A Writer’s Fairy Tale

After spending an hour picking and cleaning dandelion greens to make a salad, I went out for a walk. At the corner of Middle Road and Balsam Drive, I saw a shiny object laying on the sidewalk. It was a tiny gold metal charm shaped like a flower. Neither bronze, nor silver, but gold. In the center was a gold letter L, surrounded by a circle of blue enamel. I saw the faces of two roaring lions and read the word LIONS at the top and the word INTERNATIONAL at the bottom.

Lions Clubs International is the world’s biggest service club. The members, called Lions, help others in their local communities. I thought about the dandelions I had just picked, and I thought about the word dandy. Dandy means very good, as in dandy lion – a very good lion. I held in my hand was the lost charm of a dandy Lion! Was this merely coincidence?

I looked at the tiny metal charm and thought to myself, “It looks like a fairy-sized medal.” A medal is an award for being the best at something. It hangs around the neck on a ribbon. I could imagine a small fairy finding this charm and wearing it on a string around her neck.

I looked at the tiny medal charm and thought, “A medal is also an award given to a soldier for mettle.” Mettle means courage to carry on. If someone wants to test your mettle, they want to see if you have the heart to follow through when the going gets tough. Lions are associated with courage.

I looked at the tiny mettle charm, came to a decision and announced, “I give this tiny metal medal for mettle to the dandelion. Dandelions grow in some of the toughest places, in poor soil and up through cracks of asphalt. They tolerate frost, freezing cold and crowding. They grow fast and spread as quickly as the wind can scatter their seeds.

I looked at the charm and thought of fourth word, meddle, which means to mix or mess around in someone else’s business. This word stirred my imagination further. Do fairies meddle with people? I could imagine a small fairy carefully placing the charm down on the sidewalk and darting away into the bushes, giggling. All in good fun, of course!

A Writer’s Fairy Tale Continued: Our son, Neil, passed away with cancer in early 2017. Heartbroken, I was trying to figure out how to carry on with my life. This was difficult. Then, three months after Neil’s passing, I found another magical golden treasure on a sidewalk. My friend Gail, an artist whose primary medium is light metals, was showing me the new 2-mile walking path she had established in collaboration with the Health Equity Zone. The path runs through the most impoverished neighborhood in the City of Pawtucket, and it was created to promote more walking and safer walking. I had helped to inspire the concept before Neil became ill, and Gail had brought the idea into reality in the time since. As we began to walk, I saw an ornament lying on the sidewalk – a gold medallion. A medal-lion?

There were also many dandelions along the sidewalk. Dandelions are known for their detoxification effects, especially for cleansing the organs of heavy metal. All parts of the plant are edible, including the roots, stems, leaves and flowers. Each part will cleanse a different part of the body. Tea made from the root helps the digestive system, the stems support the liver and spleen, and the leaves detoxify the blood and lymphatic systems. 

Today while out walking, taking a break from writing this blog, I found three treasures… all mechanical pencils… in serviceable condition… in three different places along Cedar Avenue… perhaps telling me to carry on… keep on walking… dreaming… writing… and having fun with words… and so I shall.

I see… a high-caliber… sharp writer?


Storywalking for Inspiration

The trash I find while out walking inspires much of my writing. Because of this, my husband named me the Storywalker, and we refer to this creative process as “Storywalking.”

For example, yesterday, walking to my yoga class I found a Pokemon card, featuring Vanillish and an Ice Shard attack. Vanillish? Villainish! The card was stiff as ice, with bits of dried leaf plastered to it, masking the face of the character. I tucked it in my pocket.

Further down the sidewalk, I noticed a small liquor bottle, called a nip. On the label was a character that looked like the Devil and some words. The “RED HOT” nip once held some Fireball Cinnamon Whisky. Cinnamon? Pokemon. The Inside was a frozen flash of crystallized water.

What happens when a Shard attack meets a Fireball attack? Poof! A lot of steam! Our son, Neil, used to collect Pokemon cards and play the game with his friends. Unfortunately, Neil was attacked and completely taken out by Cancer last year. Poof! I pulled the Pokemon card out of my pocket and showed it to my yoga teacher as I checked into class. She commented that the leaf fragment covering Vanillish’s face was shaped like a heart. I took off my sneakers, hung up my coat and went into the studio.

As I left yoga, I pulled the card out of my coat pocket. The leaf fragments were gone. They had effectively melted away, revealing the hidden character of Vanillish, a cute smiley composite of ice cream and ice crystals, shaped like an ice cream cone. Sweet! I hold my angel, that sneaky silly cool little devil, forever in my heart and mind.

Captions, starting from top left and spiraling clockwise: Sneaking around cloaked in dead leaves; looking cute and innocent; hoarding sweets with a vampire’s sweet tooth; smiling faces; smiling his way through the last Halloween of his life here; ever ready to engage in battle.

Learn more about After Death Communications (ADC) from Psychology Today. Our angels and muses are there to inspire us.

What do you think about Writing?

Estudiantes de ESL, corte y pegue el siguiente texto en “google translate” para convertirlo a su idioma principal.

One year, Neil’s first assignment for English class was to write a letter to the teacher, about English and writing, so he wrote:

  I like to be treated with respect. It’s nice when teachers tell funny stories about their past related to a subject we’re discussing. I find that it makes classes more interesting and keeps students from dozing off. I really dislike it when a teacher gets overly strict and starts to yell at the class or when one student is goofing off and the whole class gets blamed.

  As a writer I can write pretty strong and vividly, but it’s definitely not my strongest subject. I’d like to get better at using quotation marks and conversations in my writing. I like to write about my memories and past experiences and hate writing “how to” procedures. I’m best at voice in my writing and worst at spelling and grammar (But please, please, please don’t do to many grammar lessons, they bore me to death. Probably why I’m worst at it).

  My favorite book series is the “Alex Rider” series. It’s about a teenage spy who does James Bond kind of stuff. My favorite book type definitly, positivly is fiction/fantasy/Science Fiction. In past classes I’ve hated doing picture narative and have loved doing personal naratives.

Some people like to write science fiction of fantasy stories, while others may prefer composing poetry or keeping a personal journal. Some people dream of publishing a book, while others just enjoy writing and receiving letters. Imagine writing a letter to a teacher and sharing your opinions and preferences with regards to writing

What would you like the teacher to know about you?

What do you like and dislike about English class?

What are your strengths and weaknesses when it comes to writing?

How would you like to improve your writing?

What kind of writing do you enjoy doing?

What genre of books do you like to read?

What are your favorite activities outside of school or work?

Do you participate in activities you might like to write about?

January 28, I begin facilitating a high school Writing Club and am looking forward to conversing with the students about their personal goals – what kinds of pieces they wish to write, what they want to learn and how they hope to improve their skills. Beyond that, I look forward to guiding them, reading their words and learning more about them. So, what do YOU think about writing?

Explore, Experience, Explain (1): Thermometry

Some people write about their adventures, traveling across the icy Arctic, through the wild Amazon, over the boundless sea, or under. Today, I’ve decided to write about the vast unexplored terrain right inside my body. I prepared to navigate this uncharted territory by traveling only 15 miles from home, into the city of Providence, where I underwent a complete body health assessment and consultation, using state-of-the-art diagnostics.

As a writer for Rhode Island’s #1 healthy living magazine, I ‘m always finding there is so much more to explore, research, experience and explain with regards to well-being. After reading a book on bioregulatory medicine, touring Providence’s new BioMed Center and writing an article about both for RI’s Natural Awakenings magazine, I felt drawn to participate in this exploratory process. The process appears to be non-invasive, so why not be a guinea pig. I set up an appointment for January 2, filled out the requisite medical forms and followed through with the appointment.

What happened that day? A whole lot. Where do I begin? With a quick overview and the description of one of six tests. I’m analytical and I’m visual. I like to look at numbers and pictures, because they show me things. The graphic above shows a small sampling of the resulting data of energy signatures, which map the terrain inside my body. The data provides a glimpse of my AlfaVue Regulation Thermometry Report.

I tried to explain this test in my article with one sentence: “whole body regulation thermometry is an assessment that takes skin temperature readings at 119 points on the body, before and after stress, to assess circulation patterns and identify areas of vulnerability or dysregulation.” The stress part sounds a bit scary. In actuality, inducing stress had nothing to do with psychological battering or trotting on a treadmill. It was induced with exposure to a slightly colder temperature for ten minutes. I just stood there. The temperature readings were as quick as a when someone swipes a thermometer across the forehead. The resulting numbers and pictures are far more adequate than my one sentence in explaining thermometry, which was the first and most demanding of all the tests – simply stressful enough for the body to communicate relevant data, so doctors can see, interpret and explain the most significant findings.

What jumped out on this map of my body was a lymph system blockade (red bar on graph). This issue was confirmed by other types of tests administered that day. This is a symptom of being a passionate writer who will sit and spend hours absorbed in the work. According to Anne Lemons, “Prolonged sitting negatively impacts the lymphatic system as well as the heart, brain, and musculoskeletal system (1,2,3). If you sit most of the day for work, set a timer to get up every hour to take a short walk and move your lymph. As you may have heard it described, ‘sitting is the new smoking.'” Lymph vessels are activated by body movement; any activity that moves the arms, legs, and torso will help to move lymph.

The lymphatic system is a network of tissues and organs that help rid the body of toxins, waste and other unwanted materials. While there are numerous doctors trained to treat all the other body systems (neurologist (nervous), cardiologist (cardovascular), gastroenterologist (digestive), endocrinologist (glandular), a patient would be hard-pressed to find a lymphologist.

Understanding the critical role of the lymphatic system, the doctors at BioMed gave me a list of options for exploring and removing this blockade, many of which I can do myself, including dry skin brushing, rebounding for ten minutes per day at my health club, doing a detox regimen, taking a daily spore-based probiotic and adding a few herbal supplements. BioMed also offered me options to expedite the blockade removal process, including cranial/structural core distortion release (CSCDR), myofacial massage, hemosonic treatment and ozone therapy.

I plan to explore all of these options, one by one, to see which makes the most difference for me. I also plan to learn more about the lymph system and how it interacts with the other systems in my body. Once I get past the blockade, I can start to explore other areas of my internal terrain, because there is so much more to learn.

Read my recent article to learn more about bioregulatory medicine. The BioMed Center is hosting an open house on Wednesday, February 13, 4:30-6pm at 111 Chestnut Street in Providence.

Read what Anne Lemons recommends for lymphatic self-care.

Door-opening Sentences

Upon reading the title and the opening sentence of an article, I decide whether to continue reading… when writing articles, I consider the title and first sentence as an open door inviting a reader to step into the topic. Open doors present choices, and readers can choose to enter into the topic, or move on to the next door.

On the last day of 2018, I present six open doors… articles written this past year for Rhode Island’s Natural Awakenings magazine. The magazine tagline is “healthy living healthy planet.” Each article spotlights innovative Rhode Islanders doing amazing stuff to help make this world a better place for others. I’m passionate about interviewing cool people and sharing their inspiring stories. Which door below beckons you to enter?

Meditation in Rhode Island (Feb 2018) – While meditation practice is known to help promote greater concentration, mindfulness and relaxation, it is also shown to help decrease anxiety and depression. Read more.

Regenerating Soil Naturally (Jul 2018)Vermicomposting is the process of using worms and micro-organisms to turn food waste into nutrient-rich humus. Read more.

Plastic Waste Reduction Heroes: Reduce, Reuse and Repurpose (Sep 2018) – Produced from fossil fuel, plastics and plastic waste are directly associated with climate change, and as more people realize this, more people take action. Read more.

Young Voices for Education Equity (Oct 2018) – At Young Voices, a Rhode Island organization that provides low-income youth with advocacy skills, students are helped in understanding an issue, thinking strategically, speaking out articulately and persuasively, and assuming roles of leadership. Read more.

FreshConn: An Online Farmer’s Market with a Social Responsibility (Nov 2018) – When Patrick Straus and Brandon Monti look at problems, they see solutions. Co-founders of FreshConn, Straus and Monti represent the emerging generation of spirit-inspired social entrepreneurs. Read more.

Adventurer Vincent Brown: Owner of 2nd Wind Health Premium Yoga Mats (Dec 2018)What got you into yoga and the yoga mat business? I broke my arm snowboarding. Read more.


Writing for Advocacy

Dear Senator Reed,

We’re writing to ask your support for HRes 69, the National DIPG Awareness Resolution, in 2019, and to share our child’s brain cancer story. The resolution recognizes a day for educating the public about the importance of investing in pediatric cancer research through sharing the stories of DIPG families. These stories are important for promoting the search for safer, gentler, more effective solutions for treating brain tumors in children.

On March 4, 2016, we sat with our 19-year-old son, Neil, as he received a diagnosis of diffuse intrinsic pontine glioma (DIPG), a rare inoperable form of brain cancer. He also received a prognosis of three months life expectancy… or six months, if he chose to undergo six weeks of radiation therapy, by which time, he was told, there may arise a hopeful solution. DIPG families have been listening to these same words for over 50 years, without any advancement in treatment. When Neil decided against radiation, we helped him research and develop a systemic whole body approach, combining alternative treatment strategies.

On June 4, Neil posted the following message on Facebook:

“Today is a bit of a strange day for me. It marks 3 months since being diagnosed with DIPG, the same time frame doctors originally gave me to live. According to the typical case, I shouldn’t be typing to you now.

“So why am I still here? Just some divine act of luck that decided to transcend science? No. There has definitely been some seriously divine luck, but science has not been transcended. Many things have come together to make this all happen as well as it has, but two deserve special note.

“Firstly, the importance of my mom’s understanding and applications of holistic health principles cannot be overstated. I never believed how important this dietary stuff was, but, it’s true, you really are what you eat, which makes me heaps of organic greens, consciously chosen meats, and precisely picked grains all knotted up with specialized supplements. Some may call this hogwash, but when you actually feel it help stabilize what’s considered one of the most malicious tumors, you tend to disagree.

“Secondly, this knot that’s all tied up about Burzynski needs to be let loose. When we first came down to Texas we obviously had no idea what kind of rats nest we were getting into with the FDA. My family and I took in the picture as given, weighing all probabilities, and decided this “renegade doctor” was worth the risk. A 30-year track record of anecdotal success paired with the fact that they were actually offering a clinical trial, something that requires enormous time and effort to put on, gave me more than enough confidence to give them a shot. Why waste their time and money on something they didn’t believe actually works?

“The FDA had to give the trial the green-light-go-ahead, which they did over a year ago. Then, suddenly, the day I began treatment, they decided to pull the plug from thin air, giving little more reason then “cuz we said so.” Thank God for a good judge who cared about human rights, or I might well just be another bug-on-a-rug.

“I have now been on treatment for a fairly significant portion of time and can confidently say it is helping. There is very real legitimacy to the claims of the Burzynski Clinic, and furthermore they have continued to show us nothing but the greatest human hospitality.

“Now, I continue to press on with these forces guiding my health. Only time will tell how I progress, but I approach tomorrow with faith. There are a lot of forces out of my control, but no matter what, I continually remind myself, I get to be alive here and now. I have found the present is a gift worth appreciating a little more.”

Later in June, we received a letter from from Vice President Joe Biden about the cancer moonshot project, which stated: “We will ensure that the patient community is heard, so that patients and their families are treated as partners in care and are given access to their own data and the opportunity to contribute to research.” It’s time for the patient community to be heard. DIPG families have many stories to tell. We all have knowledge, experience, data and heartache to share. Neil passed away February 19, 2017, and we want to assure that his death and suffering, and that of so many other children, was not in vain.

Please refer to the attached photos and the HRes 69 Senate packet, created by the DIPG Advocacy Group, and help us by leading the way to support HRes 69.

Sincerely,

Wendy & Dean Fachon

This is an example of writing for advocacy. Senators Reed (RI) and Rubio (FL) will be leading the way for HRes 69 in the U.S. Senate in 2019. Incidentally, this coming year marks the 50th anniversary of the first man’s first step onto the moon. That was Neil Armstrong. Incidentally, he lost his daughter, Muffy to DIPG in 1962.  And, incidentally, our son, Neil, was named for Neil Armstrong. We are inspired by coincidence and urge DIPG families and friends to call, write and visit their congressmen and senators to request support and share their stories. We are here to help people edit letters for impact. In fact, why not compile and publish these stories in a book to dedicated to advocacy and centered around the cause that has touched all our lives – finding a cure for cancer. The goal of this advocacy project is fifty stories,  representing DIPG families and friends in all fifty states. DIPG stories from outside the U.S. would be a welcome bonus, because we want to know what the experience is like in other countries. Please submit advocacy letters, which include a call to action, story and pictures, here. Limit to under 750 words, and make every word count.

To learn more about DIPG advocacy, listen to the December 13 podcast of Childhood Cancer Talk Radio, Every Voice Matters: The Power of Initiative in Advocacy.

April 18, 2016 – Neil, outpatient, after completing surgery for installation of arterial catheter.


December, 2016 – Neil’s first in-patient hospitalization, head shaved for emergency shunt surgery, after neuro-radiologist assigned to his clinical trial case neglected timely notification of hydrocephalus evident in November 15 MRI (shown here with math teacher, SLTP colleague and Patriots fan, Chris Boie).

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.