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."

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.

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.  

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.