a good day for musing

it's a good day for musing: on crystalline skies and arctic climes; on bundling up and trudging down open roads; on icy patterns fanning across salt-blanched tarmac and pristine white ponds; on a twenty-something runner with thick-braided pigtails jogging past me, smiling and breathing in time with her rock star companion, steven tyler; on a place so calm the music still found my ears from half a mile down the road.

it's a good day for musing: on the beauty of a frozen tidal cove; on its greenish gash resembling a clownish mouth, white pancake makeup and all; on its vast flatness; on the footprints of those who dared walk across as it invisibly ebbed and flowed; on the marvel of ever-changing landscapes; on two huge birds perched atop a gnarly oak; on their wide wings and undersides white as snow; on a skinny dog who runs to my side from the middle of the road whenever i call; on the musky scent of weed wafting from an open window of a passing truck; on having—only minutes before—filtered some alcohol-soaked bud in the making of calvin's cannabis oil, filling the house with its rich aroma.

it's a good day for musing: on freezing cold fingers sheathed in polypropylene gloves; on unknown yet friendly ones which wave to me from behind windshields; on the satisfying click of my panasonic's shutter when i push its shiny metal button; on finding someone's running shoes which had been buried in the blizzard then unearthed by a passing plow; on who might be missing them: perhaps a pigtailed runner?

it's a good day for musing: on juniors and seniors; on having known them and watched them grow; on infants and toddlers who turn into runners, skiers, skaters; on grade schoolers who morph into gawky tweens and smart, creative, athletic teens; on ellis, a sweet, curious and extraverted girl—calvin's first grade classmate, his first and only play date; on her mother, who stops by sometimes with flowers, jars of homespun applesauce or tins filled with herbal salve; on the bit of my childhood self who i see reflected in ellis—her effervescence, wit, energy, and unabashedness; on ellis' friend fiona, with whom i used to read books at school as calvin flailed, who now—all of a sudden—seems so grown up.

it's a good day for musing: on finnegan and his mother; on bringing the world to her in loving words and photographs; on our picnic and long walk one evening last summer; on reliving the feeling of jumping with her in the dark from a nearby bridge into brackish waters while wearing almost nothing; on the freeing feeling of trusting others; on laughter and weeping; on the sensuality of maine's extreme weather—heavy and sweltering at times, at others, clear and light with cold that cuts to the bone—all worth feeling.

it's a good day for musing: on my enigmatic child who never grows up; on the toys he's loved and chewed for years; on his wordlessness and seizures; on his peculiarity and fleeting moments of normalcy; on his steadfast and loving behavior; on having just had one of his best months, seizure-wise, in two years; on beauty in all its forms, understanding, forgiveness, gratitude and hope.

geek on the back roads

For the first time in what seems like weeks, I went for a run. The roads were clear of snow and ice, and Calvin was in school. It was only thirteen degrees, and I'd never jogged in such cold, but when one lives in Maine and wants to run outdoors, there isn't much of a choice. Luckily, though the air felt damp, it was mostly still. I suited up, then headed out to my beloved Pennellville and parked the car near the point at the side of the road. Right out of the gate, Smellie took off and ran amok, zigzagging from one side of the road to the other, sniffing whatever there is to smell when everything is frozen. When we passed one of two dog walkers, just to be considerate (because Smellie is the mellowist dog in the world unless you're a tennis ball, chipmunk or squirrel), I clipped her on the leash and she trotted alongside me quite well. I jogged on the smooth, flat roads at a steady pace, feeling light and lithe and kind of cool (groovy, not chilled) despite the fact I was clad in mixed layers and looked like a total geek: big, boxy, patched-up, dirty, drab, puffy jacket; dingy-white, stretched-out, high-water joggers; long, black leggings underneath; bright teal sneakers. At least the chunky wool hat Meggan knit me looked good. But I stayed warm, even my hands, which were gloved, fisted, and drawn into tattered, apish sleeves.

Nearing the halfway point, I ran into my friend Lauren walking her dog. I stopped to give her a big, long-overdue hug, making sure to exhale away from her face, because—you know—Omicron. We chatted for a bit and vowed to somehow get together soon for a homemade cocktail, then I took off again. 

Twice along the way I stopped briefly to take a couple of photos before my phone crapped out in the cold. I've not often seen the early(ish)-morning sky at Pennellville, and today—not unlike every day I visit there—the scenery didn't disappoint. On my way out, clouds spread across the sky in a way that was wonderfully moody, both in color and how they dissolved into each other as if watercolor or smoke. On my way back, I watched a sliver of lemon sunshine squeeze itself through a gap in the eastern horizon. Not surprisingly, it looked and felt sublime.

In all, I went four miles, which is no big deal, but I'm thankful I could do it at all (I hope to perhaps run this summer's Beach to Beacon 10K, if I'm lucky.) As for Smellie, well, considering she's nearly eleven, her performance was amazing. Perhaps most noteworthy is that I didn't worry or think about Calvin even once until my cell phone failed on the way back, and even then I wasn't too bothered since he had had a decent morning and is in good hands at school.

At home now, Smellie is totally conked out. I'm here writing, my feet up on the green couch, listening to music and feeling the warm afterglow of a good workout, plus a slight high some attribute to endorphins while others believe might be endocanabbinoids. It has been seven days since Calvin's last seizure, which isn't very long, but it's better than three consecutive days of the terrible cluster-you-know-whats. Michael will be home soon with groceries. I've just put a fire in the stove. A small glass of red wine is imminent, and I'm already looking forward to tomorrow morning, which is when I've planned another running date with Pennellville.

oh, pennellville

it's nearly ten o'clock. barely as many degrees out. ruling the day are crystalline skies and sunshine. no hint of a breeze. even so, i bundle up: long underwear, jeans, wool sweater, scarf and hat. shearling boots, gloves, grayish puffy jacket. for the first time in a year, i pack my panasonic. i miss its reliable wide-angle capture. it catches more of the world. gives a different perspective.

calvin is at school, so i turn on my phone's ringer. then smellie and i drive to the point by way of pennellville road. not far from home, it has become one of my favorite places in the world. i park the car by the side of the road. with smellie off leash, she and i walk briskly in the cold. fists balled up in my pockets. squinching my toes back and forth to better make the blood flow.

unlike life, the terrain isn't difficult—no traffic. no obstacles. gentle slopes. roads are paved wide and flat and smooth. besides smellie, i'm all alone. the feeling is sensual and splendid, like when i used to travel solo far from home. a slim gravel margin runs between trench and road. i pause to study a frozen stream running from a culvert. treading tentatively to see if the ice is firm, i punch clear through. having grasped a nearby fencepost, i narrowly escape stepping into the frosty pool below. chuckling, i feel a bit like my former kid self. oh, to be so free again! oh, pennellville, to call you my own!

out here in the peace and quiet, sound travels as if on the backs of birds. out here, i can see bits of ocean kissing the horizon between stands of trees on a hill. out here, the sky is big and magnificent, like the west i ache for, love, and still think of as home. out here, it's like there's no care in the world. pennellville, you are my home away from home.

as i walk and frame and shoot, i think about the past two years—the damn pandemic; the fourteen months my son stayed home; the scores of seizures he has endured; the conversations about elections, insurrections, masks, vaccinations, conspiracy theories, religion and its pitfalls, the true meaning of virtue. i wax nostalgic about the drives we took. the friends i've made—and hope to make—along the way; the ones i've kept and the ones who long ago somehow became estranged. pennellville, i want to whisper you every name.

in all, the dog and i go four miles. nothing to write home about. still, it's the furthest i've roamed since taking calvin out of school for three weeks after some brushes with covid. luckily, he didn't get infected. my ankles and feet are slightly sore. i'm not used to these boots; still, i could return again tomorrow. could see something new from one day to another—icy bubbles; frozen grassy waterfalls; red berry boughs; stately, naked oaks; bald eagles; snowy owls; dog walkers in hiking boots and puffers; runners of all ilks clad in myriad colors, each with their own distinct gait. 

oh, pennellville, thank you for giving me the space and freedom i can't easily get in other ways, during my virtual and prolonged lockdown with calvin. thank you for your steadfast offering of sanctuary and repose. for your quiet attention and embrace. for your lack of judgement. for your unwavering charm and beauty, no matter the season or weather. for allowing me to look upon you unabashedly and ponder anything. to see myself reflected in your skies and trees, pools and meadows. for the room you so freely give me to see and dream and feel anew.

on pandemics, mindfulness and mother nature

too many close covid contacts compelled me to yank calvin from school. wanna get him his booster soon as possible. his immunity has dwindled over so many moons. don't want him to catch omicron or delta—or other worse versions that might yet emerge. he already has too many woes. want to avoid the hospital at all costs, too. don't want to risk infecting others. wish that were the way everyone rolled.

today is the winter solstice. i can feel it in my bones—the calm. the chill. still, these are some long-ass short days taking care of calvin alone. not much to do when it's so damn dark and cold. and now the ground is covered in snow. means we're mostly stuck indoors. means i have to practice mindfulness. focus on little things—the curve of a glass or face, the color of the sky, the smell of baking bread, the sound of creaky wood floors—and on gratitude. have to tread water a little bit longer. hold onto hope. stay upbeat. thankfully, i'm pretty good at that, though calvin's recent spate of day-long mania makes it difficult. at least at night he's sleeping.

for fourteen months i did it. at the start of this damn pandemic. same old same old—hung out with calvin at home. he can't do remote school. can't use a screen. can't watch videos. can't read books. can't play with toys. can't sit still. i feed him and dress him and bathe him and potty train him. wipe him up, too. regrettably, you've heard it all before. no teachers or aides or nurses to take up the slack. only michael and his fabulous companionship and cooking. thank goodness. something i try to forget: even when there's no pandemic, our lives are hardly different.

i turn to things that help pass the time: long car rides on back roads, baths. about all i can think of. while driving, i listen to music. note the changing light and weather and landscape. see the nuance. compare it all to last year, my memory of it. see passersby braving the cold. they sometimes smile at me and wave, make my day in doing so. i try to find delight in getting all bundled up. laugh at myself sloshing around in my oversized boots (men's treads are better.) would rather romp in sneakers, jeans and t-shirt. even in winter—perhaps especially—runs and walks in the morning and evening with smellie do me good. out where the sky is big and the sun is coming up or setting. casting long shadows. painting clouds sublime colors. out where i feel my smallness most. like the first star appearing at twilight, only tinier. and yet part of something far larger and unknown. long-ass days are good for pondering this sort of thing. it's fine there are no answers, though i'm not really looking. wonder keeps me curious and humble.

a friend shared this poem with me when she saw my photo below. and though i'm no believer in the god of organized religions, i can get behind and into mother nature. so i think of "her"—the universe and all its forces—when reading it, praising only nature. and in the spirit of mindfulness and beauty, i'll pass this morsel on to you:

Pied Beauty 

Glory be to God for dappled things— 

For skies of couple-colour as a brinded cow; 

For rose-moles all in stipple upon trout that swim; 

Fresh-firecoal chestnut-falls; finches’ wings; 

Landscape plotted and pieced—fold, fallow, and plough; 

And áll trádes, their gear and tackle and trim. 

All things counter, original, spare, strange; 

Whatever is fickle, freckled (who knows how?) 

With swift, slow; sweet, sour; adazzle, dim; 

He fathers-forth whose beauty is past change: 

Praise him.

—Gerard Manley Hopkins

back at home and on the road

Last week at school, Calvin came in close contact to three individuals infected with Covid-19. A close contact is considered direct physical contact or a total of fifteen minutes in any 24-hour period within six feet of someone who has tested positive for Covid-19. The day after Calvin tested negative following his first close contact, which was the Monday before last, we learned of the two additional exposures last Thursday and Friday.

Today, I made the decision to keep Calvin home from school until after the holiday break. The decision was not an easy one; Calvin will miss out on riding the bus and spending time with his teacher, aides, therapists and classmates. Instead, he will be mostly cooped up at home playing with his baby toys, spinning in his swing, taking baths and car rides, and walking aimlessly around the house and yard with me, as long as there's no snow on the ground. No doubt it will be an inconvenience for me, too, in that I'll have far less time to myself for things like writing and taking showers, and I'll have to deal with Calvin—his needs and behaviors—around the clock again, after having done so for more than a year at the start of this damn pandemic. Thankfully, Michael helps out when he can, and does all of the cooking, which is amazingly tasty. And, I feel fortunate to be in the position to take that decision, in that I no longer have a job or career to worry about.

The decision was mainly taken to prevent the risk of any additional close contacts at school. Keeping Calvin free from additional close contacts will allow him to get his booster shot sooner than later, since boosters can't be given until two weeks after a close contact. What with Covid cases surging, and in light of the recent emergence of the more contagious Omicron variant, I want Calvin to have maximum immunity around the time he goes back to school on January third. A booster before Christmas will do that.

So, for the next two-and-a-half weeks, life for us is going to look pretty much like it did last winter: back at home and on the road for long car rides, taking in the scenery, waving at friends and strangers, and listening to music. We survived more than an entire year that way, so I'm sure we can manage to do it again without too much trouble.

In other news, we have slowly increased Calvin's new antiepileptic drug, Xcopri, from 6.25 mgs to 18.75 mgs per day (I'm splitting pills into halves and quarters) without seeing any noticeable side effects. Most adults take doses between 100 to 400 mgs a day. My goal is to increase Calvin's dose only when he has a breakthrough seizure. The titration schedule suggests increasing the dose every two weeks regardless. That makes no sense to me. In my mind, less is always better if it can work. My hope is that he doesn't have to take more than 25 to 50 mgs when all is said and done. I want to avoid taking him to extreme doses in an all-out effort to achieve seizure freedom. I want him to have a decent quality of life above all else, which might mean trading a few seizures to avoid heinous side effects, if you know what I mean.

So far, Calvin has gone eleven days without any seizures, and has had only one seizure—a grand mal—in the month of December. Knock on wood. Cross your fingers. See you on the roads.

glorious morning

it's a glorious morning when calvin wakes up on his seventh day without seizures, eats all of his breakfast, then gets on the bus heading to school. it's a glorious morning when a field sparkling with frost crunches underfoot, when trees have turned neon and the sky is blue. it's a glorious morning when it's thirty degrees and the sun is warming my face and shoulders. it's a glorious morning when i see people i like and love on the roads and fields and trails.

this morning, smellie and i went on a stroll with lauren and her dog, hola. we caught up on all things newsworthy and personal. we took a detour to an open space i rarely go. there, the marathon runner i used to see quite often on my pandemic car rides glided by and said hello. later, on the second part of an extra-long walk, i ran into a smiling tahnthawan, gave her a hug and talked with her about dogs, sparkly things, and trying something new. back at home, i marveled at the morning light splashing on the acidy, autumn foliage in my garden. any one of my few encounters were enough to make my day a good one.

after a late-morning bowl of steel-cut oatmeal with spoonfuls of honey and flaxseed meal, i drove along the back roads to michelle's house. she gave me a tour of her gardens, which are magnificent and ruggedly lovely, even as the perennials have gone to seed. then, we set out for a little jaunt, at first walking along the sleepy street that runs in front of her home. from there, we dipped into a quiet neighborhood and, at the dead end, ducked into the woods. the path, which was blanketed with fallen leaves, spilled onto a salt marsh offering a wide-open view of maquoit bay. we were surrounded by maine's astonishing beauty. warmed by the sun and standing on mats of soggy reeds and wooden planks stuck in the mud, we talked about caring for our disabled and chronically ill kids. as a hospital nurse, she shared some of her nightmarish emergency room covid stories, and we agreed that now is not the time to give up on measures meant to combat the pandemic, save lives, and suppress the emergence of more virulent strains, by getting vaccinated and wearing masks indoors. we also agreed that places like the one we were immersed in have saved us during the pandemic—that if we didn't have easy access to roam in and around wild, beautiful landscapes, our lives as caretakers during the pandemic would be much harder. i told her that the pandemic—most notably because of my daily drives along back roads with calvin when he wasn't in school—had made me more grateful for maine, its space, beauty, and its people. in essence, familiarity has endeared me to it.

i drove home with the windows rolled down. a sunny, sixty degrees feels balmy in a maine november. the breeze blowing through my hair felt exhilarating, like riding my bike as a girl. heading down the hill toward the bay, i could see forever—a rare thing in this place of few soaring vistas. i felt a sense of freedom i don't often feel anymore. i still had two hours to kill before calvin's return from school. i had time for a long, hot shower, and a chance to do some writing. having worked up an appetite, i dreamed about all the delicious leftovers we might eat for dinner—black beans and salmon, chicken curry, turkey-ricotta meatballs in puttanesca over homemade noodles—and the chocolate-malt-marshmallow-oreo ice cream cake i just made but have yet to taste. i was filled with gratitude. and i wondered, after such a glorious morning, if anything else (besides my amazing husband) might just jump right out and delight me. right then, calvin's bus pulled up to the curb, and my drooly, smiling turkey stepped off and almost hugged me.

cross your fingers, knock on wood

yesterday, calvin cried. i cried hard, too. his furrowed brow and pouty mouth are enough to slay me. it was the first time in a long while for both of us. what was the source of his misery? was it yesterday's three seizures? the rectal valium's side effects? did he have a headache? was he nauseous or crampy? i wondered if there were more seizures coming despite my best efforts to stop them. i wish i knew. living with epilepsy is hell on earth—the only hades i believe exists. i'm certain there is no merciful deity. no god pondering whether or not to save my kid from his suffering and afflictions. as calvin's mother, it's obvious. nature is simply going about its business. but i'm not offended by its indifference. the offense is in dogma which insists calvin's suffering is part of some divine blueprint. that would be sadistic.

after years of various seizure treatments—trileptal, keppra, depakote, klonopin, lamictal, zonegran, ketogenic diet, neurontin, banzel, clobazam, cbd, epidiolex, a second try of keppra—we're left with few options. but with mounting seizures, we feel compelled to try another drug, lest his fits run amok more than they already do. he's had so many these past few weeks. and he hasn't seemed very happy for years. his smiles are fleeting. a lot of the time he doesn't really seem to enjoy himself or feel good. for years he has been suffering a handful of grand mal seizures every month, plus some focal ones. he misses too much school. instead, he camps out on my lap, in his bed or on the couch. it isn't much of a life for either of us.

so, after months of research and consideration, we're going to try a novel drug. its generic name is cenobamate, its brand name, xcopri. it hasn't been around for long, but it reportedly surpasses other drugs with regard to seizure freedom. of course, like all the other drugs, the side effects are scary. so, with an abundance of caution, i'm putting calvin on half the recommended starting dose; his neurologist—who knows i'm in charge—is with me. i'm both frightened and hopeful. so many drugs have failed my child and caused a number of miserable and enduring afflictions, worst of all his wicked restlessness, which is a barrier to most everything.

yesterday, when i began writing this, i set out to craft a more poetic post. one with gorgeous, lyrical imagery, the kind that helps me escape my grief and stress. the kind that can maybe take you away to somewhere else. a dreamy post, describing back road travels, with painterly landscapes, sky and water, and the lovely friends and strangers you and i might meet there. instead, i feel it's just another entry about our hardship, worry and despair. and so at least i'll leave you with this photograph of yesterday's sunrise on a field skirted by trees bright as wildfire. from afar, i saw a ghostly mist shrouding the lawn. i meant to capture it. but the nearer i got, the more it dissolved, until finally it was gone. i'm hoping that can happen with calvin's seizures. cross your fingers, knock on wood.

getting lost and forgetting

it has been seventeen days since calvin's last grand mal. equal to a stint in early march. closing in on a longer stretch last december. i wish my worry decreased along with his seizures, but i'm always on guard waiting for the proverbial shoe to drop. spending time in the garden and out and about helps me in getting lost and forgetting. it's good to try and focus on anything but my son and his wretched condition—birdwatching, watering, pruning a little, jogging, writing. anything that takes me places besides the stress of a disabled, chronically ill son.

the weather in october and september has been glorious. days on end in the low seventies. clear blue skies and gorgeous autumn foliage. this morning, i ran another of several 5Ks since my knee pain abated (i started too hard.) these days, i take it relatively easy. it feels good. running is so much more pleasant than swimming indoors. nice to look around at the world instead of at stripes on the bottom of a pool. and, i don't smell like chlorine all day long. it's nice to see friends. greet and wave to strangers. watch the landscape changing with the seasons. i can feel my lungs and thighs, glutes and calves getting stronger. when i melt a little more of this middle i hope to feet light and lithe like i used to. shouldn't take much doing. i'm lucky my body is still responsive.

early yesterday was perfect for a drive. calvin was home from school for the indigenous people's day holiday, so we took our usual ride. we ran into the carhart dog-walker whose name is john. we slowed to a stop and visited for a bit. he told me about his job and about the gorgeous flowering plants he is tending in his front yard, which are chock full of purplish blossoms, and then we said so long.

a mile or two down the road i saw a new friend i recently met. she's one of the regulars i've seen on my back roads car rides. her name is lorel and she does a lot of walking. i pulled to the shoulder and rolled down the windows so she could meet calvin and smellie. in the back seat, calvin was going a little berserk, but she didn't seemed fazed at all. probably in her seventies, she's fit and spunky, clad in leggings, an oversized sweater or jacket, nappy hat and colorful knit gloves. she told me of her violin playing and offered me some homemade pesto; i sense she makes it in bulk from basil she grows. i may have to take her up on it!

today, thankfully, calvin went to school again. he hasn't missed much this year. i put him on the bus around seven and he comes home just after two. today, i had enough time to walk smellie, run, eat a bowl of granola, install the bird bath my new friend and neighbor gave me, mow most of the lawn with our manual mower, shower, tend to email, and write a little—all good ways of getting lost and forgetting about my little enigma ... until he comes home.

across water

this morning, i woke up feeling grateful. calvin hasn't had a grand mal seizure in fifteen days. that's the longest stint he's gone in months and months. maybe even longer. recently, i decided to be more liberal in giving him extra thca cannabis oil. i'm convinced it is responsible for this longer stint. i figure cannabis is a better idea than adding a second pharmaceutical drug plus its side effects. they're terrible.

this morning, i woke up feeling grateful. calvin didn't soak through his diaper and wet his bed. we were able to give him his morning medicines and go back to sleep for a spell like we did yesterday. let me tell you: sleep makes all the difference.

later, while walking smellie at the fields, birds were flitting and chirping about. a friend i passed on the trails told me she had just seen some wild turkeys. mushrooms are pushing up through the earth in all kinds of sizes, shapes and colors. a partly cloudy sky turned into a low bank of fog, sharpening distant conversations like talk across water. autumn colors are emerging in fiery oranges, glowing roses, glimmering yellows and reds. this time of year is pretty damn gorgeous. i wonder if calvin appreciates the seasons.

yesterday, we got our flu vaccines at a drive-thru clinic, then went for a short car ride. the back roads were mostly quiet. in the back seat, calvin wrestled me into giving him hugs and kisses. he smiled gleefully. for the most part, the kid has been all right lately. only a few manic outbursts of yet-unknown origin. i'll take it.

today, we caravanned up the coast with the same friends with whom we recently vacationed. they're my sister and brother, and have a boy a lot like calvin. we stopped to grab some pastries in wiscasset, then made our way up to a place called sewall orchard where we watched apples being pressed into cider. we ate a sausage-ricotta pizza in a boat launch parking lot. i walked calvin to the end of the floating dock, holding him tight as it was rocking. i wonder what he made of it. wonder if he knew he was walking across water.

click any image to enlarge

alone on the roads

Since Calvin returned to school early this month, I haven't been taking him on our daily, damn-pandemic drives on nearby back roads. I seriously mourn their absence; they were a great escape from these four walls, a kind of unwinding, and a chance to see the familiar smiling faces of a few strangers who have, in various ways, become friends. But a recent spate of spectacular weather inspired me to take a couple of rides by myself, one on my bike and another in the car.

I visited my usual haunts—Simpson's Point, Rossmore Road, Bunganuc, Wolfe's Neck Farm. The scenery didn't disappoint. It never does. And there were hardly any cars to distract me from my surroundings. I was quickly overcome by how liberating it felt to be alone on the roads and to be free of my seizurey, sometimes manic kid. I didn't have to glance at him every so often in the rearview mirror. I didn't have to hand him grapes, blueberries, cubes of cheese, roast beef and chicken sausage, some of them dropping to the floor and bouncing beneath the passenger seat, only to remain largely undetected and festering. I didn't have to reach back to grab the sippy cup from my berserk child whose juicy water streams down his chin soaking his shirt to the skin. I didn't have to suddenly pull to the curb during one of his seizures. I didn't have to lurch back and grab his glasses from his fist before he gnashed them between his teeth. I didn't have to jam a towel in the door to stop him from staring at the sun. I didn't have to hear him moan and shriek and watch him flail. Instead, I just traveled along at a leisurely speed, taking in the ever-changing landscape, which is breathtakingly beautiful in any season and in all types of weather.

In slow motion, I watched hawks and jays dip and soar. I gazed across splendid glens and meadows thick with goldenrod, wild aster, cat tails, Queen Anne's lace, meadow-rue and yarrow. I saw runners and bikers and skate-skiers mounting and descending hills. I saw folks mowing lawns and tending to their gardens. I saw fishermen and clam diggers working the shore. I saw bathers wading in both calm and choppy waters. And the skies. Oh, the glorious, cloud-strewn skies.

If Calvin can keep up his longish stint of attending school (he hasn't yet missed a day), I'll definitely be going back on the roads—very happily alone.

click on any image to enarge

the calm before the storm

the sky holds its own burden. the air is close and still. the tempest is on its way. it's coming up the coast. the bugs keep in their lairs. is this the calm before the storm? trees let go their dewdrops. from high up, one plops into my coffee. the forest reeks dank with mildew. smellie chomps deer droppings, then drags her paws on running trails. i wonder if she feels the storm drawing near.

the back roads are mostly deserted. no sightings of my favorite usuals. no runner. no dog walker. no nice couple from the point. been missing them lately. wish we could commune. at the point, the tide is high and choppy. the sky begins to sprinkle. two sopping swimmers come ashore, tethered to bobbing neon buoys. i think they might be my neighbors. smiling, i do a u-turn. at the edge of a stretch dividing fields, a gaggle of canada geese stop and stare. i stop and stare, too. they're hesitant. what the hell are we all doing? outside my window, a hawk swoops along at forty miles an hour. it's keeping time with me. in a blink, i've lost him. easy come, easy go.

in the back seat, calvin yanks off his shoe and chews it. he's not quite himself. his cheeks are flushed like during certain seizures. it's day nine. a full moon. i keep expecting the fit to fall. i was awake last night for three hours. ended up switching beds. didn't really help at all.

at home, we traipse our millionth circuit between these four walls, making well-worn paths from room to room. little fingerprints smudge the walls. other surfaces are covered with drool. i try to wipe them down as i go. a window finally pried open gives neglected plants a chance to breathe. i've never seen their stems and fronds move. i guess they're alive after all.

we get outside before the storm. walk three doors to woody's old home. calvin tries dropping down. i brace him from doing so. lead him across the street. knock on bill and cathey's outside wall. they're home. they take us in. we teeter through their kitchen and living room. out the back door to their deck. there, my son looks suspicious, as if having a little seizure. cathey helps him down the steps. both with bare feet, she and bill escort us home. tell me to call them no matter what i might need. just in case. i feel taken care of. the world—this town—is my beloved home. in the calm before the storm.

put me in your pocket

like the satiny skin on the back of my hands, patience thins. so easily ruptured, like tissue, just with the faintest bit of pressure. after a tear, will it mend? will there remain a ghost of stress and frustration veiled over almost everything? like the close glove of humid air, it's suffocating. oppressive. i've felt and written this again and again. i wonder if things will ever change. or is there really no escaping?

my throat feels raw from screaming loud as i can. trying to drown out the maniac seated behind me to the right. hoping to release my tension. my son is a train wreck, today especially. he screeches and flails, moans and careens. he's out of his mind, and taking me along with him. he's hurtling toward a seizure. i can feel it. it sickens me. i give him an extra half dose of thca cannabis oil, hoping it will calm and fill the void—the one left by lowering his keppra again. we're hoping to get him off it like we did his other meds.

i'm pent up and seething. have loathesome feelings. i love him and i hate him, if only fleetingly. it's not his fault, i know. not anyone's, really. well, perhaps dr. Rx should take some blame. i'll gladly lay it on him. all those pills. drugs on top of drugs on top of drugs. benzos—for a toddler! no way to tell for sure which ones are hurting or helping. i try to trust my gut. mostly, it seems the drugs just inflame his fits and bad behaviors. but maybe it's just the seizures. i wonder how godawful he feels.

how long can a body and mind take this hell—his and mine, our family's? almost no time these days away from my messed-up kid. just short walks with the dog, evenings with michael and nights while asleep dreaming of people i love and who love me. even my writing is punctuated by my son's moaning, stomping and madness. he's a mini frankenstein. a jekyll and hyde kid. at times, i'm repulsed. i have to forgive him. forgive myself. we're all monsters once in awhile.

on days like these, driving along my beloved back roads offers no escape. i'm tethered to my little freak. and when i'm home, i can hardly do anything for all his insanity. it's insufferable. so, in fits and starts, i surf social media. live vicariously through other's photos—weathered docks and lakeside cottages, galapagos rocks and iguanas, western sunsets, cocktails, pasta, and crisp white tablecloths on city sidewalks. the images save me. give me a window of respite from shitty days like these.

put me in your pocket, please. from there, i can better imagine escaping. can view what lies beyond these walls. can see all that we are missing.

On one such day, photo by Michael Kolster

marathoners

i think i overdid it. tweaked my knee running. this body—still fairly fit and strong—sometimes reminds me i'm not not as young as i used to be. or slightly overzealous? both, maybe.

and so i break out my bicycle. there's no doubt where i'll ride: along the back roads. the adventure is altogether different from trips in the car. everything is slower and more quiet. no rumbling engine. no radio. no djs jabbering. very little traffic whizzing by. no infant-toddler-teen screeching in the back seat. instead, wind sweeps back my hair. feels like i'm flying. i can hear the buzz of bees. the chirps of birds and crickets. hear water lap against the shore and run in rivulets between rocks and trees. i'm blown over by the sweet scent of fresh-cut hay and clover. of salty sea air. of smoke from a nearby burn. red winged blackbirds dive and dart. hawks swoop from tree to field. workmen smile when they recognize me. they've seen me drive by with calvin a hundred times. i see the carhart dog walker whose name i now know. i stop to talk with him again. he tells me intimate details about his difficulties. i try to think of ways i can help.

the ten-mile escape renews me. mostly, i've forgotten about my woes. but it's impossible to completely elude worries of my son and his condition. sadly, the angst is well-seated in my bones. two weeks ago we lessened his keppra. hope it might help. since then he's gone longer between seizures. not by much, though. i've put extra cannabis oil on board. maybe it's helping. i think so. we lessened the keppra again this morning. i'll let you know how it goes.

i get back into my meditative state. the rare and glorious feeling of adventure and escape. runners pass me by. warms my heart when they wave and smile. some of them run quite far. as i see the road stretch out before me, i imagine being a marathoner. i wonder what sends or takes them such distances. hardship, loss, grief, trauma, stress, joy, exhilaration, reward, endeavor, competitiveness, obsession, evasion? i know several (of these feelings and these athletes.) i'd love to know the source of their ambition. years ago, i fleetingly considered training for one. i wonder how it feels. to run three times as far as my longest day's swim or jog. to get into a zone where nothing else matters but stride and step and breath. is it a dreaded pain? a kind of high? a refuge safe from other harms? hard to know. perhaps all three.

my dear friend joanie is an olympic gold medalist and world-class marathoner. she lives on a nearby back road. she trained up until the day she delivered her firstborn. she swears my swimming workouts didn't hurt my unborn child. rather, she's convinced they helped equip him to survive. recently, she wrote me about my mothering:

none of my marathon efforts will ever match yours. unfathomable efforts by you for so long and with such love, strength and dedication.

i return to her words often. they make me blush and weep. seventeen years of spoon feeding, diaper changing, butt wiping, bathing, dressing, lifting, hand holding, coaching, teaching, watching, worrying, nursing, aiding and advocating is a slog. it's not a challenge i signed up for. nor one for which i could ever really prepare. but i've long known i have stamina—for racing the 400-yard individual medley and the mile, swimming fourteen-thousand grueling yards in four hours (and something close to that on consecutive days), biking marathon distances as a child, nine months unemployed. i just put my head down. one stroke, one step, one day at a time. breathe deeply. exhale well. pace myself. try to hit my stride. lean on my peeps. imagine a smart event in which i finish strong.

maybe i'm a marathoner after all.

the kindness of strangers

It's Thursday at two a.m. I'm in bed with Calvin after his seizure. With my hand draped across his side to monitor his breathing, I reminisce about my previous day. I think about the kindness of strangers: the salty, sunburned guy in sleeveless sweatshirt and torn jeans who wanted to help me when Calvin dropped down in the middle of the grocery store; the woman in the checkout line who let me and my impatient, pre-seizure Calvin cut in front of her; the kind clerk who was uber-patient as I fumbled with my wallet and stumbling child.

In the darkness of the room, my thoughts then drift to the strangers I've met while driving around on the back roads with Calvin. Countless folks brightened my brutally-long and sometimes dark pandemic days, but none as much as the runner, the Carhart dog walker, and the black-clad couple, all of whom I used to encounter with some frequency. Since our car-ride schedule has changed, however, and since Calvin is having so many seizures which require a day or two of recovery, I rarely see these familiar faces anymore. I miss them, miss our exchange of nods and smiles and waves. Because my days are still long and my child is still sometimes near impossible, their absence is palpable. Recently, I finally pulled over, introduced myself and connected with the latter three for more than a fleeting moment in passing. I expressed my gratitude for their unwitting source of comfort amid a difficult time. The first of these roadside stops was with the black-clad couple. It yielded a kind invitation from the woman, Lynn, for me and Calvin to visit her and her husband, John, at their home on the Point. Yesterday, while Calvin was in school, I took her up on her offer, deciding to go solo to suss things out for a possible future trip with Calvin. As we got acquainted in their kitchen, John frothed up some milk for my coffee and made us breakfast. With plates of cinnamon French toast and berries propped in our laps, we sat on their deck overlooking a misty inlet. We spoke of a dear mutual friend, of the other back-roads travelers, of art and family and pharmaceuticals and politics and pandemic. Lynn then gave me a tour of their home and gardens, which she and her husband have worked on improving for decades. I found the two of them to be intelligent and artistic, with good senses of humor, and they revealed an easygoing openness and humility. The short time I spent with them in their idyllic setting felt like being on vacation. Upon my leaving, Lynn and I gave each other goodbye hugs, and made a mental plan to get together on my turf; it felt as if I'd known her for years.

Finally, dawn begins seeping in through the windows, and as it does, my day at the grocer and with John and Lynn seems like a distant memory. As the shadows recede, so too does the risk of Calvin's demise from SUDEP (Sudden Unexpected Death in Epilepsy), so I finally sneak out of his bed and into mine. As a cool breeze drifts over my body from the open windows, I close my eyes and continue to dream and wonder about the lives of strangers, and of the pleasure of making friends with them. 

every path i take

it had been just four days since calvin's last grand mal. still, i sensed it coming on. his agitation and mania. his restlessness and intensity. his peculiar noises and expressions. last night, while walking smellie along a familiar path at dusk, it arrived. it was the cusp of the new moon. i returned home to find my husband cradling a postictal calvin, who had bitten his check or tongue till it bled.

after the seizure, i spooned my sleeping child. wide awake, my hand on his chest, i reminisced on recent events: finally jogging the trails with my dog; nice, longish visits with a few, familiar, back-roads strangers i had finally and very happily met; a kind invitation from one of them to sit by the sea; chatting under stars and strings of lights on a girlfriend's back deck; sipping the delicious blackberry, mint, gin cocktail her daughter had concocted; meeting an unknown runner who stopped mid-workout just to visit with me and calvin on the sidewalk; four separate gatherings with new and old friends; my glorious bike ride to simpson's point and back again; along the way, hearing a hermit thrush's haunting song; eating lobster rolls and corn on the cob; a conversation about pity and compassion with my visiting sister-in-law.

finally, sleep arrived. like life sometimes, my dreams were vivid and difficult. at five o'clock, we awoke to a second grand mal and, when it was over, i crawled in next to calvin again. this time, shut-eye proved impossible. instead, i mused on recent expressions of compassion and love from friends and strangers:

i've had deep sympathy for you from day one; i think about you and calvin all the time; i couldn't handle your situation with the grace you show; i wish there were something i could do; i love you then now always; you break open the heart and the stories; thank you for the little window into your world; wish that the pain i genuinely feel for you could somehow make your days easier; all you want is to live in your full motherhood and not as a caregiver, too. not too much to ask, my friend. not at all. 

knowing i'd be mostly stuck indoors for the next day or two, i laid awake imagining travels, like my next back-roads adventure, a bike ride to the rise where i can see the salt marsh meeting the sea, hearing that hermit thrush croon, rolling up my jeans and wading into the bay at simpson's point, running the shaded trails on a gorgeous morning like today. most of all, receiving love and compassion from friends and strangers along every path i take.

on the road again

After several days stuck indoors, we got on the road again. It was a good day. Calvin woke up happy, ate well, smiled plenty, laid in my lap calmly in the heat and humidity. On our ride, I saw the Carhart Man with two of his dogs. I pulled over and introduced myself. Told him about Calvin and our year-plus of back roads travels. In asking about his third dog, he told me he had recently buried it. At seventeen, it had finally given up the ghost. I expressed my condolences, then added my gratitude for his unwitting help in getting me through the damn pandemic with his grins and nods. He smiled broadly when he said it made his day knowing he had eased my way. People are good. So many are understanding and compassionate. Despite my troubles, I feel so fortunate.

As we continued on, Calvin remained content, having mostly recovered from three recent grand mals in two days' time. We drove along at a pace best for taking in the scenery. In a nearby field I saw little kids kicking soccer balls. From afar, I think I spotted the red-headed neighbor boy—not much older than Calvin—whom I've watched grow from a sweet little kid into a fine young man. My eyes stung and I tasted salt at the back of my throat seeing him shepherd the other children around. So many missed opportunities, I thought to myself, wiping one eye with the ball of my thumb.

Driving on, I noted the billowy, peachy-pink willows which are still in bloom, though fading soon. Discovered early hydrangeas blossoming like balls of popcorn in creams and blues. Saw massive stands of bright-orange day lilies flanking the road. Watched thick summer canopies of maple and oak wrestling with the wind.

I took the straightaways and curves slowly. I made an impromptu visit to a friend's house. She wasn't home, so I left her a happy face made of two sun-bleached oyster shells, a rock, and a banana-shaped leaf for a mouth. I stopped and watched a bay tossed into whitecaps by the gales. I saw a blue heron and one brave wader shoulder-deep in the sound. It was so good to get around. Good to get back on the road again. To get out of the house for a spell.

breakthroughs on a somber day

again, my mood is somber, reflected in the sky's leaden heaviness. weighty as a handful of stones in my pocket. but like a cloudy sky, there are breakthrough moments of light. little bits of levity, like when i pick up a sleek and clean smellie from the groomer and she goes cutely berserk. or when my husband comes home early. or when i see the space open up as i chop down a sickly, old, monster rhododendron, and michael finishes it off with woody's chainsaw—so much possibility for something beautiful to take its place. something less beastly and oppressive. something i don't have to wrestle. something that doesn't burden me like my son's ongoing struggles.

lately, sorrow has been setting in as i'm reminded of how calvin, who is seventeen, should be a rising senior in high school—should be looking into colleges, reading interesting and complex novels, mowing lawns, hanging out with friends on the town mall or bowdoin quad, leaping off of piers and low bridges into brackish waters. instead, he's chewing on a crocheted rabbit rattle, having his hand held while walking down the sidewalk, tossing his sippy cup sideways like a toddler, playing with baby toys, being potty trained, wetting diapers.

several of my friends and acquaintances have kids his age. they're so grown up. independent in nearly every way. they've got futures as bright as breakthroughs of sunshine and blue sky in a bank of dark clouds—hopeful, sparkling, limitless. witnessing them is lovely, yet, like bittersweet lozenges, hard for me to swallow.

and as the pandemic has slackened a bit of its grip, i feel surprisingly unmoored. as the tethers are loosened, i'm not sure what to do. i find myself flailing. it's a strange mix of emotions. free and yet still imprisoned by my son and his condition. and while my husband made plans to visit italy this fall to print his next book (having photographed in paris and hawaii several times in recent years) i find myself wondering how i'll get through today, tomorrow, and the day after that. wonder where i'll be or have traveled, or what this normally-prolific self will have accomplished in two, five, ten years. nowhere? nothing? same old same old?

and i'm missing the handful of folks who unwittingly helped ground me during the pandemic. familiar strangers—the runner(s), bikers, strollers, dog walker(s)—smiling, nodding and waving to me from the roads. faces i look forward to seeing. lives i can only imagine and live vicariously through. haven't seen them lately. like a starless sky, without them i'm having trouble navigating through the pandemic's rough and receding seas. other than my husband and son, and the landscape itself, they've been my constants this past year, like little beacons or shards of light in a darkened sky. saw them much more than my own friends, though from afar. without their grounding, i feel as though i'm drifting from shore. and though i'm a pro at treading water, i feel slighly seasick. but perhaps, like stars on a cloudy night, they're not reliable. and why should they be? i'm nobody to these strangers. we all have our own lives and loved ones and struggles. and yet i remain eternally hopeful for communion, compassion, friendship, empathy, understanding.

today, however, on a favorite stretch of wooded road, i saw the black-clad couple (though this day wearing more earthen tones) who live on the point. i slowed and pulled over. rolled down my window and introduced myself. while trying hard not to choke up, i told them how i'd seen them frequently while driving the same roads nearly every day during the pandemic with my nonverbal, legally blind, autistic, epileptic, seventeen-year-old boy. they peaked in on calvin, who was in the back seat craning hard to find an absent sun. i told them how reassuring it was to see the familiar faces of strangers like them during months on end of long, lonely days spent solo with my son. they said they recognized my car. i'd seen them wave. the three of us visited for quite awhile, discussing neighbors and kids, drugs and doctors, the pandemic and back roads. i invited them to read my blog. it felt good to finally meet and connect with folks who have unwittingly been my mooring during a very difficult year. felt healing to offer them my gratitude in person. i wish i could have hugged them. they seemed quite affable and open.

finally, we said our so longs, and as i put the car in gear and headed to the point, i felt the sun's warmth and saw its rays start breaking through cracks in a vast bank of clouds reflected in a tranquil sea.

weather, scene and mood

Since Calvin went back to school, I've sorely missed my morning drives. Miss my adopted lonely back roads and familiar faces of strangers. Miss the nods and smiles and waves of bikers, dog walkers, runners. Miss seeing the wild turkeys, hawks, and jays.

The Kid and I went for a drive yesterday. Since last time, the landscape I've grown accustomed to has changed. Trees are fully leafed out now. Some streets have been repaved. The tangled, citrus-tinted azaleas I discovered last June on Bunganuc bloomed again. It's nice revisiting and remembering them. Recalling the start of my yearlong love affair with the road—its hills and dales, movement and nuance—feels good. Nostalgia of a certain time and place is alluring. What a curious and inviting thing that is.

Summer arrived too soon. Ninety-degree days, mugginess, bugs, and biting spiders. Rhododendron and azalea blossoms melting in the heat. Clouds of pine pollen hanging thick like smog. Sun-lit particles drifting sideways in the wind. Yellow blotches and puddles forming on leaves and streets after a rain. Everything looks dusty and a little bit strange.

My in-laws arrived from Florida. It has been two years since we've seen them. To have them here is sterling. I hope to show them the back road scenery in the next few days. Drive them to my favorite places. Ride the rises and hollows. See the vistas and bridges, the spots that, along with writing, have kept me (mostly) sane during this rampant and endless pandemic.

Yesterday, bunches of little kids were riding their bikes to Simpson's Point. Seeing them felt bittersweet (Calvin and I miss so many of life's pleasures.) A handful of bathers waded out and dipped their shoulders into the shallows of the bay. The scene looked like a picture from olden days—folks in swimsuits and sunbonnets just cooling off when there's no comfort in the shade—like back when I imagine life was simpler. Something about the pandemic took me there, too. To a simpler time and place of few distractions. Just weather, scene and mood.

Simpson's Point

war zones, torture, and safe havens

I've heard it said that sleep deprivation and the recordings of crying babies are used as torture on prisoners of war. Having survived both for seventeen years, I have every reason to believe that's true.

Monday was gorgeous. Blue skies and plenty of sun. No breeze to speak of. Trees leafing out in apricots and greens. And yet melancholia had its grip on me as it does when things begin to feel hopeless, which a string of not-so-good days for my son can do to me.

Calvin's behavior has been an ongoing test of my emotional stamina. I guess that's nothing new. I suppose it's the cumulative years of hearing him moan and shriek and cackle madly that makes life with him at times so hard to bear. I'm no veteran of actual war, but I wonder what being Calvin's mother has done to me—the war zone of sleepless nights, the shell shock of repeated seizures, the dread of the next attack, the enduring din of his misery, the relative inability to quell his unrest, the fear of him succumbing to the enemy. Since Calvin's epilepsy diagnosis when he was two, I've become slightly jumpy. I'm tighter than I used to be. I'm sometimes prone to the rapid-firing of expletives. I have nightmares about him seizing. I both love and resent my little captor. I imagine escaping this imprisonment. I wonder how he endures his own.

And other things trouble me. Like the moment when I turn my back and Calvin crams half an over-ripe banana and some of its softened skin entirely into his mouth. Like so many other items—twigs, grass, rocks, the rubber stopper and metal catch in the bath—my heart pounding, I fished it out. Like a foot soldier, I'm forever at a heightened state of awareness, can never let my guard down in case of an ambush.

And there are times like today when Calvin won't stop carping like some wounded thing caught in a trap. Nothing I do helps. I'm sure it's because a seizure is on its way. Nevertheless, to hear him is torturous, and so too is feeling this mix of pity, self-pity, despair and contempt. It's times like these that feel so dark and bleak inside, even when the sun is out.

So Monday, after putting Calvin on the school van, I went for a drive by myself. I drove west on some back roads which I hardly travel along. At the top of one rise I was able to see for miles—a rarity in this landscape. It made me recall the steep, high hills and myriad vistas of my beloved San Francisco—so many chances to see distant horizons, whereas from my current vantage point there seem so few. I let the winding roads rock me. I turned on the radio to listen to some tunes. I switched between stations until I found songs that moved me; I so want to be moved.

Back at home, before Calvin returned from school, I spent some time in the garden working the earth, meticulously shaping nature—mowing, planting, weeding, pruning. Gardening is a natural elixir for the helplessness I feel from having so little control over my son's condition. By noontime, my melancholy was gone, having been evaporated on the roads and dissolved into the garden—two safe havens from the torture of my kid's war-torn condition.