red wine and adrenaline

her hair fell in wet, ropy waves over her shoulders. having just emerged from the water, she looked like a mermaid in the filtered gleam of a waxing moon. earlier, before sunset, a great blue heron had flown over. she said it was a good omen. so too, i thought, was the double rainbow which had arched in the northeastern sky from amid a bank of pines. 

we picnicked atop a slope overlooking an inlet. the smell of cut grass and cows drifted across our table. we splayed out a feast between us—baguette, homemade pesto, purple heirloom tomatoes, triple cream and goat cheeses, green olives, dry salami, salt. we drank red wine from clear plastic cups. exploring the nuance of everything, we talked about the pandemic, the variants and vaccines. we spoke of our children and about the saintliness of them. we laughed and chatted for hours, catching up on eighteen months of each other's news.

as the sun began to sink into a cloudy horizon, it glinted gold and silver. well sated, we left our provisions behind and, drinks in hand, began strolling around the nearby campground. we passed a man propped against his trailer singing and strumming his guitar. kids were riding bikes, playing tag and squealing. though dusk began to fall just as our path veered into the trees, we decided to keep going. as she stepped into the shady wood, the orange sun set her aflame. she was glowing.

the path led us down to a tiny lagoon where the pink clouds reflected in its pool. we continued on, passing more tents, trailers, cottages, and one yurt skirting the inlet. by the time we hit the dirt road near the farm, the sky had darkened and the rising moon shown through the clouds. we had walked nearly two miles. back at the picnic table, we gathered our things then tiptoed down the dewy hillside to put them in the car. our last stop was the wooden bridge spanning a narrow tidal inlet. she told me of her plan to jump from the little platform built on the back of the guard rail. she'd done it countless times before. years ago, i'd seen teens launch themselves from it on hot summer days. it looked to be about ten feet above the tide. in the ensuing darkness, the sun's warmth still radiating from the wooden planks and railings, she began undressing until she was just in her skivvies. in a blink, she leapt and disappeared into a froth.

upon surfacing, she exclaimed how magnificent the water felt, adding that it was not too cold at all. i trusted her. she wanted me to jump. only problem was that i was going cowboy (aka, commando, for you east-coast types) and two folks were approaching. but it was sufficiently dark, and she offered to shield me with her towel. i climbed over the railing, peeled off my shoes and socks, t-shirt and jeans until all i had on was my chambray bra, then i stepped to the edge. she assured me the water was deep enough to leap. i had every reason in the world to believe her, and i had leapt off of cliffs and bridges and diving platforms as high as thirty feet before.

flying through the air, crashing into the water, having it envelop me like a liquid glove, felt exhilarating. it had been years since i'd been in it. salt filled my mouth and stung my eyes, reminding me of summer vacations to pacific northwest beaches as a kid, and of body surfing at beaches in san francisco, hawaii, kenya, tanzania, and swimming in the waters off of turkey and brazil. the tide was strong, but not as strong as i, so it was easy making leeway to the rocky bank, which i then scrambled up, dripping with sea water.

back on the bridge, i toweled off as both of us smiled and giggled about our adventure. we walked barefoot to the car laughing so hard we could have wet our pants—that is, if we had any on!

on the drive home, windows open to the sultry air, we splashed through puddles from an earlier rainstorm which had completely missed us. the white eyes of a baby raccoon peered into our headlights from the shoulder, and a tiny frog leaped across the road. i was smiling inside and out. it had been one of the nicest evenings in recent memory, if not my entire life—a magical one, really. for the most part, i'd forgotten about calvin and his (our) miseries. forgotten about imposed limitations. forgotten about stresses and pandemics. and as we hugged goodbye, the afterglow of red wine and adrenaline still pulsing in our veins, we promised to do it again.

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. 

mad about you

i'm mad about you. mad about those sea-blue eyes, your smile, and the little crescent dimple it makes. i'm mad about the way you look into my eyes when we're right up close. i'm mad about the way you hold my head and touch my face. i'm mad about the way you send me reeling. mad about the way you deepen all my feelings.

i'm mad about you. mad about what happened. i'm mad about the way the seizures and the drugs waste and rule you. mad about your suffering, your deficits, your mania, your biting and banging, your drool. i'm mad about the fact you can't speak. mad about the way you wail and shriek and moan. mad about where you send me when it's to a place i loathe.

i'm mad about you. mad about the way you age me. mad about the way you wake to slay me. mad about the way you box me in and limit me. mad about the way you consume me. mad about the way you can never leave me be. mad that i can't leave you, either.

years ago, in tears, i called a friend, searching for a trusted someone with whom to share my woes. at first she listened. then she made the claim—perhaps meant to ease my state—that the universe tries to find equilibrium. and though it's noble hoping, i'm fairly sure that isn't true; rather (thinking of calvin) random chaos rules. she hinted at my anger since your birth, then went on to speak of acceptance—of you. i told her i was capable of holding both emotions. later, in a message, she wrote:

my intent is unwavering, which is simply to love and support you.

i replied:  

i know. xoxo

that was the last i heard from her. funny how some people's universe works.

i accept you. yes. i'm mad about you, too. mad about the way you make me swoon. mad about your soft skin and freckles and locks of auburn hair. i'm mad about the way you make me laugh and rage and fret and weep. mad about the every way you make me think and feel and dream.

many moons ago.

wicked mix

The call came in at 7:33 p.m., just as we were wrapping up dinner. Mary's voice was quavering on the other end of the line. I knew Calvin had had a seizure in her care. I felt sorry for all of us.

Michael had already paid the bill, so we and a friend were able to exit our picnic table and jet the nine miles back home. It had only been four days since Calvin's last grand mal, which was just four days after the previous one, which was only six days after having had three in thirty hours. In all, he's had nine grand mals in a month's time. That's nine too many, even among thousands of them in his seventeen years.

I'm not sure what is going on. Perhaps Calvin's epilepsy is progressing, having never been snuffed out. Maybe he has outgrown his Keppra dose or maybe it is making things worse. What if the THCA cannabis oil I've been making for nearly eight years just isn't hacking it anymore? Epilepsy is wretched. It's a moving target. Options are few and unattractive. Having mostly forsaken pharmaceuticals since so many have failed him, it seems they may be the only thing left to try—again.

One of the drugs we are considering is called Fycompa. It is one of the few antiepileptic drugs specifically listed for treating tonic-clonic (grand mal) seizures. Like all other anti-seizure drugs, its side effects are wicked; the list is long, and some of them can be dangerous, even lethal. Moreover, since Calvin can't speak, it's nearly impossible to tell if he suffers many of these:

headache, dizziness, drowsiness, anxiety, lethargy, irritability, nausea, vomiting, stomach pain, bruising, weight gain, loss of coordination, hives, difficulty breathing, swelling of your face, lips, tongue, or throat, skin rash, fever, swollen glands, muscle aches, severe weakness, unusual bruising, jaundice, mood or behavior changes, fear, panic attacks, trouble sleeping, agitation, hostility, aggression, restlessness, hyperactivity (mentally or physically), thoughts about suicide, severe dizziness, vertigo, lightheadedness, trouble walking, loss of balance or coordination, feeling very weak or tired, accidental falls, memory problems, confusion, hallucinations. 

No one would want to put their child on these kinds of drugs, but the alternative could be just as ugly. Calvin has tried nine antiepileptic pharmaceuticals—at one point taking a high-dose, three-drug "cocktail" (I hate the use of that descriptor)—starting when he was just a toddler. None of them worked to stop his seizures, and yet he has suffered both short-term and prolonged side effects. I have little doubt the drugs—especially the benzodiazepines—ruined his developing brain, causing permanent problems beyond the neurological anomalies present even before his birth.

So, before we reconsider another pharmaceutical drug, I think I should try reducing his Keppra. That may seem counterintuitive, but most antiepileptic drugs have the potential of exacerbating seizures, and it's probably not that risky since he is having so many seizures anyway.

If I sound exhausted, even peeved, it's because I am. At the moment, I'm not up, but I'm not down, either. I'm just in a kind of daze of feeling hopeless and lost. That's what having a child with epilepsy does to a parent.

But for now, Calvin is content hanging out with his us while recovering from yesterday's seizure. Later, a friend is coming over to shoot the shit around the fire pit with us. We'll tell funny stories and jokes, and I'll laugh until I cry in a wicked mix of emotions knowing that, despite our troubles, somehow we'll get by.

running for it

saturday:

it's half past ten. just trying to get some sleep. there's a dense lump of tension, like a fist, lodged in my solar plexus. it feels electric, like it's vibrating through my entire being. its source is a mix of exasperation, helplessness and dread. sadly, it's all about calvin, who is out of sorts in the wake of two epileptic fits. he keeps banging the wall behind his bed. all i want to do is make a run for it.

calvin has had eight grand mals in thirty days. that translates into about half the month spent sleeping on me and the couch. i wonder what else i can do about his epilepsy. so exhausting living with it. today i switched his cannabis oil from hybrid to indica, hoping it might offer him some respite. he's pretty spacey, but that's typical the day after a tonic-clonic. my next move is to reduce his keppra. my gut—and a calendar marked up with orange highlighter and black sharpie indicating seizures—tells me the keppra isn't helping.

this tension i feel is cumulative. seventeen-and-a-half years of it. i often wonder what havoc it might be wreaking inside me. it's why i sometimes feel the need to scream. have to let it out so it won't devour me. or seat itself as a cancer in my organs, bones or blood.

in a move to ease my angst (and get in better shape) i started running. got new shoes. ran three days last week. took a longish, back-roads bike ride. the accomplishments were nothing to speak of. pretty meager efforts, really. still, i'm hoping they will stick.

i wonder if running might serve as some escape—from a stressful life with a messed-up kid. from being pent up and stuck. from the gnawing sense of dread.

perhaps running makes me feel more alive—my limbs and lungs pumped up with blood and breath.

or could it be i'm chasing something? a different vista? an extended moment all to myself? the dream of better days to come? some serendipitous adventure? a challenge other than handling my son's severe and complex conditions?

after today's modest jog on the trails around the soggy fields, the fist inside my chest had dissolved. i plan to run again tomorrow. with a bit of luck, i'll see some sights, and chase away some troubles, angst and sorrows.

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.

too good to be true

These are the kinds of days I dream of, but alas, none of the following is true:

this morning, to my utter disbelief, calvin said the word, "mama" for the second time in his life, having first said it when he was just eighteen months old, before the seizures and the drugs meant to stop them began. it really came out of nowhere. hearing him say it was nothing less than astonishing. then, he proceeded to get out of bed all by himself; we've been working on that skill for awhile and it seems to have finally paid off. his balance was so good we didn't have to spot him coming down the stairs, and when he sat down for breakfast, he used a spoon to eat his yogurt without any help at all! moreover, he didn't cough or sputter while eating or drinking, nor did he toss his sippy cup on the floor like a toddler; he set it right down on the table like we've been teaching him for fifteen years to do.

after breakfast, he clearly signed "all done," brushed his teeth pretty well by himself, and got into his johnny jump up without much help at all. the day started out as one i'd describe as too good to be true.

recently, we stopped giving calvin his only pharmaceutical, keppra. maybe that is why he is so calm. he even sat in michael's lap for a good long time while being read his favorite board book, barnyard dance. for the good part of an hour, calvin played happily with his toys in the corner of the room. not once did he try to bite the bookcase or stare at the sun, so we were able to leave the bookcase uncovered and the shades up, enjoying the morning light streaming through the windows.

the reason we stopped giving calvin his keppra is that we wondered if perhaps it might be exacerbating his seizures. since his last dose, he hasn't had any signs of looming ones—no eye poking, no shrieking, no manic episodes, no intensity, no restlessness, no spaciness, no nothing. just a calm, happy kid with excellent balance and focus. he stopped drooling, too! it's unbelievable. 

this morning, the weather was gorgeous, sunny and in the low seventies, so we went outside. i was amazed that calvin walked independently around the yard touching the flowers, trees and shrubs without trying to eat them, then plopped himself down on the grass to rest. not once did he crane his neck to stare at the sun or put handfuls of twigs, mulch or grass into his mouth. this allowed me to get a bit of pruning done, knowing he was safe without my constant watch. he even pet smellie who came up and laid down next to him.

perhaps the most striking and welcome observation of the day has been how happy, calm, and lucid calvin seems. perhaps that's due to the lack of drug in his system or the absence of seizures. in any case, i'll take it!

And though none of what I just wrote is true, I'll keep on dreaming.

Photos by Michael Kolster

freedom to me

freedom to me is to dance with reckless abandon. freedom to me is a good night's sleep. it's a stroll by myself down the street. it's the time and space to think and read and write and dream.

freedom to me is to be understood. to get to know and embrace different people. freedom to me is a place to call my own, knowing it isn't really mine at all—the beach, a wooded trail, a back road, a nation.

freedom to me is a stint without my son having seizures. it's a walk down the block without him balking. it's a day when he's unencumbered by the miseries which tend to stalk him. it's a week without him moaning and shrieking.

freedom to me is sipping from a mug of coffee or glass of wine in the garden. it's listening to music as loud as i want. it's having a spouse who loves deeply my crazy notions, jokes and idiosyncrasies.

freedom to me is to offer a big table. it's the ability to give. freedom means everyone has healthcare, can afford to pay their bills, live in safe neighborhoods. freedom to me is a place where people can love who they love, worship how they please—or not worship at all—live under a roof, have plenty of food, clean water to drink, a good education, body autonomy, safe streets. freedom to me is easy access to voting. it's living in a system void of all religious dogma, and a world without its extremism, bloodshed and sanctimony (people don't need religion to be good and do the right thing.) freedom is the right to peacefully protest inequality, bigotry, oppression and autocracy. freedom to me means democracy.

freedom to me is a big sky stretching over an expanse of sea. a vista. a view to the horizon. clean air to breathe. the feel of wind in my hair, rain and mist on my cheeks. 

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.