If you click on the link below you will download a PDF of the workshop information on a flyer. Feel free to pass it on to anyone who might be interested.
Teens READING from the Heart of Illness & Healing
For 9 weeks now a group of 7 teens, aged 13-18, have been coming to an after school, independent, poetry writing workshop. These teens live with a variety of chronic illnesses themselves or live with a family member who is chronically ill.
I began this workshop for teens after several years of teaching writing to, and working with, parents of kids living with chronic illness. I had written a grant to interview these, and other parents, and write a series of poems based on those conversations. When I presented my work, one of the places I read was an inner city clinic in Seattle where many of the sickle cell families I had conversed with, are seen. Subsequently, I was asked by the staff if I could teach a workshop for teens. I was excited by the idea and with the help of two more grants, was given this opportunity.
Tonight is the inaugural, culminating reading. They will read to their families, friends, clinic doctors, nurses, social workers and other community members.
They have shown determination and resilience in writing about their illnesses, about their feelings of loneliness, fear and anger. They have written about what makes them feel better, their hopes, joys and what can also be seen as normal teenage concerns of belonging, identity and passion. I put the word normal in italics because this is the thing they all struggle with, and against. What does it mean to be normal, what does it mean to have an added issue of chronic illness to layer upon the everyday stresses of school, family, social life? How do I define myself, how do others define me? (My belief is all of them are bigger than their illness and expressing all parts of themselves allows them and others to see their fullness. It enlarges all of our lives.)
They are courageous, not only in their writing, but in their willingness to get up in front of people and read their work aloud. When we first started practicing for this reading 3 weeks ago, many of them swore they couldn’t do it. They wanted one girl to read all their work, as they thought she was the “true poet” and not afraid of speaking aloud. But gradually, after much laughing, and consternation about whether they’d be laughed at, they were able to make it through a full run practice. Then one girl commented brightly, “this is going to be fun”.
Their work will also be available in book form. They chose the title: Based on a True Story: Just Beyond the Gate.
For a copy of this booklet, please see the online store soon..
Teaching Narrative Medicine
The whole field called Narrative Medicine is beginning to take off. Or at least that is my perception since I am so closely tied to and interested in it. There are masters programs, certificate programs, programs in medical humanities, and a host of literary/medical journals being published that reflect many aspects of health, illness, healing and both practitioners and patients responses, now. I have been published in a few of them and am grateful for their existence. (see publications under Resume).
Here, in Seattle, I have had the pleasure and honor of meeting and befriending a professor of nursing at the University of Washington School of Nursing, Josephine Ensign, who is pushing the boundaries of this genre and opening up nursing students eyes and ears to what narrative medicine means, in its many permutations. She also writes a blog called Medical Margins, in which she gives voice to the variety of writers in the field and offers her course’s approach and thoughts on the intersection of medicine and literature. I highly recommend you read her blog.
Today, Josephine invited me and another author, Mary Oak, The Heart’s Oratorio to read and speak to her Narrative Medicine class. I read my poem Teeter Totter, which the class had read before and we had a discussion about my intent and feelings of the poem along with some of the word choices and images, corrugated sadness, or leaving others up in the air, for example. Someone wondered if I felt frustrated and helpless, as this was his impression from the poem. Since I’d written the poem a few years ago, I said I no longer felt frustrated by other’s lack of understanding and that helplessness comes with the territory of being a parent of a child with rare disease for which there is no cure.
I gave this class the same writing exercise I gave her previous class last November, though this group was much smaller and more intimate and seemingly more willing to share their own writing up front. It was a lively discussion and I look forward to hearing or seeing some of their poems they began today.
Mary read from her book and I was struck by wondering how much her writing had changed what she felt or thought about her medical experiences or about writing in general. She hoped, as I do, that the book offered hope to those in similar situations. We both feel that telling the truth about our experiences leads to less isolation on the part of someone suffering other illnesses and offers them glimpses into how others have dealt with many of the same issues.
“I don’t have time to write, I’m too busy caring for my child”
1. The Predicament
Does the title of this blog post sound familiar? Most parents feel this way, most of the time, but it is especially true if you have a child with special needs, ongoing health issues or some combination of these. Perhaps you have more than one child, or more than one who has special needs. Your days are often filled with just getting them dressed, fed, to school, or doctor’s appointments, home again, fed, to bed. On top of that, with ongoing health issues often comes a battery of medicines (this is one of the dozen my child was on for 4.5 years)
that need to be kept track of, administered with or without food, multiple times a day. There are refills that need to be ordered, notes to be kept about daily behaviors, experiences that a doctor might need to know about (that, you say is the writing you do) or multiple kids schedules to keep track of. This is just a slice of what a day might include. And at the end of the day you fall into bed yourself, and maybe, sleep through the night. Then, get up and do it all again.
2. The 5-minute Fix
I have lived this. But without being able to write I would never have made it through the more than 5 years I spent caring for my child when she was ill. (She is in remission now, but with an autoimmune disease, one never knows if it will return.)
Writing saved me and helped me deal with the overwhelming emotions that came with care for my child and not knowing if or when she might attain remission. As a result of my experiences I now teach a writing workshop for parents who have kids with a chronic illness.
I begin my workshop with a 5 minute writing exercise. I think everyone can carve out 5 minutes a day to do this and it may just help you cope with the rest of your day. Or help you sleep at night. Of course, you are welcome to go over the allotted 5 minutes, but not at first.
3. The Exercise
Write down 3 words that come to you from your day. These words can be about your day with your child(ren) or in general. They can be any words (try not to censor yourself).
Set the timer for 5 minutes.
Then, write for 5 minutes using these 3 words as often as possible. You can write full sentences or fragments of sentences. You can write a paragraph or a poem. Try not to think about the form but let the words come out. If you get stuck for words in that 5 minutes, just keep writing the same words over and over until something else emerges.
Stop when the timer goes off. Read it to yourself. Put it away. Repeat this exercise the next day. And again as often as you can, but limit it to 5 minutes at a time.
4. Now What? The Intermediate Approach
After you’ve done this exercise 5 times, the next time you are about to do it, sit for a few seconds before setting the timer, close your eyes and check in with yourself. Notice your breathing. Notice where your body feels tight and relaxed. Notice your jaw, your neck ,your abdomen, etc. Take a mental inventory.
Then do the writing exercise. After the timer goes off, again close your eyes and go through this same internal checklist. Notice any changes. Open your eyes and look at what you’ve written. Jot down anything you notice from before and after the exercise.
Repeat as many times as you wish. See if this little time out changes anything for you, helps you think better, feel calmer, understand something in a different way. If nothing seems different that is OK. There is no right or wrong here, just this simple practice. Let me know what you think.
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