As a writer, the hardest part for me is getting the words on the page, meaning this: my brain manages to arrange precisely what it is I want to write, but once I sit my butt in the chair, and face the screen, my brain slams its door shut. If only I had the key to that door, quick access to the words so beautifully aligned in my head. But, alas, I do not have such a key. Instead, I keep at it, and sometimes find myself sitting in front of the computer for an hour before coming up with a sentence I’m half-willing to share with the world.

Herein lies the problem: I fret way too much over every single word I write. I worry too much about what others will think of me and my writing once they read my work. Sure, there are days when my fingers dance a smooth Rumba across the keyboard, but those days are few and far between. What do I do about this? While it would be nice if I did have a key for the times my brain locks me out, I might lose it. Then what? What I need to do is build my own door, open it up all the way, and invite into my writing home whatever comes my way. What I need to do is loosen up a little more, to be a little more brave, a little more willing to do a Rumba.

If I’ve learned from anyone what it takes to do the narrative dance with abandon, it’s my brother-in-law Chris. Though he’s not a writer, he does know how to let go and be himself. What I admire the most about him is his so-what? attitude. He doesn’t empty his mental gas tank worrying about what others might think of him when he shares what he needs to share in the moment. In other words, he is as authentic as authentic gets. As long as I’ve known him (15 years), he has spoken his emotional truth, and has blown me away with how easily and calmly he speaks about all things real and human without censorship or self-judgement.

Because Chris is a self-described non-writer, and usually prefers to engage in live discussions with people, rather than texting, emailing, or sending letters, I was shocked and delighted when he texted his siblings and other close family a brief synopsis of his experience during his recent road-trip from Vermont to Florida. (For context: Chris was his mother’s caregiver for nearly two years, the reason why he did not hike the Appalachian Trail. She lived at OLP for a year, and passed away on November 21, 2018)

Let me write this down and share it, as time has a way of at least dulling my memories. On my adventure to Florida, I stopped at Johnson City, Tennessee. The next morning, I left and started south on Interstate 26. It’s difficult to describe on paper the majestic vistas I witnessed. The sheer power of the mountains as I traveled through the Smokies, Cherokee National Park, and the Appalachia Trail. I could not help have thoughts of regretting my decision in 2016 to not hike the AT. All the things I could have seen and experienced danced through my head. Daydreaming was definitely prevalent, but reality set in and navigating Atlanta was on my mind. South of Atlanta my mind once again drifted, but this time it was filled with visions of Mom. I will only try to describe one of the many that popped into my mind that afternoon. I am sitting with Mom – the place could be in Florida or OLP (Our Lady of Providence Residential Care Facility). Mom is eating a cookie, or could be candy, or ice-cream, that part doesn’t matter. I am cooking Mom some fish and a veggie. I mention to Mom to save room for dinner as she takes another bite of her goody of the day. Mom looks at me and tells me that she’s not hungry. I say nothing as she looks at me, daring me to contradict her. When I say nothing, she goes back to what she was doing, but I can’t help seeing an impish little smile that tells me she has won again, and is still in control. That night, as I fell asleep, my only thought was that I have no regrets. Majestic Mom and the real memories outweigh the majestic mountains and the wannabe memories. This will the last time I write something like this.

During a recent family gathering, I asked Chris what he meant by the last sentence in his text. To be honest, I was afraid of what he might say. You see, Chris has stage 4 lung cancer, and anytime he mentions the word “last” my overthinking brain raises its worry flag.

When he gave me a long goggle-eyed stare, I wanted to curl up and crawl inside myself.

Then he said, “Because it took me all day to write it. It was mentally exhausting.”

He smiled (thank goodness), which gave me permission to smile too, and we both nodded in agreement at one another.

But here’s the pearl of wisdom Chris so kindly offered, and which I quickly hung on a sturdy hook in my brain: “I wanted to write something during my trip,” he said, “but my head wasn’t in the mental space. Yesterday it was, so that’s when I wrote it.”

Because I’m a writer, I think I should write every day, seven days a week. But there are days when my “mental space” is closed, maybe because it’s out of town for a long-weekend, or it’s come down with a bad cold and needs a day or two on the couch, or maybe it simply needs a timeout. I think I just might do that: take a timeout the next time I’m sitting at the computer, and my brain slams its door on me. Yes, I think I will do that. And not regret it.

Chris’s cancer diagnosis has smacked him in the face with his own mortality, and it doesn’t take much to physically and mentally wear him down these days, but I know he has plenty of pearls left. And I can’t wait to open up his next serving of oysters.

Since November is National Alzheimer’s Disease Awareness and Family Caregivers Month, I thought I would take the opportunity to thank the more than fifteen million Alzheimer’s and dementia caregivers in the United States for their hard work. You are to be admired, and applauded.

More than forty million people worldwide have Alzheimer’s disease. Included in that number is my father, and perhaps your own parent, grandparent, spouse, or best friend. Because I often feel helpless when I visit my father in the nursing home as I listen to him stutter my name, and watch his hand shake as he tries to lift a scoopful of ice cream to his mouth or turn the page of the newspaper, I must reach out to you. I reach out with the ice-cold truth about this insidious disease that pisses me the fuck off, and makes me want to punch the protein out of its plaques and tangles. (I’m not a violent person at all, really. But watching a loved one slowly fade into the dark more than sucks.)

Now that I’ve purged from my gut how I really feel, I’d like to share with you what Dr. Samuel Cohen, a Research Fellow at the Centre for Misfolding Diseases in the Department of Chemistry at the University of Cambridge, has to say in a video about Alzheimer’s:

By 2050, Alzheimer’s will affect one hundred fifty million people.

If you plan to live into your golden years, your chance of developing Alzheimer’s will approach one in two.

Alzheimer’s is the most expensive disease in the United States, costing two hundred billion dollars each year.

Out of the top ten causes of death worldwide, Alzheimer’s is the only one that cannot be prevented, cured, or slowed down.

The US government spends ten times more on cancer research than on Alzheimer’s.

People with Alzheimer’s can’t always speak out for themselves.

Alzheimer’s is always fatal.

Alzheimer’s is not a normal part of the aging process.

If you have a brain, you are at risk for Alzheimer’s.

We now know that the plaques and tangles clogging the Alzheimer’s brain consist of protein molecules.

We can cure Alzheimer’s.

To hear Dr. Cohen’s TED Talk about Alzheimer’s and the new class of drugs being tested to stop the disease, please click here.

I’m over-the-moon excited to announce that my essay, “Reaching for the Keys,” has been published in Saranac Review  It’s about my emotional struggle to take the car keys away from my father, who was diagnosed with Alzheimer’s disease in 2012. I spent a year and a half working on it – typing, deleting, reflecting, pacing, tearing up drafts and starting over, pulling my hair out, waking up in the night to scratch down notes. Why all the fretting? Though any piece of creative work takes time to craft into a piece of salient art, writing this essay challenged me more than most other essays I have written. How so? While I know I made the right choice by taking the keys away from my father, the act of writing the essay brought me uncomfortably close to particular emotions and a long list of complexities that speak to the human condition (at it’s core, what this essay is really about): fear, anger, remorse, guilt, truth, loyalty, mortality, illness, aging, independence. I suppose that’s partly what creative writing should do – push us a little too close to the edge of the metaphorical embankment.

There’s also an ironic element to the piece, but I don’t want to give too much away here (apologies for the teaser). To quench your curiosity, relieve your hunger, I encourage you to read the essay. The Journal is available for purchase at: Saranac Review.

The Saranac Review was born in 2004 out of four writers’ vision to open a space for the celebration of many voices including those from Canada. Attempting to act as a source of connection, the journal publishes the work of emerging and established writers from both countries. As our mission states, “The Saranac Review is committed to dissolving boundaries of all kinds, seeking to publish a diverse array of emerging and established writers from Canada and the United States. The Saranac Review aims to be a textual clearing in which a space is opened for cross-pollination between American and Canadian writers. In that way, we aim to be a textual river reflecting diverse voices, a literal “cluster of stars,” an illumination of the Iroquois roots of our namesake, the word, Saranac. We believe in a vision of shared governance, of connection, and in the power of art.

~ Saranac Review

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.