Food for the Writer’s Soul

Writers are fed with their own life experiences and with the well-written books of other writers. Books are like appetizers, while experiences are the main course. This past month, friends and family recommended books of real substance, all of which I read ravenously. At night time, I’m rather like a doll, whose eyes close when placed in a reclining position. Once lying in bed, I’m seldom able to read beyond one page. Not so with these recent reads:

Grace and Grit: Spirituality and Healing in the Life and Death of Treya Killam Wilber by KenWilbur – compelling story about a couple’s struggle with cancer and their journey to spiritual healing,five-years through illness, treatment, and death.

Breaking Night: A Memoir of Forgiveness, Survival, and My Journey from Homeless to Harvard by Elizabeth Murray – stunning memoir of a young woman, growing upwith parents who were drug addicts. She finds herself living on the streets of New York at the age of 15 after her mother died of AIDS. This is a wonderful book for teens about resilience.

 The Tea Girl of Hummingbird Lane: a Novel by Lisa See – powerful story about the destinies of a mother and daughter separated at birth. The baby is left near an orphanage, wrapped in a blanket with a tea cake in its folds. When Li-yan comes of age, she leaves her remote mountain tea-farming village for an education, a business and city life, while her daughter, Haley, is raised in California by loving adoptive parents.

Elephant Company: The Inspiring Story of an Unlikely Hero and the Animals Who Helped Him Save Lives in World War II by Vicki Croken – remarkable true story of James Howard “Billy” Williams, a British adventurer, who entered into the teak trade, navigated the jungles of Burma in the company of elephants, became deeply attached to these highly intelligent animals and led them to help evacuees.

Bioregulatory Medicine: An Innovative Holistic Approach to Self-Healing by Thom, DDS, ND, Maffitt Odell, OMD, ND, L.Ac., Drobot, NMD, and Pleus, MD, DDS, OMFS and Higgins Kelley, MNT – comprehensive and evidence-based book about a holistic medical model that has been refined for over five thousand years by some of the brightest minds in medicine, science and philosophy.

What strikes me about all these books is the common themes of human experience, illness, resilience and spirituality – food for the soul. I picked up Bioregulatory Medicine this past Friday to prepare for a magazine interview and tour at Providence’s new BIOMED Center. The book was published two months ago, and I wish it had been available two years ago, when our son’s neurological symptoms were surfacing. I’m eager to learn more about the center’s leading-edge non-invasive diagnostics and their  natural and personalized approach to treating diseases like cancer. I may add a biomed chapter to my book and suggest this gentler approach for treating pediatric cancers.

Practiced in Europe, bioregulatory medicine is beginning to challenge the conventional allopathic approach to medicine currently prevailing in the U.S. Here’s a quote describing the difference between the two approaches:

“Western allopathic medicine relies on drugs that result in an opposite effect of the symptoms. From Greek roots, allopathic literally means ‘opposite of the disease.’ The model is based on using drugs that work against out biology to suppress disease symptoms. Here lies the distinction: Allopathic medicine treatments suppress biology while bioregulatory medicine supports it… the body’s natural ability to heal is profound and should be facilitated, not suppressed.”

In bioregulatory medicine, organic and whole foods support the body’s natural ability to heal, and the writer’s world, inspirational books support the mind’s ability to write.

One Voice in a Sea of Voices

     Neil’s young voice was one of many to speak out about DIPG Awareness and Childhood Cancer in general. This week a few more voices are striving to be heard in Washington, D.C. Three days ago, the DIPG advocacy group issued a press release. The header expresses a sense of urgency – A Moonshot for Kids: DIPG Awareness Resolution H.Res.69 Runs out of Time as Childhood Cancer Advocates Return to Capitol Hill. It continues:

     “Since the DIPG Awareness Resolution was first introduced in January of 2016, roughly 1200 more children have died of the deadly brain cancer while the bill has had no attention from House Leadership despite growing support nationwide. The DIPG Advocacy Group returns to fight for this bill which boldly confronts the lack of human values in the medical research industry.”

It concludes with the strong voice of a mother, Janet Demeter, who lost her child, Jack, age 4, to DIPG:

      “…it [DIPG] exemplifies in a powerful way the marginalization of childhood cancers and lack of funding for research. Every child’s life deserves hope, but there is none for these children with DIPG. The first iteration of this bill we used to call, ‘Moonshot for Kids.’ Most experts familiar with the disease agree that, if they could find the cure to this one, they might just find the cure to brain cancer. I know they can if science put a man on the moon 50 years ago.”

     To put this into perspective, according to the American Society of Clinical Oncology (ASCO), while about 3,560 children will be diagnosed with a brain or central nervous system (CNS) tumor this year, it is estimated that 16,830 adults (9,490 men and 7,340 women) will die from primary cancerous brain and CNS tumors. DIPG, one of the deadliest pediatric diseases with a dismal less-than-1% survival rate, has an average age of incidence between 5 and 9 years old. Diagnosed at age 19, Neil was even more of an outlier. He sat on the cusp of childhood and adulthood, just old enough to make his own bold decisions regarding treatment and to clearly articulate the experience of the disease. When DIPG robbed him of his ability to speak and to write about the experience, he spoke to us with his eyes, and this we documented with a few telling photographs.

     Stories show far more than statistics, and the sea of voices telling the stories intend to create a big wave. I can imagine Neil’s spirit, riding the crest with a whole bunch of younger souls, all destined to create a sea of change. That is the objective of my writing and sharing his story.


Words Matter

     Words matter. Through voice, we speak words to instantly transmit positive thoughts, encouragement, comfort, love and joy. Through writing, we use words to share valuable information, to describe transformative ideas and to compose inspiring stories. I write for Rhode Island NATURAL AWAKENINGS magazine, because the focus is upbeat – Healthy Living Healthy Planet – and my words go out to over 50,000 readers. More recently, I’ve been working on the story of our late son, Neil, who was, and still is, an enthusiastic and conscious communicator, taking care in choosing just the right words.

Neil, 19, resting in his Houston hotel room with his laptop, writing a petition to solicit support for his right to continue trying the experimental treatment of his choice. He is wearing a boonie hat and dog tags given to him by a friend who served in the Army Special Forces.
Neil composing words in the fight for his Right to Try

     “Neil had a unique voice, his own way of expressing his life experiences, character, thoughts and feelings. That was until a tumor started to grow inside his brain and gradually took away his ability to write and then his ability to speak. The name of the disease, diffuse intrinsic pontine glioma, is a strange string of uncommon vocabulary words. It is better known by its acronym, DIPG. Diffuse means the tumor is dispersed throughout the tissue, as opposed to being a solid tumor. Pontine refers to a part of the brain stem known as the pons, which relays messages between several areas of the brain and between the brain and the rest of the body. Without the pons, the brain would not be able to function, and neither would the body. Intrinsic means deep-seated. Each of these words means the tumor is inoperable. Glioma refers to the glial tissue that is supposed to support and protect the nerve cells, only in the case of DIPG, the glial cells grow out of control and strangle the nerve cell pathways. DIPG gradually takes away all physical abilities, except the ability to think. Throughout the progression of the disease, Neil remained conscious of everything that was happening, and somehow managed to accept it all with grace.

     “Do people realize how blessed they are to have a voice? Since Neil is no longer able to share his story, his thoughts about life and his dreams for the world, I’m here to do it. Things happened in Neil’s life that other kids need to know about in order to help make this world a better place. As Neil’s mom, I’m able to access a lot of material and will share as much as I can in Neil’s own words and the words of the friends, family, coaches and teachers who knew him best. Neil loved a good story, and if Neil’s story and his thoughts about life make people think, and think about their own stories differently, then I will have done my job well.”

     I welcome blog readers to engage and share the thoughts sparked by these words. Words are expressions of thought. Words and thoughts are influential. I dream of empowering more young people, like Neil, to share their ideas, stories and dreams for a better world. Read Neil’s story in the Boston Globe.


Word’s Worth

Etymology – the study of words. Pen – from Middle English, denoting a feather with a sharpened quill that can be dipped in ink for writing; derived from Latin penna, meaning ‘feather.’ When I was around 7 years old, our family traveled to Colonial Williamsburg, Virginia. I remember my souvenirs, a white quill pen and ceramic ink well. Later I married a writer, who for the past 25 years has been my best friend and my teacher, sharing this crazy life and helping me hone my tools and my craft.

He is sitting at his desk, next to mine, and just asked me, out of the blue, where his Exacto penknife disappeared to. I have absolutely no idea!

He has a website, netscribe.com, and here’s a pointed piece he published there a few years ago, about bumper stickers and writing.

The feather, whence the pen

Was shaped that traced the lives of these good men,

Dropped from an angel’s wing.

~ William Wordsworth

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