little enigma

I know it's been awhile since I've written. Calvin has had a bit of a hard time lately due to who knows exactly what since he can't tell us—it is always a mystery—but probably some combination of an increase in his newest epilepsy drug, Xcopri, and a recent decrease in his older epilepsy drug, Keppra. My guess is he is experiencing some withdrawal seizures and symptoms, and my bet is that the Xcopri and my homemade THCA cannabis oil is helping to quell some of them.

Suffice to say, I haven't had the wherewithal or the headspace to write. Instead, I've been training for a 10K running race called Beach to Beacon, which happens two weeks from today (I've never done a road race) and I've been taking loads of photographs of trees and flowers and water and my little enigma this past year, which I'll leave here for you to consider. Click on any of them to enlarge.

I hope, dear Reader, that your summer is going well as can be and that you're getting out and about. As for me, I'm enjoying my car rides with Calvin, and my runs and walks on the back roads and trails with or without Smellie, plus a bit of gardening, small and infrequent gatherings with friends, good movies, eating Michael's delicious meals in the screen porch, and this sanctuary of ours. And of course, I continue to live vicariously through others, perhaps even through you.

hemmed in

If you look closely, you'll see me in there somewhere, the edge of my mostly-auburn hair mingling with leaves and twigs, baggy bloodshot eye, wearing my shabby blue fleece robe that our neighbor thinks makes me look like a ward from an insane asylum. His estimation is fitting. One of us might be heading there, Calvin or I.

After yesterday's string of partial complex seizures—one every hour from eight-thirty until two—Calvin was impossibly restless on either side of last night's grand mal. This morning he is still unhinged, his repetitive humming and growling having not let up after hours on end. The kid is certifiably nuts, and he's sending me there. Both Michael and I tried sleeping with him, hoping to calm his inner demon so that everyone could get some rest, but because of Calvin's derangement, which must be some sort of benzo withdrawal symptom, sleep proved elusive for all of us ... again.

While walking Nellie yesterday in near-freezing, bone-chilling winds, I sat on a stump in the sun. It was then that I noticed my right eye hurting. That morning, Calvin had inadvertently stabbed it with several rigid fingers. Each time I blink, it hurts. Squinting, I looked out over fields, still covered in snow and flanked on all sides by naked oaks, maples and white pine of the same size—a wall of trees, really. Much of Maine makes me feel this way: walled in. These parts are mostly flat, and considering how close we are to the ocean as the crow flies, it takes some driving to get to a place with a decent vista much less a wide beach or clear view of the open sea. The experience I have at home raising Calvin, hemmed in by these four walls and by his condition, is the same one I have in Maine. I think I'll call it hemmed-in syndrome.

Perhaps if I were younger and not in love I'd run away from my reality. Last night things were very nearly as bad as it gets save trips to the hospital or the hours of night terrors Calvin sometimes suffers and we somehow cope with. It's these times when I imagine leaving my family behind and escaping to a place with mountains and hills right in my backyard, with ample and easy views of horizon meeting sea, of endless beaches minutes away and springlike weather year round. I'd go somewhere cosmopolitan where throngs of people busy the streets, where restaurants are bustling, where there are decent cafes and gorgeous parks in which to linger and explore, and interesting neighborhoods through which to tread for hours. I'm talking about a place like my beloved San Francisco. Maybe even LA. Perhaps some day I'll get back there and stay.

But for now I am here at home, today with my manic child. In doing endless loops with him around the house this morning, he stopped and I stood to block his incessant staring at the sun. Looking up, I saw this photo on the wall, one Michael made a couple of years ago. In its glass I saw my reflection, though dark, as well as windows through which I could see trees and light from outside. I exchanged tepid coffee for camera to capture the image. Then I dove into the windy scene of branches, leaves and sky—but for a divine moment no longer hemmed in—becoming a virtual traveler through time and space to a place without Calvin or angst, sleeplessness, seizures and mania, far beyond these walls which hem me in.

calvin at home

To see this sublime photo series by my husband, Michael Koltster, click here, then scroll right.

Photo by Michael Kolster

thanks y'all

Yesterday, he came through the mudroom door a month after I’d said a very tearful goodbye to him. He’s lost several pounds having survived a string of long, hard days photographing the Los Angeles River, the Rio Grande, The Hoover Dam and Lake Mead sustained in great part by a modest diet—not so much by design as by necessity—of avocado, cheese, sardines, bread and raman. He looks like he did when I first met him seventeen years ago, not an ounce of body fat on him. Complimenting him on his wiry physique, I joked that he resembles Jesus, at least the European version of the man. We laughed.

As part of his Guggenheim Fellowship, my husband Michael drove cross-country and back in a rental van packed with 220 sheets of spanking clean 8 x 10 glass, several jars of syrupy collodion and silver nitrate, gloves with which to handle the glass and chemicals, several gallon jugs of distilled water, trays and tanks and graduated cylinders, one dark box and its stand, one dark cloth, two large-format cameras, at least one tripod, a handcart and several homemade wooden cases in which to hold his glass plates after exposing, developing and fixing them.

During his trip he called me twice daily to tell me how many plates he’d shot, how long he’d sat in traffic, how tired he was, how great the World Series was, how nice his hosts were and how ready he was to come home.

Calvin, Nellie and I stayed home, but mostly not alone. A legion of friends and family came out to help me. Seti flew here from LA on a 24-hour trip from hell, and since I couldn't, Macauley picked her up at the jetport at eleven p.m. bearing a warm winter jacket and a burger for a gal he'd never met. A few days later he stepped in again to take my sick car to the mechanic, then took Seti back to the airport when she left. A week later my mother-in-law lovingly descended, but from Florida. Regrettably, both women witnessed Calvin have a bad seizure in the middle of the night. Both helped me manage it. Later, my sister drove up from Connecticut for a couple of wonderful days and nights. All of them gave me an abundance of love and support, helped make me smile and laugh.

Arnd, who traveled from Berlin, though not expressly to help me, stayed four nights and, in true form, tried fattening me up on loads of breads and pastries from Standard Bakery. Nick came by—twice—and thoroughly entertained me with his ever-quick wit; he knows me so well. Ann, Kevin, Russ and Susan brought dinner one night, helping me put a dent into my lonesomeness. Ann returned a few days later bearing gingercake and whipped cream for breakfast! Jen and Madeleine checked in, hung out and slept over. Maura, Matt and Lauren looked in on me several times and stayed at least short enough for hug and/or a drink and long enough for dinner. Mary walked Nellie when Calvin was recovering, Connie did some of my shopping and my new friend Sarah treated me to coffee. Our good-ole homies Luke, Sarah and Matt sent my sleep-deprived blues packing when they stopped by for a spell last Sunday night and turned my kitchen into an impromptu party. Lorry brought me some donuts, hugs, laughs and a smile. Barbara kept care of Calvin several evenings so I could saddle up to the bar and dine out with a few of my pals.

They cooked and cleaned and walked the dog. They brought me bourbon and pizza, homemade tamales and lentils and called on me often to ask if there was anything I needed. Without them, I’d have been hard-pressed to have made it a manless month without totally losing it to sleep deprivation, loneliness, monotony or Calvin's mania. Aviva, Kim, Lucretia, Teresa and Viv, I'll be sure to catch up with you soon.

Thanks y'all, from both me and Michael. Here's just one of hundreds he was able to take because you were here helping me cope:

click on photo to enlarge

Rio Grande, photo by Michal Kolster

where i might rather be just now

photo by Michael Kolster

silver, sleep and seizures

By the time I kicked our dinner guests out, the clock was inching towards eleven p.m. Our bellies were swollen with Michael’s carnitas, my guacamole, our neighbor’s fresh chunky green salad and another neighbor’s chocolate iced chocolate cake. We’d laughed at length about infused vodkas and their scandalous effects, about performing CPR on an electrocuted cat, about designer chocolate, home renovations, Mainers and their ways and the long-ass winter that somehow we feel we’re still amidst.

At one point, as the conversation dissolved around me, I drifted into the center of one of several hundred of Michael’s glass-plate photographs, this one hung on the far wall opposite of where I sat. Under its spotlight in the darkened room the ambrotype's silver gleamed like smokey quartz and I imagined diving into the heart of what looks to be a bed of reeds under a stand of swaying Savannah palms.

Before dawn, the glass plates had sliced their way into a sorry dream. In it, Calvin was a miniature baby no bigger than my thumb. He was very ill, so I lovingly and delicately sandwiched him between two small plates of glass the size of playing cards, and rushed him to the emergency room. When I peeled back the top plate so the doctor could examine him, Calvin's eyes were bulging the way they did during his very first seizure, his tiny torso collapsed, blue and oxygen-starved. In the moments before waking I feared for his life.

Four-forty-five came, as always, far too early and this time unsettling, the image of Calvin my thumb-sized boy etched into my groggy mind. Michael brought our fussy son into bed with us, hoping to calm him so we'd all catch a few more winks. Calvin struggled before eventually falling back to sleep only to wake an hour later to a seizure. In Michael’s arms Calvin stiffened then convulsed. I kissed his neck and in the dim morning light we could see that his hands had turned blue. I watched the clock over Michael’s shoulder and by three minutes the seizure was over, so I ran downstairs to collect Calvin’s drugs and spooned them into his mouth before he drifted off to sleep again, still next to Michael.

I decided to crawl into Calvin's empty bed to get some sounder sleep. With my head on the pillow I laid there thinking of Michael’s ambrotype, how its brilliant image had beckoned me to a different place and time. With my eyes closed, I dove back into its mysterious warmth, dipped my toes into its silver sands and let its sultry zephyr rock me back to sleep.

friday faves - paraphernalia

I sit motionless in a gray steel and vinyl chair before a grid of full-spectrum compact florescent lights, eyes closed, a double-sided dark cloth draped over my shoulders. For ten minutes I hold this pose as Michael looks into the ground glass focusing the image of my face onto it, adjusting the camera’s fully extended bellows. He vanishes into his darkroom where he pours the emulsion onto the glass plate and dunks it into a silver bath before emerging and snapping it onto the back of the camera. He counts down, “four, three, two,” and on the count of one I take a deep breath and hold it for the forty-second exposure. In my stillness I realize how calm I feel—warm, silent—and I remark about it later, about how I rarely, if ever, relax like that and just ... do ... nothing.

My husband’s studio is packed to the brim with his photographic paraphernalia: chemicals, cameras, flasks, clamps, plastic trays, cloth and latex gloves. And then there are the photographs themselves; large black and white riverscapes; hand-tinted prints of old mill town structures; expansive cityscape triptychs, curled satiny silver gelatin prints; an oversized cyan sky reflected in a muddled green river reminiscent of an oil painting; and translucent glass-plate ambrotypes resting against a black velvet backdrop that magically reveals the rugged beauty of the images. To my delight, in nearly every section of the large space he’s hung photographs of me.

Stacked on end against the walls lean huge framed photos wrapped in smooth brown paper and masking tape. Some prints are pinned up, others hang framed on screws or nails. Gunmetal gray file cabinets bulge with 4 x 6 glossy prints inside waxy paper sheaths, countless yellow boxes boasting thousands of photographs buttress towers of flimsy negative sleeves from recent years past.

Michael is the most prolific artist I know, tirelessly laboring, inventing, creating—dreaming. His bodies of work are vast, deep and varied. His fearlessness of new territory, different methods, themes and subject matter reminds me of the innovation of Miles Davis or Beck—constantly evolving, experimenting—yet the familiar thread of genius throughout the work remains. He’ll blush at reading these words, dampen them down in his own modest way, but I know his work is gorgeous, provocative, impeccable and timeless.

A few nights after modeling, I return to his studio to see the day’s work. Scattered across the tabletop are countless orange bottles with childproof caps sporting printed white labels with Calvin’s name. In large bold letters one reads MAY CAUSE DIZZINESS. Many are empty, others still contain the sinister little capsules stamped in a tiny font: ZONEGRAN. We’ve saved most of the empty or discontinued drug canisters and their contents over the past six years for Michael to photograph. Along with the amber bottles are translucent ruby vessels with traces of syrupy liquid beading their insides, paper-backed foil blister packs—the kind that are oh-so satisfying to pop—bundles of striped urine test strips and multiple dozens of crinkled, stained, handwritten medication logs with rows of penned in Xs and administration times.

“Makes me sick to look at them,” I say to Michael, regarding the piles and piles of foil and plastic casings strewn on surfaces or spilling like guts from every possible nook and orifice in the large, cluttered space. I imagine Calvin’s pristine little body, his smooth belly and flawless skin, and think of all the wicked chemicals we’ve spooned into him over the course of nearly seven years. Frigging seizures, I think, effing drugs. And yet this paraphernalia proves so ironically beautiful to behold, like precious metal, little gems or handfuls of pearls. At the same time they remind me of the acrid metal of war, of steely prison walls, padded white cells, of the numb brain and bleak future of my precious, innocent little boy who, every morning, noon and night, we woefully coax to open his mouth and choke down this string of endless, chalky, bitter pills.

From last December.

 

photos by Michael Kolster

paraphernalia

I sit motionless in a gray steel and vinyl chair before a grid of full-spectrum compact florescent lights, eyes closed, a double-sided dark cloth draped over my shoulders. For ten minutes I hold this pose as Michael looks into the ground glass focusing the image of my face onto it, adjusting the camera’s fully extended bellows. He vanishes into his darkroom where he pours the emulsion onto the glass plate and dunks it into a silver bath before emerging and snapping it onto the back of the camera. He counts down, “four, three, two,” and on the count of one I take a deep breath and hold it for the forty-second exposure. In my stillness I realize how calm I feel—warm, silent—and I remark about it later, about how I rarely, if ever, relax like that and just ... do ... nothing.

My husband’s studio is packed to the brim with his photographic paraphernalia: chemicals, cameras, flasks, clamps, plastic trays, cloth and latex gloves. And then there are the photographs themselves; large black and white riverscapes; hand-tinted prints of old mill town structures; expansive cityscape triptychs, curled satiny silver gelatin prints; an oversized cyan sky reflected in a muddled green river reminiscent of an oil painting; and translucent glass-plate ambrotypes resting against a black velvet backdrop that magically reveals the rugged beauty of the images. To my delight, in nearly every section of the large space he’s hung photographs of me.

Stacked on end against the walls lean huge framed photos wrapped in smooth brown paper and masking tape. Some prints are pinned up, others hang framed on screws or nails. Gunmetal gray file cabinets bulge with 4 x 6 glossy prints inside waxy paper sheaths, countless yellow boxes boasting thousands of photographs buttress towers of flimsy negative sleeves from recent years past.

Michael is the most prolific artist I know, tirelessly laboring, inventing, creating—dreaming. His bodies of work are vast, deep and varied. His fearlessness of new territory, different methods, themes and subject matter reminds me of the innovation of Miles Davis or Beck—constantly evolving, experimenting—yet the familiar thread of genius throughout the work remains. He’ll blush at reading these words, dampen them down in his own modest way, but I know, his work is gorgeous, provocative, impeccable and timeless.

A few nights after modeling, I return to his studio to see the day’s work. Scattered across the tabletop are countless orange bottles with childproof caps sporting printed white labels with Calvin’s name. In large bold letters one reads MAY CAUSE DIZZINESS. Many are empty, others still contain the sinister little capsules stamped in a tiny font: ZONEGRAN. We’ve saved most of the empty or discontinued drug canisters and their contents over the past five years for Michael to photograph. Along with the amber bottles are translucent ruby vessels with traces of syrupy liquid beading their insides, paper-backed foil blister packs—the kind that are oh-so satisfying to pop—bundles of striped urine test strips and multiple dozens of crinkled, stained handwritten medication logs with rows of penned in Xs and administration times.

“Makes me sick to look at them,” I say to Michael, regarding the piles and piles of foil and plastic casings strewn on surfaces or spilling like guts from every possible nook and orifice in the large, cluttered space. I imagine Calvin’s pristine little body, his smooth belly and flawless skin, and think of all the wicked chemicals we’ve spooned into him over the course of nearly six years. Frigging seizures, I think, effing drugs. And yet this paraphernalia proves so ironically beautiful to behold, like precious metal, little gems or handfuls of pearls. At the same time they remind me of the acrid metal of war, of steely prison walls, padded white cells, of the numb brain and bleak future of my precious, innocent little boy who, every morning and night, we woefully coax to open his mouth and choke down this string of endless, chalky, bitter pills.

Please share Calvin's story with others. Help bring us one step closer to a cure for epilepsy. It's as easy as pushing a button.

photo by Michael Kolster

boy on a plane

Yesterday was the end of a short week’s holiday in Florida. After tearful goodbyes to Calvin’s grandparents, aunts, uncles and cousins we were dropped at the airport curb.

When we reached security a nice man in a neat blue TSA uniform greeted us and immediately calmed our nerves with patience and reassuring words. The sparkle in his eye matched the stud in his ear as he passed discs of cotton over Calvin’s battery of medicines that I had stuffed into a one-gallon zip-lock bag. “Is your son an epileptic?” he gently asked. “Yes, he has epilepsy,” I replied. As he continued examining Calvin’s paraphernalia he mentioned that he had been hit by a car when he was seventeen and began having seizures. The phenobarbital he was put on, he said dolefully, made him into a teenage zombie for several years. I knew exactly what he meant.

As we approached the gate we saw a handsome highschooler in a wheelchair who was traveling by himself. The four of us boarded the plane first and were seated behind the bulkhead, Calvin and I on one side, Michael and the boy on the other. No sooner than I had buckled him in Calvin started screaming bloody murder, his feet kicking marks onto the side panel, his arms lurching out grabbing fistfuls of my hair and yanking. The origin of this manic behavior is difficult to know. Is over-stimulation, discomfort or excitement? No one knows. My gut tells me it's the drugs and/or preseizure flurry. I decided to feed Calvin his walnut snack early trying in vain to calm his crazies.

Across the aisle Michael and the boy chatted. The boy explained that he had been eight weeks premature, had cerebral palsy, and was born missing half of his brain. He spoke in a slow, deliberate manner, a slight thoughtful pause before everything he said, his words round and full. He told us he had seizures and that he was taking a drug that Calvin had also tried when he was just two.

I stretched an arm across the aisle and gave the boy one of my business cards, the one with a photo of Calvin and me on the front, my mission statement and blog address on the back. We agreed to become friends on Facebook. He told us that he loved to read and write. Michael shared some photos on his ipad but Calvin was a magnet. So as they passed the time talking of swimming, photography and books, the boy craned his neck often to watch our son.

At one point the boy noticed the exasperation on my face having to deal with my screaming child. He asked if it was difficult to raise Calvin. Michael replied with total candor and said yes. He saw me try to quell Calvin’s shrieks. “Poor little guy,” he remarked with the purest of empathy, “he can’t help it.” I wanted to cry.

The jet pulled up to the gate and Calvin walked hand-in-hand with me up the gangway so very well, I thought, he’d be having a seizure soon. As we waited for the boy to be wheeled up by a skycap we saw his mother standing patiently, the boy's sweet features mirrored in her face. We introduced ourselves and talked briefly about our encounter with her son and the epilepsy he shared with Calvin. Just then the boy emerged from the hallway, his long thin arms outstretched like an albatross with a huge smile that said, “Mommmmmm.” At this my dammed tears finally cascaded down my face. I quickly brushed them away with the back of one hand, the other holding Calvin’s as he leaned affectionately against my legs wanting to be picked up.

photo by Michael Kolster

portraits

Click here to see more photos of Calvin by Michael Kolster