My blog post / interview with poet, teacher and mother of a child with cerebral palsy, Christianne Balk, is now up at Caregifted. She speaks eloquently about the challenges and joys of her journey. Look for her newest book of poems, The Holding Hours.
I’ve written about writing and healing often. Writing workshops are what I now offer to other parents as a way of containing and expressing our experiences living with a child(ren) who has a life threatening or chronic illness. I recently came across an article on this subject on the Foundation for Art and Healing website from last year. I was reminded about Dr. James Pennebaker’s research on this subject and I want to go back and reread his work, Writing to Heal, now. You may find it of interest also.
There are many powerful reasons to write, but HOW we write is as important as the writing itself. Being able to construct a narrative from our emotions, or use metaphoric language as a container for the hard to express feelings, allows us to gain some perspective on what may feel overwhelming. I think it allows us to move from feeling to cognition.
I structure writing exercises so that participants have the time to let down into their feelings and experiences, but also have the opportunity to create a meaningful story or poem that provides a container for feelings. This sort of writing engages the prefrontal cortex, that part of our brains where decision making and discernment reside. This capacity to feel and contain is necessary for making judgements about treatment plans, advocating for our child’s needs and for adherence to the treatment plan. It helps move us from despair or depression about our circumstances to resilience and repair.
There is a caveat. Most of us don’t move through our feelings of grief or loss, anger or depression once and then never feel them again. We come back again and again to these experiences as our children get better and grow or don’t. Hopefully, writing allows us a mechanism for continuing to better understand what we feel and what we need for our own self-care and for our children.
I have the honor of being a guest blogger at CAREGIFTED‘s website. CAREGIFTED is an organization that “grants respite to long-term family caregivers, and works to greaten public recognition of their gifts to society, as well as of their historically unprecedented numbers.”
CAREGIFTED was founded by Heather McHugh, a nationally known poet and teacher, and the recipient of a MacArthur Genius grant. Please read more about how this organization came into being at their website. Providing a week’s all paid vacation to long term care providers is simply a radical and unique approach to helping families of profoundly disabled or chronically ill children.
I will be alternating my blog posts every other month with Jeneva Burroughs Stone, also a long term caregiver and writer. She blogs and writes about disability at Busily Seeking 2.0 and is currently writing a memoir.
This month’s blog post (coming out soon) at CAREGIFTED, features an interview I did with Kim Poston Miller, a mother of two children living with Juvenile Arthritis and the author of the book Living with Juvenile Arthritis: A Parent’s Guide. I hope you will take some time to peruse all of these sites for information about parenting kids with long term illness and about respite opportunities for caretakers.
Yesterday afternoon and into evening, I sat writing, next to a window with a view to the Puget Sound and Olympic Mountains. I seemed able to sit there for a long period of time, every once in awhile glancing up from my computer to note the trajectory of the sun and the corresponding shadows. I felt the heat from the sun reflecting off the water, and its shimmer. I worked on several poems and was aware of time only as the colors of the sky changed from blue to yellow-green to a deep orange.
It is easy to find a writing rhythm when I retreat to a place removed from the city. But I often take a walk in the city through a green-space or near a body of water when I come to an impasse in my writing and need new ideas.
Nature’s effect on the brain and creativity has been the subject of research for a few years. Though many of us have understood intuitively the necessity and rewards of being outdoors, of hiking in the mountains or walking in a park or on a beach, we can now point to brain research that confirms this awareness. We might want this added information as we think about providing nature, or natural environments to people in the hospital. Or, knowing the way nature recharges our brains, lowering cortisol levels and stress, making it easier to learn, we can confirm the need for kids to be outside and around the natural world for some parts of their day. Richard Louv wrote about this 10 years ago in his book, Last Child in the Woods, and it is even more true today; we have a harder time disconnecting from our wired world.
Now, that you are finished reading, go for a walk!
I am not writing this to sound ungrateful, humble or mean, but I have to challenge the good people and friends, (family even) who, for more than 10 years now, have commented that our adopted daughter, who lives with, and has suffered from Juvenile Myositis (JM), a rare autoimmune disease, is fortunate to be with us.
Why do I question this? From one perspective I am so glad that we are able to provide the healthcare she has needed. But from another perspective, this is not something she, or we, chose to have happen. Yes, we chose to adopt a child and we feel fortunate to be blessed with this child, (who was healthy for several years), but we didn’t get to “choose” her, she was “next in line.” Does that sound crass? It simply is the way it is. She didn’t choose us either, we were next in line.
After adoption we became her parents, and like any parents, we did whatever we could for our child’s health and well being. If there is any “fortune” involved in her coming to us it is these facts of chance. A) We live in the United States where there is the possibility of decent healthcare vs. Guatemala, where she came from. B) We are highly educated people and are able to negotiate the healthcare and insurance mazes. C) We speak English. D) We have enough income, so that when our child got sick and it necessitated one of us quitting our jobs, we were able to make ends meet. My husband, who had health insurance coverage, kept his. E) This may be the most fortuitous but also random fact of all: when she got sick, none of our doctors locally were able to diagnose her. We went from one to another for over a year. Finally, as the result of several other events, I called my step-father, a neuromuscular disease expert who lives in another state. We travelled to see him and after a few tests, he and his colleagues were able to diagnose her. So began our long journey of treatments, education and understanding of this rare disease.
While JM is life changing, it is not the only important thing in her life. And whether she considers herself “lucky” to have us as parents, is for her to decide. If she is like most kids, she has positive and negative thoughts about us. She has other issues to contend with besides her illness; adoption is one of them, the challenge of growing up Latina in a dominantly Caucasian household is another, and then just plain “growing up.”
I often turn the tables on this idea of good fortune and think how lucky I have been to have her in my life. Loving her has opened my heart in a way it wasn’t open before. I acknowledge my own vulnerability; my greatest love is walking around in the world with my heart attached to her and I can’t control what happens to her. I am pretty sure this is true of parenting any child.
I would never wish this disease on anyone or any family, but in the process of learning about, and dealing with it, I have grown both spiritually and intellectually. I have learned what is really important to me, and health and quality of life are at the top of that list. I don’t sweat the small stuff, what her grades are or the fact that we don’t get to do as many physically challenging, outdoor activities as we used to before we adopted her. But as she’s gotten healthier we have been able to do more.
I have become more flexible. Quitting my last job as the sole proprietor of my own landscape design business to care for her, opened up the opportunity for me to take my writing to another level. For years writing was one of my outlets for creativity. When she got sick I wrote to relieve my stress; writing about my experience allowed me to find some “order” in a life that was suddenly turned upside down with her diagnosis. I have since gone back to graduate school to get an MFA in Creative Writing. Even before that, I had started writing/support groups for parents who also have children living with chronic illnesses. As my child became an adolescent I started writing groups for teens living with chronic illness and will continue this work and offering reflective writing courses/workshops for healthcare professionals as well. I love the fact that I can return, in some sense, to an earlier career, that of mental health counselor with the added benefit of incorporating a creative outlet in my work.
So when people say how lucky my child is, I think, well maybe, but she does have to live with this, as yet, incurable disease, so what’s lucky about that? And I think, how lucky we are to be able to help her. I am not a big believer in fate or God, but I am a believer in making the most of what is given to us in this life, things we choose and things we don’t choose. I hope, like the first part of the Serenity prayer by Reinhold Niebuhr says, I am learning what I can change and what I can’t change.
God grant me the serenity
to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference..
I’ve been back in the US over a week now from Mexico City and Oaxaca. This is not a travel update but a mental status update. Time. Time is different. When in Mexico I felt my impatience and had to remind myself to breathe a lot, counseling that I live in a “too fast” world. What am I missing, I wonder to myself that I need to hurry so? Of course, the answer is, not much. It’s become the American default state to be in a hurry, to be constantly busy.
Crushed up against strangers on a train, standing cheek to chest for 45 minutes, was also a lesson. I was on vacation, most of the other people on board that train were on their way home from work. They do it daily. When at last a seat opened up, an elderly woman sat down immediately, before I could beckon to my complaining teenager to sit there. Of course the woman should get it. I hope someday I’ll be that woman, allowed to sit, but for now, I’m healthy, relatively young and don’t need it. She smiled, gratefully.
One afternoon, walking along busy, busted up sidewalks in Oaxaca I saw a man lying in the path. He had one shoe off, and was asleep or in a drunken stupor. No one stopped to check on him. No one was standing nearby with a cellphone in hand seemingly talking to the police or an ambulance. I checked to see if he was breathing and then I too walked on. I wondered if they had a 911 equivalent in Oaxaca and later asked someone. I was told they do but hardly anyone knows it or uses it. The weird thing was that the police and heavily armed Federal soldiers were everywhere in town. It was a festival week with lots of tourists, mostly Mexicans, and there was about to be a major demonstration by teachers and other union supporters (numbering 30,000 the paper later said). Yet, not one uniformed person seemed to be hovering around this passed out man.
I don’t know what more to say on this topic. I want to imagine that if he had been in the US and I’d seen him like that, I’d have called 911. The trouble is, I don’t know if there was more to his story than I could know, there was no one to ask.
I am afraid of becoming inured to suffering. That is the first step in dehumanizing someone. I know that the fast pace of life and my so-called ‘needs’ sometimes prevent me from helping people here at home and somehow, having the time in Mexico to witness, and nowhere I had to be, brought me closer to someone else’s condition.
Then again, like a doctor who witnesses pain on a daily basis, if I am not to become inured, I have to have ways to experience my feelings of helplessness and pain without becoming dysfunctional. Truthfully, this is a major reason I write. I hope my studies and work in graduate school continue to bring me closer to providing these same sorts of outlets for people in the medical world. We need caring and competent medical providers and they, because they are only human, need outlets for their emotions too..
For many, the word ‘ekphrastic’ is hard to find in a dictionary let alone hear its usage in daily speech. Ekphrasis, a Greek word, is a form of writing about art, defined by The Oxford Classical Dictionary as “the rhetorical description of a work of art.”
Edward Hirsch, in his book, The Poet’s Glossary, goes on to say that “The prototype of all ekphrastic poetry is Homer’s description of the shield that Hephaestus is making for Achilles in the Iliad.”(p.195)
Many, many poets and writers from Homer, to W.H. Auden, to William Carlos Williams to Marianne Moore, Anne Sexton, and Ted Hughes have chosen to write about works of visual art housed in museums and galleries. There are various approaches to ekphrastic forms and many points of view, well articulated in Twentieth Century Poetry and The Visual Arts by Loizeaux. But, no one that I know of has written a treatise about viewing art in hospital settings. This the area I have chosen to write from and about.
Anyone who has followed my writing life knows I am very interested in the intersection of art and healing, and in continuing this passion, I began an ekphrastic writing project last January at Swedish Hospital in Seattle (though their new campus in Issaquah also houses a collection), then moved on to Harborview and the University of Washington Medical Center’s art collections. All of these facilities are blessed with wide-ranging forms of visual art from paintings, to sculpture to glass, mixed media and fiber arts. Most of the artists are from the Pacific NW region though there are a few from outside it.
I spent 5 months touring these hospitals, taking pictures and writing poems and essays about various pieces of art, and my reflections on viewing art within a hospital setting. In the coming months I hope to share a few of these pieces with you. In the meantime, here is the philosophy that the U of WA Medical Center states about art and healing:
Art is everywhere in our world and art is essential. Viewing and creating art, as well as listening to music, play an important role in mental, physical, emotional and spiritual health. A growing body of evidence indicates that the presence of artwork, artists and art experiences in the patient-‐care environment benefits patients and their loved ones. Art provides a positive diversion, inspires hope, and contributes to an atmosphere of healing and restoration. In the hospital setting, art addresses the health of the human body and spirit, reminding us of the human connections, life experiences and memories that can support and comfort us as we confront illness.
I encourage you to find your way to one of these locations (not as a patient, hopefully) and take a look for yourself. You are free to wander the halls and clinic waiting rooms where you will find an abundance of pieces. If people ask if they can help you (which is a common question) tell them you are there to view the art. The more they hear this, the better for the life of the collections..
I want to make a plug for reading Trisha Ready’s article in The Stranger from last week. It is a brilliant piece of writing about healing from cancer with music, and fighting against the pronouncements of Susan Sontag in her book Illness as Metaphor.
While I have not had cancer, I have read Sontag’s book, and recently, a few others on the topic of Language, Metaphor and Writing about Illness and I think Ready does considerable work in articulating the medical aspects, choices and limitations of allopathic medicine along with the possibilities, and need for, less traditional forms of healing.
I am not ready to post my own essay on the topic of language, illness and healing, as I have it out for consideration of publication, but I hope to be able to offer it soon. In the meantime, read Ms. Ready!.
This could be the anthem for the entire session of Teens Writing from the Heart of Illness & Healing.
This is the cover of the anthology of the teen’s writings. After 8 weeks of reading and writing prompts in which a diverse group of students gradually opened up about the health issues they deal with, through their writing, we gathered them into this final version. They were a reticent group to begin with, or perhaps, just more reserved overall than the previous two groups, and they came from the eastside of Lake Washington, Beacon Hill and the central area in Seattle.
The poem from which the title was taken was written by a senior in high school. It was actually the last thing she wrote, written surprisingly quickly from a prompt on the second to last session that my co-teacher, Aaron Counts provided. The prompt started as a way to get them to write a brief biography of themselves in 24 words. In each successive version they had to reduce the “biography” by half, eventually whittling it down to one word. Then, they were to take that one word and write a poem from it. Falling is the name of the poem and I am including it (but not the author’s name) here.
Falling into a dark hole.
Someone catch me,
don’t let me fall.
Catching myself fast
to try and land on my feet.
Maybe falling feels better,
not knowing where I’m going
Fear, discomfort, curiosity, darkness.
I’m done falling, I landed on my feet.
I made it, but I’m not done,
I never am.
For a copy of this anthology or any of the other two, please let me know. I am especially happy to get them into the hands of anyone working with chronically ill kids in any setting..
I have begun an MFA in Creative Writing through Lesley University in Cambridge, Massachusetts. It is a low-residency program that I attend on campus, twice a year. In between I read, write and submit my work to a faculty mentor. This first semester I had the privilege of working with Rafael Campo, MD. and poet. Rafael is well known as a doctor who works primarily with oncology and HIV patients. He is also well known for his poetry and his unique teaching program in the medical school at Harvard University.
In his course at Harvard Medical School (HMS) Rafael exposes medical students to writings in a diverse array of literature. In his own words he says: “Medical students and house staff, as well as their medical faculty supervisors, find Art + Humanities @ HMS an invaluable resource in renewing their commitment to medicine, by stimulating their personal growth, mirroring their own life experiences through the lens of diverse peoples, and offering an alternative discourse of empathy and mutual respect to counter the growing cynicism in our profession.”
My work this past term was not only to read a range of poets and essayists who write about illness, the body, healing and language and write both poems and essays myself, but also to choose a variety of readings and create writing prompts for a class called Poetry and Prose Rounds held at the U of WA. I taught this course in conjunction with a professor of nursing, Josephine Ensign, who started it a couple of years ago. I had gone to the original workshop and found it very stimulating. The people who attended were from a variety of health fields. We again offered it to anyone in the health science field.
I will write more about the readings and prompts for Poetry and Prose Rounds, though some of that information is already available if you click the link for the class, above.
In addition, I also taught the third round of Teens Writing from the Heart of Illness & Healing and you can read about that and read some of the student’s work under another blog post.