April 17, 2014

What to do when you are steamed

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What to do when your kid(s) is driving you crazy and you are doing your best to be the “good enough” mom and take care of her needs?

This picture is worth more words than I can possibly string together. And the best part? Looking at it reminded me that it was taken by my kid, and that there are better moments. It’s good to remember, we all need a break.

What to do When the Closets Open

You know those 2 am post traumatic stress moments?  You know, when the “worst case scenarios” come out of their closet, throw open all the tidy drawers you kept closed in the light of day, strewing the folded ‘what ifs’ and sullying the newly laundered, ‘maybe we’re past the worst’?

more dirty laundry

Last week I was this basket case, wondering if the physical therapy my daughter was now engaged in to help strengthen her muscles, was doing damage rather than good.  She had come back from an appointment earlier in the day complaining about how sore she felt. Usually, sore muscles are a sign of pushing beyond one’s comfort level or norm. But in the recent past, too much stress on her physically (trying out a new sport) had most likely led to a relapse in her illness. Now awake and thoroughly surrounded by those guilt tripping needlers in my mind, I was giving in to my fear.

How did I not make myself more anxious than I already felt?

I had to get out of bed so as not to wake my husband, find my notebook and write down those fears. Also, I wrote down the facts of what had happened that day and in so doing remembered what her physical therapist had told me about how long she might be sore. 3 days he said, (and he was right), but I had to live through those days and see for myself, all the while listening to her “ow’s” and needs for neck or back massages, (which I was glad to accommodate). Each day the pain subsided a bit and I kept this, and my 7 years of experience, as my mantra.

Writing has been one of the most important things I’ve been able to do when I can’t do much else. I was able to go back to bed and sleep.  And in the morning I went to look for a poem I remembered by a woman named Anne Harrington.  The opening stanza is piled like a stack of laundry and reads:

Jammed/Crammed/Damned

Emotions piled in a corner

     One on top of another

     Stuffed in

     Crammed

     Jammed

     Heaped high

     Overlooked

     Too busy to get to…

I could get to them, I just couldn’t make them behave until I could put them on paper.

Someday I hope to be stacked more like this:  A zen stones skyscraper

 

 

Finding common ground: Writers & Parents of kids with chronic illness

For so many years having a child with a disability was a stigma. For some it was shameful, if not for the parents themselves, then often for other family members. Friends disappeared and if families were lucky, they met others like themselves or kept their “real” friends who made room in their hearts and minds for those of us, who may be considered, “other”.

I want to introduce you to three women who all parent a child, or children, living with a disability, and/or chronic illness.

Kim Poston Miller has two boys, both of whom struggle with Juvenile Arthritis. She has a terrifically informative website and has written a book for parents about how to not only survive but how to thrive, living with children with juvenile arthritis. This resource is not only useful for her book, Living with Juvenile Arthritis, a book for parents of kids with JA, but it is great for any parent who has a child with a rheumatic disease (Juvenile Myositis and Lupus for example) or other chronic illness.  She also provides resources for families and kids alike, on her site.

Jeneva Burroughs Stone is a gifted writer, essayist and poet. She blogs on two sites, Busily Seeking and Busily Seeking 2.0, about her life with her profoundly disabled son, typically developing daughter, husband and their lives, including their search and eventual finding of, her son’s diagnosis.  Jeneva also writes about larger social and political issues that effect healthcare and life with caretaking her son.  In her words about how receiving a diagnosis effected their family after 14 years of not knowing she says:

“…not only diagnosis created turbulence (I guess you need to ask yourself how you feel about it, or that becomes a topic of conversation because nobody really seems to know how to respond when you say, hey, I got a diagnosis for my kid after 14 years–we live in a casually therapeutic society), but also changing work situations for both my husband and myself, uncertainties about health insurance both as a result of transition and the question marks of ObamaCare, Robert’s first year of high school, starting a Medicaid waiver with overnight nursing for the first time–and that was just the fall.”

My newest acquaintance, one I’ve really only “met” via Facebook, is Elizabeth Aquino. (To be completely honest, I’ve not actually shaken hands or seen the other women face to face, but I have corresponded with them more extensively and have spoken on the phone with Kim.) Elizabeth’s website, a moon, worn as if it had been a shell, is also a wonderful mixture of excellent writing, disability issues and soul sustenance. She says, “I love poetry and discourse and gallows humor. I like to say that reading voraciously has been the only constant in my life. I am a fierce advocate for my daughter who has a severe seizure disorder of unknown origin, as well as for all special needs children. This is a place where poetry, politics, parenting, and disability intersect.”

I hope you will take time to read these women’s words. Leave them messages, it is one of the few ways caretakers of children with chronic health issues get social interaction.  I also hope reading them will expand your view of caretaking in the 21st century.

Writing, Chronic Illness and (sometimes) Making Art

A friend of mine, Kim Poston Miller, is the mother of two boys who both live with forms of Juvenile Arthritis. This is a similar, but somewhat different disease than Juvenile Myositis, but many of the same medications are used in treatment, steroids and methotrexate to name two. What is even more common are the sort of experiences we go through as parents of children with an inflammatory, autoimmune disease.  Kim’s way of coping with her circumstances led her to write a book for parents called Living With Juvenile Arthritis: A Parent’s Guide and to maintain a blog.

She graciously asked me to write a short section for her book and has now included me in her blog. This recent blog post describes how I came to write and publish my newest chapbook, The Moth Eaten World, due out in May, by Finishing Line Press.

Family Centered Care & Chronically Ill kids

In the January 20, 2014 edition of The New Yorker, Dr. Jerome Groopman writes about how we might best care for chronically ill children. He looks at teams of specialists that are trying to address chronically ill kids needs from more than one perspective. This is an issue close to my heart and involves a conversation that I’ve been privileged to be part of at Seattle Children’s Hospital.

I will not summarize this article, it is best to read it, but I will point out a couple of important statements and why they need to be taken to heart by other pediatric care providers and hospitals.

Christina Ulrich, an attending physician at Boston Children’s and Dana Farber says about treating pain; “…I learned you can’t treat a child’s pain effectively without understanding her anxiety and her social situation. It’s not just a matter of writing a prescription.”  This is profound.  She is talking about trying to understand a child IN CONTEXT, within herself, her family and her cultural background. We all suffer, but HOW we suffer and how we think about that suffering or that pain, can lead us to be treated in various ways.  For example, when a child is afraid of needles and needs an infusion, there are a number of ways to approach that. There are numbing creams and sprays to help alleviate the actual sting of the needle, there are Child Life experts who can talk the child (and help the family) through the actual needle insertion. They might also need to learn if that child NEEDS to watch the needle insertion in order to feel some control or whether distracting them and helping them focus on their breathing is better for their anxiety.

That is an example of a mild, but potentially frightening pain moment compared to a cancer patient’s treatment needs. In the latter case there might be others on the team that would help the child and the parents decide the best course of action for both pain and treatments.  Here is where my second concern comes into play; the family centered approach to decision making.

Janet Duncan, a nurse practitioner said, “we bring a little bit of a different perspective, because we sit with families, who teach us about how they make decisions. It’s not that there is a right or wrong; it’s really what is the best decision for your family, for your child.”  I don’t think I could say this any better. Doctors have medical knowledge but the family knows their child and the child herself might be old enough to express an opinion or need. All of this is important.

This is exactly what the Family Advisory Committee at Seattle Children’s Hospital spends time thinking and talking about to various providers and committees throughout the hospital. All of us are parents and we have had either good experiences of family centered care or bad ones.  Likely, both, and we don’t want to repeat the bad ones ever again.  More and more children’s hospitals are trying to move to a family centered model but it is still rare to have teams of specialists from various fields consulting on one case. Though potentially more expensive and time consuming initially, it may lead to better outcomes and reduced expenses as families adhere better to treatment regimens and their children feel better cared for.

 

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.

The Art of Losing

I highly recommend a book of poetry edited by Kevin Young called The Art of Losing: Poems of Grief and Healing.
The title is from Elizabeth Bishop’s poem One Art. I got a hardback version at a book closeouts website through Amazon (forgive me independent bookstore lovers) for about $8 + shipping.

I want to quote Kevin’s opening lines in his introduction as a way to bring you into wanting to also get the book.
“I have begun to believe in, and even preach, a poetry of necessity. This is a recognition not just of the necessity of poetry to our lives, but also the fact that necessity is what drives most of the poetry that matters, or the way that it matters.” And, “a poem must be willing to be unwilled, beckoned by need.”

And this book is filled with poems driven by need: elegies, remembrances, dedications, words that attempt to point towards the things that are often unspeakable, or seemingly feel that way.  I love the way I am drawn to think about other forms of art, painting and music, as I read different poems. I thought about Ad Reinhart and his seemingly monochromatic paintings in all black and all red. They beg us to be absorbed into them, by them. They seem to hover around those “almost unspeakable realities” and yet, we keep trying to find the words and images, sounds and visuals to express our ineffable lives.

The Art of Losing is a remarkable compilation of poets living and dead, from W.H. Auden, Emily Dickinson, Anne Sexton to Dean Young, Robert Hass, Lucille Clifton, Adam Zagajewski, just to name a few. And there are so many, many more.  For what greater mysteries are there than death, love and living.

As William Faulkner is quoted in the opening section called Reckoning:

Between grief and nothing, I will take grief.

Theodore Roethke says in the section, Recovery:

I learn by going where I have to go.

And finally, Philip Larkin opens the last section, Redemption with:

What will survive of us is love.

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.

 

Brain Review

After reading a blog post of mine, I was recently contacted by a woman, Allison Morris, who has made a simple graphic  (at onlinecollegecourses) of the brain to help people understand the supposed functions of each area.  While I applaud this lively experience I am reminded by Joseph LeDoux, in The Synaptic Self, that the brain doesn’t only have discreet areas of operation, it is in the synapses that information is recorded and stored and then transferred to other areas of the brain and to the genes themselves.  Here is a statement by him:

Synapses are the spaces between brain cells. But more importantly, they are the channels of communication between cells that make possible all brain functions, including perception, memory, emotion and thinking.

It’s practically a truism to say the synapses underlie personality since synapses underlie everything the brain does. More important yet: synapses are the sites of storage of information, including information that is encoded by our genes and also by our experiences — our memories.

When it comes to personality, genes and experience are just two ways of doing the same thing — wiring synapses. That’s why I say, To the extent that we are a product of our genes and experiences, we are our synapses.

This doesn’t mean that the essence of who you are is encoded at a particular synapse. It means that your self is a very complex pattern of synaptic connectivity in your brain.

In thinking about how emotion, writing and the brain come together, this man has pushed my understanding along quite a ways.  If this area interests you, I highly recommend his other book, The Emotional Brain too.

A case for writing about children with chronic and/or terminal illness: from a parent and poet’s perspective

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Writing and talking about our children with chronic illness is a difficult topic for many of us. For too long this topic was whispered about, pity and fear being the prevailing feelings of those who have typically developing and healthy kids.  But those of us who have children living with chronic and/or life threatening illnesses are learning to speak out about our lives and experiences.  And I for one, think it is healthy and important to expand the conversation about not only “acceptable” topics of discussion and art but also about the enormous role that health and illness play in our economy and society at large. If we can’t speak, listen and discuss these issues, we can’t affect change in them either.

Since this is a big topic, let me start small and personal. Here is an article by Maria Kefalas about her life with a terminally ill child, one of three children.  She has profound insights about mothering in general.  These are some of the frequently cited “silver linings” that many of us come to learn when we have a child with an ongoing health challenge and is an important piece of the dialogue between all families, not just ones with special needs kids.

Emily Rapp, whose son Ronan recently died from Tay-Sachs disease, has written extensively about her journey with her son. Most recently she wrote an article about writing about grief, pain and loss itself. As a writer, she has had to negotiate that line between raw, undigested feelings, catharsis and transforming feelings into art, again, making the case that we need to not only express and channel these feelings, but in so doing, we enlarge society’s understanding of the human condition.

This past week I read some of my poems to an unfamiliar audience in a local library reading series. These included poems about my journey, and others I’ve met and interviewed who are parenting a child with a chronic illness.  The room was silent, not even an “ahh”, or a sigh could be heard during some of the usually more painful passages.  Laughter though, was expressed in “appropriate” moments.  I was struck by the difference in this audience from others.  Were they more shy?  More embarrassed, taken by surprise?  Hard to know.  I know the material is powerful, provocative and that I read it clearly and straight forwardly. A comment by an unknown audience member afterward, who had a hard time expressing his feelings but wanted to let me know he “felt” for me, made me think that when the material is painful, most people don’t know how to respond.  This was not true of my audience at a local children’s hospital or even among a large group of nursing students.  But those audiences are more “schooled” in illness and the emotional effects of it on families.

In the book Writing and Healing: Toward an Informed Practice,  essays about the need for, and success of, integrating personal narratives about traumatic experiences in creative writing programs are explored. I find this heartening, it is a way to build emotional intelligence and muscles in our future readers and listeners.  Here is a quick outline of the book:

“We expect poets to craft art from suffering, but do we allow ourselves or our students to go this route? In this new book Charles Anderson and Marian MacCurdy compile 15 essays written by and for writing teachers and others who have experienced or would like to encourage writing and healing in a variety of settings, classrooms, substance-abuse treatment centers, AIDS support groups, and elsewhere throughout our communities.The essays explore particular writing practices and present theories that support writing as a way to approach and understand difficult situations, such as grief, death, and illness.

The editors recognize and address the conflicts inherent in promoting expressive writing and argue convincingly for the inclusion of personal and political concerns in the writing classroom or other settings. Writing and Healing provides a unique occasion for teachers, scholars, and other professionals to begin an open, serious conversation about the healing power of writing.”

A friend, well known poet and MacArthur Fellow, Heather McHugh, recently started an organization called Caregifted, to give long term caregivers a respite from their ongoing, life path of caring for chronically ill or special needs children.  Her understanding about the societal impact of special needs children and their caregivers is acute and based on a relationship she has with a godson and his special needs child.  Her take on the need for compassion and understanding is this: “Compassion? useless without practicum.”

But how do we move towards action if our capacity for feeling and thinking about these issues is stunted? How do we begin to talk about the issues if we have not read or listened to others discussing the impacts of life threatening or chronic illness on families?  It is to these points that I say, we can’t. We must write and speak out. We must learn to tell our stories, to imbue the personal narrative with a larger political and social perspective. This is one reason why I teach a writing workshop for parents who have a child living with ongoing health needs.

We also know that families of a special needs child face greater economic challenges. If they have insurance, they are lucky. If not, the rest of society supports them with emergency room visits and probably less compliance with health routines and further degradation of health, which in turn puts more burden on a taxed health system. Then if the mother or primary caretaker is depressed or isolated because of her caretaking role, often times adherence to health needs of the child can be unseen or ignored, in turn, leading to poorer outcomes and the need for intervention for the child. It becomes a downward spiral.

We must understand that by writing, reading, listening to or seeing stories about ALL the ramifications of health and health needs, about trauma and its psychological, social and economic impacts, can enlarge our capacities as humans to care.  As Buddhist monk, Pema Chodron believes:  [...when] we are encouraged to simply look deeply at joy and sorrow, at laughing and crying, at hoping and fearing, at all that lives and dies.  We learn that what truly heals is gratitude and tenderness.”  And then hopefully, learning to bear these feelings helps us to broaden our actions.