3.25.2019

nature nurture

After three weeks of seeing my son endure all but a handful of days with seizures, I stepped into nature. I find being alone in the forest, seeing and smelling the sea helps soften the edges of any angst I feel. Yesterday, I hiked an hour along a wooded path blanketed in needles and skirted by green ocean inlets where patches of sun filtered through the white-pine canopy. Upon emerging into a sloping, golden field, I got in my car and drove a few miles further south to the end of Harpswell Neck where the Giant Stairs have views to open ocean. Above me, the sky shown vast, blue and swept with clouds. Though we are still two months away from full foliage in this region, the skeletons of shrubs displayed their naked beauty.

My time spent outside on what was the first truly mild March day in Maine proved vitally restorative, because Calvin suffered his fifth grand mal of the month last night, only three days after a previous one. I think that the nature nurture I'd gotten earlier helped to cushion the blow of hearing my boy scream, seeing him stiffen and convulse, vomit and bleed, then whimper as softly and sadly as the lonely sound of wind creaking the trees.

3.24.2019

march madness

Eleven consecutive days. That describes the spate of seizures that started out this month. On sixteen of twenty-four days in March, my son Calvin has suffered at least one kind of event—grand mal, partial complex seizure or pain/night terror episode. My calendar is plastered in orange, blue and pink highlighter, plus black Sharpie, indicating the different kinds of attacks.

Earlier this month, because of the eleven-day series, I decided to increase Calvin's CBD oil by thirty-percent to see if it would put a dent in them. Nearly two weeks later, the seizures continued to occur on most days and, though the window is a small one, with each increase of Calvin's CBD, the number of days between grand mals appears to be shrinking.

Exasperated, I contacted the maker of Calvin's CBD oil and asked her for advice. She suggested I try a CBD reboot, which means removing all of his CBD for forty-eight hours, then starting back at the smallest dose that it was most effective. For Calvin, that means removing 145 mgs per day, then starting him back two days later at just twenty milligrams, the dose he was on last June when he went forty days without a grand mal. Hesitant of such an abrupt change, I opted first to reduce his morning dose from seventy mgs down to twenty, and his bedtime dose from 75 mgs down to forty, a dose he was on in November when he had the fewest seizures since last June. Yesterday, he was happy and calm, and last night he slept well. In a few days, depending upon what his seizures do, I may decide to do a total reboot.

In the last thirty days, Calvin has had five grand mals, eleven to thirteen partial complex seizures and one pain/night terror episode. It is his worst month-long period since October, and it is on track to be his worst month in over a year. It has left me despondent and wondering again if high doses of CBD can exacerbate complex partial seizures in him. We seemed to see this effect from a previous CBD oil.

Today, Calvin is a bit more amped up than usual. It is hard to know if his agitated behavior is due to the increase in Keppra that we did to account for his recent weight gain, or if it is because he is taking so much less CBD, or if he is already ramping up to have another seizure. Regardless of the source, his behavior is most distressing and, I guess, just the way epilepsy rolls.

Photo by Michael Kolster

3.23.2019

thank goodness

Thank goodness for waking up in the morning with the foggy memory of another dream set in San Francisco.

Thank goodness for sunshine on blistering, cold, windy days, for melting snow and ice, for the coming of spring. Thank goodness for rolling fires in the wood stove, and the sound of it creaking aside the unmistakable harmonies of Steely Dan.

Thank goodness for kick-ass nurses, for shaggy wackadoodles named Nellie, for my eighty-six-year-old neighbor Woody who pours me a shot of bourbon over rocks any time I show up at his door, then sits and listens to my meaningless prattle, and sometimes wipes my tears.

Thank goodness for wise parents of children stricken with seizures, and for an amazingly responsive, informative, kind, generous, smart mother who first made a cannabis oil for her child and now makes it for the rest of our kids.

Thank goodness for a scary-as-shit dystopian horror film that makes at least some of its audience think deeply about Us—about racism, privilege, poverty, oppression, slavery, walls and forgottenness in this crazy-ass, regrettable time in our nation.

Thank goodness for seizure-free days, and for my boy smiling at me when I walk in the door.

Thank goodness for good husbands, loving friends, in-laws who check in, brothers who call to talk. Thank goodness for the same salad I've made nearly every night for years (I kid you not) that always delivers (mixed greens hopefully including arugula, red onion, blue cheese, avocado, cherry tomatoes, croutons and Michael's special olive oil-garlic-mustard-red wine and balsamic vinegar-salt and pepper dressing.)

Thank goodness for the field of amazing, talented, thoughtful, progressive, intelligent individuals lining up with hopes to lead this nation to better things for all of us, not just for a select few.

Thank goodness for friends who love me from near and far, for ones who offer to stop by on nights when I'm flying solo, for ones who dream of me and Calvin and who take us to the farmer's market, for ones who come for coffee, who walk the dog, who join me at a bar or table, who see me grouse and yell but don't pass judgement, who make me laugh and cry. You know who you are.

My pal Woody

3.20.2019

love and light

I'm sending love and light to all of the sweet, innocent kids afflicted with seizures—the scary ones, the kind that hurt, the ones that cause broken noses, bloody tongues, face lacerations, the kind that make them feel as if they're being smothered. I'm sending love and light to the parents of these precious ones who have been cheated by no fault of their own.

I am sending love and light to Hannah, the mother of a little boy named Casey whose seizure I watched on video today and, when it was over, whimpered to his mother, "I don't know why." I wept hearing him breathe, watching his limbs stiffen and tremble and his hands cramp up. I saw my own son in his darling face and wondered if Calvin would utter the same sad words in the wake of seizures, if he could speak.

I am sending love and light to Lisa, whose daughter Emma has been crying for a week since a neurologist advised to reduce her daughters benzodiazepine too quickly.

I'm sending love and light to every mother and father trying their best to navigate the complex and enigmatic world of pediatric epilepsy while sleep deprived, spread too thin, despondent and anxious. I'm sending them strength to challenge and question neurologists. I'm sending courage to trust their guts in the face of doctors who cavalierly pile on medications, downplaying their side effects, aiming for seizure-freedom at nearly any cost, neglecting to consider quality of life.

I'm sending love and light to all the little ones who don't understand what is happening to them, and who have been robbed of a pain-free, care-free childhood.

              
Calvin coming out of a grand mal seizure, 2011

3.16.2019

hell and christchurch

Every so often a stranger, acquaintance, or even a loved one will tell me—usually referring to Calvin and his afflictions—that everything happens for a reason. Years ago, I used to kindly swallow my resentment that anyone would use the trope to justify my son's suffering as some sort of divine plan aimed at teaching me a lesson. Then, as my nerves steeled, I began to meet the notion head on.

Recently, I found myself fielding the topic with someone I am just getting to know. I expressed my rejection of the dogma and my disdain for organized religion. The conversation evolved quite civilly, as I questioned facets of the Bible and her notion of Hell. She was slightly hesitant to admit that, because I'm a non-believer, I will end up there someday. In other words, in the minds of some, Hell is still a real place where unrepentant sinners go, along with, I assume, the majority of the world's population who are Atheists, Agnostics, Muslims, Buddhists, Hindus, etc., even if they're good folks. We spoke a bit further on the subject of Jesus who, despite my secular bent, I think of as having been a righteous dude, someone who I wish more people, namely his followers, would actually embody; the world would be a better place, I feel.

For hours after our conversation ended, I thought on the subject of god and religion. I lamented the fifty Muslim men, women and children slaughtered by a heavily-armed White supremacist yesterday in Christchurch, New Zealand. I regretted some people's rejection that the POTUS is partly to blame because of his maligning of Muslims, vilification of immigrants, regular inciting of violence, and his refusal to denounce White Supremacy.

I was left with many (rhetorical) questions:

What kind of god turns a blind eye to these bloody atrocities? What kind of god neglects the suffering of children? What kind of god would pick one religion over another? What kind of god has such conceit as to damn his own children to eternal Hell simply because they don't accept "Him" as their savior? What about the multitudes of good people who lived before Christ existed, and the billions who may never have knowledge of him? And what happens to shithead Christians? Where do they go?

Pondering those questions about god, while the mist settled on the snowy field behind our house, the wind audibly pressed into the windows, my boy sighed from the room next door, I considered Nature—and came to the same conclusions I always do:

Not one who is merciful. Not one who is just. Not one I can or would want to believe in or trust.

The attack on the Muslim community of Christchurch, while disturbing, was not shocking to me. The White supremacists spouting hateful rhetoric against Muslims, Jews and People of Color are becoming increasingly emboldened to act on those impulses. Their enmity is stoked by bigoted, fearmonging leaders who like to call themselves Christians and who stand to gain from sewing this kind of division. I am once again reminded of the systematic murder of disabled and infirm adults and children like my son Calvin by Nazi's during World War II. Thought to be a stain on the Arian race and a burden to society, they were some of the first in millions of mostly Jews to be exterminated by Fascists under Hitler's rule.

This sickening ideology of White supremacy has never been eradicated. It simply goes from skulking under rocks and in pockets to brazen examples of hatred, violence and bloodshed. It is grounded in abject ignorance. Its zealots exploit baseless fears of other, using scapegoats for their own failings. And, as in the case of slavery and the subjugation of women, they often use God and the Bible as their grounds.

So, perhaps Hell is not a myth as much as it exists on earth in the form of disease, genocide, oppression, war, famine, rape and massacre. Ironically, we even find Hell in houses of worship, and in places with names like Christchurch.

Hands from Hell sculpture, Thailand

3.13.2019

good night

After a twelve-day stint in which Calvin suffered several suspicious events (possible seizures), two grand mal seizures, at least eight partial complex seizures and a two-hour pain/night-terror episode, I decided to increase his Palmetto Harmony CBD oil by nearly thirty percent. My gut and logic agreed that doing so was not very risky, and might serve to thwart some of Calvin's seizures.

Yesterday morning, after his newly increased morning dose, Calvin rebounded well after a grand mal and even went to school. After last night's increased dose, he slept soundly until about two-thirty, when he started getting restless. I laid him back down and covered him several times, but he kept sitting up. Finally, I switched on the light and was able to determine that his diaper was soaking, so I got him out of bed, changed his diaper and took his temp since he felt kind of warm. While doing this, he did not seem seizure-ish at all, and when I laid him back in bed he fell right back to sleep.

When Calvin woke up this morning at six, he seemed pretty good. I did not notice any suspicious behavior, no signs of partial complex seizures such as funny breathing, rapid heartbeat, grumbling tummy, pale skin, panning eyes, fingers in his mouth, or clammy hands. He seemed "normal" for the first morning in nearly two weeks!

This lack of seizure activity in the wake of a grand mal, and having significantly increased his CBD oil is promising. It tells me that the CBD oil is likely not the culprit in Calvin's recent uptick in seizures, though I need more evidence to be convinced. In any case, Calvin had a good night. And though I was awake for almost two hours dreaming of spring, of San Francisco, and worrying about my child, I ended up having a good night, too.

3.12.2019

risk vs. benefit

Despair is sinking its teeth into me again. After three months, each with "only" nine seizures, already this month Calvin has had at least one seizure nearly every morning, including two grand mals. To add insult to injury, last night he had another of his pain/night-terror episodes during which he writhes and screams and cries in bed for hours. I do not know the source of his misery. He cannot tell me what hurts. I have a hunch he might be suffering migraines, perhaps a latent effect from benzodiazepine withdrawal, but I've no way of knowing for certain. There is no soothing him. Acetaminophen doesn't seem to work. Extra CBD seems to lessen his suffering, but not always. In agony, he lunges at me, grabs and yanks my hair. Light flashes like lightening when he bops an errant fist into my eyeball. He kicks and bangs his head against his bed's panel, which I've padded with blankets and pillows to soften the blow. He's like a rabid animal, and I'm in the cage with him trying to save us both.

Finally at ten, after two hours of this misery, plus some acetaminophen and extra CBD oil, he fell asleep in my arms. But I was wrenched awake at 4:50 a.m. to one of his grand mals.

This month's unusually long spate of seizure activity perplexes me. Maybe I can chalk it up to his recent and significant growth in height and weight. Perhaps puberty itself is the culprit. I don't want to believe it is the CBD oil, but I cannot rule it out. I remind myself to avoid fear-based decisions, and to instead look to logic and instinct for guidance. If I consider what seem to be good side effects from increased CBD—better sleep, balance, mood, walking, appetite—and since I know its therapeutic range to be quite broad (between one and twenty-five milligrams CBD per kilogram of weight) I should not be fearful of increasing its dose, which currently is 3.7 mgs/kg of his weight daily, equalling 110 mgs CBD divided into two doses. 

I understand it is within the realm of possibility that higher doses of CBD or THC can trigger seizures in some individuals, but that is also true of antiepileptic pharmaceuticals. The difference, I believe, is that side effects from whole-plant cannabis are likely less harmful, if not beneficial. And so I must weigh the risks and benefits of raising his dose, and not let fear govern my decisions. Moreover, I will not readily submit that these extra seizures are my son's new normal.

So tonight, I will increase Calvin's CBD to seventy milligrams twice daily ... and hope at least some of them stay at bay. 

3.11.2019

love and trouble

Most evenings, sometime between five and six, Michael and I head upstairs with our son to listen to the nightly news before putting him to bed. I sit on Calvin's diaper-changing table and Michael gets into bed with him to cuddle while he chews on his toys. Last night we listened to a rebroadcast episode of This American Life, a two-part installment called Unconditional Love. It was one that I vividly remember hearing for the first time when Calvin, now fifteen, was just two-and-a-half years old. That time, Michael and I had been listening to the second half on the kitchen radio, Calvin perhaps already asleep upstairs, and I recall weeping as I heard a couple describe the trouble of raising their autistic boy.

At the time of that initial broadcast, September 2006, Calvin had not yet received his PDDNOS (Pervasive Developmental Disorder Not Otherwise Specified) diagnosis, a condition found within the autism spectrum. Seven months earlier he had been diagnosed with epilepsy. In August of that year, he had suffered the worst seizure of his life—a forty-five minute grand mal which did not initially respond to emergency medications, prompting us to believe he might die.

By that point in Calvin's life, while toddlers his age were running about, talking, playing with toys, using forks and spoons, our boy could barely crawl, was just beginning to take first steps, had failed three antiepileptic drugs, and was still being spoon-fed and drinking from a bottle. The parents in the episode described their very large teenage son who was often violent. His twin brother, who did not suffer from autism, described a household full of loud noises, fear and stress. The couple went on to relate their difficult choice of whether to put their son in a group home, and what happened next.

Listening to this episode again was timely. Recently, Michael and I have been talking a lot about where we might live once he retires in several years. We discuss returning to our beloved San Francisco, but we have so many questions about such an endeavor: Where in the city would we live? How could we afford it? Would Calvin live with us? Are there group homes there for people like him? What kinds of assistance and programs does the state of California offer people as afflicted as Calvin? After years of living in a relatively small, college town in the Maine suburbs, would city life be too stressful?

The thought of living back in the Bay Area is both exciting and troubling. Exciting for its mild year-round weather, its amazing public transportation, its proximity to the beach, the bay, the Marin Headlands, its diversity and openness, and for the cherished friends we left behind eighteen years ago. Troubling for all the reasons I listed earlier. The thought of putting Calvin in a group home is equally thrilling and petrifying. I worry about his seizures getting out of hand. I worry his medicines will be mismanaged. I worry staff won't change his soiled diapers, linens and clothes. I worry about neglect as well as predators who might abuse him. Mostly, I worry about who will hug and love him unconditionally like we do. But I know I can't go on taking care of him forever; at some point—hopefully not for another twenty-five or so years if we make it that far—Michael and I may be too feeble to handle him, and/or we may not want to. Once Calvin graduates high school when he is twenty, perhaps it will be better for him to be in an environment with more activity and stimulation than we can offer him at home.

For now, though, we'll keep on keepin' on. We'll traipse around the house and yard with him in endless circles. We'll get up nightly to lay him back down and cover him. We'll give him extra meds in the wee hours of the morning if we expect a seizure coming on. We'll change mountains of dirty diapers. We'll bathe, dress and feed him. We'll burp him, like a baby, on our laps. We'll brush his teeth and clip his nails and wipe his drool. We'll hold him while he seizes. We'll endure his tantrums, mood swings, screeching, agitation, and perseverations—all of which, by the way, have improved on a higher dose of CBD oil. Whenever possible, we'll continue to bring him out into the world. Most of all, we'll keep loving him unconditionally despite his troubles, caring for him as best we can, and searching for other people and new places that will.

3.10.2019

snowy milestone

For the very first time in his life Calvin walked a loop in our backyard while it was covered in snow. Managing to keep him upright as he careened along a narrow path of icy footprints was difficult. A few times we nearly toppled over each other. At one point, I looked down at his face and saw him smile. As we plodded clumsily along, he used his free hand to reach out and pat his favorite shrubs. He seemed happy to be outside in the yard again after so many months pent up indoors.

You may wonder why, at fifteen, he's never done so before. It's partly because he cannot walk in snow boots or rain boots; they are too bulky and roomy for him to manage. Also, his current ankle boots, though waterproof, are not high enough to walk in deep snow. And so yesterday, the snow having begun to melt in the sun and mild temperatures, was a perfect time to give it a go.

I wish I had a photo of Calvin traipsing along in the expanse of white, wish I had a photo of his smile. But I didn't have my camera or phone on me, and so I'll just have to make a note of our special, snowy excursion in my mind.


3.07.2019

nocturnal hours

It's hard to believe that five years have passed since I began making a THCA cannabis oil to treat my son's epilepsy. Shortly thereafter, I started the difficult and protracted effort of weaning his benzodiazepine, Onfi, aka clobazam. The endeavor took us four years, but we succeeded. What I find most noteworthy since starting Calvin on cannabis oil is that his daytime grand mal seizures—despite the benzo withdrawal—have virtually disappeared. The seizures, which were common in late afternoon, have been largely limited to nocturnal hours; he has suffered only a handful of them during the day in those five years. Calvin's partial seizures, on the other hand, often come in clusters and often occur in the wake of grand mals, usually presenting in the wee morning hours, yet still nocturnal, as they did today and on most if not all of the past six days.

This spate of complex partial seizures is disheartening. For the past few months, the Palmetto Harmony CBD oil seemed to have reduced their monthly numbers from double digits down to three or four. Regrettably, however, as I have been increasing its dose, we have not yet seen them disappear as I had hoped. I might now know why.

Yesterday, after Calvin received a meningitis vaccination, I weighed and measured him. I've sensed he has been going through a growth spurt, but I was surprised to see he has gained nearly seven pounds and has grown over an inch since October. This rapid and substantial weight gain prompted me to slightly increase his bedtime Keppra to equal a previous level, effectively zeroing out one variable as I continue to titrate his CBD oil. My hope is that it will lead to better seizure control. I'll let you know.

This past week's nocturnal seizures have meant that I've been waking up between two and three-thirty and getting little if any sleep from then on. Sleep deprivation is a form of torture, spiking my despair, anger, impatience and resentment. And yet, when I pull myself from its grip, get some rest, take a shower, I can see my way out of its shadow and am heartened when I remind myself of Calvin's seizure-free afternoons. I am pleased with how quickly he now (usually) bounces back from grand mals. I'm consoled by the notion he is finally growing, is taking a fraction of the drugs he used to, is walking tall, standing steady, having fewer mood swings and tantrums, and is more often going to sleep when his head hits the pillow. And though I still have to get up in the middle of the night, watch him seize, deal with the aftereffects of grand mals, change poopy diapers, dress, bathe and feed a fifteen-year-old, I can say with confidence that my boy is easier to take care of these days.

Photo by Phoebe Parker

3.04.2019

out on the ice

The ice on the pond is still two to three feet thick. Pickup trucks park on it. Folks speed snowmobiles and ATVs across its expanse. Fishermen, like my husband, drill holes in it from which to fish.

Thirty-five degrees and no wind to speak of, yesterday was mild. A glorious sun came out from behind the clouds at times. Calvin's kick-ass nurse, Rita, watched Calvin for several hours so I could get out of the house. Michael and I drove twenty miles, then trudged through deep snow to meet our friend Macauley who had set up shop in the middle of Pleasant Pond, which would be considered a lake where I come from. Almost immediately, we began catching fish from eight-inch holes: yellow perch, white perch, crappie, pumpkinseed. Michael caught a hog: an eighteen-inch small mouth bass. It flopped on the ice for awhile—its gaping mouth seeming to indicate its suffocation—until we realized it was too big and small to keep. Michael dropped it back into the hole, watched it float sideways, tail up, before it caught its breath in the frigid water then swam into the shadows.

A few hundred yards from us, a rowdy group had set up a tent and were manning several ice holes. The young men were roughhousing with the giggling kids, picking them up, shoving them and tossing them around. Their happy banter skipped across the snow. Though I was glad to have been unshackled from Calvin for an afternoon, I lamented his absence and all the reasons that made it so—his fragility, his chronic illness, his inability to walk in snow boots, to play and keep warm, his incessant staring at the sun, his incapability to understand what might really be going on.

After nearly three hours on the lake, my feet started getting cold, so we said so long to Macauley, who would spend the next several hours there catching more fish, watching the sun set, and then taking a long walk out on the icy lake after dark. I told him how luxurious that sounded, then I imagined myself—in another life—doing so.

3.01.2019

ninety seconds

Blood pools on my son's pillow as he bites the side of his tongue. His feet shake. His wrists knock. His guts buckle. Ninety seconds, the seizure takes.

In bed next to him, I scoop him up. A pint-sized teenager, he's getting bigger. Must be over sixty pounds by now. The top of his auburn crown very nearly reaches my jaw. But crawling on the kitchen floor and splashing in the tub, he looks quite small. I can still sit him on my knee and cradle him in my arms.

What is lost in ninety seconds of seizing? Time? Brain cells? Emotional and physical elasticity? A year of life? Precious sleep? Dreams? The ability to block the path of the next seizure?

A friend described the making of neuropathways in the brain as centuries-old rivers etching ever deeper ravines into the landscape. I once was told this is what happens each time someone seizes. Neurons carving passages. Repeated patterns becoming habits. Electric currents snaking along paths of least resistance. Firing synapses conducting dreadful symphonies in the brain. Spasming sinews yanking muscle and bone.

What is lost in ninety seconds of seizing? Breaths? Heartbeats? Potential? Joy? Peace? A bit of memory? Sanity? Grace? Hope? Well-being?

What is lost from thousands of these seizures, each ninety seconds?


Photos by Michael Kolster, Christy Shake and Ann Anderson. Drawings by Peter Bruun.