“The Healing Power of Sound”: A Q &A with Dr Mitchell Gaynor

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Dr. Mitchell Gaynor is a board certified medical oncologist, internist and hematologist and the Founder and President of Gaynor Integrative Oncology. Currently a Clinical Assistant Professor of Medicine at New York Presbyterian/Weill Cornell Medical College, Dr. Gaynor also served as the medical director and director of medical oncology at the Weill Cornell Center for Complementary and Integrative Medicine.

Dr. Gaynor has served on the Executive Review Panel at the Department of Defense – Alternative Medicine for Breast Cancer Sector- and the Smithsonian Institute’s Symposium on New Frontiers in Breast Cancer and the Environment. He is a frequent speaker and lecturer at hospitals, conferences, and universities throughout America and abroad and the author of five books, including two on the therapeutic use of sound and music.

Gaynor Integrative Oncology allows patients to integrate state-of-the-art allopathic medicine with nutrition and mind-body techniques, which Dr. Gaynor has pioneered. The practice also provides music-based meditation sessions and educational conferences for music therapy, yoga, chi-gong, and other alternative therapy instruction. Patients may participate in both group classes as well as see individual practitioners. Patients can thus incorporate meditation, healing sounds, guided imagery, and cognitive behavioral therapy, in concert with activities such as restorative physical therapy, aerobic exercise, chi-gong as well as botanical and nutritional counseling. This integrative program is the foundation for creating a healing partnership between doctor and patient. The latest addition to the healing arsenal is Crystal Sonic Therapy, which Dr Gaynor presented on the Dr Oz show this July.

I can personally testify that Dr Gaynor is an extraordinary doctor and visionary healer. His brilliance, compassion, and dedication have helped several members of my family who either have been diagnosed with cancer or are genetically predisposed to it. In addition, Dr. Gaynor’s sound healing CDs have been invaluable to me in coping with stress, insomnia, and creative blocks; I use them frequently to soothe, galvanize, and motivate me. I’m delighted that Dr. Gaynor has agreed to answer my questions about the CDs and to give free copies of the CDs to one lucky commenter!

How did you become interested in sound as a healing modality? And what specifically inspired and motivated you to create these CDs?

The CDs are the result of decades exploring the science and history of sound and music and healing. My mother was diagnosed with breast cancer when I was six years old and succumbed to the disease when I was nine years old. Her last two wishes were for my father to buy me a piano and to make sure I took piano lessons. I studied classical piano and progressed rapidly, playing in competitions and eventually learning music composition. Many nights after my mother’s death, the only way I could get to sleep was by composing music in my mind in order to drift off. I would then play the music and write it the following morning. However, by the time I was 14 years old, I had decided on a career in medicine and gave up playing the piano so I could focus on my math and science courses.

Many years later, I was given a Tibetan metal singing bowl by a Tibetan monk who was a patient in the early 1990s. These bowls are made of between seven and nine different metals, each vibrating at a different frequency. The effect is like church bells ringing simultaneously. I was struck by how the sound was felt throughout my body. I had been using guided imagery, yoga breathing, and meditation with my patients for years. I began combining these singing bowls with those techniques and the results were accelerated and more profound for patients. I began to travel to India to study yoga breathing, chanting and Indian music. I also started a charity that eventually funded two hospitals and an orphanage in the school in a very poor part of southern India. I then started using quartz crystal singing bowls that can be tuned to any frequency with great accuracy. They can be combined with precious metals such as gold and platinum as well as other minerals such as ruby and emerald.

I wrote The Healing Power of Sound, published by Shambala in 2002. I also made several CDs incorporating music therapy, Tibetan and quartz crystal singing bowls, guided meditation, and yoga breathing instruction. I called this music Crystal Sonic therapy.

The son of one of my patients, Jon Regen, recently composed a song written for his father called “Stay.” The song referred to his father having been given a terminal prognosis after being diagnosed with two cancers presenting simultaneously. The father had a connection to Dr. Oz who subsequently referred the patient to me. The patient was able to have successful surgery for both malignancies and is currently in complete remission. Jon wrote the song about the entire transformative experience in which his father was initially treated like a nameless number but was ultimately considered as a human being with a problem that required solutions and compassion. I hoped at the time that I would be able to make an album with Jon one day.

In March I received a call from a producer at the Dr. Oz show inviting me to appear as the expert on Crystal Sonic therapy. I thought to myself: “this is the opportunity to create an album with Jon.” I made the call to him and we soon begin working on “Change Your Mind,” which we created in under 24 hours. The harmony and resonance of the way we composed and played music was amazing! We subsequently composed two more albums, “Uplift” and “Peaceful Sleep.”

I continued the creative process and the joy of playing piano and keyboard returned. I had not played since I was 14 years old. I composed and performed 18 more songs for three albums: “Crystal Sonic Sound Sleep”, “Crystal Sonic Clear Focus”, and “Crystal Sonic Sampler.” For the last three CDs, I recorded the crystal bowls into a synthesizer and performed and wrote melodies using about 30 different bowls. I combined these with live natural sounds of quartz crystal singing bowls, nature sounds involving water, and a type of Indian drum called the tabla. The bowls used were from the “alchemy set” made by Crystal tones. They contained everything from gold, platinum, and Ruby, to rare earth minerals like kunzite and azetolite.

How do you incorporate these CDs and other kinds of sound healing into your practice?

I currently do meditation groups several times per month with my patients. During these groups, I play several of the quartz crystal singing bowls for taking the patients through guided meditation using imagery and yoga breathing which I studied in India. I also have a bio sonic machine- its use was demonstrated on Dr. Oz. I use this with each patient during initial consultations and follow up office visits. This machine allows the listener to hear music via headphones and experience music as vibration via a cushion which converts the music to corresponding vibrations. This cushion is moved over the heart and belly so that the listener has a whole new appreciation for music as harmonic vibration.

What are some sounds that are particularly aversive or detrimental to the immune system?

The human body is 60% water which is an excellent conductive medium for sound and vibration. Professor Emoto in Japan has done studies using x-ray crystallography which demonstrated that when water freezes its crystalline structure is influenced by sounds in the environment. Harmonious sounds yield crystals which are beautiful hexagons whereas disruptive sounds containing disharmony (yelling or cursing) yield crystals which have dysmorphic irregular shapes. One could presume that our bodies have been influenced by disharmony in our environment and our lives. We know from the field of neuro-cardiology that our heart rate variability changes with our emotional states. Stress causes a higher heart rate variability which is associated with decreased coherence in our brainwave patterns. This means that the hemispheres in our brain can either work in harmony or not. The electro magnetic field generated by the human heart is 5000 times stronger than that generated by the brain. This is why you can put electrodes on the wrists and ankles and see a nice clear EKG tracing; however with the electrodes placed on the skull you see only a very small EEG tracing. Therefore it is the heart that entrains the brain, not vice versa. Entrainment is a concept that was demonstrated by the 17th-century physicist, Huydgens. He studied pendulums hanging from clocks on a wall. He noted that the larger pendulum would entrain the smaller pendulums. The net effect would be that the pendulum motions would be equal and opposite so that enough that they “canceled each other out.” This is an example of nature moving toward harmony. I believe it is important for all of us to “re-tune” ourselves every day using Crystal Sonic therapy.

Who are some of your favorite musicians and what are some of your favorite styles and/or pieces of music?

“Have I Told You Lately” By Van Morrison and “Tears in Heaven” by Eric Clapton are two of my favorite popular songs. The emotional intensity, love, and devotion are conveyed in both the words and melodies. “Stay” by Jon Regen is similar in style. John Lennon’s “Imagine” also ranks high amongst my favorites as does George Harrison’s “My Sweet Lord.” In addition, I love Indian devotional chanting and music, and I have been influenced by the work of Philip Glass. The classical music that I began playing at age 9 is still a big part of my music library and includes Beethoven, Chopin, and Mozart.

What are some other creative projects that you have in the works?

I am currently working on a new book which is almost complete called Dr. Gaynor’s Eco-Genetic Diet. It is a book about how micronutrients in our diet can affect gene expression. We are born with the genes that are given to us but the expression of those genes can change throughout our lives depending upon the nutrients as well as the toxins that we are exposed to. I was at Rockefeller University as part of my post-doctoral training studying nutrient gene interactions and the immune system. I was amazed at the fact that we really “are what we eat” and that with the best medical training in the world, nobody had ever taught me this. I embarked on a career combining genomics (toxicogenomics and nutritional genomics) with medical oncology and cancer prevention.

The concept of homeostasis and harmony applies equally to the mind-body aspect of my work as well as the nutritional. The endocrine, cardiovascular, immune, and nervous systems all must be functioning in harmony for optimal health. However, when one or more of these come out of harmony, disease results. Therefore, the foods we put in our body are as important for “re-tuning” as listening to Crystal Sonic therapy.

Comment on our interview to be entered into a drawing for a chance to win a set of CDs!

To find out more about Dr Gaynor’s practice, go to

www.gaynoroncology.com

For more on Dr. Gaynor’s Crystal Sound Healing Techniques and CDs, click here:

www.crystalsonictherapy.com

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A Q &A with Raffi: from Baby Beluga to Safer Social Media

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One day in May 2012, I saw a wonderful piece on Huff Post about visiting 92 year old Pete Seeger by the children’s musician and child advocate Raffi. Both of these men are great heroes of mine and have been instrumental in Benj’s development. Pete Seeger is perhaps one of the 10 most influential figures in my life- his songs filled my childhood, he is a moral lodestar for me, I wrote much of The Anti-Romantic Child while listening to his music. Dr G., Benj’s beloved therapist who first evaluated him when he was almost 3, initially told us to buy Raffi DVDs and CDs because she thought they might help us engage with Benj via music and teach him about social exchange. Benj and I watched A Children’s Concert with Raffi every single day for months during his first stretch in therapy. Richard and I played Raffi’s CD “Let’s Play” during all our drives to and from the Yale Child Study Center for Benj’s evaluation sessions in May of 2002 (so baby James heard the music too before he emerged a month later). Raffi’s DVDs and CDs were the nurturing and inspiring soundtrack of Benj’s early years in therapy, I sang Baby Beluga to both boys every night for years, and Raffi is one of the people I admire most in this world for his talent, humanity, generosity of spirit, courage, and unwavering commitment to the well-being of children.

I shared the Huff Post piece on my author page on Facebook and clicked on a link to follow Raffi on Twitter. The next day, to my great surprise and delight, Raffi started following me and tweeted a recent newspaper article about me to his followers and then to me with the following note: “Very Moving. Love it. Would be a Joy to meet you one day.” Let’s just say that that was a joyful day in our household with lots of happy shrieks from Benj and James!

Although we have not yet met, Raffi and I have since become fast online friends and mutual supporters. He has a new and important book just out called Lightweb Darkweb: Three Reasons To Reform Social Media Before It Re-Forms Us. I recently interviewed Raffi about the book and about his commitment to honoring children and making the world a safer and more nurturing place for them. Comment on our interview below to be entered into a drawing to win a signed copy of his book!

1) Why did you decide to write this book? What do you hope to achieve with it?

I wrote Lightweb Darkweb in response to the suicide of Amanda Todd, a 15 year old who’d been tormented for two years on Facebook by a sexual predator out to blackmail her. Young user safety is the #1 reason why we need SM reform. I hope this book fills readers with a sense of urgency on the need to protect young people online, and that there’s much we can do about this. I hope the book deepens the discourse on the digital revolution and its impacts on kids, families and society. InfoTech’s intrusion on child development needs consideration.

2) What are some of the benefits of social media and the information super highway?

The benefits of what I call the Lightweb are well known. We love connecting with people worldwide quickly and easily in a number of text ways, as well as by real time audio & video. We can share electronically documents of various sizes with one person or many at a time. Businesses can get place their products & services before a wide audience. The world’s libraries are at our fingertips. Distance learning is a boon for many. We can use social media for good.

3) Tell us a little about the Three Good Reasons you give to reform social media?

SAFETY is the first reason for reform: not only young user safety, but also for all of us whose privacy has been eroded.

INTELLIGENCE is another key reason for reform: Net dependence & addiction are on the rise as ever younger kids are allowed to ‘play’ with expensive ‘shiny tech’ devices made for adult use. Emotional intelligence and societal intelligence are affected.

SUSTAINABILITY is the third reason for SM reform. The ecology of InfoTech is an eye-opener that makes you realize the electronics industry must reform its toxic mining practices, device assembly conditions, and disposal practices.

That’s why, under current conditions, the cost of enjoying the Lightweb is too high. With reforms we can subdue the Darkweb and thus truly optimize the Lightweb.

4) What are three things every parent can do immediately to make the web safer for their children?

First, educate yourself on the SM privacy settings; read this book, with your teenager if possible. Secondly, have a family SM policy, as I outline in the book; this includes limited screen time, no devices at the dinner table, etc. Thirdly, visit www.redhoodproject.com and sign the Open Letter to Facebook that I co-wrote, urging Safety By Design changes by this multi-billion dollar company that talks a lot but does little for user safety.

5) What are some things that lawmakers can do to make the web safer for children?

Lawmakers can bring social media into the same regulatory framework that applies to all conventional media. Verified user ID is needed to avert torment by anonymity that is currently all too frequent & easy online. Sexually explicit websites should not be available to those under 18 years of age. Sexting by minors should be prosecuted under existing child pornography laws; parents & kids need to understand the consequences of such actions. Police officers need to take chronic online tormenting cases seriously.

6) What are some of your favorite recent books about parenting and children?

Most of my reading while writing this book has been about the effects of the internet and social media. Lightweb Darkweb has a bilbiography which includes some of my favourites, such as:

Mark Bauerlein, ed. The Digital Divide: Arguments for and against Facebook, Google, Texting, and the Age of Social Networking. New York:
Carr, Nicholas. The Shallows: What the Internet Is Doing to Our Brains. New York: Norton, 2010.
Morozov, Evgeny. The Net Delusion: The Dark Side of Internet Freedom
Rushkoff, Douglas. Present Shock: When Everything Happens Now
Turkle, Sherry. Alone Together: Why We Expect More from Technology and Less from Each Other.

Also worthy of mention:
Axness, Marcy. Parenting for Peace: Raising the Next Generation of Peacemakers.
Linn, Susan. Consuming Kids: The Hostile Takeover of Childhood.
Young-Bruehl, Elisabeth. Childism: Confronting Prejudice Against Children


7) Who inspires you? (public figures, historical personages, people in your life, even fictional characters)

Martin Luther King Jr, Jane Goodall, Nelson Mandela, The Dalai Lama.

8) What is your motto?

Respecting Earth & Child is the slogan of my Centre For Child Honouring: www.childhonouring.org

9) What is your favorite song you ever wrote and why?

“Baby Beluga,” my best known-song (I’m told) gives much joy; it’s a metaphor for a love of beauty and swimming in the spirit of one’s true nature.

10) What are your goals and aspirations for the rest of your career? more music, touring, books, social justice and advocacy work?

All I do is for joy and sustenance, for the greatest good of the greatest number.

I look forward to more concerts, songs, CDs, books and continued advocacy for social justice—the duty of every conscious citizen. I look forward to the day when Safety By Design will be the hallmark of a reformed and enlightened Social Media industry.

I’d love to inspire “beluga grads” to answer the call to shine their light for a more humane and socially conscious Lightweb.

11) How would you like to be remembered?

For my love of children, as someone who cared for the human family.

Follow Raffi online at

https://www.facebook.com/Raffi.Cavoukian
https://twitter.com/Raffi_RC

Raffi Cavoukian is known to millions simply as Raffi, a renowned Canadian singer once called “the most popular children’s singer in the western world” (Washington Post).

Raffi was a pioneer in music for children and families, bringing quality music to children with respect for their age and growing minds. Parents and educators embraced his music and his CDs, tapes, videos, and DVDs sold over 14 million copies in Canada and the US, and his books, more than 3 million copies. A generation saw him in concert and grew up singing Down by the Bay and Raffi’s signature song Baby Beluga. “Beluga grads” often tell him they’re now raising their own kids with his songs.

In his three-decade music career, Raffi refused all commercial endorsement offers, and his triple-bottom-line company never directly advertised or marketed to children. He is a passionate advocate for a child’s right to live free of commercial exploitation.

In the 1990’s Raffi turned his attention more fully towards global issues of sustainability and for his work has been recognized with many awards including the Order of Canada and the United Nations’ Earth Achievement Award, among others.

Raffi’s years of working with children and educators has evolved into a philosophy that we all can apply to help create a viable future: a restorative, child-friendly world for ourselves and for those to come.

Raffi is Founder and Chair of the Centre for Child Honouring on Salt Spring Island, British Columbia, which serves as an education hub for the advancement of Child Honouring as a universal ethic. www.childhonouring.org. In the anthology Child Honouring: How To Turn This World Around, co-edited by Raffi, foreword by the Dalai Lama—luminaries from a number of disciplines join the call for a new covenant with the world’s children.

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“Handling The Truth”: A Q &A with Beth Kephart

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Beth Kephart is the award-winning author of sixteen books, including five memoirs. Handling the Truth: On the Writing of Memoir (Gotham) was recently featured alongside the books of Stephen King, Ray Bradbury, and Phillip Lopate as a top writing book in O Magazine. Kephart’s other books include numerous young adult novels, most recently Small Damages, which was named a top book of the year on many lists and was just released in paperback, and three Philadelphia stories: Flow: The Life and Times of Philadelphia’s Schuylkill River, Dangerous Neighbors, and Dr. Radway’s Sarsaparilla Resolvent. She is teacher of creative nonfiction at the University of Pennsylvania and a frequent contributor to the Philadelphia Inquirer and Chicago Tribune.

I recently interviewed Beth Kephart about Handling The Truth, her favorite memoirs, her best advice to aspiring memoirists, her writing practice, and more. Comment on our conversation to be entered into a random drawing for your very own free copy of Handling The Truth!

1) Why did you decide to write a book about the writing of memoir? What do you hope to accomplish with it?

Handling the Truth arose out of my work at the University of Pennsylvania, where I teach creative nonfiction in the spring. As a teacher, you are forced to think hard about form and genre. What makes memoir memoir, for example? What do I hope students will discover in the books I assign? What do I want for them as writers? Why does memoir even matter? How have I personally been blessed and bruised by the form? What don’t I want for my students as they grow as people and as writers? And then, of course, I just fell in love with my students, and I felt the desire to write about them, and all they were teaching me. I tried not to write the book for awhile. And then I just couldn’t help myself.

2) What’s your favorite
parenting memoir?
family memoir?
travel memoir?
addiction and recovery memoir?
illness memoir?
grief memoir
difficult childhood memoir?

Oh, it’s so hard to choose any favorites, really. Because each book teaches something new, and each book rises where you might not expect it, and each book is right for a certain reader at a certain time. It is difficult, too, to classify memoirs, for they often transcend boundaries. I write about some 100 memoirs in Handling the Truth. I can tell you which books I have loved teaching—which books I’m always tempted to assign.

Running in the Family by Michael Ondaatje is on the top of that list—a travel memoir, a family memoir, a difficult/interesting childhood memoir, and a don’t-do-this-stuff-as-a-parent memoir. But mostly a collage and a poem and a search.

The Duke of Deception by Geoffrey Wolff is right up there as well—the story of the biological father both Geoffrey and his famous brother Tobias shared, though Geoffrey grew up with the dad and Tobias with the mother. This is also a family memoir and a difficult childhood memoir, but I think of it as a forgiveness memoir.

I like to teach Lucy Grealy’s Autobiography of a Face, which some might classify as an illness memoir, but Lucy herself would cringe at the label. Because really this story of facing disfiguring cancer as a child is a story about beauty, and what it is, and how it matters, and where it can be found.

Caroline Knapp’s Drinking: A Love Story is infinitely teachable, too. This, of course, is about addiction, but it’s a very universal tale; it isn’t only and exclusively about Caroline and all those years she spent trying to escape her own anxieties with alcohol.

Grief. Elizabeth McCracken and Abigail Thomas write magnificently, understatedly, about grief and their respective losses (a baby, a husband) in An Exact Replica of a Figment of My Imagination and A Three Dog Life, respectively. And Joan Wickersham’s The Suicide Index, which I read too late to include in Handling, is brilliant.

And parenting. Well. There are so many wonderful books—yours—The Anti-Romantic Child— among them.

I list these books and then I think of all the other memoirs—and memoirists—I love. I mean no harm by not naming them all.

3) What’s the biggest misconception about writing memoir?

That it’s mostly about personal therapy. The process can be therapeutic. But the final book must not simply be a woe-is-me accounting of something that happened. That closes the door on readers.

4) How is writing memoir similar to and different from writing fiction?

Both require imagination. Both should entail research. Both must come from a big place, a big need, a big something to say. But memoir does what it can to map the truth (as difficult as that can be). And fiction is free; it has no bounds.

5) What novels do you think might be especially helpful to aspiring or practicing memoirists?

What a fantastic question!! (You rock, Priscilla Gilman). Why don’t we start with those novels that are very close to truth. Say Her Name, for example, by Francisco Goldman, which recounts his marriage to a young woman who died by force of the sea. It’s her story, but it’s her story reimagined. Goldman doesn’t want anyone to think that it all happened just precisely like this. I’d like also to note Vaddey Ratner’s In the Shadow of the Banyan as a novel that is hugely autobiographical—retracing the author’s experience during the Cambodian genocide. The book was written, in large part, to honor Ratner’s father. But because the author was a child when so much of the (terrible) action took place—and because she needed the freedom that fiction yields—she wrote her book as a novel.

Why not also look at Dave Eggers’ A Heartbreaking Work of Staggering Genius, which was labeled as memoir, but which Eggers himself strongly asserts, in so many footnoted ways, may have more fiction in it than “traditional” memoir. And memoirists should make a habit of reading those writers—Alice McDermott, Colum McCann, Ondaatje, again—who can write like hell. All memoirists should write like hell.

6) At the risk of offending, can you name for us a memoir that was lauded by others or sold well, was celebrated or successful, but that you just didn’t like? Why didn’t you like it?

Yes. You know me well. I do worry about offending. I try never to think about liking or not liking, but about whether or not the book is truly memoir (since I teach memoir). I think readers of Handling the Truth may well wonder whether I simply have not read some of the most famous contemporary “memoirs” like The Kiss (magnificently written) or Lucky or Wild or Tender at the Bone of This Boy’s Life. I did the read them (and many others). But for one reason or the other—too purely autobiographical, too ultimately self-involved, too overtly fictionalized—I did not include them in my book. That doesn’t make any of these books bad books by any stretch. That doesn’t mean I didn’t like (some of) them. It just means they are not truly memoir, the way I have come to think of the term. Just because a book isn’t memoir doesn’t mean it is a bad book, I guess I’m saying.

7) What are some of the most obvious no-nos for memoirists?

Don’t preach, don’t condemn, don’t accuse, don’t judge, don’t write autobiography.

8) Is there something that all good memoirists do?

Think beyond themselves.

9) Can you describe your writing practice for us? Where do you write? How often? Do you have a particular routine or set of requirements that you need in order to write?

You know, I’m often so busy with my day job that I just plain don’t have time to write most of the time. But when I do—in stolen weekend hours, or over holidays—I don’t work at the computer until I have to. I sit on the couch, with pen and paper, put my head back and dream. To begin any project I take a walk. Just to clear the air. Just to help me think beyond all the worries that crowd my day. But, gosh. It’s been two months now since I’ve written book material. I wonder if I still know how it gets done.

10) What is your favorite poem and why?

Oh, that’s a tough one. A favorite, she asks! Can I list favorite poets? I will. Stanley Kunitz. Jack Gilbert. Gerald Stern. Mary Oliver. Oh, I will tell you the poem I love so much that I always read it to my younger students (and include in my novel about a young poet, Undercover). It is called “Wild Geese.” It begins:

You do not have to be good.
You do not have to walk on your knees
for a hundred miles through the desert, repenting….

Just typing those few lines for you right now—it released me. That poem is so empowering and so forgiving and so necessary. I give it to you, to everyone—as powerful as the best memoir anywhere.

Learn more about HANDLING THE TRUTH here:

http://beth-kephart.blogspot.com/2013/07/handling-truth-jilly-joy-and-chippy.html
http://beth-kephart.blogspot.com/p/handling-truth.html

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A Q &A with Roxana Robinson

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Roxana Robinson is the author of the five novels Sparta (2013), Cost (2008), Sweetwater (2003), This Is My Daughter (1998), and Summer Light (1988); the three short-story collections A Perfect Stranger and Other Stories (2005), Asking for Love (1996), and A Glimpse of Scarlet and Other Stories (1991); and the biography Georgia O’Keeffe: A Life (1989). Four of these were named Notable Books of the Year by The New York Times. She has received fellowships from the National Endowment for the Arts, The MacDowell Colony, and the Guggenheim Foundation.

When I worked as a literary agent, I was fortunate enough to handle Roxana’s first serial rights, and got to know her as not only an extraordinary writer but also a kind, thoughtful, and generous person. I was bowled over by Roxana’s riveting new novel, SPARTA. Here’s the description of SPARTA from the publisher:

Going from peace to war can make a young man into a warrior. Going from war to peace can destroy him.

Conrad Farrell has no family military heritage, but as a classics major at Williams College, he has encountered the powerful appeal of the Marine Corps ethic. “Semper Fidelis” comes straight from the ancient world, from Sparta, where every citizen doubled as a full-time soldier. When Conrad graduates, he joins the Marines to continue a long tradition of honor, courage, and commitment.

As Roxana Robinson’s new novel, Sparta, begins, Conrad has just returned home to Katonah, New York, after four years in Iraq, and he’s beginning to learn that something has changed in his landscape. Something has gone wrong, though things should be fine: he hasn’t been shot or wounded; he’s never had psychological troubles. But as he attempts to reconnect with his family and his girlfriend and to find his footing in the civilian world, he learns how hard it is to return to the people and places he used to love. His life becomes increasingly difficult to negotiate: he can’t imagine his future, can’t recover his past, and can’t bring himself to occupy his present. As weeks turn into months, Conrad feels himself trapped in a life that’s constrictive and incomprehensible, and he fears that his growing rage will have irreparable consequences.

I recently talked to Roxana about the composition of and veterans’ reactions to SPARTA, the novel’s universal parenting lessons, her writing process, her favorite authors, and her growing interest in nature writing.

1) How and why did you decide to write a novel about an Iraq war veteran suffering from PTSD?

It started six or seven years ago, when I read a front-page article in the New York Times about the troops in Iraq. The article described what’s now common knowledge, but at the time it was new, and it stunned me: our troops were sent out in unarmored vehicles over roads studded with IEDs. They were being blown up and they were suffering from TBIs (Traumatic Brain Injuries), but the military was reluctant to diagnose this because it was expensive to treat and it would mean removing combatants from the field.

I had never supported the war, and I hadn’t ever voted for Bush. But I had imagined that, as the greatest military power in the world, that if we went to war we would do it properly, and we would send our troops with the proper equipment and offer medical treatment when it was needed. I could hardly believe what was going on. I began reading about it – not policy material, but reports about what it was like to be a soldier there on the ground. I wanted to know what it was like for them. It changed my views of soldiers, and introduced the idea of them as people who needed our protection. I read more and more about it until I realized that it had sort of taken over my writing mind, and that I was going to write about it.

2) What are some of your favorite books and films about war and/or its lingering effects on soldiers and their families? How did they influence the genesis and writing of SPARTA?

There are a lot of good books on war and combat. Some of those that I found most useful and most powerful are: The Iliad, by Homer. All Quiet on the Western Front, by Erich Maria Remarque. The Iliad, or the Poem of Force, by Simone Weill. On Killing, by Dave Grossman. The Forever War, by Dexter Filkins. One Bullet Away, by Nathaniel Fick. War by Sebastian Junger.
I didn’t read much about coming home, but I wanted to know what it was like being there. Coming home was my own territory – it was being in country that I needed to know about. I watched some war movies, for the adrenaline and excitement, but I wanted words more than images.

3) Conrad’s constant vigilance, his feeling that “at any minute something might detonate,” his getting overwhelmed by sensory stimuli, reminded me so much of my autistic son, Benj. And just after reading SPARTA, I read Temple Grandin’s latest book and was struck by this remark: “Since I started taking antidepressants, in the early 1980s, the anxiety has been under control, probably because the pounding sympathetic nervous system reaction is blocked. But the vigilance is still present, percolating under the surface. My fear system is always on the alert for danger.” What are some of the most promising treatments for this heightened sense of danger, this restlessness and inability to tolerate noise, quick movements, etc?

I’ve heard about a lot of different treatments for hyper-vigilance, and for the whole mosaic of symptoms that PTSD can produce. They include writing workshops, yoga, organic farming, talk therapy, and of course a variety of medications. My own favorite treatment is the service dog. One vet told me his story, which included something that had happened, on a particular day in Iraq, which he said he would never describe to anyone. When he came home he had panic attacks, migraines, insomnia and an inability to concentrate. He couldn’t hold a job, and took 12 different medications. Then he was given a service dog, Paddy. He told me that whenever he has a panic attack, Paddy knows it, and “he takes me to a safe place.” I asked where that safe place was. “Usually it’s the truck,” he said. At night, he had been unable to sleep, even with pills, because of his fear of the nightmares that awaited him. Now, he said, “I don’t mind admitting that Paddy sleeps in bed with me. If I start having a nightmare, Paddy knows it, and he licks my face and wakes me up and I’m safe. Now I’m not afraid of going to sleep.” He is down to three medications, and has a job. So I’d like it if all vets with PTSD were given service dogs, but unfortunately they’re expensive, and there aren’t many of them.

4) I can testify from personal experience to the recent uptick in liberal arts majors joining the military (I’ve had several especially promising students from both Yale and Vassar choose this path in recent years). Why do you think this surge in interest in military service among humanities majors is happening now? What kinds of conflicts and issues does it raise for the young men/women and their families of origin, their peers, and their universities/colleges?

I was really interested by this shift. I think it’s the result of a lot of things, but a major factor in it is idealism. I talked recently to a military wife who told me she was shocked that I hadn’t realized that idealism was the reason most people joined the military after 9/11. It was a wish to serve a larger cause, a wish to make the world a better place, a wish to rise to a kind of challenge that young people weren’t finding in the civilian world. It makes for a wide gap in understanding for the older generation, who may have stigmatized the military, or seen it during the Vietnam era as a misguided method for solving problems, one that caused great damage and offered little benefit. For that generation, it’s hard to embrace the idea of the military – or of sending off your beloved son or daughter – into the military life. The issue is also interesting for colleges: I know of one military writer who gave a talk at a liberal arts college. He was challenged by a member of the faculty, who felt the military should not have a place on the campus. His response was that the military should become liberalized by recruiting more people with liberal educations. It’s an interesting debate.

5) What has the reaction to your book been like from both veterans and their parents/loved ones? What do you hope it can do in a public policy sense?

So far, the veterans who have read the book have been extremely positive and generous about it, and I have been honored by their responses. I didn’t write it in order to change policy, only to bear witness to a situation. If it changes something for the better, I’d be pleased. What troubles me is the idea of sending troops into combat in a situation like this – an undeclared war, fought for murky reasons, with troops who are unprepared and ill-equipped, guided by an ill-defined strategy. But it seems to me that most wars are fought for reasons that are ill-considered. Who thinks invading Moscow was a good idea? Or taking over all of Europe? Stopping the invasions seems to have been unavoidable, but the invasions themselves? They seem foolish and doomed, and the consequences, misery.

6) A Williams College classics major from a liberal democratic family deciding to serve in the Marines isn’t exactly a common experience, but to me it was a particular instance of a universal story: the disjunction between what parents expect and the reality of their complex, challenging child. How do you think parents canbest cope with and negotiate this disjunction and accommodate themselves to the child in front of them rather than the child they’d dreamed of, hoped for, or thought they had?

That’s such an interesting question, and, as you say, it’s one that all parents find themselves faced with at some point. The situations can be large and life-shifting, or small and quotidien, but I think they all do similar things to us as parents: they stop us in our tracks. They confuse us and challenge us. And with luck they will make us unclench our hands and give up our fixed ideas. They will make us stretch open our hearts; they will make us listen and understand, instead of talking and enforcing. As parents, we need to be in charge, we need to make rules, we need clear, strong ideas about raising children – this is normal. Children can’t survive without parents who take charge. But we also need to be able to give up our strategies when they’re not useful. The difficult part lies in recognising that moment, learning the moment in which to yield, to accept. Being reminded that, even though you’re the parent, and even though it’s your task to cherish and sustain this life, still, it’s not your life. It belongs to someone else.

7) Tell us about your writing routine and habits. For example: do you write every day? At what time of day do you like to write? Do you have a preferred space for writing?

I try to write every day. I write first thing in the morning, for as long as I can. When I’m writing fiction, I can usually only write for a few hours, or at least until I’m far into a novel. In the later stages I can write for much longer periods of time. If I’m writing non-fiction I can write all day. But fiction is sort of tricky, there comes a time when that energy has gone for the day. I write in different places, but I need a door that will shut, and the knowledge that no-one will open it.

8) You teach writing and literature at Hunter College. Can you share a teaching anecdote that you think is especially illustrative or helpful for young writers?

When I teach writing, I often teach a series of exercises that allow the writers to explore the characters they have created: the character doing different things, in different situations that allow the writers to understand the character better. The point is to find a deep kind of empathy and understanding for the character. As the semester goes on, we all come to know each others’ characters better and better. One of my favorite moments took place during a class at Wesleyan, when one of the students incorporated someone else’s character into a scene with her own. It was so wonderful and unexpected! Everyone laughed with delight when we realised what was happening. But what I particularly loved was the fact that what I’d hoped for was happening – the characters had taken on their own lives. They had become real. We all believed in them.

9) Who is your favorite literary character and why?

I am always drawn to Anna Karenina. Not because she was so wise or made great choices, but because she did things that are so understandable. I love the way Tolstoy feels sympathy for her – through showing us, with the comment about Karenin’s awful ears – what torture it would be to have to live with someone who was physically repellent to you. Showing us the ineradicable grief that would result from the loss of a child. Showing us the brilliance and fireworks that result from a passionate affair, how the world explodes around you, and how you are unable to stop all that light and starblaze, and unable to stop the darkness and the drifting ash afterward. He creates an entire world for her, fascinating, compelling and to me utterly compelling.

10) Who are some of your favorite authors and what are some of your favorite books?

Obviously, Leo Tolstoy and Anna Karenina. Also John Updike and the Rabbit books and The Maples Stories; Virginia Woolf, To the Lighthouse; Shirley Hazzard, Transit of Venus; J.M. Coetzee, Disgrace; Edith Wharton, The House of Mirth; all of Chekhov’s stories. Giuseppe Lampedusa, The Leopard. Harriet Beecher Stowe, Uncle Tom’s Cabin.

11) You are a gorgeous and astute observer of nature and animals. Can you share a little story of a recent encounter or experience in the natural world?

I am always watching the natural world. I arrived in Maine a few days ago, to our house that sits on the edge of the woods. Ferns grow thickly right up to the porch, and tall pines and fir trees tower over the roof. The house is unpainted shingle, and on the porch column by the back door there are faint scratches that lead up to the roof. The marks are like pictographs, mysteriously regular, like strange small writing in a language we don’t read – until you tilt your head sideways. Then you understand that the faint pale marks are set in rows of five: they’re raccoon claws, the five delicated clawed fingers set against the shingles all the way up to the roof, like Spiderman, no ledges, nothing to hold onto, but up go the marks, showing that silent determined climb up towards an imagined attic. (There is no attic there, but the raccoon on his nighttime ascent didn’t know that.) The raccoons visit the house every night, hoping that I have forgotten to bring in the birdfeeder. On the mornings after the nights when I have forgotten, I find the feeder hanging rakishly against the house, the top swung off, the cylinder empty, the window covered lavishly with muddy toe-prints.

On my first night here, my husband and I were sitting in the living room, beside tall french doors opening onto the porch. “Someone’s out there,” my husband said, “I just saw him go by.” I went to the dark kitchen and watched him approach: a young raccoon, walking swiftly toward the bench beneath the feeder. He was brisk and confident, lithe and long-legged, with a bushy striped tail that just brushed the deck. With his elegant face, his long pointed nose, luxuriant whiskers and black velvet mask, he looked like an aristocratic burglar. He walked past the door and vanished into the darkness. I hadn’t even put the feeder up yet, but the sight of him reminded me to begin our summer-long conversation.

12) What’s your favorite poem?

Right now: The Summer Day, by Mary Oliver.

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Find out more about Roxana Robinson and her books here:

http://www.roxanarobinson.com/

“The Marvelous Strengths of the Autistic Mind”: Priscilla Gilman & Caroline Lawrence in Conversation

Merged Author Photos

Last year, I wrote a rhapsodic review in the New York Times Book Review of the first novel in a new children’s book series by Caroline Lawrence, author of the best-selling Roman Mysteries series. Here’s my NYT review of THE TALE OF THE DEADLY DESPERADOS:

http://www.nytimes.com/2012/02/12/books/review/the-case-of-the-deadly-desperados-by-caroline-lawrence.html?_r=0

The second book in the Western Mysteries series, P. K. PINKERTON AND THE PETRIFIED MAN, has just been published in the US, and my boys and I love it as much as the first one. Caroline and I recently connected via Twitter, she read my memoir, The Anti-Romantic Child, and we decided to do a mutual interview about autism and our respective books.

PRISCILLA INTERVIEWS CAROLINE

PG: What inspired you to create a children’s book series with an autistic protagonist?

CL: Even as a child I felt slightly apart from other children. It helped me to think of myself as an “observer”, watching people’s behavior. For this reason I was – and am – passionate about stories, because they help me figure out the world. When I started teaching art and Latin at my son’s primary school, I became obsessed with the mechanics of learning, especially memory techniques involving the left vs. right brain. Later, I tutored a brilliant but non-verbal autistic boy for a few months. I became captivated by the idea that he might have an incredibly rich interior world.

I love detective stories. I also love misfits (like me) who are skilled in one way but handicapped in another. So I thought I would give my young Western detective aspects of Asperger’s.

PG: What do you hope the series can accomplish as far as educating people about autism?

CL: I don’t really expect to educate people about autism as much as give hope to kids who think of themselves as “misfits”. They didn’t have the words “autism” or “Asperger’s” in the 1860s, when my books are set, and this is good, because I don’t necessarily want to saddle Pinky with a label.

PG: What kind of research did you do in order to develop the character of Pinky? Did you read books, speak to autistic people, therapists, etc?

CL: I’ve been reading books by Oliver Sacks and Temple Grandin for over two decades, so apart from a few new books like Born on a Blue Day and films like Adam (2009) and The Horse Boy (2009), I didn’t do much new research. Essentially, I just took my own foibles and “turned up the volume to eleven”. Then I added a few savant characteristics like skill in mathematics and a photographic memory. My hero also suffers from Post Traumatic Stress, prosopagnosia and gender confusion. So the mix is quite complicated. Essentially, P.K. “Pinky” Pinkerton is a misfit who learns he has a very necessary place in the world. But he has to figure out where it is, and with whom!

PG: What were some of the literary and cinematic influences on the Western Mysteries?

After Nancy Drew, Sherlock Holmes and the historical novels of Mary Renault, my main literary influence on these books is Charles Portis’ masterpiece True Grit. I also adore Western movies like The Good, the Bad and the Ugly (1966), Eagle’s Wing (1979), The Tin Star (1957) and Little Big Man (1970). Another motive for me writing in this period was to explore the sublime tragedy that was the American Civil War.

PG: What do you make of my 10 year old action-loving son James’ review of your books? (He spontaneously dictated to me tonight.)

The Western Mysteries featuring P.K. Pinkerton is a funny, exciting, and enjoyable series. PK Pinkerton is a boy detective who has what we would today call autism. Because of that, he has strengths in some categories and weaknesses in others. Some of his weaknesses are: he’s not very good at reading people, he’s not very good at detecting whether people are lying, and he’s not good at lying himself. But his strengths are: he has a very watchful eye, he pays attention to the details, he has an excellent memory, and he is able to determine from a large list of suspects which one is the actual criminal.

I highly recommend the series because the books teach you about reading people, detective skills, autism, and the Wild West. Finally, the books are valuable to me because my brother, Benji, is autistic like Pinky, and like Pinky he doesn’t like surprises or being touched but he has a great memory and a good eye for detail. I understand my brother better and appreciate his strengths more after reading these books.

James P., Age 10

CL: I love it! I am especially thrilled that my books help James understand his brother Benj a little better.

CAROLINE INTERVIEWS PRISCILLA

CL: How do you hope your book The Anti-Romantic Child helps readers understand and care for children with Autism Spectrum Disorder?

PG: I hope that my book will help readers appreciate both the marvelous strengths of the autistic mind and the profound individuality of children on the autism spectrum. I hope that my portrait of ardent, imaginative, tender little Benj explodes some of the more damaging stereotypes about autistic children: that they are not interested in relationships, that they are incapable of connection and love, that they lack empathy, that they are not creative. Finally, I hope that the book encourages its readers to approach children with respect for their uniqueness and with a sense of wonder.

CL: I was so moved to read that you and Benj sing duets almost every evening. It’s a beautiful example of how people with autism can connect and collaborate with others, albeit not always in the most obvious ways. Has this habit changed as he’s grown older?

PG: Sadly now that Benj is in 8th grade and has loads of homework and music practicing to do, we don’t have as much time for our musical excursions on school nights. We do try to sing together every night during the holiday season (Benj has a special affinity for Christmas carols), and on weekend afternoons and evenings. And now that I’m married to a music teacher/guitarist/songwriter, we will often have family sing-alongs!

CL: You tell how your first born son, Benj, took you out of the dry world of academia and into the equally demanding but much more satisfying “real world” of parenthood. Do you miss any aspect of academia?

PG: I miss classroom teaching very much indeed. I always considered myself primarily a teacher, and a scholar or writer second. After leaving academia in 2006, working as a literary agent for five years, and then publishing my own book, I now teach in a more free-lance way, offering seminars on poetry to high school students and non-profits throughout the state of New York via a grant from the New York Council for the Humanities, teaching a class on Growing and Aging to Mt Sinai medical students, working 1:1 with adult learners interested in reading books they never got around to as students, and even teaching poems and novels to groups for parties and gatherings. But I would love to have a regular classroom teaching gig too.

CL: Your book is permeated with the poetry and presence of William Wordsworth. How did your view of this poet change after the birth of your sons?

PG: I think a bit from THE ANTI-ROMANTIC CHILD best summarizes this:

Measuring the space or distance between Wordsworth’s radiant visions of childhood and the reality of my experience with Benjamin initially heightened my “sense of wrong” and my feelings of betrayal and disillusionment . . .But while on the one hand, I felt the loss of what I’d dreamed and hoped for more strongly because of Wordsworth, on the other, I found in Wordsworth a language with which to express both the depth and breadth of my loss and the possibility of its recompense. Wordsworth gave me the thought and the words for the lump in my throat . . . So while my heartbreak may have been greater because of my attachment to the “splendor in the grass,” the romantic dream, my consolation was also stronger because I had Wordsworth to help me recognize and celebrate “what remained behind.”

CL: We often think of Wordsworth as a poet of the “romantic child” (blessed infants and carefree children full of imaginative play) but you show that he occasionally depicts a child with strange obsessions who sees the world in a unique way: an “anti-romantic child”! Can you give us an example from his poetry?

PG: In poem after poem, Wordsworth presents children like Benj: odd children, with strange obsessions, who frustrate adult expectations, who see the world in a unique and uncanny way, who exist in many ways at odds with their culture, who are unusual, vulnerable, and solitary, and who long to escape from the confines of conventional society. I’d point especially to “We Are Seven,” “The Idiot Boy,” the Lucy poems, and passages from Wordsworth’s long autobiographical poem, The Prelude. Wordsworth’s poetry argues passionately for the worth and value of society’s forgotten, excluded, or less powerful ones, eccentrics and outcasts, beggars, radicals, old people, butterflies, and children.

FOR MORE ON PRISCILLA GILMAN:
www.facebook.com/priscillagilmanauthor
www.priscillagilman.com
www.twitter.com/priscillagilman

FOR MORE ON CAROLINE LAWRENCE:

www.carolinelawrence.com
www.twitter.com/carolinelawrenc

PetrifiedMan_FINAL_WIP

I have two copies of Caroline’s latest, PK PINKERTON AND THE PETRIFIED MAN, to give away! Comment on this interview to be entered into a random drawing; winners will be selected and announced on Friday June 7th!

“I Grow”: Happy Birthday to May Sarton

I recently taught this poem to medical students at Mt Sinai as part of a mini-class on the literature of aging. It seems especially appropriate to share it on the day of the late May Sarton’s birthday.

On a Winter Night
May Sarton

On a winter night
I sat alone
In a cold room,
Feeling old, strange
At the year’s change,
In fire light.

Last fire of youth,
All brilliance burning,
And my year turning –
One dazzling rush,
Like a wild wish
Or a blaze of truth.

First fire of age,
And the soft snow
Of ash below –
For the clean wood
The end was good;
For me, an image

For then I saw
That the fires, not I
Burn down and die;
That fire of gold
Turns old, turns cold.
Not I. I grow.

Nor old, nor young,
The burning sprite
Of my delight,
A salamander
In fires of wonder,
Gives tongue, gives tongue!

May we all cultivate this optimistic attitude towards our own aging process!

“Let The River Rock You Like A Cradle”: RIP to the great Richie Havens

The Big Chill Festival 2007 - Day One

So sad to hear of Richie Haven’s passing today. My ex-husband introduced me to Richie during the first weeks of our courtship; he made me a cassette of Richie’s album MIXED BAG, and “Follow” was the song of our love.

Richie, thank you for your textured, soulful, uplifting, mysterious voice, and in the words of that song,

“Let the river rock you like a cradle . . .
Come and touch the things you cannot feel.
And close your fingertips and fly where I can’t hold you
Let the sun-rain fall and let the dewy clouds enfold you.”

“Trembling, Always on the Edge of Loss”: A Conversation with Emily Rapp

Emily Rapp (c) Anne Staveley

A few months ago, I received a galley in the mail with a note from a lovely editor I’d had lunch with a few years ago. Andrea Walker said that she loved this book dearly and thought I would too. That galley was Emily Rapp’s memoir The Still Point of The Turning World. Here’s how the publisher described Emily’s book:

Like all mothers, Emily Rapp had ambitious plans for her first and only child, Ronan. He would be smart, loyal, physically fearless, and level-headed, but fun. He would be good at crossword puzzles like his father. He would be an avid skier like his mother. Rapp would speak to him in foreign languages and give him the best education.

But all of these plans changed when Ronan was diagnosed at nine months old with Tay-Sachs disease, a rare and always-fatal degenerative disorder. Ronan was not expected to live beyond the age of three; he would be permanently stalled at a developmental level of six months. Rapp and her husband were forced to re-evaluate everything they thought they knew about parenting. They would have to learn to live with their child in the moment; to find happiness in the midst of sorrow; to parent without a future.

The Still Point of the Turning World is the story of a mother’s journey through grief and beyond it. Rapp’s response to her son’s diagnosis was a belief that she needed to “make my world big”—to make sense of her family’s situation through art, literature, philosophy, theology and myth.

Andrea’s impulse to send the book to me was a good one. Here’s an excerpt from the email I sent Emily, whom I’ve never met, minutes after finishing her book:

I just finished your book and am feeling totally electrified. WOWEE. You- and it- are simply extraordinary- I am humming and radiating with, shaken and transported by the fierce energy and lambent brilliance of you and your writing. And what a kindred spirit you are . . . Please know that you have rocked my world, blown my mind, broken open my heart, and performed every other cliche of wowing you can think of on this receptive and grateful reader.

with the utmost admiration and in solidarity,
Priscilla

The Still Point of the Turning World now sits on my “favorite books of all time” shelf and I channeled my feelings about and reactions to it into a series of questions I emailed Emily. Below you’ll find our conversation about parenting, literature, disability, grief, illness, marriage and divorce, religion, quotations, gratitude, resilience, and joy.

1) One of the most striking arguments of your book is your claim that joy resides within sorrow- that there can be a special intensity and numinous quality to the experiences of loss and grief:

“Tucked inside the moments of this great sadness — this feeling of being punctured, scrambling and stricken — were also moments of the brightest, most swollen and logic-shattering happiness I’ve ever experienced

This sentence perfectly describes my experience with my terminally ill mother-in-law and my terminally ill father, both of whom died too soon of cancer. In fact, if I ever write a book about losing those beloved parental figures, I would quote this line from you! What are some of the brightest, most expansive and luminous moments you experienced even as you were enveloped in the great sadness of Ronan’s physical decline and impending death?

I loved being outside with Ronan — he was a little guy, so I could walk with him in the front pack on trails around Santa Fe until he was nearly two years old. I loved watching the light in his hair, in his eyes, and sometimes, when we were in the stroller or walking, he would sigh and coo, and you could tell he was enjoying the wind on his face, or a smell dusted up in the wind. I loved that. I liked sleeping with him, too — having him close, holding his hand while we watched Law and Order at night (true story!), and all the snuggling. He was a sweet, adorable baby with a wonderful presence. Everyone who met him felt it. Sometimes I would see toddlers having a tantrum and I’d think, “well, no terrible twos for Ronan!” in a kind of darkly humorous way. I also have great memories of traveling with him in the back of the car while I drove to my parents’ house in Wyoming. When I stopped to get gas or food, I’d take him out and carry him in the front pack, and for some reason, whenever we walked into a gas station, he giggled. Thought it was the funniest thing in the world. Later, as he became more withdrawn, it was just the quiet moments of holding his little body.

2) At one point, you write of your realizations about the relationship between love and loss, happiness and risk: “I realized you could not have one without the other, that this great capacity to love and be happy can only be experienced with this great risk of having happiness taken from you — to tremble, always on the edge of loss.” How can one hold onto the positives of the kind of awareness your book seeks to cultivate in us- gratitude, living in the moment, knowing what matters- without being overcome by the negatives- anxiety, fear, existential despair? How can we hold onto a sense of possibility and optimism when confronted with the reality of our extreme vulnerability? How, to use your turn of phrase, can one tremble in the sense of vibrate or quiver or shake with intense awareness and appreciation and love rather than shudder or quake with terror on the edge or in the face of loss?

I don’t have an easy answer for this, but I do think an acknowledgment of the precariousness of life can be liberating. The flip side, of course, is terror, but I think it makes you notice the world around you in a more specific and deliberate way. It makes you think, wonder, risk. For me, it made me change almost every aspect of my life, which was difficult but necessary. And I don’t think you can ALWAYS be so “hey, being at risk is liberating.” I think, in the management of any duality, you are going to have freak out moments. I think that’s the point, in fact, to understand that the cultivation of gratitude and optimism and peace is going to be punctured occasionally with panic, terror, etc. That IS the human condition. What’s different about holding the duality in this way is that eliminates the myth that we can control much about our lives. And that’s something worth revisiting on an hourly basis, or every minute, if you can. It changes your outlook, or it changed mine, and it made me much more fearless in almost every respect — artistically, personally, psychologically.


3) The first sentence of your book- “This is a love story, which, like all great love stories, is ultimately a story of loss”- struck a deep chord in me. My literary memoir of motherhood, The Anti-Romantic Child, told the story of my experience parenting a child with autism via the poetry of William Wordsworth, who is both the great poet of childhood and the great poet of loss: he is the poet who declares that “nothing can bring back the hour / Of splendour in the grass, of glory in the flower.” Yours is a story of love and of great loss, but it is also a Wordsworthian story of finding “strength in what remains behind.” Where did you find strength in the face of loss? And what remains behind?

I loved Ronan, and I loved being his mother. I know that you can relate to this as a mother of a special needs child — if people knew the reality, they wouldn’t say condescending things about our children being “special” or “gifts from God,” they would just say that they are PEOPLE. That helped me. And loving Ronan, and the love of my friends and later, near the end of his life, the love of my new partner, gave me strength, even though I often felt helpless and of course, horrible sometimes at the very primary task of protecting Ronan from harm. I made a conscious (and to some, I think, a somewhat controversial decision), to build a life that I could climb into when Ronan was gone. I think many mothers struggle with this, as it’s an issue of identity — I’m a mother, but I’m also a person with other pursuits. I didn’t have the option of quitting work to throw myself on any funeral pyres. I had to make a living, keep my health insurance, and also have a hook in a world post-Ronan so that when I died I would want to go on living. So what remains is a sad and beautiful life, a rich, full life that is full of both grace and terror — in short, the life I was living before WITH Ronan, only now his suffering has ended. Life with Ronan was never a tragic horror full of every-moment despair. It was like any life — with ups and downs, confusions and triumphs, terror and glory.

4) Another point of connection between our books is the way we use, refer to, rely on literature to make sense of the parenting and life challenges we were faced with. Your book is not only an ardent celebration of Ronan’s beauty, truth, value, it is also a tribute to literature and a testament to its explanatory, consolatory power. The books and poems and authors you read and refer to are eclectic: Marilynne Robinson’s Gilead, Mary Shelley’s Frankenstein, Myths from Mesopotamia, the poetry of Louise Gluck, Sylvia Plath, Emily Dickinson, and your good friend Phil Pardi. What are some of your favorite books and poems and who are some of your favorite authors that you didn’t mention in The Still Point of the Turning World?

Yes, yay literature! I love that you do that in your book as well. I love Jane Kenyon’s poetry, and found that incredibly comforting, and also the poem “Wild Iris” by Louise Gluck with that opening line “at the end of my suffering there was a door.” Karen Armstrong’s work on myth figures prominently in the book as well, and there were individual poems (that were epigraphs – I LOVE epigraphs) that didn’t make it into the final book — poems by Denise Duhamel, whose poetry books were at an artist’s residency I attended in Spain. I read her entire canon in one night. Margaret Atwood, Frances Sherwood, even Tolstoy, Michael Ondaatje — all of my old favorites came back to haunt me in the best ways when I was working on this book.

5) Like me, you are a quotation nut, and I especially loved this aspect of your book: the epigraphs (I adore epigraphs!), the excerpts and lines braided into your own prose, the poetry that often pops into your head as you’re going through experiences with Ronan (at one point you say it was “as if the ghost of Emily Dickinson were speaking directly into my ear”). The ghosts of dead poets speak directly into my ear all the time! 🙂 If you could use one literary passage or poetic excerpt to summarize your experience as Ronan’s mother, what would it be?

Ha! I am SUCH a quotation nut. My students tease me by recommending that I write a book called “Emily’s Epigraphs.” I would say this line from Pablo Neruda: “I don’t have enough time to celebrate your hair.” Time was the enemy, in Ronan’s case, as it is for all of us, but the sense of that was escalated in my experience with him.


6) Speaking of quotations, the title of your book is a phrase from T.S. Eliot’s Four Quartets. How did you settle on this as the title of your memoir? Did you consider other titles? What did you hope to evoke with this phrase? I’m working on a project about stillness, so I’m especially interested in your answer!

My original title was Dear Dr. Frankenstein, because I liked the implication of the grotesque and the beautiful, both of which are held in beautiful tension in Shelley’s book. In the end, though, it was a concern that many people confuse the Doctor (the actual Frankenstein) with the monster, who is never named. All those bad black and white movies have confused things! In any case, I talked with my editor and my agent and the publisher, and we agreed that a sense of stillness was the one thing that permeated this book from start to finish. This is why conversations around theme and purpose are important for authors to have with other people, because it’s difficult to have that perspective on your own work. I’m very happy with the title.

7) In the book’s opening pages, you emphasize the utter grimness of Ronan’s prognosis: there is “no treatment and no cure”‘ for Tay-Sachs and there is no possibility of progress for Ronan. Although my own son has made considerable progress since being diagnosed with a type of high-functioning autism called hyperlexia at age 3, in my talks and visits to schools, I encounter many parents whose children will never speak, certainly never go to college, live independently, marry, or have children. What would you say to parents whose children will never “make progress” or family members of people with a terminal diagnosis?

I would say, “that totally sucks, how do you feel or what is it like for you, or what I can do to help? or I’ll be thinking about you,” or just, especially in the case of a child, “tell me what he or she is like.” People are people. We don’t have to rocket into some weird sense of other people’s notions of potential. We don’t have to be “slotted” anywhere or categorized in any specific way to matter in this world. That’s why I think stories are important – – telling stories makes the actors and players MATTER, and all of us matter, no matter how long we live, and no matter what we look like or what we DO with ourselves. Period. In both of these cases, the time for bromides and magical thinking is officially OVER, at least it was for me. I can’t claim to speak for everyone facing these situations, but I know that in talking with others that people feel the way that I do. Honesty, please, and a recognition that there is NO normative experience whatsoever.

8) Even though the consensus on Tay-Sachs is that “there was nothing to do” and even though you had no conventional goals to set for your child or your parenting, no typical milestones to shoot for , you did have high aspirations for your parenting and you did succeed in doing so much! You made Ronan’s life playful, peaceful, characterized by “dignity and minimal discomfort,” and your efforts reminded me so much of what my extraordinary stepmother did for my father when four years after his diagnosis of terminal lung cancer, he began to “gradually regress into a vegetative state.” For the last two years of his life he did not speak, was fed through tubes, and breathed with the help of a tracheotomy and tubes suctioning his lungs. “Determined to make each remaining moment of his life one touched by love,” my stepmother did for him what you did for Ronan- she cared for him at home with the help of nurses (Japanese insurance is excellent), she covered him with colorful blankets knitted by his mother as gifts to her grandchildren, surrounded him with photos of his children and grandchildren, his son’s paintings, plants, flowers, and stuffed animals, she read to him and sang to him and talked to him. Can you tell those readers who may not have followed you on your blog what you did for Ronan to make him comfortable, to bring him pleasure and fun and elation and transport? (I’m thinking of the stuffed animals, the harp, the therapeutic work, the friends cuddling him, the walks etc). What can your experience show others about how to make a seemingly intolerable situation not only tolerable but positively beautiful?

What a beautiful story of your father and stepmother. Ronan had a magic shelf, a place where visitors would place objects that mattered to him. He had a sweet little room and a comfortable bed. He had a million soft blankets and soft toys. He had a gigantic stuffed sheep that he liked to sleep and lie in. He went outside a LOT and he was held by many, many people. He went to parties. He heard music. He had a physical therapist and an acupuncturist. He was held by so many people. People talked to him, said his name. He watched the recent Obama election stretched out and snoring across the laps of my two friends Amy and Nouf. And he LOVED to eat — cheesecake was his favorite.

9) As the parent of two children with special needs (my younger son has dyslexia and dysgraphia, my older son has autism), I am especially interested in the points you make about normalcy and difference. How did your experience of your own disability affect the way you cared for Ronan? How did you like others to approach you and him?

As you know, there is no normative experience, no normative embodiment, although we are pressured to think that there is. We are, all of us, going to be disabled at some point in our lives, and we are all going to die. I think some of the preoccupations I had about my own body (hating it, wishing it to be different, etc.) disappeared gradually (and I hope forever, although they occasionally rear up) in caring for Ronan. He was beautiful and perfect IN HIS WAY. This was a huge lesson for me, although one I would have preferred to learn in just about any other way, obviously. I liked people to walk up to him, say his name, say hello, and take his hand. To treat him like a person, not a sick baby. My biggest peeve about my own disability is when people say “I’m sorry,” as if my artificial leg completely defines my life in a negative way. Disability truly lacks a frame in this country. Now, in a strange twist of fate, I find myself being mistaken for a war veteran, since now women are going to war and losing their limbs. Strange. I wanted Ronan out in the world, even if he occasionally made people uncomfortable, because my parents hauled me everywhere with my wooden leg as a kid. And I’m grateful for that.

10) I often tell people that an upside to being a special needs parent is the wealth of extraordinary people we encounter in our journeys with our vulnerable children, who need so much help, support, and special care in order to do things most children do effortlessly, whether it be feeding themselves, or being able to breathe at all. Can you share some anecdotes about the therapists, babysitters, doctors, and other caregivers who helped you and Ronan navigate the terrain of his illness?

We had a babysitter who was training as a nurse, Ashleigh, who was also a jazz singer. She sang to him. Elana, our occupational therapist, would sit with Ronan and massage him and sing to him and make him comfortable. Dawn and Janet gave him acupuncture treatments at home and in the office. Our hospice nurses, Liz and Cynthia, were amazing, from first to last, they were there with in-the-moment advice about how to practice comfort care and make Ronan’s quality of life as positive as possible.

11) What do you think health care providers can learn from your and Ronan’s experience? How can we as individuals and as a country and culture make what the writer Katrina Kenison has called “the bustling, overpopulated country of illness [and] affliction” a less harried and sterile, more humane and compassionate place?

I think we need to have real discussion about quality of life. I think the medical community has too long been trained to think “prolong and save,” without a real understanding of what that might mean for the person being “saved.” I think hospice needs more airtime in the health debate — we talk constantly about how to be healthy, but we don’t talk about how to die. It’s such a taboo in the culture, and I truly believe that needs to change. People — and children — are dying all over this country, they need care and compassion, and they are very rarely a part of the health care debate unless it’s pitched as a “tragic” story. It’s the story of life; we need to face it and figure out how to help people spend their last moments in dignity and peace, as much as that’s possible.

12) As the daughter of a writer who wrote an acclaimed memoir about his conversion to Catholicism from Judaism and subsequent falling away from the Catholic church and as a writer who despite being not conventionally religious draws inspiration from religious authors like Henri Nouwen, Abraham Joshua Heschel, and Frederick Buechner (and like you a passionate admirer of Marilynne Robinson’s Gilead), I was fascinated by the role that religion and spirituality have played in your life and in your writing. What was it like growing up as the daughter of a pastor? Why did you go to divinity school? How and why did you begin to doubt some of the conventional pieties? How did your divinity school training help you through this experience with Ronan? How has literature provided a kind of secular and idiosyncratic scripture that replaced the more traditional scriptures you were raised on and studied?

I also love Heschel, and sometime I’ll tell you about my flirtation with conversion to Judaism. I almost did it! But then did not (again, long story). Growing up in a religious household was fun, in fact. The church I grew up in was a community of immigrants, people of all different ages and vocational pursuits and political affiliations. What united us was story — the great Christian story, of course (which I don’t believe, but was taught nonetheless, the promise of salvation through faith); also, the stories in the Bible are the precursors to modern stories — they’re about love and loss, about sacrifice and unfairness, about living and dying. I loved to read, and I loved to read the Bible (yep), because the stories seemed relevant to human experience in a direct and immediate way. Although I’m not religious, you can learn a lot about plot and dialogue from a New Testament story. I went to divinity school because I had been a religion major, and I did and still do relish the intellectual study of these religious stories. My divinity school training wiped away any faith or piety, but it gave me an appreciation for grappling with questions involving the meaning of life, the pursuit of happiness, all of that, and so those old books became a great resource for me during Ronan’s illness. I still like to read philosophy of religion and other theological works, so I suppose literature and theology have an equal standing for me in terms of inspiration and as a source of intellectual interest.

13) Do you want to have more children one day?

I do!

14) Your marriage fell apart in the wake of the discovery of Ronan’s fatal condition as mine did in the aftermath of our grappling with our son’s autism. I so identified with this moment in your book: “With Rick . . I felt as if I were shouting through a tidal wave of water and fire to connect with him, or trying to have a conversation in the middle of a tornado. You have to stick together, our friends and family told us. How, when we could hardly hear each other?” Our families and friends told us exactly the same thing, and yet eventually they came to see that we could be better parents and people apart. Can you speak to the special challenges facing parents of children with special needs or chronic illnesses and also to the benefits of separation and divorce if couples are not able to hear each other anymore?

I think it’s an issue of grief, and its many permutations and manifestations. When you’re grieving — really grieving intensely — it feels like that is the ONLY way to grieve, and it’s hard to imagine anyone choosing a different path. I think it goes one of two ways: you either become closely bonded by the struggle and the experience, or you grow apart. And I don’t think there’s any way to predict how that will go, and I don’t think it’s an issue of two people not “trying” hard enough or being weak or bad people. Grief is annihilating, and we do what we have to do to survive it; everyone is going to manifest that pain in different ways. Rick was an amazing father, and I think we did a great job as co-parents of Ronan. But I think this idea that you MUST stick together just adds another level of pain and guilt to an already difficult situation. Issues and problems are never so clear cut, and neither are the solutions.

15) One of my favorite lines from your book is: “Ronan taught me that children do not exist to honor their parents . . . their parents exist to honor them.” So then the question becomes: how can we best honor our children? How can we shift our focus and our efforts from changing, fixing, and improving our children to accepting, celebrating, and honoring them?

Children are people, not projects. I believe this. If I ever have the opportunity to be a mother again, I’m going to let my kid be whatever he or she wants to be, even if I don’t agree, or it seems strange to me. I think the challenge for parents should be this and only this: how can I create an environment where the unique nature of my child is honored and supported and nurtured. This means that it doesn’t matter what other people are doing, other kids, but only what feels good and healthy to your child. No one-upmanship. No pressure to be better or smarter than this or that other kid. No rankings, no charts.

16) What one piece of advice would you give every new parent? And what one book or poem would you recommend that every parent read?

I would say enjoy every moment because you never know what will happen in the future. I would hand them a copy of A Grief Observed, by CS Lewis, although I doubt new parents would want to read it! And also Pablo Neruda’s beautiful love sonnets, because it’s such a pure and specific analysis of love, applicable to many different kinds of relationships.

17) What is the first word that springs to your mind to describe your son?

Beautiful. Soft.

18) How would you like Ronan to be remembered?

As a sweet, darling, beautiful, perfectly made boy who was loved from the moment of his birth until his final moment, and is still loved and remembered.

TheStillPoin_300dpi

Emily Rapp was born in Nebraska and grew up in Wyoming and Colorado. Born with a congenital defect, her left foot was amputated at age four, and she has worn a prosthetic limb ever since. A former Fulbright scholarship recipient, she was educated at Harvard University, Saint Olaf College, Trinity College-Dublin, and the University of Texas at Austin, where she was a James A. Michener Fellow. Emily has taught writing in the MFA program at Antioch University, Los Angeles, The Taos Writers’ Workshop, University of California – Palm Desert, and the Gotham Writers’ Workshops. She is currently professor of Creative Writing and Literature at the Santa Fe University of Art & Design in Santa Fe, New Mexico. She is the author of two memoirs, Poster Child (Bloomsbury, 2006), and The Still Point of the Turning World (Penguin Press, 2013).

“Joy and Woe”: National Poetry Month, Day 3

Man was made for joy and woe;
And when this we rightly know
Through the world we safely go.
Joy and woe are woven fine,
A clothing for the soul divine.
Under every grief and pine
Runs a joy with silken twine.

William Blake, from Auguries of Innocence

220px-William_Blake_by_Thomas_Phillips

“The Miracle in Everything Speaks”: Happy National Poetry Month, Day 2!

You Ask About Poetry

You ask from an island so far away
it remains unspoiled. To walk quietly
till the miracle in everything speaks
is poetry. You want to look for poetry
in your soul and in everyday life, as you
search for stones on the beach. Four
thousand miles away, as the sun ices
the snow, I smile. For in this moment,
you are the poem. After years of looking,
I can only say that searching for
small things worn by the deep is
the art of poetry, But listening
to what they say is the poem.

Mark Nepo

Happy National Poetry Month!

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