Suzanne Edison, MA, MFA

Poet • Educator

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Suzanne’s Blog

Thank you for visiting my blog! I write on many topics and your comments are always welcome.

May 3, 2011 By Suzanne

Words Matter Redux

Just after writing my last post I was reading the August 2, 2010 issue of the New Yorker magazine and came across a wonderful article by Dr. Atul Gawande.  It is a far ranging piece about the concerns and costs of end of life care, about the importance and difficulty doctors have in discussing with patients what they want their lives to be like as they struggle with end of life, healthcare, and about the patient and their caretaker’s needs around this issue.

I won’t repeat in detail the complexities he describes but I do want to talk again about the importance of words.

Dr. Gawande found that Aetna Insurance had done a remarkable study comparing the costs of hospice care to ‘do everything possible in the hospital ‘ care with dying patients. They found that not only were costs lower for patients in hospice but “these patients suffered less, were physically more capable, and were better able, for a longer period, to interact with others. Moreover, six months after the patients died their family members were much less likely to experience persistent major depression.  In other words, people who had substantive discussions with their doctor about their end-of-life preferences were far more likely to die at peace and in control of their situation, and to spare their family anguish.” (my emphasis)

These discussions are never easy. Especially for doctors who are trained to do everything to intervene and are actually paid for doing rather than, not doing, something medically.  (That is another discussion.) But Dr. Gawande went on to interview “Dr. Susan Block, a palliative care specialist, who is a recognized pioneer in training doctors and others in managing end-of-life issues with patients and their families.”

In her words. “One basic mistake is conceptual. For doctors, the primary purpose of a discussion about terminal illness is to determine what people want—whether they want chemo or not, whether they want to be resuscitated or not, whether they want hospice or not. They focus on laying out the facts and the options. But that’s a mistake.”

“A large part of the task is helping people negotiate the overwhelming anxiety—anxiety about death, anxiety about suffering, anxiety about loved ones, anxiety about finances,” she explained. “There are many worries and real terrors.” Gawande again, “No one conversation can address them all. Arriving at an acceptance of one’s mortality and a clear understanding of the limits and the possibilities of medicine is a process, not an epiphany.”

“There is no single way to take people with terminal illness through the process, but, according to Block, there are some rules. You sit down. You make time. You’re not determining whether they want treatment X versus Y. You’re trying to learn what’s most important to them under the circumstances—so that you can provide information and advice on the approach that gives them the best chance of achieving it. This requires as much listening as talking. If you are talking more than half of the time, Block says, you’re talking too much.” (again, my emphasis)

And then Gawande says,  “The words you use matter.” While this article focuses mainly on the patient it also touches on the caretakers of the terminally ill or dying person. Not only is the discussion of what people want at the end of life relevant to the patient, but the talking, and listening that family members do also helps them come to terms with the patient’s illness and wishes and in the long run, decreases their sense of guilt and depression after their loved one has died.

Being the mother of a child with a chronic illness, my work and observations are often geared towards caretakers now.  And it is always confirming to me to see that words matter, no matter which side of the equation you are on.

 .

Filed Under: blog

May 3, 2011 By Suzanne

When Words Matter

I had the honor of speaking to and leading a group of parents whose kids have chronic illness, mostly Juvenile Rheumatoid Arthritis (JRA), this past weekend.  It was at a Family Camp put on by the Pacific Northwest Arthritis Foundation. Though my daughter has a different rheumatic-like disease, my family attended it 3 years ago when our daughter was very ill and really needed to be with other kids like her. My husband and I found a lot of support from other parents but also from one or two terrific speakers and group leaders.

I do not pretend to be James May, the wonderful counselor and founder of The Fathers Network, whose words to us 3 years ago were so profound and came from his personal experience of having JRA as a child (he still does). I have only my experience as a parent of a child with an autoimmune disease to draw from. And I hoped that was enough. That, and my work as a poet which is one of my primary means of coping with, and expressing my experiences in life. I brought some of my poetry to read to the group of parents too.

The workshop was titled Reviving Your Lives: Coping Skills for Families Living with Chronic Illness. While hearing about some of the effects chronic illness has on families might seem dry or clinical I hoped that weaving poetry into my opening talk would allow another inroad into the emotions we all deal with when a child is diagnosed with a potentially life threatening, but more likely, chronic illness.

I have come to realize that while I reach for images and metaphors to help me express a feeling or situation, these words, if they speak to others, also contain something bigger than that. They seem to contain matter in its ineffable form. Does this seem like a paradox? I guess so.  Let me come at it another way.

After my brief lecture time in which I also asked participants to do a little writing around some questions I proposed, I asked them to split up into groups. They would have an hour or so to talk among themselves about ways they have discovered of handling and enlivening their lives. I knew they would talk about whatever was important to them and it may or may not get to the issue of coping skills, but whatever they did was fine. I have learned that being in a group of people who share similar experiences is, in and of itself, important.  So in a sense, each group of 10 people (there were 60 people that day) became their own little world, supported and surrounded by each other, all talking about their fears, hopes, realities and details of having a child with JRA.

Each small group, like a good image, held all the possibilities of healing within it.  Their words, their ‘being together’ created something bigger than each of them on their own. And maybe this is what matters. The words matter. The being together matters.  Through attention, listening and head nodding we not only hold each other, we allow room for the ineffable to become embodied.  That which seems unspeakable comes out. And because this group came not to write poetry but to talk, the words spoken and heard, matter.

 .

Filed Under: blog

April 27, 2011 By Suzanne

2 Years after Diagnosis-5/08

This past weekend we spent three days in the Methow Valley. It is a place we have gone to the past three years as a family for Memorial Day. We have gone with friends and there have always been at least 2-4 other kids around.

Two years ago, before F was diagnosed with Dermatomyositis (JDM) but after almost a year of living with this progressive disease, she would not leave my side to play with others. She complained about walking up or down a hill, she was shaky in her body, in her approach to the world, and much of her behavior and moodiness was not understandable to me at the time. On that weekend, friends of ours who live in the Methow came to visit with their horses. F said she didn’t want to ride the horses. I told her she didn’t have to. When they arrived, she ran into our little trailer screaming and wouldn’t come out. I had to coax her out and hold her on my lap and even then she could only tolerate being in their presence for a few minutes.

Last year at this time, May 2007, she was 4 months into treatment and in a lot of pain. She was very withdrawn, barely able to walk. Sleeping and getting in and out of bed or to the outhouse was excruciating. It wasn’t much fun for her or any of us either.

A week before the Memorial Day holiday this year, F announced she wanted to try riding her old bike (the one without training wheels) and see if she could do it. We went to a basketball court near us to practice. She got a little of the balance worked out. Excited, she was very determined to keep going. A few days later some ponies and a horse came to a fair in our neighborhood park and she asked to ride the horse (not the pony). She got on it and rode in a small circle led by another young girl. She announced she was afraid while on the horse, and I remarked she had done it anyway.

This past weekend, back in the Methow, our friends with the horses showed up again. This time F got on the horse, was led down and around a road, riding more than in circles, and wanted to keep going. Then she asked if she could take riding lessons!

She ran up hills, went off to play on her own initiative with the other kids, went all over the place walking, running, laughing (even to the outhouse by herself).

The transformation is a marvel. It is amazing to realize how wise her body is. It was painful for us to see her becoming so timid and afraid at 4 ½ years old after having been strong and sturdy, to watch helplessly as she got weaker and weaker. Even after diagnosis we struggled as she withdrew far inside herself, perhaps to tolerate the pain and immobility and the effects of the drugs on her moods and spirit. She instinctively knew what to do to protect herself. Now, to see her running, laughing, initiating activities and her courage in doing things that scare her, I say her body/mind also knows what she can handle.

I have to believe that her body and mind worked together in both the disease process and the healing. Without one, her physical strength and health, she didn’t have much of the other, her joyous, courageous, Pushing Forward Into Life spirit either.

I can’t fully comprehend the intrinsic bond of mind/body/spirit, I just know from personal experience and again, watching my girl struggle and grow, they are always connected.

by Suzanne Edison, May 26, 2008

 

PUBLISHED ESSAYS

“Education of a Gardener” in The Seattle Times, July 11, 1999 and inHeronswood Catalogue, 2000 “Nonverbal Communication in the Classroom”, New Horizons for Learning, 1984

Filed Under: essays

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