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Four Books About Life With Illness

When I was a kid recovering from heart surgery, I was given the Madeline book where Madeline has an operation to have her appendix out. The grown-ups pointed to Ludwig Bemelmans’ lovely scribbly illustrations and said, “see, she has a scar just like yours!”

I thought it was great. I was mega-impressed.

While the connection between reader and protagonist comes down to more than ‘do they or don’t they have a scar like yours’, it is great, nonetheless, to find books that allow for deviations from ‘normal’ life. Books that allow for interruptions – a scar, an operation, time spent recovering in a simple white room where,

“… a crack on the ceiling ha[s] the habit

of sometimes looking like a rabbit.”

(from Madeline, 1939)

So as an adult, I have loved finding such books. I don’t always relate to every aspect of them, but mostly, they help put the ‘disease bits’ of my life into context. Here are four such books I have found over the years that in some way explore life with illness. Not all of them are exactly on par with each other in terms of literary excellence, but all of them are wonderfully (and horribly) realistic and honest about living with disease.

1. The Girl in Times Square by Paulina Simons

I don’t, as a rule, read much ‘popular fiction’. Ahem. A friend recently called me ‘elitist’ three times in one evening, so I hereby apologise for my wanton snobbishness, and state my belief that such material serves a crucial function in life; like mac cheese out of a box when you’re too tired to cook the usual fettuccine ai fungi porcini.

Mmmmm... Mac cheese...

The Girl in Times Square is a gripping read. As well as a young woman with leukemia, it has a spunky cop boyfriend, a winning lottery ticket, and a who-dunnit murder mystery to rival any CIS episode. Isn’t that what they call ‘awesome holiday reading’? (Please excuse me while I swap my black turtleneck and beret for a bikini and a cocktail with lots of fruit and a pink umbrella.)

I don’t have leukemia. Thank goodness. But I did appreciate reading about another young person worrying that illness made her unattractive to the opposite sex, depressed about being unable to keep up with friends, and dealing with scary life-or-death decisions.

So I did enjoy lots of things about this one, even if, overall, its’ plot didn’t need to be quite such thrillerific melodrama.

2. Sick Girl, by Amy Silverstien

THIS book is much better. Mostly. This is the only book on my list that has a protagonist with actual heart problems.

There is nothing scary in quite the same way as having something wrong with your heart. You only have one, and it keeps you alive. If it stops working you could be dead in seconds. There it sits – in your chest – you can hear it most of the time, doing whatever weird thing it does – beating too fast or off-beat, even slowing down at times until you think it might decide it can’t be bothered to start up again.

“Thump – thump, thump – thump, thump, thump, thump, thump-thump……Thump……… Thump………. Thump………………?”

Amy Silverstien is twenty-four when diagnosed with cardio-myopathy. She eventually undergoes a heart transplant and then lives for an unheard-of twenty plus years, and is, in-fact, still alive. In her book, she writes passionately and honestly about diagnosis, transplant, and both the physical and psychological difficulties of life with illness.

Echo cardiograms.

Catheter exams.

Anti-rejection drugs.

Weird doctors.

Upset family members.

How it feels to suddenly get short of breath walking up what no healthy person would ever consider to be a hill.

Being pissed off when old people in tracksuit pants and sneakers overtake you when you’re out for a walk.

Grrrrr. Stupid fit old people.

This book is also wonderfully different from other health memoirs out there. Silverstein is not into being optimistic and inspirational, and nor is she a cooperative, ‘well-behaved’ patient. She is nasty about a cardiologist’s physical appearance, sometimes bursts into loud inappropriate sobs, is rude to ‘big important specialists’ (something I’ve never had the nerve to do), and generally pisses everyone off with her constant whining.

Terrific stuff.

I did get a bit tired of hearing about long-suffering ‘angel-husband Scotty’, and wished for a more thoughtful approach to how her illness might have effected their relationship. However, the lovely pure streak of radicalism that comes through this book outweighs its slight deficiencies. Sick Girl is definitely worth a read for this reason.

3. The Spare Room by Helen Garner

This is a beautifully written book by one of my favourite authors. It also has an unflinching approach to living with illness, and facing death at the end of it.

In The Spare Room protagonist Helen agrees that Nicola, an old friend who is suffering from cancer, can stay with her for three weeks to undergo life-saving treatments at a nearby ‘alternative medicine’ clinic. Tensions arise when the clinic turns out to be dodgy, the treatments don’t work, and Helen discovers that her friend is in complete denial of the terminal nature of her illness.

It was both good and gut-wrenchingly awful to witness the cracking of Nicola’s extreme, yet ultimately damaging optimism, and then her half-hearted acceptance of her own mortality.

Garner is an Australian author and The Spare Room, like many of her other books, is set in areas of Melbourne in which I used to live.

Garner’s constant references to Melbourne streets, pubs, train stations and other landmarks are layered with evocative descriptions of people and events. She subtly crafts an almost tangible world for the reader.

And I love observations like this: “The station was a seven minute walk from my house, twenty if you had cancer.” When a Melbournite myself, it would have been, “my house is a two minute walk from the tram stop, five if you have heart problems. Ten if you’re also wearing fashionable jeans that restrict your breathing.”

Also refreshing about this novel, is that Helen gets so damn angry about everything. When not grumping and grumbling, she rages and seethes her way through this book. She is angry at the shonky clinic, furious at the cancer, and, most un-PC of all, completely enraged at her friend for being in denial over her own death.

This is not a light read, in any sense, but it is a good one.

4. The Cancer Journals by Audre Lorde

Audre Lorde was a poet, feminist, and activist who died of breast cancer in 1992.

Through several surgeries and recoveries, Lorde wrote journal entries, essays and poetry in an effort to fit her illness into the context of her own life and the Black lesbian community she belonged to. She compiled these into a book called The Cancer Journals.

In one of the essays, Lorde explores the concept of prosthesis in relation to breast cancer.

Prosthesis is usually about functionality – for example, having a prosthetic arm or leg fitted. When women have a breast removed due to cancer, prosthesis is recommended mostly as a cosmetic measure. In The Cancer Journals Lorde rages against well-meaning nurses and doctors who insist that wearing one will ‘make her feel better.’ She points out that wearing a prosthesis will not make her feel different in the slightest. Instead, it is the nurses and doctors who wish to feel better, and society that wishes to pretend that breast cancer doesn’t happen.

Lorde’s book made me think about how the idea of illness as something that needs to be hidden, marginalises disabled and chronically ill people.

We have Pink Ribbon Day, Yellow Ribbon Day, Dafodil Day, Periwinkle Ribbon Day if you have pulmonary hypertension, and many other ‘days’ where we are encouraged to wear bright, pretty and unobtrusive little pins to show our support for various causes. However, seeing one of these pins does not give one the same jolt as the sight of a woman with the outline of only one breast under her suit jacket. Or as the sight of someone wearing an intravenous Flolan pump so that their pulmonary hypertension doesn’t kill them. Surely, these sights communicate a need for a cure far more effectively than a coloured peice of ribbon.

And they would also communicate this: illness happens. Not everyone is healthy. Sickness and even death, happen. Deal with it.

Missing body parts aren’t part of my illness, obviously. But keeping up a pretense of health and ‘normality’ is. It’s the un-talked of burden that sick people endure: smoothing over the jagged parts of our lives for a society obsessed with beauty, youth, health and vitality.

This book is also valuable for Lorde’s exploration of the death process. She talks very openly about her fears, and the ways in which she hopes to be prepared for death, when it comes. I’m crap at facing death. It’s one of those things I’m always intending, but never quite get around to doing – like my tax return, or sorting through old university papers. In fact, one of these days it will appear on one of my endless ‘to do’ lists:

“Damn it, I have to confront the prospect of dying today! Um, maybe I’ll go to the supermarket first… ”

Lorde, however, delves fearlessly into the subject. It makes for scary, yet enlightening reading. She writes, “… once I face death as a life process, what is there possibly left for me to fear? Who can ever really have power over me again?”

Empowerment through illness. What’s not to love?

Here endeth our list of books. I hope somebody out there in internet-land finds it useful. I’m tired and going to bed now, so I suppose I’ll end the way that Ludwig Bemelman does:

“And that’s all there is, there isn’t any more.”

Except that it’s not true – there are  many more books out there about life with illness – I came across heaps while I was writing this post. If anyone reading this (if there is, in fact, anyone who reads this blog) knows of any such books, please write about them in the comments section below.


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