Facing Mortality Head On

I’m proud to announce the posting of an interview with me about my new book — The Amateur’s Guide To Death and Dying; Enhancing the End of Life. The interview is posted on IJ Wood’s site, Conscious Departures.

Click on the Conscious Departures banner above for the full interview.

Several months ago I became I became acquainted with Richard Wagner Ph.D and had the pleasure to read his book The Amateur’s Guide to Death and Dying.  His work with people facing end of life issues is inspired and admire his fearless approach to going into territory most consider taboo and awkward.  Richard Wagner has been working with terminally ill, chronically ill, elder and dying people in hospital, hospice, and home settings for over 30 years. He facilitates support groups for care-providers and clinical personnel, and provides grief counseling for survivors both individually and in group settings.

He founded Paradigm Programs Inc, an innovative nonprofit organization with a mission to be an outreach and resource for terminally ill, chronically ill, elder and dying people. He was honored with the prestigious University of California San Francisco Chancellor’s Award for Public Service in 1999 for his work with sick, elder and dying people.

His book is a valuable contribution to the body of work available for coming to terms with end of life issues and one I wish I had when K was alive. Having been the primary caregiver and the one person who was with K day and night using a tool like this would have been invaluable. There comes a point where a person just doesn’t have the strength to do much, but they still do want to communicate. I could imagine K and I reading it together (me reading it aloud), and doing the exercises.  It could have provided a great format for the both of us to have those important and uncomfortable, conversations in an engaging way. At the very least it would have provided us a good platform to work with.

This is not a passive book. Richard Wagner takes an approach that makes the reader part of the story.  In it you become one of the participants in his work group along with a number of people coming from different cultural backgrounds dealing with a variety of issues from cancer to old age. You are a participant, not a fly on the wall, and if you allow yourself to enter his world and take the exercises to heart you will find yourself going through a very fulfilling process. For this reason I feel that this book must be approached when you or your loved one has the appropriate energy and mental acuity to take it all in. There are 10 members in the group, and if you intend to follow their contribution to the group it takes some effort.

I was so impressed with Richard’s approach and the experience behind the book that I felt I needed to meet him and do an interview. We met by phone. Here are his responses to my questions:

IJ: In your years as a health professional, what do you consider the biggest lessons you’ve learned about caring for someone with a terminal illness?

RW: I tend to lump health care professionals into two groups — healing and helping.  As a psychotherapist, I consider myself as part of the later group — those who help.

The biggest lesson I’ve learned is that precious few of us are able to face our mortality on our own.  This tends to complicate an already difficult situation, because few of us who are facing our mortality have people around willing to walk through this with us.

When I started to be present to sick, elder and dying people some 30+ years ago I began to see certain patterns develop.  Despite the uniqueness of each death I noticed two things that all these deaths had in common; they were difficult and lonely affairs.  Difficult because, in our culture we have a hard time recognizing when things are coming to an end, especially the things we enjoy.  This is a problem because being unable to acknowledge the end of something makes saying good-bye and thank you virtually impossible.  They were lonely affairs, because those who were dying often felt useless and disconnected.  It was like they were dead before they were dead.

IJ: How has this affected you personally?

RW: This had a profound effect on me.  Because I soon began to realize that the marginal status our culture assigns to the end of life, with all its fear, anxiety, isolation and anger is inevitably what each of us will inherit in our dying days.  I either had to come up with an alternative approach, or I would crash and burn.  I saw so many valiant fellow healing and helping professionals burn out; they just couldn’t face their inner turmoil and grief any longer so they had to leave the work they were doing.  And I did not want that to happen to me.

I figured there had to be a better way to deal with this fundamental fact of life.  So I decided to take a fresh look at my own mortality, because that seemed to be the most likely place to begin if I wanted to help others face their mortality.  In time, I became less anxious.  The monstrous thing I feared for so long was being transformed.  I was able to sit with death and not be afraid.  Death was no longer the enemy, she was becoming what St. Francis called her ‘sister death.’  Besides, death links us to the great round of nature.  I found that comforting.

When I began to ask the sick, elder and dying people I was working with if they wanted to join me in this endeavor I discovered most were up for the adventure.  I mean it was a no-brainer for most.  They knew better than I that few opportunities exist for them to connect with others similarly challenged in a purposeful life-affirming way.  I was encouraging them to take a lead role in orchestrating their finales; they were no longer expected to be unobtrusive, dependent on the kindness of others and to wait patiently for the curtain to fall.

IJ: What was your goal and inspiration behind writing the book The Amateur’s Guide to Death and Dying?

RW: Let me take you back to the early 1990’s.  I was successful in getting some like-minded people together for mortality-oriented support groups.  Initially there was some resistance, however, because most of the people who joined my early groups were only familiar with disease-based groups.  People with cancer met with other people with cancer if they met with anyone at all; people with HIV only met with other people with HIV if they met with anyone at all.  But I was proposing something really radical.  I was suggesting that facing one’s mortality had very little to do with a disease process, it had to do with simply being alive.  I had to keep reminding them that the thing that connected us was our mortality, not a disease, or aging process.

I figured if our focus is our mortality, we wouldn’t get bogged down with the medical issues we faced as “patients.”  This freed us up to find practical solutions to the end-of-life concerns each of us had.  And we would be able to receive the support we needed to design our own strategy for successfully navigating our final life passage.

By the mid 1990’s I had enough of these groups under my belt to create a pilot program for a nonprofit organization I had founded, PARADIGM; Enhancing Life Near Death.  I called it the Access Program.  It was seminar/support group hybrid, a two-hour a week commitment for ten weeks.

With the help of a handful of experts in their field, doctors, clergy, nurses, therapists and lawyers, participants were able to face their mortality head on.  They gained perspective on numerous issues related to modern dying … whether it’s filling out a durable power of attorney form, answering provocative questions about sexuality and intimacy, completing a death anxiety survey or personally designing a unique end-of-life plan … they were totally involved and engaged.  And this had a startlingly positive effect on the group members.

After a few years of successfully doing these groups I realized that I was reaching only a very tiny percentage of the people who might benefit from such a program.  Even when I was doing two groups simultaneously, one in the afternoon and one in the evening, I wasn’t able to keep up with the demand.  The only solution was to write a book.

I figured that if I could simulate participation in an actual PARADIGM, group in workbook form, my potential outreach would be enormous.

IJ: Who are you gearing this book towards?

RW: The short answer is — all those mortals out there.

My workbook is primarily for those currently facing their mortality — chronically, terminally ill, elder and dying people.  But concerned family and friends, healing and helping professionals, lawyers, clergy, teachers, students, and those grieving a death will all benefit from joining in.  Because, as we all know, none of us is getting out of here alive.”

IJ: The way you designed the book is unique.  What was your thought process for coming up with this idea?

RW: As I mentioned, it was imperative that The Amateur’s Guide To Death And Dying simulate participation in an actual PARADIGM, group.  Just writing a book about my experiences or my philosophy about living and dying simply wouldn’t cut it.  There were already a lot of those kinds of books in the marketplace.

If I was going to do this, it was going to have to be something really unique.  It was going to have to fundamentally change the conversation.  It was going to have to give those who were without a voice a chance to speak out about their concerns.  And it would have to advocate for the holistic self-determination for those facing the end of their life.

The most exceptional aspect of The Amateur’s Guide is its format.  Readers become part of an on-the-page support group.  Ten diverse fictional characters, representing a broad spectrum of age, race, and life situations inspire strong reader identification and provide essential role models for enhancing life near death.  This unique presentation exposes the reader to a myriad of life situations and moral dilemmas that arise as one faces his or her mortality head on.

Besides the group process, six presenters, each an expert in his/her field, offer timely advice designed to help the reader make the end of life less an intimidating process and more a rich, poignant transition.

IJ: What are you wanting people to take away from the process you put them through?

RW: I hope the reader will be able to celebrate our shared belief that living well and dying well are one and the same thing.  I hope the reader will find his/her voice as well as the confidence he/she needs to engage others in their end of live conversation.

I know that conscious dying has become kind of a buzzword these days and maybe it’s even lost some of its original meaning.  I think conscious dying means learning how to relinquish control before circumstances wrestle it away from us.  In many cultures detachment is an art form.  In many religious traditions detachment is a virtue.  Perhaps there is something here for each of us to consider.  Ultimate control has little or nothing to do with being able to manipulate externals, which I’m sorry to say, also includes our bodies.  Ultimate control is about inner peace and wellbeing.  And these are not dependent on being “well” or being “whole”.

And just to be clear, I’m not talking about adjusting deathbed pillows so that dying people can strike heroic poses for the edification of onlookers.  I’m talking about achieving a good death in the context of real dying—with all its unpredictability, disfigurement, pain, and sorrow.

IJ:What sort of reactions have you had so far with the book?

It’s all been exceptionally positive so far, even the reviews I’ve been getting from my end of life professional peers.  This kind of surprised me at first, because the book is such a radical departure from everything else in the genre.  But everyone seems to be enjoying the refreshingly new take on this age-old problem.  They love the interactive aspect of the workbook.  People are telling me that the fun, engaging yet poignant style of the book is helping them work through their own issues.

IJ: For further support, after reading the book what do you suggest people can do?

RW: Here’s the thing.  If you read through the whole book, if you participate in all the discussions, if you do all the homework and exercises you will, at the end of the book, be prepared for and have the confidence to discuss all your end of life concerns with the significant others in your life.

You will have everything you need to break open a discussion with your lawyer about estate planning and advanced directives.  You’ll have everything you need to address your intimacy needs with your intimate partner.  You will have everything you need to open a discussion with your spiritual advisor about your faith.  You will have everything you need to have a frank discussion with your physician about palliative care, comfort care and your thoughts about assisted dying.

The Amateur’s Guide To Death And Dying can be used to start your own group of people who want to face their mortality; even if that group is made up of just one other person.  You can see the ripple effect this will have, can’t you?  I hope the reader will take every opportunity to share what s/he learned with all those who might benefit, because, as you know, there are a whole lot of amateurs out there.

If you are interested in purchasing the book here’s the link:  The Amateur’s Guide to Death and Dying

Complete Article HERE!

None of Us Get Out of Here Alive

Another wonderful review of The Amateur’s Guide To Death and Dying; Enhancing the End of Life has appeared. This time the review comes from my colleague, the very talented author, Mikaya Heart. Her review appears on the Blogging Authors website.

Click on the Blogging Authors’ banner above for the full review.

In our society, death is a taboo subject, and many people won’t talk about it at all. I’ve always been fascinated with the process of dying, and how someone’s energy remains after they die, often affecting us on a deep level. I recently read a great book on the subject by Richard Wagner. A gay man, an ex-Catholic priest, and a psychotherapist, Richard was first exposed to the process of dying during the AIDS epidemic in the early eighties when his friends were dying in droves. I won’t say any more about his own journey since it’s all in the book, but rest assured—he knows what he’s talking about. As he says, none of us will get out of here alive—so let’s talk about how to make that process of transition easier.

Richard started a group called Paradigm specifically designed to help sick, elder and dying people and their friends and families avoid the kind of nightmares that he had seen repeated again and again, based on society’s phobia about death. Perceiving that basic information is being withheld from dying people, he ran countless groups on death and dying in the San Francisco Bay Area, and has helped thousands of individuals over the years. He took groups of ten people for ten weeks, inviting various experts to come and give presentations on different aspects of what is involved in dying: legalities such as wills and executors; talking to one’s family and friends; assisted dying; what to expect of your body as it gives up; spiritual aspects of dying, and other topics.

The Amateur’s Guide To Death and Dying is an in-depth account of one of these courses, profiling the ten people who attended it, each chapter covering a different week. Those ten fictional characters are, Richard says, “composites” of some of the real people who took his course over the years that he ran it. The reader gets to know the individuals very well (sometimes painfully well) throughout the course of the book, as they reveal their deepest inner fears in the safety of the group. They all become more familiar with the concept of death and how to deal with it. Some of them, interestingly, move further away from it, while some go the other way. They all become more empowered. This book is written from a personal perspective, which is essential for any good writing on such a personal subject. Richard deserves congratulations for being brave enough to deal with such a difficult topic in a very open, accepting and compassionate manner.

My only complaint is that I wanted more. Since this book is quite long enough as is, I hope that Richard and others will consider writing more books. Because, as a society, we have failed miserably in talking about the realities of death and dying, there is a great deal still to be discussed. How can relatives and friends help a person who is dying? Do dying people benefit from getting permission to die from those they are close to? How can we change our desperate need to hold on to what we call the state of living even when it is clearly time to let go? How can we learn to relate to the positive aspects of death? How does the energy of an individual affect us when they are no longer present in a body? Richard’s book touches on some of these very profound questions, but they (and many others) need to be addressed in greater depth.

Mikaya Heart is an award-winning author who writes on subjects as varied as orgasm, shamanism, sports, lesbianism, politics and travel. Her memoir, My Sweet Wild Dance, which won a Golden Crown Literary Award, was described as “soul-refreshment of the highest order.” Mikaya uses shamanic methods to teach people how to operate from a place of trust instead of fear.

The GroundSwell Project Review

More marvelous news! The second amazing review of The Amateur’s Guide To Death and Dying; Enhancing the End of Life has appeared in as many days.

The Amateur’s Guide to Death and Dying
Review by Emilie Collyer

‘None of the hard times I’ve seen, and I’ve seen plenty, lasted forever. Even this dying business will be over one day. I’ll just wake up dead one morning and that will that. What can I tell you?’

So says Max, an 86 year old man dying from stomach cancer. He’s one of ten group members you’ll meet and get to know when reading The Amateur’s Guide to Death and Dying.

The book is written by Richard Wagner who runs a non profit organisation called PARADIGM Programs Inc whose mission is ‘enhancing the end of life’. One of the main initiatives of the organisation is a ten week structured support program that focuses on death and dying. It is primarily targeted at people diagnosed with a terminal illness, but anyone can do the course.

The Amateur’s Guide to Death and Dying is a ‘workbook’ that takes the reader through the course. There are ten chapters that cover a wide range of territory. It is presented as a combination of group sessions, homework tasks and reflection exercises. There is a detailed blurb about each person and from then on we ‘hear’ from them in the first person, as if they are speaking directly to us in a group situation. They are fictional creations, but based on amalgams of real people. Wagner evokes their personalities well. I felt like I was hearing from ten distinct voices.

The content is comprehensive. We start with a discussion about perceptions of death, including why it still seems to be a taboo subject for so many people. Raul, 18, has polycystic kidney disease. He says how sick he is of ‘fightin’ something I can’t win.’ He hasn’t told his parents about attending the group because he knows how scared they are to accept the fact that he won’t live a long life: ‘They want me to keep praying to all these saints for some kinda stupid miracle. There are so many saints I can’t even remember all their names.’

From there, chapters move through many subjects and tasks including: writing your own obituary, legal, medical and financial matters, sexuality and body image for people who are dying, spirituality and belief, what happens to the body when we die, and the question of assisted, or pro-active dying.

The book is not always an easy read. It opens up questions about our own lives, including regrets and lost chances: ‘I haven’t done anything extraordinary, never won an award, never had my picture in the paper, never went to college, never even had a real job. I’m just an old woman who hasn’t anything to show for her life. And that makes me sad,’ says Janice, 62.

Reading such personal and intense stories has a significant emotional impact. I had to read slowly and take time out on occasion. And of course each story, task and provocation is designed to bring to the surface our own fears, hopes and regrets about death. This is a stated goal of the book and Wagner’s work in general. He is seeking a radical shift in how we perceive dying, specifically in terms of integrating it more consciously into every day life.

It’s not just about increasing awareness. Wagner believes we can live more full lives by embracing death. One of his motivations for creating the program and the book was because: ‘… the wisdom people come to during the dying process often died with them. There simply wasn’t a medium for collecting this abundant wisdom and thus it was frequently lost.’

There is a satisfying narrative arc to the book. Each of the participants comes to a sense of peace and acceptance about their situation. Many have renewed hope and vigour. ‘I feel like I’ve been able to look death in the face these past ten weeks and I didn’t flinch. So maybe, just maybe, death is not so foreboding after all,’ says Kevin, 39.

Some of the final statements in the evaluation section are a little pat. The book allows a neatness and sense of conclusion that is generally lacking in life with all its messiness. This is a minor point though, as the book’s content never shies away from the difficult and the unresolved.

The Amateur’s Guide to Death and Dying is a useful and practical tool for any person approaching their own death, or the death of a loved one and would make a valuable resource for health and community organisations working in this area.

Spending focussed time meditating on the end of life is not something we do often. It’s confronting to face our own mortality, but there’s something vital, even exhilarating about the brief moments of insight that can come. I’d recommend The Amateur’s Guide to Death and Dying to anyone seeking to engage with questions about death and the meaning of life.

Full Review HERE!

Some help with your death

I’d like to share with you a wonderful review of The Amateur’s Guide To Death and Dying; Enhancing the End of Life posted this morning on Bill’s ‘Faith Matters’ Blog.  Thank you, Bill!

Bill Tammeus, the author of the blog, is the former Faith section columnist for The Kansas City Star. He came to The Star in 1970 as a reporter, spent nearly 27 years on the paper’s editorial page and then moved his column in March 2004 to the weekly Faith section. He took formal retirement in mid-2006 but continued as Faith section columnist on a freelance basis until mid-November 2008. In addition to this daily blog, Bill writes columns for The Presbyterian Outlook and the online edition of the National Catholic Reporter.

In America’s death-denying culture, the reality that death awaits all of us seems to sneak up on lots of people and catch them off guard.

And yet, as I have insisted to readers over and over for decades, if you don’t understand your own death you’ll never understand your own life.

What I bring you today is some remarkable help in exactly that — understanding your own death. It’s a new book (well, workbook might be a better term) called The Amateur’s Guide to Death and Dying: Enhancing the End of Life, by Richard Wagner.

Wagner. a former Catholic priest, is a psychotherapist who founded and now is executive director of PARADIGM Programs, Inc., a nonprofit that works to help people with end-of-life matters.

What Wagner does in this book is walk readers through the experience of being part of a group for 10 weeks, discussing death and dying for two hours at a time.

Now, of course, readers aren’t physically with the composite characters (meaning fictional but based on reality) of Jan, Michael, Holly, Raymond, Clare, Kevin, Max, Mia, Raul and Robin as they talk about their own situations.

But after a time readers will feel as if they know them quite well and have compassion for what each of them is going through.

Wagner also brings experts to the group meetings to deal with various subjects related to death and dying. I thought his chapter on spirituality and religion was quite helpful. The discussion was led by the Rev. David Pattee, who is not a composite character at all but a Unitarian-Universalist pastor.

As you might expect, Wagner has the composite characters in this discussion be from all over the lot when it comes to religious experience. Some are detached from any faith commitment, others are angry at God, others rely on faith to get them through each day.

Somewhere in the midst of all that readers may well find themselves and find some help in grasping how various religious traditions deal with death and dying.

Facing our own mortality can be a sobering and jarring experience, but it’s something each of us must do if we hope to bring our life to any kind of coherent conclusion.

I see Wagner’s book as an excellent tool to help people of all ages with that task. I could see this book being used in various faith communities as a study guide for small groups led by competent lay leaders or clergy.

And the time to engage in this sort of facing-death discipline is well before you think you need it.

Complete Posting HERE!

REVIEW — In Gumbo, The Grail Connection Newsletter

Marian Ronan:
The Amateur’s Guide to Death and Dying: Enhancing the End of Life, by Richard Wagner, Ph.D. Las Vegas, NV: Nazca Plains, 2012. 431 pp.

Well, it’s happening. The baby-boomers are becoming senior citizens. I joined Medicare and got my half-price MTA card in April. My husband has retired and we’re planning a trip to Paris.

But getting older isn’t all sweetness and light. Even as Keith and I are packing, my best friend from college has checked into a hospice in Toronto, her metastatic breast cancer exploding throughout her body. Ten or twenty years ago I would have characterized this as a catastrophe. Increasingly, it’s the new normal.

Apparently we Americans put a lot of energy into avoiding this “darker” side of getting older. Clinical psychologist Richard Wagner (actually I’m a psychotherapist, clinical sexologist) has extensive experience helping people to come to terms with their own deaths and the deaths of those they love, so he’s written a workbook for the rest of us: The Amateur’s Guide to Death and Dying.

The chapters of The Amateur’s Guide are structured around ten sessions of the death and dying support groups that the author leads professionally in Northern California. Ten fictional group members, composites of actual participants, interact with one another, telling their stories, and engaging the material that Wagner and other experts present. Forms are also provided for us, the readers, to respond to the materials, provide feedback, even evaluate the contents and process of the workshop.

Among the death and dying-related subjects the book/workshop addresses are fear and avoidance of the reality of death, dealing with regrets and old wounds, end-of -life documents and preparations like advance directives, wills and trusts, who to notify, distribution of your possessions, etc., spirituality in death and dying, sexuality and intimacy in the dying process, and what someone’s last weeks and days are actually like.

Reading the responses of the various group members to the presentations and assignments helps to make this material real. But doing the assignments yourself makes death and dying all the more palpable. I was surprised at how deeply moved—and disturbed—I was as I did the various exercises, for example, writing my own obituary and describing the last weeks and days of my own life. This may not be true for everyone, but for me, engaging the prospect of my death was a sobering experience. But I feel I am better for it.

No book is perfect, of course. For the first half of the book, I found it almost impossible to keep the ten members of the group straight in my head. I finally made a crib sheet with the name, age, and a brief description of each, which I printed out and kept inside the front cover. The publisher should send out a bookmark with such information on it when someone buys a copy of The Amateur’s Guide so that readers can consult it as each group member begins to “talk.” The book is also pretty large—the cover is eight by ten inches and the book is an inch thick—which made it hard for me to take on the subway, where I do a lot of my reading.

But this is quibbling. The Amateur’s Guide to Death and Dying makes a valuable contribution to helping readers come to terms with an aspect of life that too many of us tend to avoid. Grail groups around the country would do well to use it to help members begin—or continue—to deal with the reality of death

Marian Ronan blog: An American Catholic on the Margins of World Christianity.