having mobility challenging pedestrian areas. The question that remains after any reflection on the difficulty with sidewalks is what to do about the problem.

Today I read a very intriguing account of a lawsuit in Los Angeles that might well mean 1.4 billion dollars in repairs to the city of Angels horrific sidewalks. The settlement is in the case of a class action suit on behalf of people who 'rely on wheelchairs, scooters, and other assistive devices to get around.' This summary of the case, its history and the possible future consequences of the suit is quite useful and thought-provoking....a key element in the case is the American legislation: Americans With Disabilities Act, which has no equivalent of in Canada.

I know that many people in this country regret that we lack the American efforts to make the rights of the disabled an idea that has legal weight. There's a worthwhile legislative initiative for any politician looking for a justification for office, or a worthwhile project for a community group looking for a cause. Or maybe it is just something to mull over. Not everyone things that lawsuits or legal instruments is the way to resolve matters of social contract.

So I am back where I started with this addendum. If legal hammers aren't the answer to making sure something as fundamental as a sidewalk is navigable by everybody, what is the answer? Next time you are stumped with something to ask a politician at the door looking for your support, ask her what she is willing to do about something as simple as a sidewalk. Don't let them put you off by saying sidewalks aren't the jurisdiction of the province or the federal government. Basic human rights and equality is everybody's jurisdiction.  

Sunday, April 5, 2015

Polio is Something I Can't Shake

Everywhere I look today, I just see polio.

On my desk is a pamphlet promoting a walk-a-thon for World Polio Day. In my newsfeed, a growing stream of stories about Joni Mitchell's collapse with most making reference to her polio as a child and asking whether she might be suffering some 'post-polio' type ailment. On my desk top is a video of the 60 Minutes story exploring the idea that some cancer patients benefited from being treated with a variant of the polio virus. In my in-box is an announcement of the showing of a new documentary at Hot Docs telling the story of aid workers intent on vaccinating every last child in the world against the crippler. In another email is an essay from an environmental historian who asks some very interesting questions about nature, natural and the idea of virus based vaccinations. And in ten days my book will be published and I know people will want to talk about polio and I am still not sure how much I want to talk about polio.

I have truly mixed feelings about the virus. On the one hand it is a disease that shaped who I am in a most dramatic fashion. On the other hand, for most people today, in North America, it is a mystery, an enigma. Debi was talking with someone the other day about my book and they asked quite sincerely if polio was something you were born with. It is a fascinating reality that 60 years ago polio had the continent gripped by fear and today it is, for the most part, a curiosity.

When people ask me about polio it is a way of asking about me and how I was shaped and formed. But they are also asking obliquely about vaccines and children, diseases and prevention. We are lucky. Vaccines have made most childhood terrors a faint memory, so faint in fact that we have forgotten how vitally important the social contract we make about vaccines really is. The deal, that all children get vaccinated for the good of all children despite the rare possibility of unfortunate side-effects, is at the heart of society's rush to make childhood, to the extent possible, a safe zone.  That was a relatively easy deal to make when polio was slicing through society indifferent as to who was struck down. When we choose to not vaccinate our children we are standing apart from society, voting for personal interest over the interests of society as a whole. Today, the deal is harder, more fraught.

Choose the adjective: victim, sufferer, survivor or a person who had polio. I am personally most comfortable with the last iteration, it places the disease in the proper perspective, significant but not all defining. The reality is that it gives me no magical insight that extends beyond my own experiences and reflections. I am not an expert in disease vectors, the politics of vaccination or even the idea of a social contract. I am a person who had polio and as a consequence have thought about it long and hard. I know it is a horrible thing to get, to live with but life is full of horrible things. Polio may not be something I can shake but it is certainly something I am learning overcome, or so I like to think.


Wednesday, March 25, 2015

I've have spent many an hour thinking about sidewalks....I know sidewalks


In early March, I was reading a Facebook posting by Jane Kansas, a friend in Halifax, and she wrote:

"Why am I walking around the North End of Halifax and still there is no end in sight for the slippy street and sidewalk shit-show going on? What if you are in any way mobility impaired? What if you use a walker? What if you just have weak ankles? What if you have shitty cheap shoes? What it, god for-fucking-fend, you use a wheelchair? Just fuck off and die, I guess."

And I really understand and empathize, and sympathize and endorse her sense of frustration and near despair. Sidewalks can do that to you, especially sidewalks covered by snow and ice. Halifax has had it rough this year, a lot of snow and a real on-going controversy about sidewalk clearing. Jane's rant in the moment of anger touched a chord and got me thinking hard once again about sidewalks. 

I do think about sidewalks a lot and have for years. As a pedestrian with some mobility issues, navigating sidewalks has always been a challenge. Sidewalks have a long history and there are deep connections and intersections between sidewalks and the ways we live together. In the 1990s and the first decade of this century, I was mostly concerned with and provoked by how difficult sidewalks were becoming with double-wide baby carriages, too too many bicycle riders, joggers, runners and kids on scooters and Rollerblades."City Sidewalks Busy Sidewalks," might make many people think of Christmas; to me it is just the norm. Sidewalks are busy and sidewalks are different everywhere. New York City sidewalks are a totally different experience from sidewalks in the west end of Toronto or in Niagara-on-the-Lake where sometimes there are no sidewalks at all. Sidewalks in business districts are different from shopping districts and different again from sidewalks in residential areas or suburbs. 

But nowhere have I found sidewalks as idiosyncratic or difficult as in Buenos Aries, Argentina. 

The picture is me navigating a very normal stretch of sidewalk in BA. In Buenos Aries, each building owner is responsible for the piece of the sidewalk in front of the building. So on any given street the sidewalks are a tapestry reflecting the tastes, inclinations and financial soundness of each building's owners. In the course of a stroll you encounter tile, concrete, stone, marble, brick, steel and each one of these sections can be in pristine shape, slightly damage, a wreck or missing huge chunks. Or sometimes it is under repair and passage is completely impossible. 

Everyday, leaving our apartment and going for a stroll was an exercise in nerve, attention, worry and pure adventure. I found myself wondering about why someone would choose tile over steel plate, brick over concrete, sloping vs flat. I also found myself noting how my walking changed depending on the material in question, the angle of the sidewalk or the degree of apprehension being created by the state of the sidewalk ahead. 

Sometimes, I curse my need to attend to the ground I walk on when I realize what I am missing by not staring ahead or around and then I think about what I am learning about human locomotion and the built environment all arout me. It's a trade-off. P 

Friday, March 6, 2015

A couple of months ago, someone asked me if it was true that I had a book coming out. I said yes and went on to add that it was scheduled to be published in April and that the title was " The Man Who Learned to Walk Three Times". The person I was talking with was quiet for a moment and then asked "What's it about?" And I will admit that I was stumped. If the title was insufficiently self-explanatory than I had no idea what the phrase self-explanatory meant. It is truly an account of the three times I have learned how to walk.

But now, there is a blog with the same title and I am stuck with the same question my friend had. What's a blog called The Man Who Learned To Walk Three Times about? And why should you read the blog, if you can read the book and vice versa?  The reality is that the book and the blog share a title and that's about it.

So what can you expect?

Science, Sociology, Spirituality, Analysis, Humour, Observation, Photos, the odd interview, a stanza or two of poetry, a  few chords of music and stories, lots of stories.

In the book, I recount and reflect on three difficult times in my life, and what those repeated efforts to acquire the skill of walking meant to me and my family, in practical terms and psychologically, In the process of writing the book, my fascination with walking, a thing that has always bothered and perplexed me, grew, and my fascination and curiosity about walking continues to grow.

Walking is both the easiest thing a person does and the hardest thing imaginable. There is an old joke about learning to ride a bicycle and how you never forget. I never learned how to ride a bicycle, leg problems made it an activity fraught with potential problems, but if it is anything like learning to walk, you can forget and forgetting something as simple as walking opens up a whole universe of contemplation, reflection and speculation. How we learn, walking or anything, how we forget, what makes walking different and the same as any human physical activity, what impact does our difficulties with walking have on our day-to-day lives and other's perceptions of our day-to-day lives, what role does technology play in learning to walk, in maintaining the ability to walk, in re-acquiring the ability to walk or even replace it are all questions I will be tackling in this blog. I'll explore everything from side-walks to shoe design, braces to balance, canes to conundrums and everything in between.

The other thing this blog is about is the very process of writing and talking about the deeply intimate and deeply troubling situation of being less than perfect, being ill, being damaged. Nothing outside the norm truly ever escapes judgement, especially from strangers. Detailing one's medical history and personal problems can be raw, embarrassing, painful and simply a challenge. This is all especially true if you want to do more than be simply self-referential and self-absorbed. I am modest enough to accept that my story is my story but I also believe that talking about your own story in a sufficiently open manner can spread some light, however dim, on what I have learned about what it means to be.


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