see me in my words

photo by a.drian, flickr

This is a post about death, but really a post about life. It’s about a doctor who works with the dying but whose method of treating them can be applied to all, young and old. It is really a story about stories, how we all have them tucked within us, yet how they are often transformed with the passage of time and the living of life.

Dr. Harvey Chochinov, who I first heard of in an article by Alix Spiegel, is the author of a study called “Thinking Outside the Box: Depression, Hope, and Meaning at the End of Life.” A psychiatrist, he works with the terminally ill, and strives to come up with novel ways to ease their pain and difficulties while increasing their sense of well-being as they approach death (palliative care 101 for those who have the good fortune not to have lost a close friend or loved one).

Yet rather than just follow the standard model of diagnosis and treatment, which he admits to be “…like boxes,” which “provide a neat and readily available place to put things,” he tries to think outside it, or dig deep to find what lies beneath, rejecting the easy route wherein there is a “comfort level in being able to categorize, label, pigeonhole—file and save—that can sometimes contaminate or even supercede the often more nebulous task of coming to a real appreciation of the patient’s inner experience.” He doesn’t try to surmise or interpret this, but simply to draw it out from the patient himself.

In his article, the doctor describes a patient whose cancer had robbed him of part of his tongue and neck, the ability to “manage” his secretions and to eat any other way than through a tube. Understandably he suffered from depression, insomnia… But of course, we think, how would he not be depressed by all this plus the fact that he knew himself to be dying (which we all are, I suppose, to greater or lesser extent, but when our bodies start to betray us it becomes harder and harder to distract ourselves from this inevitability).

Dr. Chochinov delved deeper, discovering the past of this elderly man now decimated by carcinoma. He was, it turned out, a classical violinist who had performed with the greatest orchestras and the greatest of musicians. He was handsome and elegant in his day, before the cancer ate away at his body, leaving him saddened and depressed and—due to the surgeries—unable to play his beloved violin. He, like many patients facing such a dismal diagnosis, thought often of welcoming or even accelerating his end.

Loss of hope, dignity, purpose… fear of death, of being a burden, of pain… these are common threads, but what Dr. Chochinov discovered in his search for new boxes was that something critical to one’s dignity in many of these patients was how they “perceived themselves to be seen.” We care how others see us, and draw from that our own sense of worth.

Now here’s where it gets good…

From this came what the doctor calls “The Dignity Model in the Terminally Ill” and “dignity psychotherapy.” This treatment does not involve pills or physical treatment but has at its core one of the most simple concepts imaginable: listen to their stories, ask them what is most important to them, when they felt the proudest or happiest, how they would want to be remembered. These discussions are then recorded, edited for clarity and their words are returned to them so that they might read them and pass them along to those they leave behind. Simple. Lovely. Tell me your story. It worked.

In the same way we craft our appearance by how we dress, with whom we associate, what positions we seek, we continue to wish that others see us not necessarily as we are, or as we seem, but as we see ourselves.

Dr. Chochinov’s theories are perhaps most beautifully illustrated not in his research notes, but in his recounting of the last time he saw this patient, the violinist who he calls “Jacques” in his article, a made-up name he felt best fit the image this dying man wished to project…

I last saw Jacques a few days before he died. He was in the hospital at the time, vaguely confused but nevertheless aware of who I was and that I sensed his recent, grave deterioration in health. During our last visit, I was thinking about the notion of Jacques’ dignity, and the extent to which preconceived models or boxes had failed to encapsulate the full extent of his suffering. I recall the presence of a nurse at the foot of his bed, attending to charting or some such mechanical task. Turning to her, I said, “Did you know that Jacques was a professional musician? He played viola with all the world’s finest orchestras and musicians, including the likes of Leonard Bernstein, Herbert Von Karajan, Jean-Pierre Rampal, Vladimir Ashkenazy, and Glen Gould.” (I must admit, those that I could not remember I simply made up.) The effect was immediate and, I thought, profound. Jacques broke out in a full body blush, and a smile his face could barely contain. Later that morning, I overheard his nurse sharing the impressive details of Jacques’ glorious past with one of her colleagues. He was no longer simply an elderly male with an oral malignancy and secondary complications, admitted for palliative care, but someone deserved of honor, respect, and esteem—words corresponding to the definition of dignity itself.

See me not as I am in the mirror, or as you wish me to be. See me in my words, in what I choose to tell you and how I tell it.

~ • ~ • ~ • ~ •

Stories do not have to wait to be told at the end of life. Telling them, and listening to them feed us all on so many levels.

I’ve mentioned before my love of The Moth. Another place to visit and support is StoryCorps.

Listen to the stories of your loved ones, of your friends and your neighbors and even of strangers. Coax them out and, if you can, document them. Through words, through words crafted into stories, we live.

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36 thoughts on “see me in my words

  1. I love this post. My dad passed away in November of last year of cirrhosis and leukemia. Because he had cirrhosis a lot was assumed about him and a lot of his dignity was lost. I tried to share stories with the nurses when I was with him to give them a picture of the intelligent and dynamic man they were caring for. Thank you for sharing this post!

  2. This is incredibly thought provoking. Thank you for that. Now I want to call my mother and listen to all those tales of family adventures without the patronizing attitude I always had when I was younger. Now I’m eager to know, not only who she is, but who I am through her.

  3. Beautiful and thought provoking. I am a Stephen minister and have had the privilege of walking through the last part of life with a number of people. It is so important that we see the person, not the disease.

    I stopped by from the Bloggers Ball and am subscribing to your blog.

    1. Thank you so much. I love that you chose to say privilege. I have great respect for those who provide succor to the dying…it is not easy, but about as important a task one can take besides raising a child… easing one into the world and another out of it. 🙂

  4. Love this! I am a huge fan of storytelling and I believe that people’s stories are very powerful as they are an extension of themselves. What an honour to hear someone’s story that may have gone to the grave with them if someone had not been present. The town I live in is blessed to have the second Gilda’s club in Canada and I go there to support several friends who have cancer. Down the road I am hoping to do a journalling class as that has not been covered yet and like storytelling, is therapeutic. Thanks for sharing!

    1. Thank you so much! I guess in this world of entertainment we all need to remember that the best entertainment of all is telling and listening to our own stories. Life is often far more interesting than fiction!

  5. I was listening to a story on this very subject this week on NPR. I am a firm believer that sharing our stories is cathartic and community-building for all of us. There is no greater power than communicating with each other to share our view of the world and our place in it.

  6. LOVE this post. What a beautiful presentation. Our stories *are* so very important. I wish someday I could share just a snippet of the stories I heard over the years from inmates when I worked in prison. Everyone needs to be seen for who they really are, everyone…but as you so elegantly convey…especially those who are no longer seen in the luminous light they wish to be.

    1. Thanks, Brynne. Actually, what I didn’t really mention in my post, which was explored in the NPR one was the fact that people’s stories are very much their stories, and not always the way we remember the facts to be. The interpretation of events is as much a part of the therapy as the telling itself!

  7. This summer, I helped a friend edit her book about her Chinese immigrant parents’ lives both in China and their new lives in Canada. I was overcome with both sadness and shame that I had not done the same before my father’s death. Though it has many benefits, our wonder if our Canadian universal health care system leaves any time dignity psychotherapy. Lovely post – thank you!

  8. You commented on my blog and I found you (easily enough). I actually love that this is a “post about death” but at the same time it’s so filled with hope. Thanks for telling this story. You’re wonderful.

    Plus, I liked scrolling through your other blogs and the pictures – I will subscribe. 🙂 YAY!

  9. Like always Tracey, you give me so much to think about. The timing is perfect too since I have just lost a few people in my life and felt so sad for the way their lives ended with little hope and far less dignity. I truly appreciate reading your words. Last night I watched a movie called “Synecdoche, New York.” I’m not sure I recommend it to all, but the part that fascinated me happened at the end when (and I’m taking liberties here) the idea was discussed –What if you learned at the end of your life that no one watched or cared about anything you did or said and whatever happened while you were alive was self-absorbed. Would you act differently? Would you finally become the person you are supposed to be?

    1. Sorry to hear of your losses. I haven’t seen the movie, will have to see if it’s on netflix. We are so self-absorbed and fill our lives with busyness that, in the end, is pretty pointless. I’ve witnessed those deathbed regrets and tears, and it’s very sad. I guess we are all flawed and in the end driven by our own needs and ego, but within that very human perspective we need to be conscious of what is really important, which is never things, but people. Leaving your kid a pile of money is nothing, leaving them a wealth of memories and a good moral foundation is priceless. (Am I sounding like a commercial, or what?)

  10. This is a fantastic post. Moving and inspirational all at the same time. Not to mention timely. I have been thinking about how best to use writing in my life. I hope to offer gifts to as many people as I can, and I am also feeling moved to volunteer in some meaningful way. This post has spurred an idea for me. Maybe there is a nursing home nearby that could use a weekly visitor to take notes on the stories of the residents…to write them down and offer the stories back to them to share with anyone and everyone. I’ll keep you posted on how this story develops…

    1. Nice, Meagan! There is a lot out there about seeking/documenting stories, and I’m sure there are people out there (perhaps through StoryCorps?) who can give you some guidance about how to go about it. But really, in the end, it’s probably as simple as sitting down and smiling and asking questions. People, especially those starved for human warmth as are many of the lonely residents in nursing homes, love to be asked to tell their stories! Please do keep me posted, would love to hear your experiences…

  11. What a beautiful post. My sisters and I share a lot of family stories, but I’m said that I didn’t ask for more or that so many of them are only half-remembered. I think that’s one reason I’m writing now, so my stories are there for when my children want them.

  12. I heard about this on the radio a few mornings ago. I thought it seemed so obvious… after all, what we all want is a sort of immortality. Death is terrifying. And to have a life story, to have it respected… that is all that any person really wants on their death bed.

    Beautiful post. Thank you. 🙂

    1. I think many care but don’t have the time… how crazy is it that time spent listening to a patient is a luxury? My doctor, who does spend time and has diagnosed some pretty scary things because of this (not in me, but in others), tells me how the squeeze of the insurance companies, etc. makes it difficult to treat your patients well while still making a living.

  13. Beautiful, Tracey – I’ll be sharing this one with my sister, who’s entering her second year of nursing school. As always, thanks for your heartfelt examinations.

  14. I was a personal historian for years, and although I now don’t conduct interviews myself, I manage a large team of personal historians. I encourage ANYONE with loved ones in their final stage of life to be sure to conduct some form of personal legacy preservation. Whether it’s through our company (Legacy Keepers), another service, or it’s you and a digital recorder, it’s important to start the interviews immediately.

    If anyone wants our Interview Guide with suggested questions to ask, email me on ckellam@legacykeepers.com and I’ll send one over. Nothing’s more precious than capturing a loved one’s spirit.

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