The Amateur's Guide To Death & Dying
Enhancing Life Near Death
Customer: “He’s not pining! He’s passed on! This parrot is no more! He has ceased to be! He’s expired and gone to meet his maker! He’s a stiff! Bereft of life, he rests in peace! . . . His metabolic processes are now history! He’s off the twig! He’s kicked the bucket, he’s shuffled off his mortal coil, run down the curtain and joined the bleeding choir invisible! This is an ex-parrot!”
— Monty Python
I had a very interesting weekend. On Saturday, June 2nd, I attended a day long event at the Fred Hutchinson Cancer Research Center. The program was titled: Moving Beyond Cancer to Wellness.
It was a great program full of interesting workshops. There was also a small vendors area. A bunch of cancer-related agencies set up tables and on them they displayed their brochures for the programs and support they offer people living with cancer.
I thought this would be the ideal setting for networking with other like-minded folks, so when I visited each of the vendors I introduced myself and proudly handed the person at the table a copy of my book. The reactions were nearly always negative or at least alarm. Once the person saw the title, The Amateur’s Guide To Death and Dying; Enhancing the End of Life, the smiles that greeted me when I first approached the table soon turned to dismay. Their reaction to the book was as if I had handed them something disgusting.
It was immediately clear to me that bringing a book about death and dying to a cancer survival event was a huge faux pas. Despite my protestations that the work their agency was doing and the information in my book were very much alike. The only difference being their outreach is disease-specific, while my book is about mortality. I wasn’t able to convince them.
So ok, I get it. Death is a hard sell to the disease-specific crowd. Apparently contemplating one’s mortality, even when it is staring us in the face is not the politically correct thing to do. But why is that? Facing our mortality doesn’t undercut a person’s commitment to fighting his/her disease process. I contend that consciously facing the prospect of life’s end really helps put our effort in fighting a disease into perspective.
Curiously enough the reaction I got from the other participants at the Moving Beyond Cancer to Wellness event was much different from that of the vendors. I think most people who encounter their mortality through a disease process, like cancer, know, deep down inside, that this could be the beginning of the end. Why else would people react as they do when they get a diagnosis?
The other participants at the event, the ones I showed my book to, had a much less phobic reaction to it. I contend that this is because they’ve already put themselves there, at death’s door. This sort of takes a lot of the sting out of death.
Were they any more enthusiastic about taking a long hard look at their own mortality? Probably not. But then again, they weren’t as resistant to the idea as were the ostensibly well people manning the vender tables.
I try to imagine what things would be like if we all were encouraged to examine the end of our life, much in the same way as women are encouraged to do a periodic breast self-exam. I mean, examining one’s breast for lumps, or other abnormalities doesn’t increase your risk for breast cancer, right? Neither does facing one’s mortality in a conscious, upfront way hasten death.
Finally, on Sunday I met with a young couple for their weekly couple’s counseling session. Once we were all settled in, I handed them a copy of my book. (I just love watching people’s reactions.) The young man spoke first. “That’s a bit scary.” He said after he read the title. “Scary, I mean for the people who need this book.” I replied, “I suppose it is. But you know what’s even scarier? Not thinking about the end of life before it’s too late. I mean, are you certain that you’re not among those who need this book? Are you certain that you will live to see the end of the day?”
Death is a hard sell in our death-denying culture. Yet, each of the people I encountered this past weekend will, in time, face the end of their life. That’s a given. The big question is; will they have the time or even the inclination to face their mortality in a way that will enrich their lives as they live it to the end?
Comedian Alexei Sayle produced this short video, entitled “Last Laugh,” to help people confront attitudes about terminal illness.
‘Dying to Know’, a drama about the difficulties and benefits of talking about end of life wishes, received a rapturous and emotional reception at the Cannes Film Festival today (Friday 25 May).
The 30-minute film, which was selected for the short films category at the Palais des Festivals, was produced and directed for Dying Matters by pFlix Films. Leon Ancliffe, managing director of pFlix Films, said: “We could have filled the room twice over. It was jammed, with people sitting on the floor. It was brilliantly received. There wasn’t a dry eye in the house. It’s overwhelming how well it went down.”
‘Dying to Know’, which aims to prompt conversations about death and dying, was commissioned by Dying Matters in partnership with Earl Mountbatten Hospice on the Isle of Wight. It began life as a theatre play, written by Helen Reading, director of the Red Tie Theatre on the Isle of Wight, and was turned into a film starring the original cast following a successful UK tour.
Leon said: “The actors and actresses from the original play pulled out all the stops and took to the screen with ease, giving brilliant performances. The script is heart-rending, uncovering the raw emotions and difficult conversations that encompass an impending bereavement, with humour, tact and grace.”
“We’re extremely proud of this opportunity to encourage more people to talk about death, dying and bereavement and hope that the film can go some small way to easing what can be an extremely difficult time.”
‘Dying to Know’ was filmed entirely on location in the Isle of Wight and featured many local residents as extras. A trailer of the film was shown at the Dying Matters Awareness Week launch event earlier this year before its world première on the island in April.
Complete Article HERE!
Dear friends and colleagues
I am pleased to announce the publication of my new book The Amateur’s Guide To Death And Dying: Enhancing The End Of Life.
(Click on the book art below for a synopsis and to purchase the book.)
The Amateur’s Guide To Death And Dying is specifically designed for terminally ill, chronically ill, elder, and dying people from all walks of life. But concerned family and friends, healing and helping professionals, lawyers, clergy, teachers, students, and those grieving a death will also benefit from reading the book.
The Amateur’s Guide To Death And Dying is a workbook that offers readers a unique group/seminar format. Readers participate in a virtual on-the-page support group consisting of ten other participants. Together members of the group help each other liberate themselves from the emotional, cultural, and practical problems that accompany dying in our modern age.
The Amateur’s Guide To Death And Dying helps readers dispel the myth that they are incapable of taking charge during the final season of life. Readers face the prospect of life’s end within a framework of honesty, activity, alliance, support, and humor. And most importantly readers learn these lessons in the art of dying and living from the best possible teachers, other sick, elder, and dying people.
The Amateur’s Guide To Death And Dying engages readers with a multitude of life situations and moral dilemmas that arise as they and their group partners face their mortality head on.
The Amateur’s Guide To Death And Dying offers readers a way to share coping strategies, participate in meaningful dialogue, and take advantage of professional information tailored to their specific needs. Topics include spirituality, sexuality and intimacy, legal concerns, final stages, and assisted dying. The book does not take an advocacy position on any of these topics. It does, however, advocate for the holistic self-determination of sick, elder, and dying people, which can only be achieved when they have adequate information.
Facing your mortality with the kind of support The Amateur’s Guide To Death And Dying offers does not eliminate the pain and poignancy of separation. Rather it involves confidently facing these things and living through them to the end.
This innovative workbook on death and dying is now available on Amazon and in bookstores. I welcome your thoughts, comments, and reviews.
All the best,
Richard
Richard Wagner, Ph.D.
richard@theamateursguide.com
Our website: The AmateursGuide.com
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My Check-In
Each week our group session begins with an opportunity to check-in. This provides each participant a chance to share his or her weekly progress with the rest of us. In the “My Check-In” section that follows, you’ll be offered that same opportunity. You’ll also be able to respond to the previous week’s issues and talk about key events of your past week.
My Turn
Each week we’ll tackle a specific issue: spirituality, legal concerns, early messages about death, etc. You’ll sample the discussion of your fellow participants as they come to grips with their own fears and anxieties. In the “My Turn” section that follows, you’ll be offered an opportunity to join the discussion. You’ll have plenty of opportunity to detail your thoughts and inner dialogue, and respond to the other group members and to our speakers.
Exercises and At Home Work
Each chapter contains creative exercises to further your involvement in the particular subject being addressed. You’ll be able to join the other participants as they tackle these thought-provoking exercises right along with you.
Each chapter also contains an “At Home Work” section, where you will be presented with an activity that is designed to keep you engaged in the process all week long. It will also prepare you for the following week’s topic.
SOME FINAL THOUGHTS
Here are a few suggestions on how to enhance your involvement in this process. First, walk through the process step-by-step just as it’s presented. A great deal of thought has gone into producing this program. It is tried and true. It moves from one topic to another in a specific order, each week building on the week before. In order for the process to work, you’ll want to allow yourself plenty of time and space to not only read through each chapter, but also to complete each exercise and homework assignment.
One of the best ways to stay involved in this program is by keeping a personal journal. This will serve as your own personal compass throughout the process.
This workbook is only able to provide you with a limited amount of space for your reflections and comments, so you may want to keep an extra pad of paper handy for jotting down all your thoughts, observations, and questions that may not fit on the page provided.
If you find writing or typing on a computer keyboard difficult, you might want to consider the option of keeping an audio or video journal. Either way, by the time you complete this workbook, you will have a valuable legacy that you’ll be able to share with others.
Even though The Amateur’s Guide provides you with a ten-person, on-the-page support group, there is no substitute for live human interaction. In light of this, you may wish to invite a friend or family member or maybe even a group of like-minded people to join you in this process.
If you work with a partner or a group, you’ll want to read aloud the check-in and discussion portions of each chapter and then, after completing that week’s exercises and homework assignments, you could share your responses with each other. This is an ideal way to break open a healthy conversation on what it means to die wisely and well.
THREE and a half years ago, on my 62nd birthday, doctors discovered a mass on my pancreas. It turned out to be Stage 3 pancreatic cancer. I was told I would be dead in four to six months. Today I am in that rare coterie of people who have survived this long with the disease. But I did not foresee that after having dedicated myself for 40 years to a life of the law, including more than two decades as a New York State judge, my quest for ameliorative and palliative care would lead me to marijuana.
My survival has demanded an enormous price, including months of chemotherapy, radiation hell and brutal surgery. For about a year, my cancer disappeared, only to return. About a month ago, I started a new and even more debilitating course of treatment. Every other week, after receiving an IV booster of chemotherapy drugs that takes three hours, I wear a pump that slowly injects more of the drugs over the next 48 hours.
Nausea and pain are constant companions. One struggles to eat enough to stave off the dramatic weight loss that is part of this disease. Eating, one of the great pleasures of life, has now become a daily battle, with each forkful a small victory. Every drug prescribed to treat one problem leads to one or two more drugs to offset its side effects. Pain medication leads to loss of appetite and constipation. Anti-nausea medication raises glucose levels, a serious problem for me with my pancreas so compromised. Sleep, which might bring respite from the miseries of the day, becomes increasingly elusive.
Inhaled marijuana is the only medicine that gives me some relief from nausea, stimulates my appetite, and makes it easier to fall asleep. The oral synthetic substitute, Marinol, prescribed by my doctors, was useless. Rather than watch the agony of my suffering, friends have chosen, at some personal risk, to provide the substance. I find a few puffs of marijuana before dinner gives me ammunition in the battle to eat. A few more puffs at bedtime permits desperately needed sleep.
This is not a law-and-order issue; it is a medical and a human rights issue. Being treated at Memorial Sloan Kettering Cancer Center, I am receiving the absolute gold standard of medical care. But doctors cannot be expected to do what the law prohibits, even when they know it is in the best interests of their patients. When palliative care is understood as a fundamental human and medical right, marijuana for medical use should be beyond controversy.
Sixteen states already permit the legitimate clinical use of marijuana, including our neighbor New Jersey, and Connecticut is on the cusp of becoming No. 17. The New York State Legislature is now debating a bill to recognize marijuana as an effective and legitimate medicinal substance and establish a lawful framework for its use. The Assembly has passed such bills before, but they went nowhere in the State Senate. This year I hope that the outcome will be different. Cancer is a nonpartisan disease, so ubiquitous that it’s impossible to imagine that there are legislators whose families have not also been touched by this scourge. It is to help all who have been affected by cancer, and those who will come after, that I now speak.
Given my position as a sitting judge still hearing cases, well-meaning friends question the wisdom of my coming out on this issue. But I recognize that fellow cancer sufferers may be unable, for a host of reasons, to give voice to our plight. It is another heartbreaking aporia in the world of cancer that the one drug that gives relief without deleterious side effects remains classified as a narcotic with no medicinal value.
Because criminalizing an effective medical technique affects the fair administration of justice, I feel obliged to speak out as both a judge and a cancer patient suffering with a fatal disease. I implore the governor and the Legislature of New York, always considered a leader among states, to join the forward and humane thinking of 16 other states and pass the medical marijuana bill this year. Medical science has not yet found a cure, but it is barbaric to deny us access to one substance that has proved to ameliorate our suffering.
Complete Article HERE!