The following tribute to Oliver Sacks, an eminent neurologist, prolific writer, and quintessential humanist who died from cancer at 82 on August 30,  is dedicated to Christy Lyn Bailey, who died from Inflammatory Breast Cancer (IBC) in June 2015. A good friend to many people around the world, she lived each day with passion and curiosity – she traveled to nineteen different countries, completed marathons and triathlons, left her corporate job and joined the Peace Corps. Christy also pursued her passion for writing and teaching: she earned an MFA, and taught creative writing to university students, and to homeless children. And she wrote a memoir, which tells of her journey toward acceptance after losing her hair to alopecia areata. 

Christy was a first-rate storyteller, and shared her IBC experience online with countless compassionate readers. Each story she shared revealed her bravery, sensitivity, love, and gratitude. As her mother says, “She dreamed big.”  Christy worked hard to survive, to say all she needed to say, to write what she needed to write, but mostly she gave to others – right up until she fell into a peaceful and ever-lasting sleep. 

Do you feel your work is done? Do you have more to do, to give, to write, to say? Oliver Sacks leaves us to ponder such existential inquiries in his essay, “Sabbath.”

It’s evident he had more to say, even as his death drew nigh: Fourteen days before he took his last breath, the New York Times published “Sabbath.” In the essay, Sacks speaks out about his withdrawal from the Jewish rituals he grew up with, his indifference to his parents’ beliefs, and his addiction to methamphetamines. In the context of his sexuality, he speaks to how the writing of his newly released memoir, On the Move, allowed him to finally unearth what he had kept buried away for far too long:  “I had been able, for the first time in my life, to make a full and frank declaration of my sexuality, facing the world openly, with no more guilty secrets locked up inside me.”

Sacks was also the kind of man who thought deeply about others. His natural curiosity and interest in the world around him, and likely his sense of isolation from his family who questioned his sexual orientation, drove him to venture far from his family in England. In 1960, as a new physician, he left for Los Angeles, where he found what he called a “sort of connection.” Still, Sacks yearned for some deeper meaning – lacking that, an addiction to methamphetamines lured him in. But he recovered, slowly, and found his way: He worked as a physician at a chronic care hospital in the Bronx, where his fascination with his patients mobilized him to tell their stories, unfathomable stories he felt it was his mission to share. That’s when he became a storyteller, a storyteller of the human condition. Those stories span the pages of The Man Who Mistook his Wife for a Hat, in which Sacks shows the struggles of his patients living with various neurological disorders. At the same time, he eloquently describes the resilience of the human spirit, making each and every individual he writes about real life human beings on the page. Sacks’ curiosity and interest in others is steadfast and palpable in the other dozen books he has written such as Hallucinations, Awakenings, and The Mind’s Eye.

It’s Sacks’ open, empathetic, and introspective storytelling that prompts us to ask of ourselves, “What moves us? What must we share with others? In his essay, “Altered States,” though Sacks suggests that drugs is a “shortcut” to “transcendence,” he’s also clear about one thing: that understanding can be found through other means. As Sacks reminds us in the essay, the point is “To live on a day-to-day basis is insufficient for human beings; we need to transcend, transport, escape; we need meaning, understanding, and explanation; we need to see over-all patterns in our lives. We need hope, the sense of a future. And we need freedom (or, at least, the illusion of freedom) to get beyond ourselves … to travel to other worlds, to rise above our immediate surroundings.”

That’s exactly what Oliver Sacks and Christy Bailey did – they rose above their “immediate surroundings.” They left us with the and abundance of hope.

On August 2, as part of a three person panel, I had the occasion to discuss learning accommodations available to traumatic brain injury survivors on “Another Fork in the Road,” a broadcast of the weekly Brain Injury Radio Network, hosted by Donna O’Donnell Figurski. Juliet Madsen, a retired military veteran of the Iraq and Afghanistan wars, sustained a TBI in 2004 while serving in Operation Iraqi Freedom. Both she and I discussed post-TBI issues such as indecisiveness, poor attention span, the inability to remember names, and the need to rely on written and auditory cues to accomplish daily tasks. While I found it to be comforting to know that I am not alone with the fall out of a TBI and what Juliet calls a “revolving door” (One day you have a handle on things, and the next day you don’t), I found her zeal to volunteer inspiring.

A quilter for twenty-five years, Juliet founded Stroke of Luck Quilting and Design  and began sewing quilts to raise funds raise for disabled veterans. She developed the fundraiser, “The Ultimate Sew-in,” and, along with other volunteers, has made 500 quilts for injured soldiers. She also serves as an ambassador for the Invisible Disabilities Association (IDA) and speaks publicly about TBI and PTSD. And, as part of the Veterans Book Project, Juliet worked collaboratively with dozens of other veterans to write Objects for Deployment. She gathered unsettling images of the Iraq and Afghanistan wars with the goal of making meaning out of her memories.

Since the radio show nearly one month ago, I’ve thought a lot about why traumatized individuals spend time volunteering, and go back to a memoir I read a few months ago. In Moving Violations, the author John Hockenberry says, “Trauma intensifies existence.” In other words, trauma brings forth experiences previously shrouded by day-to-day routines, and propels us to re-invent our lives. So it’s reasonable to say that volunteering is just one path toward re-invention. And, since traumatized people often struggle with depression and a sense of helplessness, giving back to the community can help boost self-esteem and a sense of accomplishment. From that, unfolds a better sense of emotional wellbeing. And since volunteering usually involves being around other people, it makes one less isolated, a core risk factor for depression. Of course, these benefits are not exclusive to traumatized individuals; others reap emotional gains too.

Most of us want to be happy, right? A dose of it could come as easily as spending two hours every few months playing music for elders at an assisted living facility, walking three miles once a year to raise money for a national nonprofit, or serving dinner to the homeless at a shelter during the holidays.

Does volunteering make you happy? What kind of volunteer work makes you happy? Please share.

Are you a writer who is wondering how to tackle editing your manuscript? As I edit my memoir, I think about the tips Ann Hood  shared at the Muse and Marketplace last May in her workshop, “How To Be Your Own Best Editor.” I left the workshop with pages of a notebook filled with her savory tidbits, and re-read them again and again when I’m stuck. Here they are:

First, you need to develop writing habits that you can keep. And don’t allow anything to interfere with your writing time. If need be, Ann suggested finding a writer friend who is amendable to signing a contract with you.

Each day, before writing the next pages of her manuscript, Ann reads aloud what she wrote the day before, and edits at she goes along (it’s too easy to skim over awkward sentences and words when reading silently). She could not have emphasized this enough: When writing first chapters, start where something happens rather than with backstory. While working on those first pages, Ann reminded us to avoid starting with clichés like long descriptions of the weather, or a scene where someone is waking up. As she said, we all wake up the same way: we crawl out of bed, and rub the sleep from our eyes as we shuffle to the bathroom, pee, brush our teeth, etc. I believed it when Ann declared that first chapters tend to get revised the most – I’ve lost count as to how many times I’ve deleted the first chapter of my memoir in progress and have had to start all over again. This happens because we usually start the piece in the wrong place, and believe that’s exactly where the book should start.

On a micro editing level, Ann cautioned against overuse of the verb to be, as in, “she was walking.” Instead, write this: “She walked.” Similarly, she advised to watch out for extraneous and vague descriptors like “so,” “awesome,” and “meanwhile.” The same goes for words like “smile,” “look, and” laugh.”  A recent word count of my two-hundred-fifty-page memoir revealed fifty smiles, and at least seventy looks. Ann suggests we strive for something that is uniquely revealing to your character, such as picking at knuckles to show a nervous response. Here’s another micro editing detail worth jotting down on a Post-it and sticking on your desk: make sure the beginnings and ends of scenes and chapters are resonant.

On a more global point, Ann referred to Grace Paley’s assertion that every story is two stories: the one on the surface and the one bubbling beneath. The climax is when they collide. The external conflict is the plot, or the tangible parts of the story, whereas the internal conflict is a need.

Ann also alluded to Flannery O’Conner, who said writing is painting a picture with words. Or, rather than stating emotions, show them. How is your character sad, angry, or lonely? And don’t forget to have the protagonist do three essential things along the way: React, reply, reflect. As for dialogue, it should do more than offer information. It should advance the conflict, develop character, move the story forward. Of course, you can’t forget the setting – every scene should have one. Is it in a hospital, an office, at the beach?

When finished with a complete draft, Ann urged us to put it away for three months before sending it out to agents (at the very least, one month). Why? She summed it up in an Allen Ginsberg quote: “To regain your voice, you need to forget you ever heard it.” Now that’s worth writing down on a Post-it.

Please feel free to share any thoughts, questions, or insights.

Where do you rate your migraine, back pain, abdominal pain? A two, a five, a ten?

A few weeks ago I went to see my physical therapist for hip pain. “On a scale of zero to ten, ten sending you to the emergency room, how bad is your pain?” she asked. Pain is universal, and, like most of us, I’ve been asked to choose a number from the pain scale time and again: in the weeks and months after my pelvis, foot, ribs, and lower back fractured in a car accident, when my bowel got all tied up in a knot, and when a cyst on my ovary ruptured.

In 1999, the Veterans Administration established pain as the fifth vital sign, requiring medical professionals to assess pain using the pain scale, a practice introduced by hospice in the 1970s. But how accurate is that scale? While one’s heart rate, blood pressure, and temperature can be objectively measured, pain is subjective. It’s based on perception, which is influenced by a whole host of factors: attitude, stress, culture, upbringing, age, gender, and more. One’s five may be another’s eight. And what about all the fractions in between two whole numbers? Couldn’t one’s pain be a five and two-thirds? What about chronic pain? Doesn’t that change our perception of overall pain? Are you more apt to assign an eight to, say, your recent foot pain because you’re sick and tired of the pain? Or are you more likely to give that toe, say, a three because you’ve become used to pain and can no longer decipher a three from a four or an eight?

I’ve never met anyone who said they’ve never felt physical pain. There are too many opportunities: paper cuts, stubbed toes, headaches, toothaches, back and neck aches. Why is there a zero on the pain scale anyway? It seems useless. As Eula Biss says in her essay “The Pain Scale,”  “Zero doesn’t behave like other numbers.” When we count, we don’t start with zero: “Zero, one, two, three.” Zero is merely a placeholder, a midway point between one and minus one, for instance.

Because I’m not good at making decisions, I’m not partial to the pain scale.

I think pain is best described with real life descriptors: throbbing, stabbing, crushing, needling, nauseating, a quadruple knot in the gut, the hottest part of a fire, a butcher knife to the toe. I want to tear apart my skin and crawl out of my body. I want to scream, scream, scream.

If you were asked to describe your pain, past or present, what would you say?

You’ve heard of Anorexia Nervosa and Bulimia,  right? Anorexics restrict their eating whereas Bulimics go through cycles of binge eating followed by purging. But what is Orthorexia Nervosa? An eating disorder currently not recognized in the Diagnostic Statistical Manual of Mental Disorders, Orthorexia was first coined in 1996 by a physician who used it to describe patients who were overly concerned with their health. Orthorexia, which literally translates into “fixation on righteous eating,” begins with one’s attempt to eat healthy foods. But orthorexics then become obsessed with food quality and how much to eat. The more restrictive the diet, the greater one’s health suffers. Like anorexia and bulimia, there is no exact cause to orthorexia. Though the desire is to eat healthfully, there are other deeply rooted motivations, such as the hunger to be thin, the determination to be in control, and the need to improve self-esteem.

Rachel Levine, a kindergarten teacher in Denver, Colorado, and an advocate for those suffering from eating disorders, has been in recovery from both orthorexia and anorexia for more than seven years. In the March 2015 issue of Self Magazine, she shares her raw story of how orthorexia “almost killed her,” starting from the very beginning, when her heart nearly stopped beating from nutritional deprivation. To learn more about how Rachel got her appetite for life back, I invite you to read her story, “What it’s Like to Care Too Much About Eating,” here.