November 25, 2015

What is Luck, What is Fortune?

51kg0CmHBpL._SY355_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..

Mexico state of mind (mine)

Statue in Mexico City, Parque Alameda Central

Statue in Mexico City, Parque Alameda Central

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..

Ekphrastic Writing and Hospital Settings

Crossing Paths--Dinh Q. Lê, 1997

Crossing Paths–Dinh Q. Lê, 1997

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..

Reading Trisha Ready in The Stranger-Music, Healing, Cancer & More

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!.

I’m Done Falling

This could be the anthem for the entire session of Teens Writing from the Heart of Illness & Healing.

I'm Done Falling photo

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..

Graduate School again? Poetry and Healing


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.



What to do when you are steamed


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:


Emotions piled in a corner

     One on top of another

     Stuffed in



     Heaped high


     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..