If, like me, you're rather east-coast oriented, you would be surprised at how many north-south hours you can drive in California without crossing the state line. Even outside of Los Angeles rush hour, the southland continues for quite a while through beach towns, industry, and military land till you hit San Diego and, quickly after, the Mexican border. Meanwhile, your twin in Eastern time could tour all the New England states and maybe even hike Mt. Monadnock round-trip while you push 85 from San Francisco to Oregon, ignoring the celebrated and twisty path of Coastal Highway 1 that wends through eucalyptus and redwood forests and ocean views.
Years ago, when my band got to California on the west coast leg of our national tour, we took the fast farmland-country Interstate 5 from LA to SF and beyond. Kerouac not withstanding, when you're traveling with others in a van for months on end, sometimes you just want to get there, and we always had a solid schedule to keep. Pacific Coast Highway 1, though, is the pretty one. You don't take it when you're in a hurry to get somewhere; you take it to gape wide-eyed at the beauty and imagine a different life. Darby and I have driven the PCH from Los Angeles north to Big Sur on the central coast many times, stopping for a complimentary (Darby composed music for their films) tour of the magnificent Hearst Castle, goggling the blubbery elephant seals piled up and jousting on the sand, and, finally, twisting through Big Sur's craggy beauty on our way to our favoriteglamping spot, TreeBones, perched high above the surf.
This year, Big Sur is inaccessible from the south due to last winter's giant landslide over Highway 1. Sadly, it may be a few years before we again pitch our tent at TreeBones, browse the shelves at the Henry Miller Library, soak in Esalen's hot tubs, stuff ourselves on too much Big Sur Bakery bread, hike to the Tin House, and hunt through shells for jade. However, last week Darby and I had good reason for our first road trip far north of Big Sur: our friends' wedding in Davis put us already five hours north of LA. We decided to extend our trip and experience a new slice of the Golden State: Mendocino and Marin counties.
With Al Franken's new book, Giant of the Senate, on audio, after the wedding we swung north up I-5 and then northwest on Route 20, motoring alongside Clear Lake (at 68 square miles, the largest freshwater lake wholly in the state) and through Jackson State Forest until we hit the coast. Then we scooted up a little along the northern slip of Coast Highway 1, and spent five days hiking, beachcombing, and eating a lot of cheese, as we made our way back south. We stayed at two Airbnbs along the way -- the first in Elk, just south of Mendocino, and the second in Bolinas, a quirky little town in Marin County with one bar, two restaurants, and no road signs pointing the way for travelers. Though we knew that the residents of the unincorporated community notoriously take down Bolinas road signs until the county finally stopped putting them up, we still fell for it and overshot the town by about 20 minutes.
Our friends' wedding coincided with our own second wedding anniversary, but life has been busy lately, so most of our plans were made last minute, finger-on-the-map style, asking each other only a week earlier, "Where can we stay?" and "Want to go here, doll?" However, there was one place we knew months ago that we would visit: Glass Beach in Fort Bragg.
Nearly eight years ago, when Darby and I were still fairly new to each other, we drove "over the hill" for an afternoon stroll along a quiet beach near the intersection of our local stretch of the Pacific Coast Highway and the coastal tail of Topanga, one of the famous Los Angeles winding canyon roads. We slurped hot lemongrass soup at the Thai restaurant across the street, and then noticed the golden light of the nearly setting sun. After our soup, we froggered across four lanes of the PCH to the beach on the other side. It was probably a Sunday: Sunday was our day. A heart-shaped aluminum balloon floated above one of the restaurant tables, which I remember seeing and realizing that Valentine's Day was nigh.
As we walked and talked along the water's edge, the sinking sun rouged our faces, and I scanned the sand for seaglass. Having spent more of my lifetime on lakes than seas, I have always particularly appreciated the subtle, cloudy beauty of those glass gems. Rarity is perhaps why I love it ("lake glass" doesn't have quite the allure). But though not the rarest, of all seaglass colors, I most love blue. However, I care not for any color - even blue - that is merely factory-tumbled and sold by the bagful. Like dilapidated barns with tree branches stretching from the inside out, I am fascinated by the unintentional collaborative effort between man and nature that renders these jeweled treasures from former trash. Seaglass, found and picked from among seaweed and shells, is worthless and priceless all the same.
That afternoon, as the sun slid further toward the cliffs ahead and my hand remained empty of seaglass, I mentioned to Darby how I loved the stuff, and that blue was my favorite. "But you never find it," I added, because it's true: you never do. Nowadays, glass-bottled beverages tend to come in brown, green, or clear. That old light blue apothecary glass is just not used enough to end up back in the sea, breaking apart and tumbling smooth for new lovers combing the beach on a random Sunday, even on the cusp of Valentine's Day. A moment later, Darby plucked something out of the sand and placed it in my palm. "Sometimes you just need to say aloud what it is you're looking for."
Since then, seaglass, and especially blue seaglass, has come to represent to us both the essential importance of being consciously aware of what we are looking for in this life. It is not enough to complain about a lack or to vaguely desire some unacknowledged change. As individuals and as partners, we have to communicate to ourselves and to each other what it is we are looking for. Frequently, whatever it is is simply there at our feet, waiting for our eyes to notice.
Glass Beach, we read in an article years ago, is thick with naturally tumbled glass from the confluence of ocean currents, rocky coast, and last century's practices of dumping trash into the sea. In the pre-plastic era, much of that trash was glass that broke and tumbled in the waves. We hear that visitors could once take big pieces home by the bucketful, but everyone tells us, "It's not like that now." I'd love to tell you about the whole trip, but I'll end this letter here:
Remembering Duke Ellington taking the train, Joni Mitchell and her ladies of the canyon, Kerouac and Cassady on the road, people always say the heyday is long past. It's hard to see the heyday when you're in it, I suppose. Yet, as musicians and writers, Darby and I have lived our whole lives hearing the pessimistic stories of naysayers who say the best days for [fill in the blank] are gone. I call it hogwash. The best moments go up in smoke when you let others douse your fire, whether you're burning for travel, career change, taking a chance on your art, or falling in love. Half the time, though, you've just got to get clear and say what it is you want in this life, write it down boldly, and speak it aloud to another. And then you've got to go to Glass Beach, metaphorically speaking or otherwise, because it's bound to be more abundant in seaglass than anything you've ever seen.
We had a hunch it would be a wonder to behold.
Glass Beach, Fort Bragg, CA (photo credit: Darby Orr)
Mendocino, CA at sunset (photo credit: Arielle Silver)
“If we were not so single-minded
about keeping our lives moving,
and for once could do nothing,
perhaps a huge silence
might interrupt this sadness
of never understanding ourselves
and of threatening ourselves with death.
Perhaps the earth can teach us
as when everything seems dead
and later proves to be alive.”
- Pablo Neruda
When I was young, I loathed chatter about the weather. The familiar go-to small talk that adults leaned on to side-step deeper matters struck me as a grave sin against the limited, mortal moments we each had. Instead of baring their hearts or asking about another's, they hid behind the first, most obvious of superficial topics. Instead of embarking on inquiry and wonder, they stated what we all knew already. It's raining out. Or what we all could readily learn by checking the forecast. It's going to rain later. I felt that to save my very soul, I must not grow to become one of the shut-down adults who merely spoke of rain when it rained, or sun when it shined, or cold when the wind blew bitter gusts in promise of winter. Weather, like daily gastro-intestinal (dis)comfort, assumptions about the gender of a person's love, and questions like What do you do? was a social agreement I hoped to never contract.
I have violated most of my youthful edicts. Everything I once knew of myself, I have come to reknow as its opposite. Nearly every rule I have laid, I have violated, some with regret, many with ears pulled back like my cat as she follows a flight of doves, quite a few with wide-armed embrace like the dissolution of my first marriage, which opened me to (from where I sit) the greatest love story of all time.
But there came a time when my view of the sky shifted. Though some do call in clouds to skirt their own discomfort in conversation, instead of thinking of it as a nonsense conversation that need not be had, I now recognize weather as perhaps the most unifying of all human experiences, the most satisfactory understanding that we are here together on this spot on this planet under these clouds. I ask Darby about it in the morning, because I know that he reads the reports and watches the forecast for statistical chances of Los Angeles rain. I write about it all the time. In my songs, my stories, my journal.
When I peel myself away from my merry-go-round thoughts, the ones that circle the same topics over and over, the ones that measure my speed and set up goals, as if they weren't just spinning around the same pole (some attractive go-go dancer these thoughts are); when I let myself enter the world, the one outside my skin, feel it, listen; when I search the horizon and my memory of paints to find the name of the hue that might capture the slanted sun or folding dark; when I let my imagination find shapes in the clouds; when I pinpoint the word to describe the scent of the air, ah, yes, briny; when I seek out stars and stand to watch if one might, instead, be the space station; I find myself some many minutes later emerging from my reverie with the realization that the weather and the world has transported me beyond movement, into a deeper experience of being human.
The weather takes me to stillness, to presence. Weather, and the senses we employ to observe it, brings me to my senses, in more ways than one, and triggers truth. A pound of truth is worth more than its weight in gold. The heart weighs it: Is it pyrite or the true north truth? Truth's weight compounds as I learn to trust my heart's guidance.
I stay still under the weather till I know something about this living thing. Do our souls continue on after our bodies find their final stillness, as the Rabbi said at my Auntie Dish's funeral nearly three weeks ago in a chilled chapel in New York on a day when the sky made the grave site where my great-grandfather, Papa, and my great-grandmother, Mama, welcomed to their muddy bed their daughter, and my forehead glistened wet as my cheeks? Do we carry this experience of connection with the world into the next phase, beyond? Did my great love story with Darby begin eons ago, before we met on this plane on July 4 afternoon in 2009 in Los Angeles? Will it continue when our organic bodies nourish the soil for others?
When I come back to myself, I am more human, more alive. I might look across the way and see someone with chin tilted to the sky. I don't know if she is under the weather, but I know the weather under which she stands. It is immortal as Zeus, and she and I and you are as blessedly mortal as doves.
Thank for you sharing this planet with me, and for being here.
"I have only to break into the tightness of a strawberry, and I see summer – its dust and lowering skies." - Toni Morrison, The Bluest Eye
July has gone too fast, but isn't it human to eke out just a little more before the last grains of sand fall? A third of July I spent in the northeast, teaching a week of songwriting in Allentown, PA for the International Women's Writing Guild's annual conference at Muhlenberg College, and then visiting friends in White Meadow Lake, NJ, a place where as a child I once lived. When I think now about the conference and weekend after with old friends, I remember stories and clouds. There was a slice, though, of three hours, west of both Allentown and White Meadow Lake, that comes to me mostly as water.
It was raining, harder than a drizzle, lighter than a storm, when I parked on the soft shoulder in front of my aunt's house, not far off Route 80. Having packed in ever-sunny Los Angeles a week earlier, I didn't think to bring a rain jacket or hat. My uncle, who sat beyond the porch overhang, who's lived all his life (as far as I know) in the PA clime, didn't have one either. I don't remember us saying much, and we didn't mention the weather.
The other water: My uncle made some coffee, I stirred in sugar; I dabbed at my eyes with a tissue from the coffee table at the foot of the yellow couch where I sat with my Auntie Dish, in an art-filled room I vaguely recalled from my childhood; my aunt dabbed at her nose, where the tube of moist oxygen made it feel, she told me, like her nose is always running. It's lung, she said, because I thought it was stomach, which she did have once, along with breast, thyroid, and colon. "The only kind nonsmokers get," she said, without bitterness. I asked her how she felt, thinking both of her, on the edge of something I'm trying to understand, and of my grandmother, who is my aunt's twin, who will be left behind.
If learning is a thing we do in school, I never learned to read. I emerged from the womb with a book in hand, like it was a road map to figuring out this life. In the back seat of the Volvo, my head bent to cloth-covered Bedknobs and Broomsticks and A Wrinkle in Time, left over from my mother's childhood, and cornflower blue hardbacks of The Bobbsey Twins. When I was six, we moved in with my Grandma Roro and grandpa in the duplex where my mother had been raised with her two sisters and, on the upstairs side, her three cousins, children of Dish and my rain-immune uncle. The two families propped open the door between homes so the six kids had free reign, like the Bobbsey Twins on steroids.
The next year we moved to White Meadow Lake, into what I have recently learned Californians like to call a "cabin." (As far as I can tell, a "cabin," by Los Angeles terms, is a regular house with amenities like a garage door and an attic, but situated on a mountain. Since White Meadow Lake is located in New Jersey, we called it a "house.") I would fall asleep in my upstairs corner bedroom, pretending that I was a twin and my other slept a mattress away. Though I didn't have my own real twin, I took some solace in the rumor that non-identical twins run in families. None of my friends could tell them apart, but everyone in the family knew that Roro and Dish were sororal twins, with nearly identical strawberry blonde hairdos. Maybe what I didn't have, my future children would. Meanwhile, I would play both parts: I would be beautiful like Roro (I was loyal to grandma) and smart like Dish (I'd heard Dish sat for my grandma's math exams in school).
Grandma Roro and Auntie Dish were tall, with narrow waists and pleated pants. Each raised three children, though Dish had a boy. My mother was the first of that new generation, and when I came along, Roro and Dish were still young at forty-four, nearly the age I am now. They would sun themselves in the summertime wearing glamorous bathing suits, and I danced around swinging their vintage umbrellas, singing Singin' in the Rain.
As I sat on the couch with my aunt, I asked her about a framed photo on the coffee table from around that time, a black and white of her and my uncle side by side, a bottle of champagne chilling in a bucket on the table. The oxygen tank hushed softly in the background, the rain fell forgotten outside. She told me they were on a Paris dinner cruise along the Seine, celebrating their twenty-fifth anniversary, and pointed to a painting on the wall behind the couch that they bought right from the painter on that same trip. "The paint wasn't even dry," my uncle said from his corner of the room.
In case you've got a picture in your mind of Dish as an old lady half-unhinged and dying, I can do better. Dish is a great-grandma now. I started calling her earlier this spring, because I'd heard she didn't have much time left, and I'd realized how much had gone by. I didn't know her as an adult, only as I had known her when I was a child, and I wanted to. So I called, and we talked about the other generations, my cousins and their children. Dish made no distinction between her step- and biological great grandchildren, which warmed my heart. It's not that she didn't know the difference, but that she didn't care. Like how I feel about my kids, my step-daughters, they were hers either way.
On one wall, I saw a photo of her and Roro when they were near five, which made me think of her mother, my great-grandmother, whom I loved, and who died when I was in twelfth grade. Were they close, I asked. Yes, she said, but paused. "You know what I wish," she said. "I didn't like that she was a racist. It made us all uncomfortable. She'd say shvartze, and not in a good way."
We stayed for three hours on the couch, me asking questions as best I could, her answering as best she could. I wondered if there is any way for me, in this vibrant moment of my life, to fathom the way time crawls at the end. I thought of mothers-to-be, in the last weeks of their pregnancy, wishing the baby would just come already. Is it that way at the end, too? The bookends of life, slow, between which we love and fight and worry about bank accounts and career choices, and try to make some meaning out of the arbitrary event of our being? When we are born, we survive from mother's milk, and spend the rest of our living days eating from Mother Earth. Maybe at the end it's just waiting, waiting, waiting to go back home.
Before I left, I asked how she felt. I meant body, but also heart and mind. She told me she's ready to go, not in pain at all, but ready. However, she's concerned that Roro hasn't yet accepted that her lifelong companion will be leaving first. In my twin fantasies, it had never occurred to me that, as at birth, one always passes through the barrier first.
A few days after I saw Dish, I heard that she'd stopped eating. That was two weeks ago. Her body no longer needs to sustain. Soon, Mother Earth will feed off her. I hear the hospice nurse rearranged the living room, and Dish has a bed there now, and a rotating watch, made of her daughters, Roro and my grandpa, my mother's sister, and my rain-immune uncle. They recently did a genes test and found that all these 87 years everyone was wrong: Roro and Dish, it turns out, are identical. Makes sense, since identicals don't run in families, and they're the only twins on that tree branch so far.
I've been trying to figure out if I should go back for the funeral, whenever it happens. I think of Roro, and want to comfort her. But I think, too, of my daily plans here. Of the syllabus I need to write; of the long and expensive airline flight back east; of my meager days off from work, already in the red, and of the David Wilcox songwriting retreat a few weekends from now; of the work I like to do and want to do, because it gives my life meaning between, as Joni Mitchell says, the forceps and the stone.
By the time we hugged good-bye, because Dish and my uncle had a doctor's appointment and I was heading to White Meadow Lake to reconnect with old friends, tears had choked my throat too tight for me to say anything. If I could have, I would have said Thank you and I love you. I think she knows that.
Of course it was pouring, too, because that's the way the east coast does weather: When you are saying good-bye to your great aunt for the last time, the clouds don't hold back. I closed myself in the rental car and let myself sob, and when I could see through my tears, I turned on my wipers and pulled onto Route 80 heading east.
In her last letter to me, my doctor wrote that everything was "essentially" okay, and no need to call. I took her at her word, strangely phrased though it was.
When, mid-year, I had some ache -- I forget now what -- and emailed to ask if I should come in, she assured me that, no, no, I didn't need to see her. She was right, I didn't, and I had other things to do. The trouble, whatever it might have been, healed and was forgotten soon enough.
But early afternoon today, when checking the time for today's annual wellness exam, I realized that I'd jotted it down as 1:40 in my online calendar and 2 in my notebook. I logged into my account to double-check before heading out, then called the office directly when I saw no appointment noted. "The doctor's gone home, looks like she just canceled," the office manager said, sounding a little surprised to learn these facts after me.
Um, I'm getting a middle school feel. Is this ghosting? Is my doctor breaking up with me? Was the ACA repealed? Hello, Russia, can you hear me?
Brief notes on recent books I've read.
Harley and Me, former LA Times book critic Bernadette Murphy's memoir about becoming a motorcyclist, is a story of midlife transformation. Laden with neuroscience research and self-exploration, Murphy, mother of three on the brink of divorce, muses about identity and what it means, as she nears 50 and her father comes to the end of his life, to embrace living. With candid, straight-forward prose that chronicles her spiritual and sexual awakening from the seat of her Harley, this is a book of, ultimately, celebration and inspiration. It comes out in paperback this month, but the hardcover is already out.
I can't close this section without telling you about Dani Shapiro's wonderful new memoir, Hourglass, a delicate, probing inquiry into time, memory, and marriage. I do so love her work.
Notes from No Man's Land, by Eula Biss, and Blindness, by José Saramago (translated by Giovanni Pontiero): Both brilliant, both harrowing, I've been toggling between the two for the past week. If we read, at least in part, to better understand ourselves and human nature, the Biss, a collection of essays primarily concerned with America's relationship with race (Graywolf Press, 2009), and the Saramago, a novel about an almost-Ebola-like epidemic of blindness (Harcourt Brace, 1998), both seek to illuminate dark corners of the human psyche. Biss's opening essay is disquieting in its link between the invention of the telephone and the rise of lynching; Saramago's novel is chilling in its parable-examination of fear and society. But Andrew Miller's New York Times review of Blindness could be applied to both books: "There is no cynicism and there are no conclusions, just a clear-eyed and compassionate acknowledgment of things as they are, a quality that can only honestly be termed wisdom. We should be grateful when it is handed to us in such generous measures."
Lately I've been reading the magnificent H is for Hawk by Helen MacDonald. The NY Times writes, "In her breathtaking new book, “H Is for Hawk,” winner of the Samuel Johnson Prize and the Costa Book Award, Helen Macdonald renders an indelible impression of a raptor’s fierce essence — and her own — with words that mimic feathers, so impossibly pretty we don’t notice their astonishing engineering." And here is what my friend, author Barbara Morrison, says: "She lays bare her emotional journey in language that is achingly precise with moments of grace that left me breathless. In a rare consensus, my book club all thought it a remarkable, if harrowing, story."
If you haven't already, do read some Abigail Thomas. Her latest is What Comes Next and How to Like It, which is impossible to really sum up, but you will love it. It's about love, her children, drinking, her best friend, mortality, time.... Oh, how you will love it. You'll love Safekeeping too. So will all the people on your gift list. Just sayin...
Tap tapping at our laptops in tandem, Darby and I are having a quiet Sunday afternoon in the backyard, working separately on our books and getting pummeled with mulberries. Every year, I've stared up at this tree, wondering how it is that the squirrels always snatch the berries before me. The leafy canopy shades half the yard. Above us, the sturdy branch that the kidlets, when they were little, swung from on a tilted plank of wood that we strung up the first summer with chains. We got married under this tree on a hot September afternoon, Darby in a linen suit, me with my hair tamed back, the flies all drowned in honey on the cheese and crackers table. We've had picnics under this tree, a ratty old quilt spread with strawberries, lotus root, seaweed salad, and fresh bread from the farmer's market. We've had dinners with the kids, mac and cheese, kale chips, salad, on a white tablecloth with wine glasses filled (for them) with sparkling water. Oh, we've had many pies under this tree - never mulberry, but four-berry, strawberry, apple, blackberry basil, peach raspberry.
It's a brief season for mulberries, and I never catch them in time. Each year around mid-April, I first notice the sidewalk splatted purple as I go for my lunch time runs on the other side of town. In our evening walks, Darby and I stand for long minutes alongside the road staining our fingers with the most delicious bruise, eating our fill. But did you know - mulberries can be white, too? Turns out, the berries in our tree never darken. No wonder I've always missed the season. These berries ripen and fall -- as they are doing on our heads and laptops today -- paler than spring green, softer than Darby's linen suit, plump and ready to eat. They're not as sweet as the dark ones, more austere somehow, if that's a flavor. But I'm overjoyed to realize that we're in season, and the squirrels haven't beaten me to the loot, and that if ever Darby kicks me out of the house, albeit there's a very small season, I might survive on the berries and rosemary sprigs.
News on this end is that I've stopped sending my book to agents. Of course I'm impatient to publish it and to have some of you read it. Yet, I've not been able to put my finger on why, but I've wondered if, perhaps, something is missing in the narrative. A few weeks ago, I stumbled upon an idea. I can't tell you what it is, of course, but I've stopped sending out letters and started to explore this new thread. It's fully possible that, as Darby says, I'm driving past the money, but since I have all the previous versions it seems a fairly safe venture. And if this doesn't work, no hard in having a bunch of extra material, right?
However, I do have a short piece just published last week by Lewis University's Jet Fuel Review. Here's a direct link to my piece, Cliff Side, and here's a link to the whole Spring 2017 issue. As former editor of Lunch Ticket, I'm a nut for different formats and love this - you can download the whole issue as an ebook, too. Here's a sneak peek at my piece, and I hope you'll click on over and read the whole thing:
Echoed against the cliff walls of the ragged coastline, the bark of two elephant seals. Aaark, one calls, then moans like the creak of old redwood. Even through closed lids: the periwinkle grey of dawn. I open my eyes at the fifth cheer-up-up from a nameless bird in dialogue with its mate. A moment later, my husband opens his. We stare wide-eyed across the pillows. We traveled nine hours to perch on this cliff far from the segmented lives that fracture us, and spoke of nothing timely but the shortening blue shadows and play of sun along the grizzled backs of the golden central coast hills. Now, in the briny blue morning, we shove away the flannel sleeping bag and crawl out of the tent zipping our jeans. I balance on a weathered log; he stands on a rock. We survey the morning palette: sky against sea, dusty rose and slate grey, echoes of elephant seals and the crash of waves.
I recently stumbled upon a Nietzsche passage that includes this quote: “Let the young soul survey its own life with a view of the following question: ‘What have you truly loved thus far? What has ever uplifted your soul, what has dominated and delighted it at the same time?” This is the spirit behind our Create & Flow one-day retreat in Los Angeles on Sunday, May 21. It's just a few weeks away, and there're still spots open. Just added - we'll be joined in the evening for a house concert songwriters-in-the-round with special guests, platinum songwriter, Kevin Fisher, and Journey of a Song author, Warren Sellars. Of course, I'll be part of the round, too, playing some new songs and some old. Yoga practitioners of all levels and creative spirits of all kinds are welcome. Registration is $185 and includes a light breakfast, lunch, and afternoon pie. Email firstname.lastname@example.org to register.
Type 1 Diabetes is an autoimmune disease, genetically associated with other diseases in that category (e.g. rheumatoid arthritis, lupus, etc.), and renders an individual insulin-dependent. The pancreas, which otherwise works fine, stops producing beta cells that store and release insulin, a hormone which breaks down sugar from any kind of carbohydrate, whether simple or complex, and allows the body to use it for energy.
In the early months of 2015, as some of you know, our little one quickly got frightening skinny, was listless, insatiably thirsty, got up every two hours at night to use the bathroom. She was skinny because her body was starving and consuming all her body fat -- it couldn't process the sugar from food and use it for energy. She was listless because the brain depends on energy from sugar to properly function. She was thirsty because her blood sugar was way too high, and her body was trying to flush out the toxins. She had to pee, because she was drinking too much water. She couldn't sleep because she was in 5th grade and concerned she'd wet the bed.
Her diagnosis, done easily with her pediatrician's prick of the finger to test her blood sugar levels, kicked off a full day of tests and T1D education for her and her four parents at Los Angeles Children's Hospital. She was pale, weak, frightened, and henceforth, until transitioning to an insulin pump later that autumn, on a every-three-hours glucose testing regimen (day and night) and 7-10 insulin shots a day.
In equipment terms, that's 7-10 syringes daily, two types of insulin in two different vials plus backup in the event of emergency (e.g. earthquakes), 8-16 testing strips daily, alcohol swabs, a glucose testing monitor, many doctor visits, glucagon and an emergency kit in case she passes out from low blood sugar and can't ingest juice or another simple sugar by mouth. Since that autumn, she no longer needs regular shots because now she has a catheter with an inset stuck to alternating hips, changed every three days. The inset connects directly to a pump that looks like a pink pager hooked to the waistband of her clothes. Since the insulin is a constant drip, she doesn't need shots anymore in the arm or thighs, but we still have the back-up syringes in case the battery-operated pump fails.
None of this addresses the depression that she entered the day she was diagnosed and didn't come out of for most of the year. Nor does it take into account the missed school days, because she was exhausted from bouncing blood sugar levels as the doctors tried to find the right ratios, and the public schools in our town, due to tight budgets, all share a nurse, who was only at her school periodically, and our girl was frightened that no knowledgeable adult was there to consistently help in case she needed it. It doesn't address the fact that she *did* need it, and so frequently just stayed home, and now, though money is tighter, goes to a Waldorf school with a class size less than a third of her public class, even with combined grades. It doesn't address how, for most of that first year, she didn't know how to eat because food was both necessary and a poison to her body. It doesn't address the mindless waiter who, just last week, brought her a regular Coke instead of diet, which shot her blood sugar sky high.
And it doesn't address the lifetime of medical care and equipment that she will need just to manage this disease, to keep her healthy as she is right now, due to medical research, technology advances, JDRF advocacy and education, and Dr. Fisher and her incredible team at Children's Hospital Los Angeles.
But, it does address the recent House vote to repeal and replace Obamacare with a system that does not protect those with previously diagnosed conditions, like T1D.
If you know someone with T1D --- for example, our girl, now 13, --- consider sending this letter, which asks Congress to Consider Type 1 Diabetes Patients when the Senate looks to Reform the American Healthcare System.
Feel free to use any of our story as part of your letter.
You never know if something you create will resonate with another in this world, but it's not our job as artists to worry so much about that. Our job is to just create the damn things. We do it as well as we can. After crossing out words and rearranging sentences, after speaking them aloud and finding the rhythm and the soul, we hope we're communicating something worthwhile. And at some point we send the thing out into the world and hope that our intuition is right: That the thing we made is a thing to be loved.
It's been a little while since I've had some publishing news to share. I'm pleased to report that a flash essay ("The Sleeping Porch") will be published in the next issue of Under the Gum Tree and what originally started as a haibun and turned into what you might call a 4-part prose poem or 4-part flash essay ("Cliff Side") will be published next month in Jet Fuel Review. I love both of these pieces - I read bits of both of them between songs at last week's David Harvey Presents event - and am thrilled that the editors of these wonderful journals love them too. I'm so grateful for those champions who create platforms and shepherd creative work to larger audiences.
Not to get too greedy, there's another piece, a completely weird one, that I hope some journal snatches up. And there's a big handful of songs that are begging to be heard. But I'm reminding myself: Right now it's not my job to worry. My job is to create more, to polish them, to find their rhythm and soul, to communicate something that might resonate with others, and to give them wings to fly.
There are times we want to cower on the couch and hide the thing we created for a little longer. I can make up a hundred reasons why I should read someone else's book instead of answer the call of my own. In fact, I did that last night. But, I suppose I should've picked something longer than "300 Arguments." I finished reading Sarah Manguso's latest and the deadline for the NEA grant had still not passed.
So: Despite there being a hell-bound snowball's chance that I will get this, I'd rather say at least I tried. And now I have a little bit of experience, so in two years when the NEA writers fellowship grant for prose comes back around, it'll be old hat and I'll have the right version of Adobe Reader.
Just announced! Darby Orr (composer, writer, yoga teacher, dashing and charming husband extraordinaire) and I are heading up to the Santa Monica Mountains for a one-day retreat-from-the-world. Come join us! Morning yoga, creative flow workshops, nourishing lunch by Love Them Apples (yours truly), and an end-of-day pie to top it off.
Yet another ad for another t-shirt with another feminist or empowerment statement has popped up in my newsfeed, and again I find myself considering buying it. I haven't plunked down any money, because I'm not generally one for t-shirts or, for that matter, clothes shopping, but this has become an almost daily consideration. Today I wondered how my personal style would change if I actually got all those shirts and wore a different one each day. I don't know if my office would allow it, but maybe. It seems that there are enough ads to keep me in new shirts for at least half a month, and I like to think the profits support the cause. I could always throw a sweater on for work.
Today this t-shirt consideration led me to a realization that the grief many of us felt on November 9th, and have continued to feel beyond, was not only grief over the loss of our preferred candidate, our outgoing administration, our country as we saw it, or democratic values as a whole. Those are all huge. The political is very personal. Maybe moreso for some than others, depending on where we each fall on the nonlinear privilege spectrum. But everyone breathes. Everyone needs clean water.
Today, as I looked at another Superwoman graphic hashtagged with RESIST, I realized that there was another grief we have individually and collectively been feeling: the grief over the loss of who we were before. When we woke on November 9th, subconsciously but without a doubt, we must have known we would be fundamentally changed because of the election outcome. Change, the philosophers, yogis, and psychologists tell us, is the death of something. Even in the best of changing circumstances, we feel a certain amount of fear, sadness, anxiety. But this is not the best of circumstances, and the election outcome has long term implications. The country has changed, and, passive or active, we have changed with it.
Looking back on the last few months, I now see the death of us as we were. Conversations are different. Not once since the election have I sat with a friend and not talked politics. Not once has Darby and I skipped a recap of the news at the end of the day or first thing in the morning. We've all witnessed and/or experienced wonderful things in the past few months - babies, marriages, publications, travel, beauty somewhere somehow. Yet, the beauty almost seems like it's "despite." It's apparent in the things we post, buy, talk about, dream about, the way we answer the question "How are you?". Something fundamental died; something fundamental has grown in its place. Maybe we're all still adjusting to it, and reluctantly at that, just as we would with the death of anything we are not ready to let go. Who are those people who post so many negative news stories? Who are those people who wear t-shirts?