Matt’s marathon

Matthew King from Bedford, who is about to start his career as a lawyer, completed the New York marathon in 2007 in his chin controlled powered wheelchair, which he uses as a result of a spinal injury. Matt kindly shares his experience of travelling to New York and taking part in the marathon.

By Matthew King

My name is Matthew King, and in 2004 at the age of 17 I broke my neck playing in a game of rugby, and have been left paralysed from the neck down and dependent upon a ventilator to breathe at all times and use a chin controlled powered wheelchair for mobility. Following my accident I still wanted to lead as good a life as possible, and therefore decided to enter the 2007 New York Marathon.

Travelling to New York

The flight out to New York was relatively uneventful, if we choose to forget the fact that they dropped my wheelchair off the plane when trying to get it off! Not too much damage was done, and I was able to get back into it after a couple of minutes of minor adjustments (using a hammer that is!)

New York is an amazing, if not crazy place. If you think [...] continue the story

The lasting effects of a temporary disability

By Margo Milne

Imagine you were born perfectly fit and able-bodied. As a teenager, you suddenly became severely physically disabled, but then you became able-bodied again. How would that affect your attitudes to disability and disabled people once you were an adult?

When writer and broadcaster Hardeep Singh Kohli was 13, he came down with Guillain–Barré syndrome, a usually temporary condition that causes sudden paralysis, often triggered by infection. He was in hospital for 10 weeks, and it took him a year to learn to walk again.

Lucy Pask, who runs the website Great Aunt, also had Guillain–Barré syndrome, in her case at 14. After 2 weeks in a wheelchair, she recovered sufficiently to walk with a frame, and was back at school within 12 weeks.

Hardeep didn’t see himself as disabled and wasn’t aware of any discrimination. Lucy felt that, if anything, discrimination operated in her favour. She got lots of attention, long extensions on coursework deadlines, and was offered money by charities. People who had previously bullied her now protected her: “It seemed like in their minds; it was fine to bully me whilst I was ‘able bodied’ but whilst I was ‘disabled’ I was totally out of bounds, a person to [...] continue the story

In Sickness And In Health…

In sickness and in health… regardless of religion or cultural background, this vow usually makes its way into most wedding ceremonies. But how many of us in our relative youth at that time, actually truly understand what those words mean. “In health” is the easy part of course but what happens when unexpectedly some sort of chronic, serious illness decides to intrude on your perfect union?

That’s exactly what my husband Arun and I faced over fourteen years ago. We were married just five years when my symptoms began. And despite my desire to hide my head in the sand, he’s the one who encouraged me not to ignore the tremor. He was the one I ran to, my eyes full of angry tears, after the first neurologist had the gall to tell me he felt I had young onset Parkinson’s. He sat holding my hand when months later the second well-renowned movement disorder specialist confirmed this life sentence despite my desire to be absolved from the initial diagnosis.

He listened to what my physicians were recommending and took care of the practical side of things when all I heard were words and nothing was registering. And he was the one who [...] continue the story

The Portrait: Simple Yet Complex, Obvious Yet Profound Part 1: The Eyes

By Judith Leitner

Over a century and a half ago, most folks were unable to create tangible visual links to their past. Many lacked the financial means necessary for creating pictorial inventories of themselves and their ancestors through the pricey art of Portrait Painting. Then, in 1839, Charles Daguerre in France and Henry Fox Talbot in England both announced that they had devised a way to ‘fix an image’, and the art and magic of Photography was born. With its affordable price tag, this clever novelty would enable everyman to express a primal, compelling need: to record, share and collect memories in pictures.

Cityscapes and still-life studies were the focus of the earliest photographic endeavors, as both subjects tended to be immobile during long exposures. Portrait photography evolved swiftly and concurrently, as technological advances in optics and chemistry allowed for less extensive exposures and richer images. Studios burst on the scene to accommodate the torrential parade of everyman and aristocrat alike. Since then, we’ve been voraciously crafting portraits and positioning ourselves in the ‘decisive moment’.

In spite of his deep ambivalence towards modernity and middle class values, the bohemian poet and art critic Charles Baudelaire allowed himself to be ‘mechanically reproduced’ by a [...] continue the story

How Did I Quit Smoking? I Just Stopped!

By Sean McDermott

I had quit smoking so many times that I decided not to use that word ever again and now when I hear people say that they have “quit”,  I take it lightly and reserve comment.  Quitting is something that you fear, something that you approach slowly and have a plan in place to overcome the odds, the mood swings, the cravings.  I had no such thing.

Let me give you some untypical background.  In July of 2007 I arrived at Toronto Western Hospital in an ambulance dying of Liver Disease from Alcoholism.  I know this because they told me next morning that I had been dying for about two weeks. I wouldn’t have made it through the night if my sister and Mother had not insisted as I lay in my sweat-drenched Queen bed, throwing up repeatedly, that I had to go to hospital.  Even then I kept thinking,  “if I could just rest” but I went as they say, kicking and screaming.  The Chief Physician the very next morning visited my bedside, told me that I was very lucky and that my life was about to change, that is if I wanted to live.  There is always the [...] continue the story

A Herd of Narcissists, Part 3

In Part 1 of this series, I wrote about the connection between shame and narcissism. In Part 2, I looked at narcissists’ belief that they are special and unique people. In this final section, I will be looking at their belief that they are better than others: the “others” in this case being you and I, the users of Canada’s healthcare system.

If you read Parts 1 and 2, you will know that I’m taking some of the basic tenets of narcissism and applying them to my experiences. I’m doing so because of the high level of frustration I felt trying to get reasonable care for my 77 year-old mother. I chose narcissism because anyone who has tried to negotiate with a narcissist–essentially a self-absorbed person–will understand the difficulties I’m describing. The self-absorbed are those who will only engage with others when it benefits them in some way.

The Canadian healthcare system, in some regions, offers several variations on this theme.

In general, I find that many healthcare workers have a lot of confidence and it comes from their basic understanding of supply and demand. Their scarcity gives them the upper-hand and they know it. Two predominant factors make up this issue: there [...] continue the story

A Herd of Narcissists, Part 2

In Part 1 of this series, I wrote about the relationship between narcissism and shame.  This brings me to my next point, which is that narcissists see themselves as “unique and special people.”

(Scroll down to get the rest of article.)

I’m looking at narcissism because I believe its submerged half, shame, is a shadowy but potent presence in many healthcare settings: its destructive force is shaping the behaviour of many working in the field.

I want to understand what went wrong with my mother’s journey through the healthcare system. I want to know why workers in it were so prone to lying, prevaricating and stonewalling. I would also like to know why advocating for my mother provoked so much anger and resentment.

I’m looking for answers because I am getting older and what I saw frightened me.

My mother’s journey started in an acute-care hospital. From there she went to a rehabilitation hospital, and from there she came to my home, where she lived for 20 months. She is now in a long-term care facility here in Montreal and is, for the most part, doing well. However, if you read Part 1 of this article, you will already know this wasn’t always the case.

Like many [...] continue the story

A Herd of Narcissists, Part 1

I’ve touched on the issue of shame twice now in recent articles. It’s because I believe it is a powerful tool for both good and evil.

When I refer to shame as a tool I mean that the evocation of it, whether self-generated or externally prompted, often triggers one of two responses: a self-correcting mechanism (I won’t do that again) or a self-corrosive mechanism (I’m no good). Brené Brown differentiates between guilt and shame by saying that guilt is attached to our actions while shame is attached to our identity. It’s the difference between doing wrong (Ooops) and being wrong (I’m such an idiot).

I sometimes experience a helpful form of shame when I drive carelessly, and my desire to avoid that feeling is probably what keeps me from doing it too often. On the other hand, being unfairly targeted or thrown into a bewildering conflict seems to evoke a different kind of shame. I’m talking about those times when I’m being treated as the source of a problem instead of just part of it.

Here’s an example: Driving to work one morning, I inadvertently swerved into a neighbouring lane on a one-way street. I corrected myself immediately, but another driver, who was behind me and in that lane, [...] continue the story

Finding out about wisdom teeth the hard way

In my 23 years of life, I’ve had health insurance for only 2 of them. Growing up, my Dad made just enough money so that I didn’t qualify for medicaid, but not enough to be able to purchase insurance. Despite this, my parents never denied me needed healthcare, charging everything to our version of health insurance: the credit card. But now, as a young adult watching my parents try to unbury themselves from a mountain of strangling medical debt, I’ve resolved to not let the same fate befall me. My version of health insurance? Do not go to the doctor until I am 99.9% sure I am dying.

This was working fairly well for me until last year. I was relatively healthy most of the time, and was astounded to learn how many things would go away on their own with no antibiotics.

Then, in the fall, a few months after moving to a new town for school, a bad flu knocked me to my feet. And since I had been off my asthma medications for over 4 years due to the prohibitive cost (not of the drugs themselves, which I had been on since I was 6, but of the doctor [...] continue the story

Seeing Light And Shadow

By Judith Leitner

It all begins with light and shadow: opulent daylight softly slipping through a window and illuminating a lovely face, deep shadows stretching across wide valleys and cavernous crevices, dazzling light glistening on ice or crafting strange forms along sand dunes, elongated shadows within dawn’s emergent light and dusk’s fading glow, dense light within grey fog, mellow open shade on a bright summer day, harsh and calculating flash light in a dark room: these and an infinite array of other expressions of light and shadow are the primary shapers of meaning in a photograph. Indeed, the word ‘photography’ literally means ‘writing (graphy) with light (photo)’.

The first time I taught children to ‘write with light’ I quickly understood that all they needed – after a very basic intro to the camera and film – was a few lessons in exploring light and shadow. Outdoors, we wandered and observed how time of day, weather, open air and rooftop canopies informed qualities of natural light and shadow, and we played with the flash in daylight. The children were amazed when they perceived the ways their hats blocked light and cast dark shadows on their faces. Indoors, we looked at diffused window light, [...] continue the story