Category Archives: Perceptions

The Black And Whites

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The pictures I’ve been posting from the time when I had cancer have a story behind them, namely Kate’s Story.

When I was at the beginning of chemotherapy treatment I appeared in a feature series of photos in the local newspaper, the Hamilton Spectator. A publisher noticed that initial piece and they approached the photographer, Cathie Coward, and my family about turning my experience with childhood cancer into a photo essay and book. This decision was one I made a long time ago, but I remember agreeing without too much deliberation. I think the idea was to create a resource for families with children diagnosed with childhood cancer. At the time it seemed like a good idea.

Over the course of the year I underwent chemotherapy and surgery Cathie Coward photographed me at all stages of the process. She was there during the times in hospital when I was being loaded up with chemotherapy drugs; she was there for my last morning on two legs; she even came to school with me on my first day back after surgery.

  © Cathie Coward

I very seldom look at the pictures – finding the ones to include in this blog has meant flipping through the images for the first time in years. And I have never read the text of the book.

There is a quote from an essay by George Steiner titled ‘In Bluebeard’s Castle’ that reads ‘It is not the literal past that rules us, save, possibly, in a biological sense. It is images of the past.’ My memories of that time are faint, and when the event I remember has been captured in one of the photos I’m not sure if my memories are of the event itself, or of that image, carried to the present.

When I look at the pictures I have a hard time seeing the girl in the photos as me. And really, she’s not me; the photos show the image of the girl who grew up to be me.

I initially chose not to read the book because it seemed unnecessary – I knew the arch of the narrative, and by the end of the chemotherapy I was done thinking about hospitals and childhood illness, and its impact on families. I will never read it now because of the fragility of memory – I don’t want my reading of the book to muddle for me what I remember of that time.

Function / Form

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Kate changes dressing_1 © Cathie Coward

As you can see in the picture above, I do not have what you might call a ‘normal’ amputation.

I was diagnosed with Ewing’s sarcoma at the age of 11, when a tumour was found at the end of my left femur – the long bone of my thigh – in the growth plate closest to my knee. Soon after diagnosis I started chemotherapy, and was given the ‘choice’ between a joint replacement and an amputation. Specifically, a rotationplasty.

A rotationplasty is a salvage procedure that is done to save two joints, and leave the patient with a functional knee. Essentially, two incisions are made, in my case one high on the thigh and one just below the knee. The middle bit gets discarded, and the calf and ankle are rotated 180 degrees and reattached so that the ankle becomes a functioning knee.

Even now, I look at this picture and go ‘Man, that does look weird’. And it does – it still looks weird even to me, and I’ve had 20 years to adjust.

But, I’ll tell you what: It is functional. Because the foot is a naturally weight-bearing part of the body, I can wear my leg for 20 hours without issue. I’ve hiked up mountains. I’ve biked up mountains. I can stand for as long as I need to. I can surf and climb and practice yoga. And work as I need to.

When I had to make the choice between knee replacement and rotationplasty – at the ripe, old age of 11 years* – it was surprisingly easy. Shortly after I was diagnosed, I happened to share a hospital room with a girl who’d had a bone tumour in her knee. Following joint replacement, she was back in for yet another surgery. When you undergo this kind of intervention at a young age, by necessity they remove the growth plates around your knee. As a result, the affected limb grows much more slowly. This young woman was back in hospital to have her long leg shortened and her short leg lengthened… again. I could see she had difficulty walking, and that her shoes had to be markedly different heights to accommodate her leg length difference.  Around the same time, I met a young man with a rotationplasty whose family my mom had contacted through a local charitable organization. He had needed no additional surgeries, and was cycling and playing baseball regularly. Though I was only a couple of months into chemotherapy I’d had my fill of hospitals. The choice seemed obvious – I wanted function over form.

But, it’s not that simple for everyone. I recently met a mother whose daughter has a congenital condition that might best be treated with a rotationplasty. Her alternative is to leave the limb as it is. When I met this mother – I did not meet the daughter who was not yet three – I was quick to tell her how able I was, how functional I was, how happy I was with the outcome, and how I wouldn’t change a thing. Her questions focused around skirts and boys.

 
*The G. Gordon Liddy offering of “I’ll break your legs or steal your girlfriend – your choice, Mister”

First World Problems

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I am quite fond of the acronym ‘FWP’. I will often throw it out there after someone asks me about a challenge at work, just to remind myself that my problems are so few and so incredibly small relative to those of the majority of the people on this planet.

Recently, I was made wholly aware of the fact that the challenges I have with my prosthetic leg are also rooted in the first world context.

I have spent a fair amount of time in South-East Asia as part of my professional life. Every time I return to this part of the world I am reminded of how much I take for granted the luxuries of the first world – education, health care, potable running water, roads, transportation infrastructure, a safe and secure food supply, security, a functioning justice system, the list goes on and on. And every time I’m in South-East Asia I try to put money into the local economy in the form of service consumption because it seems to be one of the easiest ways to get money into the hands of people who need it, particularly women.

So the last time I was in Indonesia I went for a local massage. The woman asked me to take off all my clothes, as you are expected to do in these places. I’ve had a few massages before in various locations including India, Sri Lanka, and Indonesia, so I’m used to having women ask what happened to my leg. It’s interesting that what people guess to be likely the cause varies by setting. In Sri Lanka and the United States, I am most commonly asked if I am a soldier, while in Indonesia and India the first guess is usually motor vehicle accident.

Traffic accidents are one of the leading causes of disability in places like Indonesia, and one only needs to step out onto the street to realize that there are a lot of accidents involving pedestrians. I can only imagine that with the standard and availability of health care, limb loss is a common outcome.

In this instance, when I told the woman that I had been very sick as a child she was quiet for a while, and then said something to the effect of ‘if you were a woman in Indonesia you would not leave your house.’ That was it  – no follow up, no explanation, just those words. Her simple statement broke my heart.

It is because I was born in the first world that I received the treatment and surgery necessary to survive childhood cancer. It is because I live in the first world that I have access to people like Jon Allen who equips me with best prosthetics available to live an active life. And while I have had the experience of feeling marginalized as a result of my artificial leg, never to the degree that this woman so plainly described for me. I can only imagine the poverty and trauma that can stem from limb loss in these types of settings. I hope, with naïve optimism, that my presence in places like Indonesia shows people that such social exclusion is not the only way of responding to limb loss.

Mostly though, at the end of this encounter I was conflicted with emotion that was equal parts gratitude and powerlessness.

Our Cancer Lexicon

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I believe that the language we use to describe the human experience shapes our perceptions of that experience as much as we shape the language itself. One of the areas in which I find the use of language quite disturbing is when we talk about cancer.

As an example, Jack Layton’s death from cancer was much talked about in Canadian media. The CBC ran an obituary entitled ‘Jack Layton’s legacy as a fighter’.

When he announced his diagnosis to the media Jack Layton himself said ‘I’m going to fight this cancer now so I can be back to fight for families when Parliament resumes.’

Now granted, my first-person experience with cancer was a long time ago. I had a total of 10 months of aggressive chemotherapy with surgery falling somewhere in the middle. Despite the passage time, one thing I am certain of is that the experience never felt like a battle, a fight, a war, a slugfest…. You get the idea. What I do remember is that when you get a diagnosis of cancer you are immediately swept into this torrent of events over which you have no sense of control, particularly as a child. In my case, the pathologists needed to argue over what type of bone cancer I had which meant there was a brief interlude between diagnosis and onset of treatment. During this time I can remember thinking about how my hair would fall out: one of the ironies of having cancer as a child is that you have no frame of reference for how bad the treatment is really going to be.

I do not remember anyone asking me if I wanted to pursue treatment. As a child, it was not my decision to make. Perhaps my parents were asked but it is one of those decisions around which you have little choice if you hope for your child to survive the illness.

In the case of a battle or fight or war at least one player has a choice about whether or not to pursue conflict. In the case of cancer, it is not like the cancer is making some sort of decision. And as the person it affects you are at the mercy of the disease in terms of the choices you have available.

Also, in the case of conflict I imagine there is an adrenaline rush, the sense that you are taking up some significant challenge or meeting a foe head on. I can tell you, I never felt like that. There was no rush. There was a sense of powerlessness. There were the tears on the days that I had to go to the hospital to be injected up with chemotherapeutics. I remember the nurses coming into my room in full isolation garb with the next bag of chemotherapy to be hooked up to the IV pump. Does that sound like a battle, or a fight, or a war, to anyone?

 © Cathie Coward

I think one of the major repercussions of the way we talk about cancer being a fight is that it implies that there are winners and losers. It suggests that on some level, if you die from cancer somehow the cancer has ‘won’ and you have ‘lost’ the battle. It ignores the fact that when you die the cancer also dies. It also implies that those who die of cancer do not fight as hard or as bravely or as fearlessly as those who survive.

If the experience of having cancer is to be viewed as a battle then the person with it is merely the landscape – that’s the best analogy that I have been able to come up with. On one side you’ve got the doctors, and their arsenal of drugs and treatments and symptom relievers and other modalities, while on the other side is the cancer. And the person with the disease is the landscape on which the battle goes down. The best you can hope for is that the landscape comes out the other side reasonably unscathed. And that after time to heal and rest it starts to look like what it used to. Regardless, the remnants of the battle remain and in many instances the repercussions of the fight that was waged become part of the landscape. And then there are the unfortunate instances where the landscape never recovers. But really the landscape has very little to say in the outcome and can only hope to see the other side of the fight.

The “D” Word

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At the age of eleven I was diagnosed with bone cancer. Treatment required a surgeon cut off part of my left leg. I’ve grown up wearing prosthetics, and today, at 31, they’ve become part of my normal. Yet in spite of this lengthy period of adjustment, I still choke on the word ‘disability’.

I avoid uttering the phrase ‘I am disabled’. I do not like attaching the “D” Word to myself. If necessary, I try to be careful to say that ‘I have a disability’. I’m prepared to to acknowledge that I have a disability, but I am very resistant to the idea that it is central to my person.

The Oxford English Dictionary defines the prefix ‘dis-‘ as ‘denoting reversal or absence of an action or state’. It defines ability as ‘possession of the means or skill to do something’. The World Health Organization’s definition almost makes me gag: ‘Disabilities is an umbrella term, covering impairments, activity limitations, and participation restrictions. An impairment is a problem in body function or structure; an activity limitation is a difficulty encountered by an individual in executing a task or action; while a participation restriction is a problem experienced by an individual in involvement in life situations.’ I’m left with this sense of being discredited and dehumanized as a result of a physical trait that I cannot change.

My problem with the “D” word is the emphasis – it creates identity through that which is not. This conflicts directly with the way I approach living. I look around and see endless possibilities.

Yes, many things require persistence and a bit of brainstorming, but usually I feel more limited by perceptions of my prosthetic, and my fear that it will be perceived as a weakness or a fault, than by the prosthetic itself.

None of the accepted synonyms are any better. My good friend Malcolm Daly likes the word ‘gimp’. In fact, he often refers to ‘gimps’ and ‘normals’. I must admit, I was initially uncomfortable with the idea of being a ‘gimp’ but I have come to prefer the word to ‘disabled’. However, I think it is unlikely that ‘gimp’ will enter into common usage in the English language.

Let’s face it, saying ‘there is a physical part of me that deviates from what society defines narrowly as normal’ is a bit of a mouthful, and I have not been able to come up with a decent alternative to the word ‘disability’.

The “D” word, and to whom it applies, needs to be reconsidered. Let’s start that process now.