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?

“Like many Mexican children, I cleaned the piedritas out of the uncooked beans before they went into the pot – my meal-prep duty to help my overwhelmed mother as she spun around in the kitchen. The process was simple, but time-consuming: a pile of beans was placed at the edge of the table. I’d hold a bowl just below the edge to drop in the clean pieces, and I’d pick off the debris – dried-up seeds, miniature twigs, tiny stones – all the undesirable, inedible stowaways. These would be set aside in a pile of their own, to be tossed at the conclusion of the cleaning.

“I refused to dispense with my pile of detritus too soon since these were the fruits of my labor, the nuggets minded out of the sack. They were much more interesting than the beans which huddled in the bowl, boring as clones.”

Award winning author, poet, fiction writer, memoirist, editor, professor of English, and more, Rigoberto González, who identifies himself as a gay Chicano, delivers that compelling narrative in the opening chapter of his book, autobiography of my hungers. The chapter, “allegory,” could not be better titled, for it’s the peidritas, or stones, that are emblematic of Rigoberto: He sees himself as the “debris,” the “undesirable,” “the dried-up seed.” But he refuses to “dispense” with himself, to give in, to give up. Through breath-halting poetry and affecting prose, each vignette in this slim yet lasting memoir portrays Rigoberto’s tumultuous journey through his childhood and beyond. His literal hunger growing up poor morphs into other kinds of hungers – hunger for love, and a lover, for acceptance and recognition, for an attractive body, and a healthy body, for quiet comfort, and for sustained empathy and understanding. Along the way, though, Rigoberto fills the “uninhabited rooms” of his existence with refreshing self-awareness and enduring vision.

Autobiography of my hungers will leave you sated, yet craving more – more of Rigoberto’s “gallery of tiny gems, colorful and edible as gumdrops.”

In her debut novel, Glassmusic, painterly prose brushes the page in sweeping greens and blues. Weaved throughout that lush 1920’s Norwegian landscape, is the heart of the narrative: A coming of age story in which young Ingrid struggles to come to terms with the sexual assault she witnessed against her sister, Kari.

Ingrid’s blind father, who relies on her to see for him, teachers her to play music on water-filled glasses. Those melodies, along with guiding her father, are what protect her from her secret and ground her through her tumultuous childhood. Her mother, who is jealous that her husband needs Ingrid more than her, looks away from her daughter in disappointment. And her sister, Kari, inflicts her with physical and emotional harm.

Ingrid seeks companionship, and quickly trusts Stefan, a Parisian boy visiting from France. It is this relationship, and their individual interpretations of faith and literature that spur Ingrid to become more aware of the world beyond her own microscopic one. Along with her newfound knowledge, she explores distant fjords, hills, and woods not only to escape the memory of her sister’s assault, but also to figure out who she is and who she wants to be. Is she a protector of secrets and lies or a teller of the truth? As she navigates her way toward awareness, slipping over rocky terrain along the way, she realizes that she needs her family, and that her family needs her. More so, as a reflective older child, she realizes she needs to tell the truth.

In Glassmusic, Snow creates palpable characters rich with universal emotions and conflict: anger, pity, empathy, loyalty, forgiveness, jealousy, and identity.

Ingrid’s father says, “Talking is like music, you must practice. (123).” Perhaps the same can be said for making sense of the unfathomable – it takes practice.

Rebecca Snow’s debut novel, Glassmusic, was released from Conundrum Press in November 2014. Her poetry has been published in Blue Moon, Pooled Ink, and was added to the Denver Poetry Map.  She won first place for narrative nonfiction in the 2007 Writers Studio Contest. Her piece was featured in Progenitor. Snow received her MFA in Creative Writing from the University of Montana and teaches English at the Community College of Aurora. Originally from Seattle, she lives in Denver, Colorado with her son and enjoys hiking the great Rocky Mountains.

Most of us avoid talking about death. The topic is not, well, the most pleasant one to address because, inevitably, it means a discussion about what happens before we breathe our last breath. Dying. That’s the part of the conversation where you say, “I hope I go in my sleep,” or “I hope it’s quick and painless.”

Since we can’t run away from dying or lock it up in a closet – sorry – I thought I’d share what Atul Gawande has to say about it in his latest book, Being Mortal. He takes an anxiety-producing topic and fearlessly broaches it through mind-boggling research and affecting stories. Though, I should warn you, the book is not emotionally easy to read. The stories come one after another: Alice’s frequent falls and car accident, Bella’s descent into blindness, Ruth’s stroke, Sarah’s lung cancer.

For much of history, death just happened. People literally dropped dead: you had a sore throat, and the next day you died. Our bodies didn’t “crumble” over time like they do now, thanks to advances in medical technology (28).  We have antibiotics, breathing machines, intravenous fluids, dialysis, chemotherapy. There is always one more drug, one more experimental therapy a physician can pull out of the medicine cabinet to keep you alive, even if it’s only for a few more weeks. Physicians, especially surgeons like Gawande, are trained to fix people. But, in doing so, are we causing more harm than good? Are we denying the aged, and terminally ill, sought after comfort?

But some people are willing to do anything – surgery, take pills – with the hope of maintaining independence, but, as Gawande says, “what do we do when it can no longer be sustained (23)?” Perhaps your parent has have lived on her own for the past fifty years, tending the garden, walking the dog, driving to the grocery store, and so on. But now, due to poor balance and a broken hip (FYI: about 350,00 Americans fall and break a hip every year), she can no longer engage in any of those activities. She can no longer safely cook her own meals or walk to the bathroom. She needs someone to be with her, 24/7. How do we keep the aging population safe while, at the same time, foster their independence? Who will be the one to care for our frail grandparents, parents, or spouses? These are just a few of the difficult questions that lack a single-dose answer.

Through interviews with patients, his dying father, other physicians, and proponents of institutional change, Gawande, and readers, learn that the “sustenance of the soul” is possible through imagination: community co-op living, mobile teams to check in on the elderly, and greenhouse living – long-term care facilities designed to look like a home (128). He debunks the myths of hospice – to do nothing and “let nature take its course (160).” If anything, hospice allows the aged and ill to live a bit longer in their own homes by fostering patient dignity and autonomy.

How all of this comes to fruition may not sound so simple, but Gawande guides us, with a cheat-sheet of questions to ask those who are dying:

1)   What do you understand about your illness, or prognosis?

2)   What are your fears? Goals?

3)   What do you care about?

4)   Given the circumstances, what trade-offs are you willing to make?

5)   If your health deteriorates, how would you like to spend your time, and whom do you want to make decisions for you?

Medicine is not only about repairing people’s hearts or fixing their broken bones.  It’s about maintaining an individual’s well being, emotionally and mentally. It’s about helping human beings live meaningfully by encouraging them to be the author’s of their own lives, up until the very last sentence.

Gawande, Atul. Being Mortal. New York: Metropolitan Books. 2014. Print.

Born ten weeks premature, Jesse Cooper suffered a brain hemorrhage, and survived – with cerebral palsy. In 2005, at age seventeen, he died.

During the course of my twenty-year career as a pediatric and neonatal intensive care nurse, I cared for thousands of babies and children, many who had cerebral palsy. I provided the best care possible – heeded their cries, exercised their rigid limbs, and carefully fed them pureed foods so they wouldn’t choke. But it was impossible for me to know what it was like to be a mother of a child with cerebral palsy, or any of the ill children I cared for.

But actress Marianne Leone knows. In her memoir, Jesse, Leone writes with stark prose, sharing with us her “mask of red rage,” and her “fuck-you double slather of red lipstick,” as she, and her actor-husband Chris Cooper, work tirelessly to navigate the hairpin turns of their lives caring for a child with cerebral palsy (185, 189). She lures us along in their trek, from Jesse’s endless days in the neonatal intensive care unit, through their frustrating odyssey in search of physical, occupational, and speech therapists who would treat Jesse with dignity, and their fevered commitment to convince the school system within their community to integrate Jesse into classes with what Leone calls “able-bodied” students. Leone reminds us that “Jessie wasn’t a CP kid first, and a kid second (57).”

Jesse is more than a mere telling of the speed bumps Leone and her family encountered along the way. It is a story of perseverance, and idiosyncratic family coping mechanisms in the face of Sisyphean challenges. It hurtles the reader into a better awareness of what it means to be a quadriplegic, and non-verbal – which does not equate with being an “idiot (31).” Leone’s memoir is a must-read for families, health care professionals, teachers – all of us – who are on a quest to do what is right for our children, whether or not they are disabled.

Jesse speaks to the human condition – in this case, internal conflict – and the human being in us: Even long after the death of her son, Leone admits she’d rather “stay inside and be alone (248).” But she also knows, in order to still feel connected with her son, she must reach out and talk to other mothers with “babies like Jesse (248).”

Jesse himself tugs at the human being in us. His humor, non-judgmental approach to others, and endurance – he was an honor roll student, and windsurfed and wrote poetry – impels us to take a long, hard look at ourselves and ask, “Who am I? Am I aware of what is happening around me? How do I treat others? How do I want to be treated? What meaningful contributions am I making to others? What if I were a quadriplegic and non-verbal?”

In an autobiography Jesse wrote in sixth grade, he says:

“The most important lesson I can teach/is to see people for what they can do/ and not for what they cannot do (82).”

I’ve been reading Patrimony by Philip Roth – a true story about his 86-year-old father, Herman, who is suffering from a brain tumor. But it reaches far beyond illness – the story is also about identity and the body as it relates to aging. It’s about a son’s growing understanding of a father who, as Roth says, possesses “stubborn discipline, the source of all my frustration.” It’s about the difficult decisions Roth must make concerning his father’s care, which lends universality, as most of us will face similar decisions on the behalf of our aging parents who likely will become steeped in illness. I know, this sounds terribly morbid, but at least, Roth’s story is poignant and honest.  He isn’t maudlin or over-sentimental. He tells it to us straight via mostly dialogue, which allows us to hear the idiosyncratic voices of father and son, their everyday exchanges that lure us into the most intimate aspects of their lives. Here’s a brief section from the book, where Roth shares with us his father’s wishes concerning his care. It underscores what we (at least for those of us over forty) fear most as we age – loss of independence:

He repeated to me, to everyone, that he didn’t want a biopsy or an operation through the back of his head or the roof of his mouth – all he wanted was what he had wanted from the start: to be able to see his food and to read his paper and, as he put it, to navigate on his own.

Believe me, if your read this book, and I hope you do, you will likely find moments when you need to put it down and take a deep breath. But there are also moments when you will laugh – I promise.

Enjoy!