Though I’ve already written a blog post about pain, I’m here writing about it again. Why? Because I’ve been thinking a lot about pain after recent emergency surgery to have my appendix removed. During the first week of my recovery, I spent a lot of time hanging out on the couch, either sleeping or reading. You’d think I would have treated myself to a few light reads, but, like I said, pain was (and is) very much on my mind. So the first book I picked up from the pile next to me was Pain Woman Takes Your Keys and Other Essays from A Nervous System by Sonya Huber.

In lyrical wit-filled prose, Huber writes about living with rheumatoid arthritis. She invites us into her pain, and all that goes with it: the anger, fatigue, and frustrations; the slump into poor self-image and self-critical talk, as in “Sometimes I berate myself for not being up to the level of other bodies … Sometimes I feel that in writing and revealing pain I am revealing wrongness (33, 85).” Though she writes to understand her own pain, she also writes for all of us. I mean, who has not suffered pain? More so, she writes for women in chronic pain. It is Huber’s sense of “wrongness” with which women in chronic pain are marked. Sadly, even centuries after women were labeled “hysterical” for expressing pain, not much has changed. When it comes to pain, women are still misunderstood.

Because chronic pain is not like a missing limb or a gaping wound, it’s what Huber calls “invisible suffering (25).” Thus, women are often forced to explain their pain to others, as she openly attests to in her letter to a feminist scholar (Yes, a woman!): “Thank you for making me articulate exactly what it means to live with a disease that is both painful and energy sapping … Thank you for making me detail the obstacles, which include the fact that any lengthy travel … will make me sick and thus destroy weeks of lucid work and family time. (117).”

As much as Huber’s book is about pain, she does bring relief to the page at just the right moments. For example, she shares with us how she reaches out to Facebook friends for stickers to decorate her cane, creating a “joyful explosion of adhesives that … brings more joy than an anonymous metal pole (96).”

Sometimes I wonder if pain ever gets tired of its role – always making us cranky and unpleasant to be around. Maybe the pain we experience is not always an indicator of illness or injury, and instead sometimes it’s trying to tell us, “I’m hurting too, and want you to have fun with me so we can both feel better.” Who knows?

What I know is how I feel about the pain scale. I dread it. Because I’m not good at making decisions, asking me to assign a number to my pain only creates additional pain. Instead of numbers, I prefer using real life language, the language of what it means to be a human being in pain. That’s why I’m on Huber’s side when she tells it to us straight: in place of a seven on the pain scale, she says, “Don’t fucking touch me (156).”

What about you? What “real life” language describes your pain?

Below is a piece I wrote at the urging of author, editor, and teacher Donald Quist. He asked me to contribute my reflections about how I’ve changed over the previous ten years to his project Past Ten in which various writers share similar recollections. As Donald says, the personal stories in Past Ten are a “testament to the transformative power of time and the human capacity to turn the unpredictable into art.”
Enjoy!

June 21, 2007

It’s 2:06 p.m. The summer solstice. I’m sitting at my desk at the Vermont Lung Association, where I work as an administrative assistant. I’m tapping at the computer keys, logging contributions from donors into an Excel spreadsheet longer than this day. My fingertips turn numb with boredom. My vision blurs from all the lines and rectangles and numbers. Bringg, bringg, bringg. My head thumps with each shrill ring of the telephone. I answer the call from a board member, and pencil his message on a sticky note to be passed on to the CEO. But when I hang up I’ve forgotten his name. Bob? Jim? Ted? My brain’s gas tank is near empty, and I want to lay my head on my desk, nap away this day. I want to sleep off my traumatic brain injury, close my eyes against a diagnosis that still paper cuts my tongue each time I speak it.

It’s been three years since my head smacked against the pavement when a car mowed me down, and no amount of sleep, or even the continuous sunlight on this day can burn off the smog obscuring my mind’s eye from seeing with any kind of mental clarity. I want this day to end. But I must keep tapping, plugging in numbers and names and dates. Filling up the rectangles of a spreadsheet is like filling in the white spaces of my unsure-where-I’m-going-life. How long I’ll pretend I’m happy working here in an office that smells like a basement, with plastic window blinds that clack each time artificial air from the vent gusts its cold breath into the room, I don’t know.

Of course, I’d rather be standing by a newborn’s crib side, where I stood as a nurse for fifteen years. Where I changed diapers, bottle-fed infants their mamas breast milk, cuddled preemies in cotton receiving blankets. But that was before the crash. Now my broken brain couldn’t bear the constant noise of a neonatal intensive care unit: wailing newborns, alarming monitors, dinging IV pumps. That’s why I am here, at this desk, where it’s mostly quiet and I’m asked only to accomplish one job at a time, like filling in rectangle after rectangle. Because it takes all of me to get through this day, I don’t have the mental energy to imagine the formula or function of my future. So I keep tapping.

The planet has raced around the sun ten times since that day. A decade. Another summer solstice has arrived, and I’m still tapping at the computer keys. I’ve figured out my life’s formula, or at least I think I have. With each keystroke, I fill up my own spreadsheet, one I created in 2010, when I enrolled in graduate school for an MFA in writing. That spreadsheet I have replaced with draft after draft of my memoir, with my favorite quotes from authors, blog posts to write, books to read, more books to write.

My brain still must work hard to hold onto names, though, and it still gets low gas mileage. Words and phrases skid away from me, emerge in anagrams, end in ellipses or in incomplete sentences. But I now look forward to the longest day of the year. The sun equals hope; as the days expand, it’s hope that keeps me from tearing up my draft and throwing it in the trash. Hope is the formula and function that carries me through the winter solstice, into the next decade.

Please visit Past Ten to read more inspiring stories.

It’s June –  Alzheimer’s and Brain Awareness Month. Did you know that? If not, no worries. I’m here to tell you all about it. Alzheimer’s and Brain Awareness Month is a time to help raise awareness about a disease that affects millions of people world-wide. Though researchers know a lot about Alzheimer’s, they still don’t have a cure, which makes the disease still a mystery. That’s why purple is the color designated to Alzheimer’s, because it symbolizes mystery. But purple also represents magic, and it is that magical day millions of us are waiting for, the day when we can say with confidence that Alzheimer’s no longer exists, that it is no longer a threat to us or our loved ones. During the month of June, the Alzheimer’s Association encourages us to wear purple, to spread a purple light in honor of all affected by this life-robbing disease.

To learn more about Alzheimer’s and Brain Awareness Month,  I encourage you to read this past Sunday’s special section of the Burlington Free Press. Here you will find my article, “Agitation in Alzheimer’s, about the latest research involving an investigational medication to help reduce agitation in those living with the disease. In the 31-page section, you’ll also find personal narratives about individuals with Alzheimer’s, stories about the role of caregivers, support services available, and the community’s efforts to raise awareness.

Happy June!

Wear purple; wear hope.

“The sky is already purple; the first few stars have appeared, suddenly, as if someone had thrown a handful of silver across the edge of the world.”

― Alice Hoffman, Here on Earth

What I learned at this year’s Muse & Marketplace, Grub Street’s National Conference for Writers:

1. “Brevity is not the soul of a good pitch.” You need to give magazine editors enough information to help them decide if your story, essay, or op-ed is a good fit for their publication (Adam McGee, managing editor of Boston Review).
2. Before choosing which publishing path – traditional, small press, self-publishing, partner-publishing – is best, literary agent  April Eberhardt encourages us to answer the following questions: What is my goal? What is my timetable? How much time am I willing to put into searching for an agent? How much money am I willing to invest? How much patience do I have? How do I define success?
3. Don’t buy a $12 glass of mediocre wine at the conference’s lit lounge event when you could take the elevator seven flights to your room, where you have a $12 bottle of cabernet rated 90 points by Wine Spectator.
4. Characters in our stories should not fit into neat categories. “Real characters lack perfect insight” (Nathan Hill, author of The Nix).
5. Go through the first 30 pages of your manuscript, and look at each paragraph, asking yourself where your book really begins (Sorche Fairbank, Literary agent).
6. When rejections from editors or agents are making you feel like you should never have quit your day job, or you’re experiencing burn out, try writing in a new genre: if you usually write memoir, try fiction, or poetry (Jennifer Brown, author of the debut novel Modern Girls).
7. Never have a resolution at the end of a chapter; you want to keep the reader reading (Adam Stumacher, author and educator).
8.  When a Grubbie offers you either a chocolate or a mint before you head into the Manuscript Mart to meet with an agent, ALWAYS choose the chocolate, and do not eat it until after your meeting. Remember: Chocolate is a mood-lifter.
9. Change the font in each draft of your manuscript you read. Because our eyes become accustomed to the same font, we might not see mistakes. Changing the font helps us to see the narrative with a different eye (Sorche Fairbank, Literary agent).
10. Even if it takes you 15 years to finish your story, it’s worth it. “Whomever is intended to hear it will hear it” (Isabel Wilkerson, Pulitzer Prize winner).

Photo used with permission from Grub Street.

I’m here to share with you my latest interview with ITNAmerica, a nonprofit transportation network for seniors serving fifteen states. “Why the interview?” you might be wondering. Have you ever thought about how you would manage your day-to-day life if you couldn’t drive? Do you ever think about what you’ll do when you’re old and frail, or old and ill, and can’t drive? While I don’t lose sleep over it, I do think about it. I think about how I’ll get to the grocery store, the bank, the movies, and, of course, the wine outlet. The answer: because my immediate world has left me with few emergency exists through which I can escape such dread-filled questions.

My eighty-eight-year-old mother-in-law, who lives in a condo down the hall from my husband and me, is blind in one eye and has dementia. She cannot driven; by choice she has not driven for years (God bless her), and depends on family for transportation. Fortunately, or unfortunately, depending on how you look at it, she prefers not to leave the house very much. When my father was diagnosed with Alzheimer’s, and the dents and scratches scarring the front and rear of his car left me no other choice but to take the keys away from him, he had to learn to accept that caregivers would be driving him to and from the bank, doctor’s appointments, and his favorite Italian restaurant. And because it was an older driver who slammed into me, and seveny-two others, while I was visiting a farmers’ market in California years ago, I can’t help imagine how all seventy-three of our lives would be much different if the driver had access to transportation services, and was willing to use them.

I learned about ITNAmerica while researching news articles for a writing project and, ironically enough, learned that the founder, Katherine Freund, experienced a similar tragedy to mine and dozens of others: In 1988, an eighty-four-year-old driver ran down her three-year-old son. He survived, but suffered a traumatic brain injury. Instead of letting herself get swallowed-up by anger, Katherine, an inspirational speaker who has been featured in The Wall Street Journal and on CNN, and has won numerous awards recognizing her work around public health initiatives, made lemonade out of lemons (forgive me for the cliched proverbial phrase). She built and supported community-based senior transportation services.

Like Katherine, I too feel summoned to advocate for the most efficient and cost effective transportation options for the older population. While here in Northern Vermont we have Neighbor Rides and Special Services Transportation Agency (SSTA), I’m not sure that’s enough. After all, an estimated 25% of Vermonters will be sixty-five and older by 2030. Believe it or not, Vermont ranks higher than Florida when it comes to age: 42.8 versus 41.9.

What transportation options for elders are available in your community? Maybe you’re twenty-nine, thirty-three, or fifty, like me, and saying this to yourself: it’s too soon to plan for when I’m eighty, eighty-nine, one hundred.

But I must agree with Jodi Picoult: “Time is an optical illusion- never quite as solid or strong as we think it is.”