caution to the wind

Despite trepidation, Michael and I made a rare one-night escape upstate with Calvin and Smellie. It had been over seven years since we'd made such a trip, heading north into the lesser-traveled parts of Maine. Though we used to explore a lot when we first moved here, we've done so only a few times since Calvin was born, mostly because of his seizures. Now that he is older and bigger, another concern is finding a safe place for him to sleep without fear of him getting hurt.

The height of leaf-peeping season, the colors in the hills were as dramatic as I think I've ever seen. Photo ops were afforded in every direction. Amid the vivid autumnal colors, placid Mooselookmeguntic Lake shined like molten silver.

Three hours after our departure, we settled into Idle Hour, a rustic lakeside cottage a stone's throw from the Bald Mountain Camps restaurant lounge where we were able to get glasses of bourbon on the rocks, take-away. A young woman seated at the bar surprisingly paid for our drinks, telling me that it was her day's random act of kindness. I'm not sure she realized how much her gesture meant to me.

Back at the cottage, while seated for minutes at a time on a futon and in Michael's lap, or in his johnny-jump-up which Michael rigged to a railing, Calvin passed the time contentedly as a fire in the wood stove crackled and popped. As usual, Smellie didn't venture far, even with the lure of the lake nearly at our feet.

At twilight, we eventually managed to settle Calvin into the middle of a squeaky queen-sized bed, propping a half-dozen heavy pillows around him. Michael began making his magic in the bare-bones kitchen, producing a perfectly cooked herb-encrusted rack of lamb, mashed potatoes sprinkled with some black trumpet mushrooms our friends had home-foraged, plus sautéed skinny asparagus. Thanks to the mild weather, we were able to dine on the porch with the door open, jumping up to check on Calvin every so often. After we finished our meal, an affable bloke from the cabin next door brought us several delicious barbecued scallops wrapped in apple-smoked bacon for dessert. He had visited us earlier and had asked about Calvin, his diagnosis and prognosis. Years ago we might have been incensed at such questions. These days we appreciate any genuine interest in our peculiar boy, even from strangers, particularly considering so many people gawk at or ignore Calvin, and some of my five siblings rarely ask how he is doing.

Before retiring to bed, I took Smellie for a short walk and noted the full moon rising in the mist over our heads. I wondered if Calvin's intermittent shrieking during the drive up had been due to the moon's gravity, wondered, too, if it were an omen. The grand mal at five o'clock the next morning—only four days since the last one—validated my concern. But regardless of Calvin's seizure, which was typical and self-limiting, requiring no emergency care, our adventure proved to us we should throw caution to the wind more often.

click on any photo to enlarge.

reason, purpose, meaning

Thousands of acorns, some crushed. A wad of squashed gum under my sneakered foot. Red leaves with yellow spots and brown edges. A blanket of bronze needles. A pair of broken sunglasses. A dime. An unopened bottle of beer resting on a granite bench. Bird nest with plastic ribbon. Dead squirrel from Nellie's mouth. Plastic bag. Chapstick. Puddles and shards of glass in which I can see myself.

These are the things which, in recent days, have come across my path, or I across theirs; I'm unsure which is the truth. Were they put there for a reason by some divine hand, like some would say is true of everything else? Or did they land there randomly, awaiting others to assign them some purpose or meaning? I'd say the latter.

I remember a conversation with a sibling's in-law long ago. He told me that god put my son Calvin on this earth in his regrettable condition—legally blind, nonverbal, incontinent, cognitively and physically disabled, racked by uncontrolled seizures—so that I could learn something about myself. My face became hot. My heart began to pound. I shut that conversation down as hard as I could:

"I wager you'd feel differently if you had a child like Calvin and saw him suffer every day of his life."

Thankfully, the man shut up.

My son seizes weekly. Yesterday, someone sensitive and with insight, asked me tenderly if his seizures hurt him. I told her they likely did. The spasms cramp and rack his body. His heart races. His breathing shallows. His brain's neurons and his body's muscles march in gruesome unison. He often bites his cheek until it bleeds. I imagine viscous headaches plague him. The other kind of seizures seem to sometimes scare him. I see a petrified expression creep across his face. I've been told by someone with epilepsy that her seizures were terrifying and that she felt as if she were being choked to death. Is this the work of a merciful god? No, it's not. Am I worthy of my son's suffering? No, I'm not.

Yet acorns get eaten by squirrels about to get their necks snapped in the jaws of a dog. Gum gets stuck to sneakers and travels to distant places picking up all kinds of disgusting stuff. Autumn leaves get pressed into scrap books. Pine needles tamp down underfoot. The owners of broken sunglasses are imagined. Coins are passed to endless palms and pockets. Beer gets drunk. Bird nests get burned. Plastic bags go on to hold poopy diapers. Chapstick gets neglected there on the sidewalk. Puddles and shards of glass reflect my tired face, nearby trees and ever-changing skies above me. Some things are given meaning and purpose; others, not. Calvin inspires love and affection, makes those who meet him better people. But he, in his suffering, is no pawn of some so-called merciful god, and yet he gives me purpose, and yet his life is meaningful.

old self, new self

i want my old self back. the optimistic me instead of the worst-case-scenario one i'm sometimes told i've become. i want back the energetic, ambitious, hopeful soul. instead i feel puffy, tired, lost, sometimes melancholy.

i want my old self back, including hair which used to grow thick enough to lie on strong shoulders. i'll take back that hard body, too, the one which my friend robert once said felt like a dolphin, the one with the flat belly which i'd proudly take to the nude beach to go body surfing, the one that could run an eight minute mile with little problem and swim one-hundred yards in less than a minute.

i want my old self back, the one who could sleep in past six or seven, who was untethered, who didn't have a sick kid dictating nearly everything. I want my old self back, at least parts of her, like the part who didn't worry much, who looked at each day as a new opportunity, who dreamt of what life had in store.

but last night and today, i see parts of my new fifty-six-year-old self that i like: the friends i've made, the ones i've kept, the things i've learned about love, politics, race, justice and equality. i get to walk in a magical garden of my making while smelling the fire that's been made for me in our wood stove. i get to write long and hard and daily sometimes. i get to listen to the police and pink floyd and FIP. i get to drink gigondas and côtes du rhône and nibble on goat cheese that is out of this world. i get to gobble huge pieces of a friend's homemade carrot cake with crystalized ginger in its cream cheese frosting alit with silver sparkling candles that resist being blown out. tomorrow i get to celebrate nine years of writing this blog, which has been fulfilling beyond words. i get to look out every single window of this old house and see gorgeous fractals of green and bronze and red nearly every month of the year. i get to hang with my son and husband hugging and smooching. i get to make eggs and toast for my babies. i get to gather with my favorite homies drinking bourbon and wine and eating michael's ridiculously delicious food and laughing until i cry. i get to miss the ones who live out west and south and east. i get to drown myself in art and music and nature when time affords me.

so, on second thought, i guess i don't want my old self back. this one, though not necessarily more traveled mile-wise, is more worldly thanks to calvin and maine and age and the wicked smart people who surround me. and as i listen to pink floyd's sultry us and them, it seems to sway the pines outside my window at twilight, and beat with the pitter patter of calvin's footsteps in the upstairs bedroom with michael.

and so i'll take this new self, this self who still wears ratty jeans and adidas stan smiths, who has beloved in-laws and siblings who love and think of me and calvin and who, despite the clusterfuck that is my life, nevertheless resembles the old self and is still excited and hopeful for the future, whatever it holds.

Photo by Michael Kolster

in case you didn't know

Epilepsy can kill. It kills our children, our parents, our grandparents and our siblings. It is not a benign disorder for which you take a pill and everything is okay.

Epilepsy affects over three million Americans of all ages, as many as 300,000 of whom are children under fifteen.
Epilepsy affects more people than multiple sclerosis, cerebral palsy, muscular dystrophy, and Parkinson’s disease combined.

About 200,000 new cases of epilepsy occur each year and it is estimated that up to 50,000 people will die every year from epilepsy or seizure-related causes, such as drowning. These numbers are nearly identical to breast cancer and yet epilepsy is still an obscure disorder to most people. Epilepsy is stigmatized, misunderstood, feared, overlooked and grossly under-funded.

Those who have epilepsy and are lucky enough to have their seizures controlled by medication suffer drug side effects which can be debilitating and sometimes lethal. Side effects include dizziness, headache, nausea, poor coordination, visual disturbances, trouble with balance and gait, insomnia, drowsiness, confusion, abnormal thinking, fatigue, hyperactivity, agitation, aggression, depression and suicidal ideation, just to name a fraction.

Those who don't benefit from medication risk brain damage, cognitive decline, hospitalization, exorbitant medical bills and sudden death.

Quick facts:

• Epilepsy affects 65 million people worldwide.
• Epilepsy affects over three million Americans of all ages, just over one in 100 people. Over 300,000 school children through age 15 have epilepsy. Almost 500 new cases of epilepsy are diagnosed every day in the United States. 
• In two-thirds of patients diagnosed with epilepsy, the cause is unknown.
• One in twenty-six Americans will develop epilepsy at some point in their lifetime. 
• Epilepsy can develop at any age and can be a result of genetics, stroke, head injury, and many other factors.
• In over thirty percent of patients, seizures cannot be controlled with treatment. Uncontrolled seizures may lead to brain damage and death. Many more have only partial control of their seizures.
• The severe epilepsy syndromes of childhood can cause developmental delay and brain damage, leading to a lifetime of dependency and continually accruing costs—both medical and societal. 
• It is estimated that up to 50,000 deaths occur annually in the U.S. from status epilepticus (prolonged seizures), Sudden Unexplained Death in Epilepsy (SUDEP), and other seizure-related causes such as drowning and other accidents. 
• The mortality rate among people with epilepsy is two to three times higher than the general population, and the risk of sudden death is twenty-four times greater. 
• Recurring seizures are also a burden for those living with brain tumors and other disorders such as cerebral palsy, intellectual disability, autism, Alzheimer’s disease, stroke, multiple sclerosis, tuberous sclerosis, and a variety of genetic syndromes.
• There is a strong association between epilepsy and depression: more than one of every three persons with epilepsy will also be affected by depression, and people with a history of depression have a higher risk of developing epilepsy.
• Historically, epilepsy research has been grossly under-funded. Federal dollars spent on research pale in comparison to those spent on other diseases, many of which affect fewer people than epilepsy.
• For many soldiers suffering traumatic brain injury on the battlefield, epilepsy will be a long-term consequence. 
• SUDEP: SUDDEN UNEXPECTED DEATH IN EPILEPSY FAQs

David Beauchard, illustration from his graphic novel, Epileptic

overnight in september

Overnight, autumn arrived. The wind chilled, leaves turned rose and yellow, pine needles and temperatures fell. Overnight, Calvin suffered his sixth grand mal of September. In addition to those, he had two focal seizures, totaling eight for the calendar month. And though one seizure is one too many, I'll take eight over August's fifteen.

As I look out over the garden, now dark and damp after last night's rain, I remind myself that Calvin, though he continues to have reliable seizures, rebounds from them so much better. Gone, it seems, are the hours he used to spend perseverating, hyperventilating, fingering, heart racing in the wake of a grand mal. He—we—would often be up for hours unable to settle, and deprived of most precious sleep.

Seated in my creaky wooden chair, I regard the gangly lilac trembling in the wind outside my window and I think of Calvin who has grown so much since June, his limbs long and lean, his gait often unsteady as if he could be toppled by a breeze. Amid these weekly and biweekly seizures, I console myself knowing he is on far less pharmaceutical medication than in recent years, and yet not suffering a huge, sustained uptick in seizures. I just wish we could find a way to lessen them to the level he had (half a dozen to none) when he was on enormous doses of three powerful antiepileptic drugs, without suffering the unbearable behaviors those drugs caused. Even then, his number of seizures reliably crept up each month until we increased his medication, leading to a vicious and unsustainable cycle.

At times, on good days, I see glimmers of a more normal child in the gaze of his sky-blue eyes. I keep hoping, as he gets older and stronger, Calvin might outgrow his plight, just as robust plants are less susceptible to disease. Or perhaps the epilepsy will go dormant, like what happened to some trees as if overnight in September.

Photo by Michael Kolster

what calvin sees

Our fifteen-year-old son, Calvin, has ocular and cerebral visual impairments. His eyeballs are quite elongated, causing his blurred vision, and the lack of white matter in his brain likely may affect the speed and manner in which images received by his retina are sent to his brain. People with 20/200 vision are considered legally blind; Calvin's vision without glasses is 20/1000. With glasses, Calvin's vision is estimated to be somewhere between 20/100 and 20/130, though it is difficult to know for sure.

Yesterday, I saw these gorgeous oil paintings made by Philip Barlow, depicting how visually impaired people might see their surroundings. Of course, I thought about Calvin, and wondered if this is how he sees the world.

click any image to enlarge.

Oil paintings by Philip Barlow

game changers good and bad

coming of age in san francisco and all i left behind there. michael. maine. marriage. devastating sonograms. hospitals. emergency cesarean. calvin. essential and unnecessary intubations. grief. relentless seizures, including this morning's, the forty-five- and twenty-minute ones. antiepileptic drugs and their side effects. benzodiazepines and their heinous withdrawal (calvin). loss. acute and chronic sleep deprivation (mine). diapers that fit (calvin). honesty. turning off the bed-stand baby monitor. tenure. finding a voice. partner doctors. conceited ones. despair. writing daily. palmetto harmony CBD oil. mothers and fathers of other kids like ours. curaleaf bud and homemade THCA cannabis oil. kick-ass nurses. washable bed pads. angst. the love of a child. onesies. attentive, understanding, open, reliable, responsible school staff. sabbatical. smellie the wackadoodle. the kindness of strangers. gratitude. less medicine rather than more. tenderness. slow cookers. slow-cooker chef-hubby. every single dinner he fixes. state medicaid. the ease of small towns. patience. good cries. walks on the beach on days like the autumnal equinox.