An Interview with Linda E. Clarke 

For a decade, Linda Clarke and Dr. Michael Cusimano had offices across from one another at St. Michael's Hospital in Toronto. She worked in Clinical Ethics and he was a staff neurosurgeon. They knew one another to say hello, to nod as they passed one another on the stairs, to wish each other a Merry Christmas. Michael's patients sat in the chairs along that shared hallway, waiting for their appointment with him. For ten years, Linda heard their talk outside her door, smiled at them as she passed by, tried to give them their privacy. She was always impressed by the things people endured. 

Ten years into her work, Linda got sick; she left her job and, weeks later, she sat in one of those hallway chairs, waiting for her appointment with Dr. Cusimano. In the blink of an eye, she was a neurosurgery patient and he was her surgeon. 

Linda and Michael wrote "In Two Voices" together: it is the intimate account of Linda's surgery with Michael as her surgeon. The story builds a piece at a time as Linda and Michael tell each other their experience and then respond to one another's writing. As the relationship shifts from one of patient and surgeon to one of Linda and Michael as colleagues and friends, they encounter surprises as their trust and mutual understanding develop. Here is an unprecedented view into the experiences of illness, care, and compassion, an intimate picture of the experiences, challenges, skills, and commitment of a surgeon. The worlds of both surgeon and patient are framed by a most critical and delicate surgical procedure.

This is a very intimate book for you. After all, it’s telling the story of a sickness and surgery that you experienced. With that in mind, what was it like to have a different perspective, that of Dr. Cusimano (MC), on this very personal experience of yours? 

It’s a story of sickness and surgery from “both sides of the gurney;" it’s not only my story, it’s MC’s as well. It’s a story about a relationship, about the power of stories told and stories received. It’s a story about surprise and compassion and a story about looking back. I didn’t realize it was as complex as it is until the story had been written. And I didn’t realize the intimacy of it until then either. The act of telling a story like this is intimate – for both me and MC –  and made even more so by telling it publicly in the book.   

As a writer and a storyteller, my story was familiar to me when I started this process with MC. I have often used my story in my teaching in healthcare settings and I have performed some of it and some parts of it have been published. I had no idea how much the story would change as this process unfolded. I embarked on working with MC to give him the chance to see the value of story when looking at the experiences of our lives. As the reader will discover, the story sure can change when told in dialogue with someone else. (Especially the brain surgeon who dug through your brain.) It becomes new.

Years ago, MC commented to me that touching a person’s brain is a uniquely intimate act. Since then, I’ve been privileged to witness numerous neurosurgeries and, thus, numerous people’s brains. It’s pretty amazing to know that in that brain are the memories and the tastes and the songs and the loves and the car accidents and the lost teeth and the dirty floor and the weedy garden and so much else that makes the person who she is. 

Only once in a very blue moon do I allow myself to realize what happened when my brain was under MC’s hand. It’s too intimate.

What was your writing process like, given that you were working with a second author?

Our writing process was challenging and interesting and, occasionally, frustrating. We wrote the book over email: building the story a piece at a time. We started smoothly, exchanging segments of the story, responding to them and writing another step in the tale; then the exchange was more hesitant. In one case, it was months of waiting. Imagine the moment I learned that the story was different than I had known it to be. One dull Spring day I finally received his next part of the story and I learned things I had not known, or possibly remembered. And it made me catch my breath.  

 

Now I know that the delays came from mutual concern about writing difficult parts of the story, from worry about how the story would be received by the other. A story can be fragile ground indeed.  

Is there any part of your book, one moment of your journey from diagnosis to recovery, that you would like your readers to pay particular attention to?

Hmmm… I’m not sure there’s one specific part I would draw attention to. It is a layered story and, even though it is a slim volume, it is dense. I’d really like a couple of things for the reader. I’d invite them to pay close attention to which of the layers of the book most effects her. Such awareness can be a good point of entry into personal reflection. What does our story prompt for the reader? What sticks? For example: does the story of the golden-haired boy stay with you? Or the story of the family in the ICU who is waiting for news from the surgeon? What does that mean? How does it move you? And I’d like to draw the readers’ attention to the ways the co-writing of the story affects it. There are, for example, frequent shifts in pronouns used: from “you” to “she” or “he,” for instance. What does this reflect?    

Do you have any advice for someone who might find themselves in a similar situation to you (with difficulty getting the right diagnosis or with a lengthy recovery period)?

Advice is a slippery thing and is too often given unsolicited to the person who is sick. Everyone has advice to dispense: you should walk more; you should eat differently; you should stop worrying; you should go to this doctor, or this one, or that one; you should go to a chiropractor, dentist, massage therapist; you should see a therapist; you should pray to God. Trust me, I ran in circles looking for help to feel better. Trust me, I prayed until I wept, I even went to church. Trust me, I spent a fortune on alternative practitioners both credible and shady. I tried so hard and, when it didn’t work, I felt like a failure. And, sadly, many were quite prepared to blame me for missing something, whining, being lazy, not having the right attitude. The isolation of my illness was made worse by this. Not only was I sick, and therefore not able to do the things that had once made me valuable, I was also a failure. I felt small. 

I was in a particular situation that put me in a unique place within the hospital and the healthcare system. Something as strangely random as the location of my office, helped me be seen and to get care, eventually. My experience (including the writing of this book) is unique, framed as it is by the privilege of working in healthcare and working with my former neurosurgeon. I have no idea how a civilian would have handled this. For me, suffering as I was, I was in a place I knew and in which I was known and that is an important part of the story.  

If I were asked for advice, this is what I would say: have more compassion for yourself. I would say: be kind and know that illness is not a failure or a weakness and that there is no shame to being in pain. Trust that you know your body. I would advise doggedness. The thing is, you’re sick, and having the strength to be dogged is seriously lacking. So, you must have an advocate – a family member, a partner, a friend. You will not have the energy to do all of it yourself. There is simply too much to carry on your own. There is nothing wrong with asking someone else to field calls, to ask someone to go with you to appointments, to listen carefully and to help you to understand it. Ask someone to go grocery shopping for you. Stop trying to act like you’re not sick. You will get so very tired. My advice is to ask for help. And accept it when it comes. 

My most important piece of advice: find the person who will hold you when you’re in pain. Find the person who lets you cry without telling you that you’ll be fine. Find the person who will stick with you. Period.  

Other than your own book, what is one book that you recommend everyone read?

When I was so sick, some kind-hearted people gave me books that posited all sorts of theories about what was making me ill. The books were, at least, unhelpful and, at most, offensive. One of the primary experiences of being sick is the growing isolation from the regular world. It can be very, very lonely. My pain caused me to step away from the world I had known – I left my work, I dropped out of university and I couldn’t see friends or family as often as I had once done. I felt alienated. 

Very occasionally, I came upon a book by someone who understood the illness experience and, often, that made me feel less alone. Connection is one of the things that helps us cope with illness and surgery and recovery and connection may be wrought on the written page as well as in the flesh and blood. But choose carefully.

I’ll go out on a limb here and suggest that people take a look at the NYU LitMed Literature and Arts and Medicine Database. That’s a lofty title for a database of resources for those interested in the way arts and medicine can come together to capture the experiences of the patients and the care providers. It’s resource I’ve often used in my work and I find it has amazing books listed that those who are sick and those who are caring for them might find helpful.

In Two Voices is available from Chapters, Amazon, and your local independent bookstore today!

Pottersfield Press acknowledges the financial support of the Government of Canada for our publishing activities. We acknowledge the support of the Canada Council for the Arts. We are pleased to work in partnership with the Province of Nova Scotia to

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