Let the Discomfort Begin with Me

Friday, November 21, 2014 - 6:18am
Photo by Nur Lan

Let the Discomfort Begin with Me

A monumental transformation is occurring. In this country and across the globe, people increasingly have an alternative to withering in old age homes and dying in hospitals — and millions of them are seizing the opportunity. But this is an unsettled time. We’ve begun rejecting the institutionalized version of aging and death, but we’ve not yet established our new norm. We’re caught in a transitional phase. However miserable the old system has been, we are all experts at it. We know the dance moves. You agree to become a patient, and I, the clinician, agree to try to fix you, whatever the improbability, the misery, the damage, or the cost. With this new way, in which we together try to figure out how to face mortality and preserve the fiber of a meaningful life, with its loyalties and individuality, we are plodding novices. We are going through a societal learning curve, one person at a time. And that would include me, whether as a doctor or as simply a human being.

I’ve just finished Atul Gawande’s beautiful book, Being Mortal, from which this excerpt is taken. Gawande is a humble doctor and a gifted writer; I would argue that he is one of the most important thought leaders of our time. If you haven’t been reading his work, now is the time to start.

This latest book is focused on a topic that I’ve been obsessed with ever since my grandmother died in hospice care: aging and the dying process. The thrust of his argument is that we have — for far too long — structured the last years of our lives around safety rather than meaning. We try to protect our parents and grandparents, and in so doing, very often steal their last earthly chance to express who they are fully, to love what the “soft animal of their bodies love” (to paraphrase poet Mary Oliver), to revel in the sensual pleasures of being alive. This bite of warm sourdough bread. This scent of freshly cut fir tree. This pudgy grandchild’s hand. In the very end, it is the smallest things that anchor us to the earth and our gratitude for our finite time here.

There is grounded inspiration to be found in the transition that Atul Gawande describes in Being Mortal. As a society, we really are fighting back against our own fearful, costly instincts to keep people alive, to institutionalize and coddle them. We really are creating alternatives — places where people, even very sick and disabled people, can revel in their own idiosyncratic take on the “good life,” whether that’s reading trashy magazines and watching reality shows, playing poker and drinking whiskey, taking walks in nature alone. People are having the hard conversations with more courage and clarity about the end of life experiences that they wish to have — each one as nuanced as the human being doing the wishing.

I was so struck by the passage above because it describes change in a way that transcends the topic at hand. When we have done things one way and we are straining to do them a new way, there is this hugely important liminal moment. We have to turn off auto-pilot. We have to really witness our own instincts. We have to be willing to be uncomfortable enough to do it a new way, knowing we might be clumsy at first. This is true when an entire healthcare system, and all those that interact with it, tries to deal with death differently. It’s also true when one human being decides to drink less or be more social or try a new career.

One of the prayers that I say to myself every day is this:

May I see what I do. May I do it differently. May I make this a way of life.

I learned it from an old mentor of mine named Karen. She had a pixie haircut and a strong, small body. I went to visit her at her home around Rhinebeck, New York when I was in my early 20s. She ate miso soup for breakfast and made me promise I would spend at least 20 minutes of each day in the peak sun instead of head down at my laptop (Vitamin D!). She let me borrow a book about the 60s revolts that I never returned. She taught me how to massage my own ears and do metta meditation. She died of breast cancer, but her lessons live on in me every single day.

I say this prayer, not just because she was so wise and it helps me remember her. I say it because I get bored of myself. I say it because I’m a creature of habit, like almost everybody else. I say it because I know that the “moral arc of the universe,” in King’s words, will only bend when we interrogate our own automatic thoughts and become fiercely awake about our own actions.

Gawande, a veteran clinician, describes being nervous as he tries to have more direct conversations about death with his patients. He wants to do it, and yet, it feels so unintuitive. He’d rather focus on the likelihood of their survival. But he pushes himself to do it differently. He asks the hard questions. He makes himself and his patients temporarily uncomfortable, so that they can all make profound meaning in the end.

I’m awed by a master’s bravery to be a beginner again. It seems to me to be the missing ingredient to so many movements for dignity. Let the discomfort begin with me.

Share Post

Shortened URL

Contributor

Courtney E. Martin

is a columnist for On Being. Her column appears every Friday.

Her newest book, The New Better Off: Reinventing the American Dream, explores how people are redefining the American dream (think more fulfillment, community, and fun, less debt, status, and stuff). Courtney is the co-founder of the Solutions Journalism Network and a strategist for the TED Prize. She is also co-founder and partner at Valenti Martin Media and FRESH Speakers Bureau, and editor emeritus at Feministing.com.

Courtney has authored/edited five books, including Do It Anyway: The New Generation of Activists, and Perfect Girls, Starving Daughters: How the Quest for Perfection is Harming Young Women. Her work appears frequently in The New York Times and The Washington Post. Courtney has appeared on the TODAY Show, Good Morning America, MSNBC, and The O’Reilly Factor, and speaks widely at conferences and colleges. She is the recipient of the Elie Wiesel Prize in Ethics and a residency from the Rockefeller Foundation’s Bellagio Centre. She lives with her partner in life and work, John Cary, in Oakland, and their daughters Maya and Stella. Read more about her work at www.courtneyemartin.com.

Share Your Reflection

27Reflections

Reflections

Having participated with my sister in loving and caring for our parents at the end of their lives, supporting their dignity always meant paying attention to what they needed and wanted rather than imposing on them a template about how life is supposed to look for older and dying people. To say this was a challenge is an understatement - but it was always worth it. Thanks, Ms. Martin, for this compelling and beautiful essay.

I too have been thinking about this subject for a long time. I see a connection between a "good death" and a "good day." Living with intent for as long as possible and then letting go. There's so much to learn about this. It takes a lifetime!

I'm soaking this in... the ramifications, on so many levels move through me like the proverbial ripples, in a pool. Want to sit with this a while. I can feel how deeply it applies. How practical it is, in my everyday life. Thank you for sharing...

Beautiful article! During a visit this week with a young Hospice client I felt great discomfort with his desire to steer the direction of our conversation to his feelings
of isolation and what his future holds. Listening is such an underrated skill in our culture.My desire is to be able to hold each moment as it is without attachment to outcome.

Iam a therapist and work with many people who are experiencing or have experienced grief and loss. I have a degree specialized in Pastoral Care as well as in Clinical Social Work. I am trained to deal with death. Now I am facing the inevitable dying process with my father and all of my training has not prepared me sufficiently for the grief I am experiencing. He has had two heart attacks in the last month and refuses any medical care. He does not want to prolong his life in any way, but go as the "Lord has planned" for him. So, go he will-probably sooner rather than later. While I respect his decision and believe strongly that he has every right to decide how and when he will die, I am left with a sadness and aching in my heart that is incredibly painful. My spirit is reliving some old wounds of abandonment and fear.It is profound kind of loss. One that I am focused on moving through with him with the same grace and love that has always been present in our relationship. My father is once again pushing me to think and to grow and to accept his wishes and his limitations and to allow him his journey while at the same time setting a clear intention to allow my own journey to mingle with his. Together, with the rest of our family, we usher him toward the other side.

you are honoring your path, which has been to prepare others for their end of life appointment. now your Dad, in his own dignity and choice is sharing with you the opportunity to wait for the absence, and experience all of the moments you have in his presence. as someone who was allowed to care for dying brothers, my mother and friends,i experience an intimate sense of gratitude. May the journey renew you and gift you profound sacred intimacy.

Jennifer thank you for sharing such a personal story. It is as inspiring as Martin's writing, which is incredibly inspiring.

Courtney, what a marvellous article. The courage of a 'master's bravery' requires that thing called vulnerability, rarely thought of as robust, or as a strength, but which we need in spades to make these heartfelt changes.On a personal note, I have the phrase (prayer) STAY AWAKE written on my small kitchen chalkboard. A phrase a friend says often. Circled in a cloud, it's my fierce reminder.

I heard Dr Gawande speak over a month ago in NYC and thought he made excellent sense. His books are best sellers and deserve to be, but in his heart Dr. G is always the doctor. This article tweaked me, however, about something that probably seems so small as not to matter. I wish EVERYONE would stop referring to the big life issues as a 'process.' Birth, death, grieving and many other examples are termed a 'process,' which is to say, a mechanistic approach that we can control. It may be easier in the medical world to deal with these matters as if they have manageable parts, but they don't. I had children; I didn;t go through the birthing process, and when I die, I want sympathetic attention from care givers, not a cold approach that gets plotted on a chart as stages in the dying process.

Gail, would the word "journey" make a difference? Instead of "process".

Really enjoyed this - have u seen the documentary - alive inside ? Aliveinside.us
- if not u should - it's totally pertaining to your article- I did the soundtrack and my brother is the director

"Don't TELL me how old I am! I am very well aware of it!"...I hear this plea frequently from a loved one who wants to be, and is, that same, extraordinary girl of the forties. Cells and ligaments have given her up to a wheel chair but inside she's dancing. For God's sake, family, let her dance her way home!

I was wondering who the painting of the kneeling girl was by and/or what the meaning or title of it is.

After fourteen survivals of pneumonia, the fifteenth onset looming, I phoned the doctor for the usual medication packet for my husband rather than dislodge him from his bed for an office or hospital visit. Dr. Huot agreed and sent it but another doctor was on duty that night and called to make sure I didn't want to send him to the hospital. That was last late December as I recall as Everett was put under Hospice care early in January so that Huntington Common would not be required to send him to the ER if it happened again. He seemed to be declining and all of the children came to visit us on Mother's Day, not to alarm him about our thoughts. By Father's Day, he was improving, but has continued to qualify for Hospice care including their furnishing costly electric powered 24/7 plus portable Oxygen equipment instead of our having to deal with tanks of oxygen with responsibility for timely reordering. They also provide a hospital bed and daily disposable supplies. The personal care he gets comes with a VA package he receives for Assisted Living. Both of us have signed Do Not Resuscitate orders. I keep forgetting to get bracelets that say that as advised by a doctor when we specified it. With oxygen and COPD priorities he will probably continue to qualify for Hospice care. We have heard of one man who renewed Hospice contracts for five years. Other than this, I would like to say that although I don't exactly know how he looks on the next life, I have had an NDE and do not fear it for him or myself.

What I do wonder about with the news stories of doctor assisted endings is whether in the scheme of things they count as suicide following which some say that the Light is not encountered. I certainly don't want to miss further communication/conversation with the "Cosmic Laser" of my poem that I included in "Unlaundered Cache and other poems" www.libertymedianh.com bookstore I will share the poem here online if another form appears.

I lost both my parents last year and was honored to have spent those last months with each of them. My mother died of lung/bone cancer and my father willed himself to die after a brain bleed made him incapable of caring for himself.
We were so lucky to have have had hospice there to help them and us. To let us know what would happen next.
I too just finished Dr. Gawande's book, Being Mortal. It helped me to process what I'd been through and see how everything about death is changing now. Just as I had options when I gave birth to my daughter - Lamaze, underwater, sitting, standing, c-section, natural,etc. We should also have options to die as we see fit.

How true....

"Let the discomfort begin with me." That's so perfect. What a practice to take on. I have seen many unable to be with a cancer patient, especially someone who is young. It is often when a"cancer" comes and limits our possibilities of escaping discomfort that we might begin a relationship with this territory of loss. We are all with this dying person 24/7. Who is the one who can meet discomfort at the door, find loss at the door and open?

A friend gave a DVD of a play on loss called "Drive". It is based on the experience of Peter Spring, a father whose son had been living with cancer since a child and died at 22. A year after his son's death, Peter is driving with a friend suffering from Alzheimer's on a six hour trip to Portland. The friend's recurring conversational gambit, again and again, is about his children. The fact of Peter's loss does not stay in Margo's short term memory. Miraculously his Zen Grandmother bearing this stick, is a woman whom he can have compassion for and with no where to go, he finds himself strong enough to say yes, to open to his pain, to what part of him felt unendurable. (See )

Thank you and Rebekah
for reminder of the necessity to be able in this different way.

I love this article! it is exactly what is happening at the present time, an undercurrent of awakening still unknown to the greater society. It is a very " unsettled time" with more uncertainty to come, as more and more individuals and their families begin to question and demand. It has began with the death cafés which have spread throughout the world, people speaking of death, their death and the deaths of others. Such a healthy situation. It is Gibran who writes "If you would indeed behold the spirit of death, open your heart wide unto the body of life. For life and death are one, even as the river and the sea are one" So we must honor the spirit of death and leave the safety and security outside for the time being, until we get used to a new norm. Great article and thank you so much for sharing with us...hugs XXOO

This inspires me to share a poem I wrote about my last conversation with my own mother.

At the Hospice

My mother doesn’t like the big high bed
they have put her in
and is afraid of the hoist the nurses use
to lift her into the chair or bath.
She says they don’t know what they’re doing,
worries that they might let her fall.

Her hands clutch at the sheets,
push the covers back in confusion.
I notice her fingernails are long,
and there is dirt beneath them.
This should not be happening,
I take my mother’s hands in mine,
I cut her nails

I ask her what she thinks about
when she is lying there
and she says, nothing,
I think about nothing.

I want to ask her if she is afraid,
if there is anything she wants to say,
but can’t
Instead I ask does she ever think about God,
and she is half asleep and says
No, No - I never think about him at all.

~ Anne F O’Reilly from the CD Breathsong

Hospices are wonderful in the UK too, the best place to end your days on earth if home is not an option. Time to prepare, to say thank you, to reassure the rest of the family that you are not scared. Like all others who have shared their reflections,I hope to die naturally, whether it's sudden or prolonged and RIP = rest in perfection

I thought this was beautiful and that you might enjoy this..very inspiring..also going to get this book!

I so agree with both of you. One goal I have for my podcast is to help folks overcome their fears so that it is easier to have those important conversations with their loved ones and caregivers.

Krista,I first listened to your programs in the car, as I drove from Los Angeles to my home in Idyllwild; a car accident in 2010 caused a broken neck and clipped my wings--I forgot your program. I used to go to L.A. for Dharma programs. I turn 78 in March; I guess that's old; but my old age has been saved by being a studio artist, though through further tragedy, my life in this small town has become hermetic. I think about my death and dying a lot, and wish it will not cause to much trouble to my two adult daughters.

I hear it all the time now. We want to get mabel or sue well enough to go home. Should we assume that everyone wants to go home to an empty house and be alone? I want to be in community, if possible multigenerational and busy. I have no family beyond my husband and few close friends nearby. Am I the only one who does not want to spend my end days in my home alone?

How can can anyone be truely prepared for there parents siblings to die? When my Grandparents died I was hurting and didnt want this but I wouldnt change it for the world since I got to say good bye instead now its more cremation and we have personal goodbye for the dead. For me when my grandfather died I remember seeing this red flowers that looked plastic and reading the cards then going to the coffin and seeing him gone. I wept like a babe. Oh how I missed him. Then I remember we did have a chinese food out and nobody explained it too me about you leave the food out for a couple minutes for the dead to eat and we burn incense and paper money. My cousin was uncomfortable with my display of grief.

My father passed away last Saturday under hospice care at the hospital. My mom and I took the day shift while my brother took the evenings to care for him, chasing the floor nurse when he came out of his sleep and wailed in pain. It was the most difficult period in my life having to witness his death, but we were with him to the very end. The day leading to his death taught me what courage meant: to accept his wishes not to be resuscitated, to make uncomfortable decisions so that my father could pass away in his sleep and to keep him as comfortable as possible. This entire experience has changed me in the way I look at dying, the need to pay attention to my current life, and be mindful in finding joy in the things I do right now. If anything, this makes me want to slow down and reassess.

There is so many of our cultural practices regarding dying and death that need shifting. People have power and choices they are not aware of. We need to be in control of their own deaths. I quite agree with you about your thoughts on Atul Gawande.

apples