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Yesterday, I had the opportunity to be part of the first annual Provincetown Book Festival. There were wonderful readings by poets, novelists, memoirists, and others, great discussions, and a book fair, where authors displayed and sold their books. Along with 14 other authors, I spent the beautiful sunny day sharing my work and selling and signing my book.

I was a little concerned that people in a vacation spot like Provincetown might not be interested in buying a book about caregiving, death and dying. What surprised me was how many people shared their own stories with me – deeply personal intimate stories of illness, caring for parents, and coming to terms with death.

Many of the people who approached my table shook their heads when I told them what the book was about – not because they weren’t interested, but because their parents were dead. “I cared for my parents into their nineties,” one woman said. “And we cared for my partner’s parents too. It was a long stretch.”

Not surprisingly, given the fact that daughters by far and away do the work of caregiving in comparison to sons, most of the people who stayed to talk with me were women. Now in their 60s, they were beginning to think about their own aging process, and who might care for them. “I better give that book to my kids,” one woman laughed. “It’ll be their turn soon.”

For those women who don’t have offspring to whom they can turn, the options may be more limited. Nieces (and nephews) may be willing to take up the task of caring for their aging aunts (and uncles) – but it’s likely they’ll have their own parents to worry about already.

As Baby Boomers, many of us are fiercely independent, and dread the thought of becoming a burden on our children or family members. I urge readers of my book to begin talking about these issues now, before it’s too late, and we find ourselves in a state of emergency. What heartened me about yesterday was how many people were more than willing to have these discussions – with one another, with other people who approached my table (and my fellow writers, and with me.

A couple of women who came by the table said that the topic of my book was just too close to home. Two women had recently been diagnosed with cancer, and were undergoing treatment. A stark reminder of how present cancer and other illnesses are in all our lives.

This willingness to talk openly about life and death is one of the reasons why I love being in Provincetown. Yes, lots of people are here to spend their days at the beach, before relaxing at the tea dances, restaurants, and bars, but many others still carry the memories and images of how AIDS devastated this town in the 80s and 90s. Provincetown has a higher proportion of people with HIV/AIDS than the rest of the country, and year round Provincetown residents work with and support the services that sustain people with HIV/AIDS. They are more than willing to share their stories with me over a glass of wine at the bar where I love to write.

Sometimes I worry that too many people have their heads buried in the sand when it comes to illness, death and dying (as in, if I don’t talk about it, it won’t get me!) Being able to have talks such as the ones I’ve had here in Provincetown give me hope that some people are embracing the opportunities to talk.

PS: The book fair got terrific coverage in the Cape Cod Sunday Times!

Here’s the link to the story:

http://www.capecodtimes.com/news/20160918/authors-drawn-to-provincetown-book-festival#ReaderReaction

 

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It’s been almost a month since I last posted here. I’ve been madly writing away – having such a wonderful time writing, despite the heaviness of the topic. And now I am writing in Provincetown – the place where I have been coming to write every year since 2001. That year was a significant one for me – though of course I didn’t know it at the time. My sister had died four years before and I was, of course, still coming to terms with that huge loss in my life.

That spring, I started searching for a workshop where I could return to creative writing – something I’d more or less given up what with the demands of raising two children while teaching and doing academic writing. Someone or another (I honestly can’t remember!) I came across the Fine Arts Work Center, an amazing place started by writers and artists (including Grace Paley, and Stanley Kunitz among many others). I arrived here that year in late August, with my computer and some blank paper and not much else. And I started writing again.

Each summer I’ve returned here. It is a place with a tremendous history as an artists’ and writers’ colony. This weekend is the annual Tennessee Williams festival. Williams, Eugene O’Neil, Norman Mailer and of course Mary Oliver have all lived and written here by the sea. The one main street, Commercial St., is lined with art galleries of every description. Even if you’re not an artist (as I am not), the light and the water and the galleries and the air all inspire me to draw at least a little. But mostly I write.

And at the end of the day, I find my way to one of my favourite hangouts for a glass of wine and some editing time. Inevitably, people ask me what I’m writing about, and so the stories begin. Last evening I met a woman who sat with her best friend as she was dying. And has since sat with almost a dozen friends and family members. Everyone, it seems, has a story.

I’ll be glad to be back home in Ottawa early next week, but I’ll carry this place and its inspiration and my pile of writing back with me. Until the next time!

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As readers have no doubt guessed, the internet connection here is no better. At times (like this) I have a very weak signal in my studio (corn crib) and if I’m very patient, I can write a few words – and then give the computer time to catch up with me. Not simple for me, since I write very quickly but perhaps a good reminder of the importance of slowing down and being in the present moment…. A reminder that I seem to need on a regular basis.

I’ve had an amazing time here, in the company of my family (my sister, my parents), long dead now but here in the pages and pages of writing about them and on my wall, in photographs, lining the walls. It’s difficult, sad, painful sometimes, and sometimes joyful to write about the people I’ve lost. But in this space, all by myself with my words and my memories, it feels safe to probe those memories and construct the story I know I want to tell.

“My” hospice people are here too – in stories and memories – all laid out now on the bed in my studio. It has been amazing to revisit those stories, many of them contained on illegible scribbles of writing in my hospice stories file. There I can remember some of the wonderful and funny moments – singing songs from the 20s and 30s with an elderly woman who could remember very little about her current circumstances, but knew all the words to songs I’d learned from my mother. I love to sing (and am happily playing my ukulele here in the studio) and finding ways to share music with patients has been a real source of joy for me (and the patients, I hope) over the years.

In writing about my sister, I’ve turned to stories about our growing up – as the middle children of our family of four girls. I was my sister’s sidekick for countless adventures (selling Regal stationary door to door, for example) and I love recalling those stories.

At hospice, we often remind ourselves  that people are more than their illnesses. It can sometimes be challenging, since we meet people at hospice when they are nearing death and the ravages of their disease can seem like all that is present. But the photographs and cards, the visitors and items from home, and most of all the spirit of the person in the bed, all remind us that we are in the presence of a unique and wonderful human being. And it is an honour and a privilege for us to be able to accompany them at this vulnerable and challenging time.

So, those are among my thoughts as I return to my writing this morning – hoping that the internet connection will last long enough for me to post this message.

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Despite my determination to write several posts from Virginia, I’ve bee thwarted by the very sketchy and sporadic internet access here. We’ve had a winter storm too which meant no access for a whole day! Yes, my life is hard. But I’ll give this a try now, before the connection goes again.

I’ve been working on the section of my memoir that is about the hospice – a collection of stories and small essays that I’ve written over the past 10 years or so – a couple of been published, but most of them have remained stored away in a file box, awaiting the necessary revision and editing. It’s always intimidating for me to open up one of these boxes of writing, as it feels like such a long stretch of time has passed since the original writing (and the events they describe). Of course, the issue of confidentiality also arises (and more or less renders me silent when I think about it) but I’ve worked hard at anonymizing the stories, and pulling out themes rather than depicting specific events. 

Sitting in my little cabin/writing studio, reading these stories, has been deeply moving for me. I’m struck by how much things have changed since my early days in the residence (starting in December 2001). In those early days (the residence only opened in January 2001), we were much more of a team – staff and volunteers – and we were called upon to help with just about everything. I loved having the opportunity to help with a bed bath or personal care or getting someone get dressed. The staff would always preface a request with something like, “Are  you comfortable with this?” and we always felt like we had the opportunity to say no. Mostly I said yes, though, because I was keen to learn everything I could. And to use the opportunities of bathing or feeding to get to know the residents a little better. As we’ve become more “institutionalized” (for want of a better word), staff and volunteers have become much more “silo-ed” in their jobs, and I find that we are called upon to help in those ways less and less.

There were many times in the first few years when I would be asked (or offer) to sit by the bedside of someone who was actively dying. It felt like the most important job in the world (since we are committed to making sure no one dies alone, if at all possible). I always felt honoured to be able to sit with someone who was dying, and to hold the place of a family member (if there were one) while they made their way to the hospice.

I have a big fat purple folder called “hospice stories” that’s filled with items from those first few years. A funeral card. Countless obituaries from the paper. Pieces of my own writing. As I sat with that file, I could see the faces of the men and women I’ve cared for and felt moved once again by the privilege it is to volunteer in a hospice.

Being here, with all these stories, working away on my writing, reminds me of just how important the work of hospice volunteers is. I’ve written about us as the heart and soul of hospice. And I truly believe that we are. I am privileged to be able to honour our work through my writing.

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