This isn’t an easy post to write.

Many who are regular readers of my blog will know that my Mom died in December. The sadness surrounding her death has lessened. Now I’m faced with the reality of cleaning out her condominium and getting it ready to put on the market. I’ve made progress and there’s still much to do.

In addition to this and my regular work commitments, I’m also leading a 3-day training program in April for a new group of Victoria Hospice Life Stories volunteers. And in May I’m giving a workshop on Life Stories at the annual conference of the British Columbia Hospice and Palliative Care Association.

I’ve been feeling overwhelmed and need to make some changes.

Starting next week I’ll only post articles twice rather than three times a week. The Monday’s link roundup will continue  with fresh updates as will an Encore! article drawn from my extensive archives. When I can get my head above water, I’ll look at resuming my regular postings.

I’ll miss writing for you. I feel a real connection, especially with those of you  starting your personal history businesses. While I’ll not be composing much original material for a while, I haven’t gone away.  I’m always available for  advice or help.  Just ask.

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Photo by LOSINPUN

Mom at twenty-three

Those of you who are regular readers of my blog know that every Monday is devoted to Monday’s Link Roundup. This Monday is different. Yesterday Mom died at Victoria Hospice at the age of ninety-three.

Mom always believed that when she transitioned to that other side, she’d be met by my Dad,  Ed Curtis, who died in 1990. I like to think she was right.  And whether by coincidence or design her death took place on their seventy-second wedding anniversary. They were married December 18, 1939.

Throughout my life Mom was one of my biggest fans and supporters. In many ways she introduced me to story telling at an early age. An avid reader, her favorite activity before going to sleep was to read a few pages from her latest book. Every morning I would eagerly run into her bedroom to sit by her bed. There, she would relate the latest installment – no doubt censoring some of the racy bits for the ears of an eight-year-old.

She also regaled me with stories from her teenage years when her family homesteaded in the wilderness of northern British Columbia.  Eagerly absorbed by a young boy were tales of encounters with grizzly bears, hunting, and snowy winter nights, hunkered down in their log cabin.

People have remarked that it’s sad that Mom’s death came so close to Christmas. In part that’s true. I certainly haven’t had time in the past few weeks to think much about the holiday season. But central to this time of year is the message of peace, comfort, and joy. And I’ve experienced all of those in a personal and profound way. Mom and I were surrounded at Victoria Hospice by loving and compassionate care. Her final days brought her comfort and her death was blessedly peaceful. And we had joyful moments – reminiscing about Christmases past, enjoying cups of her favorite tea from her favorite cup, and laughing at this comedy called life. One of the last things she said to me, opening her eyes briefly was, “Having fun?”

I miss her dearly. My world has changed forever. But surrounded and supported by my loving partner, friends, and colleagues I’ll carry on doing honor to those values she tried to instill in me – kindness, loyalty, grace, and a good sense of humor.

Thanks, Mom.

• Cooking Tales: 10 Delicious Memoirs from Chefs. “The past few years, we’ve watched “foodie” culture explode into prime time, elevating many chefs to celebrity status. It’s no wonder, then, that the chef memoir has become as much of an art form as cooking itself.”

• For Dying People, A Chance To Shape Their Legacy. “Imagine that you’ve just been told you have only a short time to live. What would you want your family and community to remember most about you? In St. Louis, a hospice program called Lumina helps patients leave statements that go beyond a simple goodbye.”

• Vanity Fair. Writers Reading: Susie Bright Reads from Big Sex Little Death. “Susie Bright has never been one to shy away from discussing sexuality, erotica, and feminism, becoming one of America’s leading “sexperts.” In her new book, Big Sex Little Death: A Memoir (Seal Press/Audible), Bright traces her entertaining and influential political/sexual revolution—from a fearsome Irish Catholic Girl Scout to teenage radical in The Red Tide and International Socialists to co-founder of On Our Backs, the first erotic magazine created by women.” [Thanks to APH member, Catherine McCrum for alerting me to this item. ]

• The Book Surgeon. “Using knives, tweezers and surgical tools, Brian Dettmer carves one page at a time. Nothing inside the out-of-date encyclopedias, medical journals, illustration books, or dictionaries is relocated or implanted, only removed.Dettmer manipulates the pages and spines to form the shape of his sculptures. He also folds, bends, rolls, and stacks multiple books to create completely original sculptural forms.” [Thanks to Beth LaMie of One Story at a Time for alerting me to this item.]

• The Basics of Video Editing: The Complete Guide. “These lessons concentrate primarily on editing video in Final Cut Pro and Adobe Premiere Pro, but that doesn’t mean they won’t be helpful for other editing software. The idea behind having the lessons with both applications is to demonstrate that when you learn one editing application it’s pretty easy to learn another.”

• Modern challenges greet oral historians meeting in Little Tokyo. “They collect, preserve and share the voices of the past. Changes in technology could give them a far wider audience — and even more video — if that’s what they want.”

• Before I die I want to… “A little over a month ago, installation artist Candy Chang turned the side of an abandoned house in her New Orleans neighbourhood into a giant chalkboard where passersby could write up their personal aspirations.”

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I’ve been writing about the value of life stories in palliative care since 2008. I felt it was time to assemble these articles in one place for those of you who are interested in this subject. The posts are arranged chronologically from the most recent to the oldest.

• Part One: Life Stories and Palliative Care: Your Questions Answered.

• Part Two: Life Stories and Palliative Care: Your Questions Answered.

• A Personal List of Books on Dying.

• Life Stories and Palliative Care. When Time Is Running Out, What Do You Focus On?

• How to Establish a “Life Stories” Hospice Program. Part One

• How to Establish a “Life Stories” Hospice Program. Part Two

• 7 Essential Questions to Consider Before Offering a Personal History Service to the Terminally Ill.

• Caution: End-of-Life Interviews May Unlock Traumatic Stories.

• When Small Can Be Profound.

• How to Interview Someone Who Is Terminally Ill: Part One

• How to Interview Someone Who Is Terminally Ill: Part Two

• The Year of Magical Thinking.

• How Life Stories Can Benefit The Dying.

• How to Say Goodbye.

Photo by David Hsu

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Previously I have written here about interviewing people who are living with a terminal illness.  There are benefits for patients  in capturing the stories of their lives and conveying special messages to loved ones, but a word of caution. It can also be a time when traumatic incidents from a person’s past can resurface. These could involve physical or sexual abuse, loss of a child, and so on. You’re not likely to encounter such stories  but it … Read More

This week I continue with answers to the “burning questions” that  participants asked in my workshop, Life Stories as Healing, at the Association of Personal Historians conference. You can read more questions and answers in Part One here.

What event or events in your life made you decide to do this work?

I find it’s often difficult to determine at what point an idea begins to germinate. I know that when I was thirty-two, a dear friend died in a car crash. I had seen her just the day before. She was a vibrant and compassionate individual and then she was gone. From that moment I knew that “death” was a companion on my journey.

However, it wasn’t until two decades later as a documentary filmmaker that I shot, directed, and edited a series for the National Film Board of Canada, entitled Bearing Witness. It followed three individuals who were living with a terminal illness.

As part of my research for that series I spent time at Victoria Hospice talking to nurses, counselors, doctors, and volunteers. I admired and I liked these people. I decided that once I had completed the series, I wanted to become a Victoria Hospice volunteer. In 2005 I completed my training and I’ve been working there ever since.

If you have only weeks to capture the essence of a patient’s life, do you invite the family to finish telling the story?

So far most of the patients who agree to our Life Stories interviews have only weeks to live. If we have six or seven weeks, we can usually record up to five hours of a person’s life story. If it looks as if time is running out, we may skip to topics that the patient feels are crucial.

The Life Stories interviewer always works with a patient to determine what that patient wishes to record. In some cases it’s a personal history from birth to the present. For others it might be a Legacy Letter or Ethical Will. It varies.

We haven’t  invited family members to complete a life story. They are usually too emotionally exhausted to consider such a request.

What do you do if you as the interviewer begin to cry?

As an interviewer I’m a human beings with feelings. The stories I hear have moments that are sad and I feel sad. I try to keep in mind that this is my subject’s story. It is not about me. I don’t want to start crying and have the attention shift from my subject to me.

There are times when what I hear  makes my eyes moisten and I express my sorrow at my subject’s plight. But I keep some reserve in that moment. I save the tears for later when I’m home and can receive the support I need from my partner.

Should one raise or not raise the issue of death?

I wish I could say that there’s one rule fits all but so much depends on your subject and the rapport you’ve established. Some patients want to talk about facing death and others don’t. What is important is to judge how comfortable you yourself are with death and talking about it.

I have asked some of my palliative care clients what they fear about death and in most cases they are quite open and honest with their reply. We need not shy away from talking about death but we must be sensitive to the needs of our clients.

Are men reluctant to discuss emotional issues? If they are, should the interviewer draw them out or respect their reluctance?

Male aversion to emotional issues is something of a generality and quite often true from my experience. Men prefer to talk about what they’ve done and where they’ve been than get into “messy” emotional stuff – not all men but a good number. In fairness though, to be facing your imminent death is tough and raises all kinds of feelings – anger, fear, grief, and panic. I’ve had some men and women who’ve made it clear to me that the only way they can get through the interviews is by avoiding highly charged subject matter. I respect their wishes.

When shown respect and compassion it is not uncommon for men to go from a reluctance to talking about emotional matters to being quite open about their feelings. A word of caution. As personal historians we are not  therapists. It’s not our role to make people feel better. That’s for the professional counselor. In fact we all need the names of several counselors we can refer our clients to, should the need arise.

Has pain on the part of a patient in palliative care interfered with your ability to help a person to tell their story?

For the most part pain is usually managed reasonably well  by the time we start to work with a patient. However, there are other issues that can make it hard to record a person’s story.  People can become drowsy or at times muddled from the effects of their disease and medication. There can be bouts of nausea. Overwhelming fatigue can render people speechless. In these circumstances we wait until the patient has recovered sufficiently to continue. Sadly, in some cases, there is no recovery and the patient’s story remains incomplete.

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Photo by Derrick Tyson

I recently participated in the Association of Personal Historians annual conference in Victoria, BC. One of my presentations was  Life Stories as Healing: Working in an End-of-Life Environment. In the workshop we looked at some of the skills needed and challenges faced in providing life stories for patients receiving palliative care.

Near the end of our session I asked participants to write down one “burning question” they wanted answered. We  had time for only a few. I decided that for those who didn’t have their questions answered I would deal with them here. I thought that those of you who weren’t at my workshop might also appreciate seeing the questions and answers. Next week I’ll tackle further questions in Part Two.

How does one set up a personal history program with a hospice?

There is no one right way to set up a program. Much will depend on the local circumstances. From my experience with Victoria Hospice  I’ve learned a few lessons and passed these along in two articles How to Establish a “Life Stories” Hospice Program. Part One and Part Two. For those of you interested in the possibility of a life stories program at your Hospice, these articles would be a good place to start.

Why not charge for life stories work at a hospice? Why should this work be voluntary?

If you’re a professional personal historian, you can request a fee from your Hospice for your services or provide it pro bono. That decision is really up to you and your Hospice.

As a rule, I don’t volunteer my professional services. What I do at Victoria Hospice is volunteer on a regular shift just like the other volunteers. I’ve been doing that for five years.

With regards to the Life Stories program I established, I trained 12 Hospice volunteers, nine of whom are actively engaged in the work. I designed and ran the training programs and for that I was paid my regular fee. I don’t do life story  interviews with patients unless there is no one else available.

I still continue to do the co-ordination of the program on a voluntary basis but I’m working to hand this over eventually to another volunteer. My goal is to have the Life Stories program be totally self sufficient without my involvement. From the beginning I made it clear to the Victoria Hospice administration that I wanted to see such a service succeed but that I did not want to continue to be involved in its day-to-day operation.

Are your hospice “Life Stories” volunteers paid and do the families pay for the service?

Our Life Stories volunteers, save one,  are not professional personal historians and are not paid. They do this work as part of their contribution to Victoria Hospice. We do not charge families for this service.

I should add that from the beginning we decided to keep the service as simple and as cost effective as possible. We only provide unedited audio interviews transferred to CDs. We also provide a list of resource people in the community that families can hire should they wish to do more with their interviews.

How long is a typical “Life Stories” interview session?

To be honest there isn’t really a typical session. So much depends on the condition of the patient. We don’t schedule more than an hour but sessions can be as short as 10 or 15 minutes if the patient is weak or drowsy.

What is the typical time it takes for your volunteers to complete a personal history project?

Again, there is no typical length of time. We tell patients that they can use up to 5 hours of interview time to tell their story. Some manage that and others become too ill to continue beyond an hour or two. So much depends on the overall health of  a patient  when they start the process.

Given the fact that our patients are frail, it can sometimes take 6 or more  weeks to complete 5 hours of interview.

What if the patient is resistant to talking at all?

Our Life Stories program is only offered to those Victoria Hospice patients who request it. At any time a patient may opt out of the Life Stories program if they find it not to their liking.

Next week watch for Part Two.

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Photo by Kelly Sue DeConnick