At the Vermont Brain Injury Conference last fall, a TBI survivor, who sustained his injury years ago, spoke to an audience of nearly four hundred people. He didn’t have any visible scars, difficulty with speech, or an obvious limp to his gait. He spoke clearly and eloquently, and, in fact, was back in school pursuing a college degree. Because he appears healthy and strong, he explained how those without a TBI often don’t know what to say to him when they learn that he sustained a TBI. I recall him saying to the audience something like, “I’m me.” In other words, he was affirming his TBI, not from the perspective of a victim, but from the perspective of an individual who has accepted his disability, who has learned to cope with the challenges he faces each day, and who wants others to know that, though he looks “normal,” he cannot do everything others can do.

He left me thinking, thinking a lot, about how confusing a TBI is for those who do not have one, especially if they cannot see or hear it – the scars, the limp, the slowed speech. We all mean well (or I like to think so), and when we meet someone with a TBI, or any kind of disability, it’s natural to want to offer an opinion or suggestion, even if it’s unsolicited. I’ve done it myself, and I have a TBI. A few months ago, when walking on the treadmill in the gym where I live, a middle-aged woman with a cane shuffled in, one foot dragging along the carpet. The arm on the same side of the dragging foot hung limp. Her speech was slurred when she said hello. I assumed she had had a stroke. I smiled at her and introduced myself. I watched her struggle to lift herself up onto the seat of the stationary bike, and suggested that she might want to try the recumbent bike. She responded with a soft voice, saying that she had trouble adjusting the seat of the recumbent bike. I offered to help her, but she said she could manage herself. “Are you sure?” I asked. “Yeah, I’ll figure it out.” She did. Though I was being helpful, I wasn’t. She needed to figure out, on her own, how to adjust the seat. If she needed my help, she would have asked me.

While we may mean well when interacting with someone who has an invisible TBI, or any invisible disability, there are an untold number of statements we may find ourselves saying (some of them people have said to me), that are not helpful, but hurtful. It can be said that such statements are not only meant as an attempt to be helpful, but also as a diversion from facing our own morbidity, and mortality. For instance, it’s easier to say to someone with a TBI, “But you look great,” than to say nothing at all, which would leave too much space in your mind for thoughts of your own vulnerability.

To learn what not to say to people with a TBI, go to Brainline. This same site offers other communication strategies when interacting with TBI survivors, including those with post-traumatic stress disorder. But please know that by sharing this list, my intention is not to be prescriptive or didactic. Dare I say it … it’s my way of making a suggestion. (Maybe I’m not being very helpful, but I can only hope so.)

Thanks for considering these tips!

I wrote a novel in thirty days last November. Yes, you read that correctly. Thirty days. How did I do it? The drive to write, determination, and encouragement – from family, friends, and the staff at nanowrimo.

Nanowrimo, or National Novel Writing Month, begins every year on November 1, when participants begin working toward the goal of completing a fifty-thousand-word novel by midnight on November 30. Anyone can participate, from novice to veteran writers. All you need to do is sign up, create your novel on the website, and, of course, write at least sixteen hundred and sixty-seven words a day.

So what motivated me to spend a month doing little else but write? First, I already had an idea for a novel in mind, and had been thinking about starting it, but kept telling myself I’d get to it later, maybe next year. In September, two months before the kick-off of nanowrimo, my stepdaughter said, “Melissa, do it; you can do it.” Her enthusiasm was contagious. Why not? I thought – after spending the spring and summer revising my memoir, I had put it aside, with plans to read through and revise it, yet again, starting in December. So, what better time than November, when darkness presses down on the light, to push back against the sluggish side-effect of winter’s gloom, and write the first draft of my novel?

How did I begin? I began before the beginning – a lot of research, an outline, a diagram of the novel’s arc, flashcards jotted with brief descriptions of each chapter, character sketches – physical descriptors and clothing styles, family and work history, hobbies, dreams, favorite foods, habits, living situations, and strengths and weaknesses. I assigned each character a name that conjured his or her unique temperament, and downloaded from the Internet images that matched each character’s personality. I created living, breathing, heart-beating human beings, and listened to the nuances of each of their voices in my head. I moved into their lives, their minds, their every thought. I did all of this before typing word one.

Though I started preparing two months in advance of the kick-off of nanowrimo, and felt confident about the trajectory of my story, when I finally sat my butt in the chair to type the first sentence, the uninvited judge living in my head spoke mightily. And there were days when my brain churned on sloth speed and I struggled to reach the minimum daily goal of sixteen hundred and sixty-seven words. But I countered the judge’s arguments, re-filled my brain’s glucose tank with fun snacks (mostly dark chocolate), and gave myself pep talks: “Keep typing, keep writing, keep the characters alive and breathing.” Of course, there’s something to be said for seeing progress, in numbers. That’s partly how nanowrimo kept me going: Each day I downloaded what I had written on the website and, voilà, the link calculated exactly how many words I had written, how many words I had left to write, and my average word count per day. More than the word count, the unraveling of the story sustained me. By November 28, I had fifty thousand words. I was ahead of schedule! On November 30, I typed my last sentence. Total word count: fifty-three thousand nine hundred fifty-nine words.

Though it’s only January, and November is three seasons in the future, if you’re thinking about writing a novel, and want to sign up for nanowrimo next year, it’s not too soon to start thinking about your story now: plot, arc, theme, characters.  Though some people may have the brainpower and creative heft to dive into nanowrimo without a life jacket, I vote for having one nearby, whether it’s an outline, a diagram, or both. And getting your work onto the page will boost your confidence, deliver a lasting high, encourage you to say, “Yes, I can do it!”

Writing paraphernalia and conditions I recommend: Note cards, corkboard, your favorite pen, pencils, notebook, sticky notes, drawing paper, a quiet space, quotes from writers that inspire you, your favorite chocolates or other snacks, plenty of water, tea/coffee, comfy clothing, and a happy light for those who live in locations like Vermont, where the sun goes on sabbatical starting in November.

Good-luck!

Every day, at least eight black people, three gay people, three Jewish, and one Latino person is a victim of a hate crime. A hate crime is defined as “crimes that manifest evidence of prejudice based on race, gender identity, religion, disability, sexual orientation, or ethnicity.”

In celebration of Martin Luther King Jr. Day, Ilyasah Al-Shabazz, a community organizer, social activist, and motivational speaker, brought a church full of wide-eyed listeners to a standing applause as she articulated the byproducts of injustice: “Hatred is a learned behavior we are teaching our children, and if we teach them to hate others, we teach them to hate themselves.” The daughter of Malcolm X, one of the most influential African Americans in history, Ilyasah made it known that her father was “misunderstood” when he was criticized for his violent approach to resolving racial injustice. In defense of his more violent protests, he would quote Shakespeare’s Hamlet: “‘To be, or not to be: that is the question: Whether ’tis nobler in the mind to suffer the slings and arrows of outrageous fortune, or to take arms against a sea of troubles, and by opposing end them?”’ As Ilyasah said, her father, “was reacting to the injustices around him.”

Ilyasah was only three-years-old when her father was assassinated in 1965. Her mother, Betty Shabbaz, an educator and civil rights advocate, was in her twenties and pregnant with twins, yet went on to raise six daughters. She eventually received a master’s degree, then a PhD. “She never accepted no or I can’t,” Ilyasah said about her mother. Ilyasah does not accept “no or I can’t” either, but as she declared, “Forget what they say about pulling yourself up by your own boot straps. We need one another.”

It’s true what Ilyasah said: “Just one life, just this one time, then we go elsewhere.”

But how do we mark the one life we have been given with “yes” and “I can,” rather than with “no and “I can’t”? Ilyasah’s answer: “Knowledge of historical information prepares us for leadership and instills in us self-respect, strength, compassion, reminds us of who we are at our core – to be or not to be, that is the essential question,” she said. In other words, we have the choice to act or not to act.

Do you enjoy drawing, coloring, painting? So what if you are not a Picasso or a Van Gogh.  What I’m about to share with you just might inspire you to head out to your local art shop for colored pencils and a drawing pad. Research suggests that creating visual art enhances memory, and improves interactions between certain parts of the brain. Based on feedback from a small group of retirees, improvement in brain functioning may also strengthen one’s psychological state of mind.  This seems logical. After all, as researchers say, “The creation of visual art is a personal integrative experience—an experience of ‘flow,’ in which the participant is fully emerged in the creative activity.” With that integration, brain connections are strengthened, which, in turn, boosts self-confidence.

For individuals with a TBI, art is a form of therapy. It restores connections in the brain damaged by trauma. This restoration process is called neuroplasticity: the changes in nerve pathways of the brain that affect behavior. Yes, we can actually re-wire our brains by intentionally changing the way we think and do things. Since 2010, therapists at the National Intrepid Center of Excellence (NICoE), at Fort Belvoir, Virginia have been using art as a tool in treating war veterans who have sustained TBIs.

Art therapy does more than help to heal an injured brain. Jackie Briggs, a therapist at NICoE says, “For service members who might already have trouble expressing themselves … art therapy gives them a chance to use free expression, allowing whatever needs to bubble up from below the surface to be seen and evaluated.” When thoughts “bubble” up, service members gain a better understanding of their symptoms such as irritability, anxiety, and depression. With that deeper understanding, their relationships benefit, because they are able to effectively unearth their buried feelings and thoughts.

At NICoE, service members decorate blank papier-mâché masks. The reasoning behind using this form of art therapy is based on how trauma works; it blocks the part of the brain responsible for speech and language. The image of the mask itself is tangible, a concrete method of showing how service members are feeling. As one of the therapists at NICoE says, “the masks have given service members a visual voice.” The added benefit is that they know they are not being judged, or critiqued. Making the masks affords them the opportunity to explore, engage in the process of creating something that encourages free expression.

The formof art doesn’t matter. Art is art. Juliet Madsen, a veteran of two wars who sustained a TBI when a roadside bomb hit her convoy, likes to doodle. In an email exchange with her this past fall this is what she had to say about doodling:

Doodling stimulates your creative side, allows your body to calm down, takes the active stresses and puts them on the back burner, can sometimes give you an artistic answer to your problems if you open to it, and gives you a time out… I am a big fan. Once you are an accomplished Doodle Artist take a set of colored pencils to your work or thin point sharpies, then you are really working it.

Juliet inspired me. I bought myself a sketchpad and sharpie and started doodling. I’m now a big fan too!

Are you a doodler, a painter, a sketcher, a creator of masks? If not, why not join in. Grab a sharpie, a pen or pencil, a paintbrush. As Juliet said, “Stimulate your creative side.”

Cheers to free expression, to an integrative experience – and to a healthy brain!

If you want to learn more about the masks service members have created, read the “The Invisible War on the Brain,” published in February 2015 by National Geographic.

http://ngm.nationalgeographic.com/2015/02/table-of-contents

I’m happy to share with you that my essay, “A Faded Scar with Palpable Edges,” is now available to read in The Medical Literary Messenger, a web-based journal associated with Virginia Commonwealth University School of Medicine, and whose aim is “to promote humanism and the healing arts through prose, poetry, and photography.” The essay is about my struggle to overcome Anorexia Nervosa, an eating disorder affecting between one and five percent of female adolescents and young girls. The deeply contemplative and inspiring creative works published in the journal can’t help but make one pause to reflect on health, illness, and the human condition. So, while I hope you take a moment to read my essay, I also encourage you to read, and view, the other “voice[s] for the healing arts (Medical Literary Messenger).”

“A Faded Scar with Palpable Edges” was previously published in Humanthology, website devoted to real life chronicles connecting writers and readers to causes they embrace. Though I’m sad to share that Humanthology is no longer in publication, you can still access my essay, and others, on the website.