candlelight vigil

In my dreams as a kid I used to smell death. The scent was sickeningly sweet. Typically, no one in my dream had died. It was just a sense that came over me, a notion more so than an aroma, that death was somewhere nearby. In any case, it made me queasy.

Last night at six-thirty, Calvin had a grand mal. It was only day three since his last one, and an unusual time of night for him to seize. No interventions were necessary but to lay our hands on him and kiss his neck. In its wake, he was more fitful than usual, couldn't lay down or sit still. Eventually, though, he settled and we pulled the covers over him as he fell asleep.

Sudden Unexplained Death in Epilepsy (SUDEP) is thought to be more common in the twenty minutes, or so, after a grand mal. So, I remained with Calvin while Michael brought up our dinner which we were just about to eat when we heard Calvin seize. Michael pulled a chair into the room and set a lit candle on Calvin's dresser among his various medicines. I sat on Calvin's changing table with my plate in my lap. We ate our dinner bedside, a candlelight vigil, lamenting Calvin's struggles and stresses, wondering if he'd one day succumb to SUDEP, then deciding finally he's too much of a fighter to submit.

After sleeping peacefully for hours, this morning at four Calvin woke to a focal seizure. The fit was long. He wasn't breathing during part of it. I syringed his morning THCA cannabis oil into the pocket of his cheek and under his tongue. Finally, he came out of the seizure, then fell right back to sleep. As I had feared, an hour later he suffered a second grand mal.

As I laid in bed next to him my mind wandered. I wondered how many seizures a brain can handle. I listened to the songbirds outside his window feverishly making themselves heard. I remembered how the only word Calvin ever said—just once—was Mama. That was before the seizures and drugs started to do their hurtful work on his development. After half an hour I returned to my own bed. I tried to get comfortable, focusing on relaxing my jaw and face muscles. Eyes closed, a hint of that death dream-smell came over me. I held Michael's hand. I thought of my friend Woody, of the little girl Charlotte who had epilepsy and died from probable complications of coronavirus. I imagined the candlelight vigil of the night before. I never did make it back to sleep.

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

spooning

This morning at three-forty-five I crawled in bed with our son Calvin for the umpteenth time in his fifteen years on this earth. He had suffered a tonic-clonic (grand mal), and when it was over I slipped into the small space between him and the back panel of his safety bed. There we spooned, my hand resting on his ribs feeling the rise and fall of his chest, his knees tucked up in fetal position. I stay awake as long as I can to ensure he doesn't stop breathing and die from SUDEP (sudden unexplained death in epilepsy). His risk of dying from SUDEP is greater than 1 in 1000 in any given year because of the nature of his seizures (uncontrolled tonic-clonic) and cognitive impairment.

Our first time spooning was when he was breech in utero, before I'd ever met him, before the dreadful sonogram revealing his brain's enlarged lateral ventricles and substantial lack of white matter, before the emergency cesarean, before the subsequent seven-week stay in the hospital. I'd rest my palm on my gravid belly on top of a bulge I was certain was his little head. Since then, when he sleeps with us, he loves to touch and press heads, and will pull us toward him, his hands around our necks.

When he was an infant and toddler, we'd regularly nap together. He'd curl up into me like a little bird in a nest. He used to be so calm, but since having to take antiepileptic medicines—particularly benzodiazepines—his body has a hard time quieting; he is so very restless. Still, at times, usually when he is sick, he settles enough to nap next to me or in my lap.

I've spooned with him in the hospital after ten-, twenty-, forty-five-minute seizures. I've spooned with him on the floor, on the couch, in his and our bed. Tiny for his age, he's getting bigger fast, but he still loves sitting in our laps for a spell, embracing us, clinging to us in bed.

2007

know what you don't know (SUDEP)

SUDEP (Sudden Unexpected Death in Epilepsy) happens to someone every seven to nine seconds. It is the second leading cause of lost years of life behind stroke. One in twenty-six of us—our kids, our parents, our partners, our siblings, ourselves—will be diagnosed with epilepsy at some point in our lifetime. One third of those diagnosed will not have their seizures controlled using medication. Know what you don't know about SUDEP.

This Ted Talk, in my opinion, is poorly titled, because it is as much about artificial intelligence as it is about epilepsy and SUDEP. Please take twenty minutes to watch, and share.


             

august update

We've had a pretty shitty week. A dear friend took his life. Calvin's kick-ass nurse gave her notice due to stresses with the agency. Because of Calvin's grand mal, yesterday we had to cancel a rare mini-vacation (it has been years and years since we've spent a night away from home) to join visiting friends at a lakeside cabin in Blue Hill. Calvin has had seizures—all but one of them partial complex seizures—on six of the past eight days, including three this morning.

So as I sit on Calvin's changing table as he rests in his bed, rather than romping in the garden with the sun on my shoulders and the wind in my hair, I'll give you a seizure update, and at least I can say I've been productive.

Between July and August, Calvin went forty days without any grand mal seizures after having begun giving him Palmetto Harmony CBD oil in late June. This month, Calvin went thirteen days between grand mals, and while not forty, it is still a good run considering a few months ago he had been having grand mals every couple to several days and, on two separate occasions, three in fifteen hours.

Otherwise notable is his recent increase in monthly complex partial seizures. We had seen them diminish, going from the low teens down to two or three soon after discontinuing the benzodiazepine Onfi in late February, and also after stopping a previously-used CBD oil.

On the face of things, it appears we may have traded grand mals for partial complex seizures: in June, Calvin had six grand mals and three partial complex seizures; in July he had three grand mals and four partials; in August he had two grand mals and twelve partials. What has remained the same since February is the number of days in any given month that he has seizures: six to eight.

The recent uptick in complex partial seizures leaves me in a quandary. I am wondering if Calvin is having more of them because he is taking too much CBD (granted, he is only taking 30 mgs/day which is not that much for a boy who weighs less than sixty pounds) or if it is because we reduced his morning and bedtime THCA oil. In making simultaneous changes, I muddied the waters, and as a result it isn't clear what I should do next.

While admitting that I hate his complex partial seizures nearly as much as his grand mals because of their stealthiness and their propensity to come in clusters sometimes leading to grand mals, I was somewhat comforted when reading recently that it is the frequency of grand mals that is the primary risk factor of succumbing to SUDEP: Sudden Unexpected Death in Epilepsy. A new study finds SUDEP occurring in about one in every 1000 people with epilepsy.

Since I don't know what is causing the recent uptick in partial seizures, I think it best to sit tight for a few days or more, keeping Calvin's current doses where they are. Though challenging, I'll try not to act too hastily, try listening to my gut. Maybe I'll try musing on the birds outside my window, the trees swaying in the breeze, the sun on my back if I can get outside, the butterflies, the stars.

Photo by Michael Kolster

life sucks, except when it doesn't

At just past one p.m. it's sunny and thirty-five degrees. No school and no nurse means a long day with Calvin, who has been ramping up to a seizure for several days, albeit in the midst of his best month-long stretch in the past year and a half.

Despite the gusty conditions, I decide we should venture downtown, so I bundle up the two of us and set out. Our first stop is Morning Glory health food, a small store wonderfully crammed with items leaving little room to move. Today, it's packed with shoppers perusing the aisles and waiting in line to purchase their goods. All I need is yogurt, but Calvin keeps trying to drop to the floor making it difficult to wait in line to pay. With my knee in his back to keep him upright, I notice our friend Daphne who, upon seeing me struggling with my stubborn boy, offers to let me cut in line. The two women behind her don't seem too happy at the notion, so Daphne buys the yogurt for me. I tell her that intend to pay her back doubly.

The main reason we've come downtown is so that Calvin can get in some walking beyond the small and repetitive loops he does inside the house. So although he's acting a bit obstinate, I choose to try him on the sidewalk. Flipping up his hood, I grasp his hand and begin walking into the frigid wind. Every few yards I wipe drool off of his rashy chin with the extra kerchief I grabbed before we left. At the end of the block we greet the same young homeless man we'd seen a few weeks back when the weather was springlike, and to whom I'd given a fistful of change I'd saved up in my purse for that very moment. The man looks to be no more than thirty. He is bundled in layers to ward off the cold, though still looks as if he might be shivering. I hope his beard helps to keep him warm. I tell him that this time I'm tapped out, but that it is nice to see him again. Then we bid him so long and continue on our way south.

Calvin walks four blocks to Local Market—further than he's ever walked with me downtown, and without balking once. We sit for five minutes to nibble on some wild rice, cranberry and edamame salad, and share a milk chocolate salted caramel. On our way back up the street we greet the homeless man again.

"I don't have cash but I do have a credit card," I tell him, "Can I buy you a sandwich at the Big Top?" referring to our favorite deli. "Come with us."

He agrees, folds up his cardboard sign and sets his plastic jug of water on top. When I ask, he tells me his name is James. I introduce myself and Calvin, explaining that James is Calvin's middle name, in part because we like it and it sounds good, in part because it's his dad's middle name, but mostly in honor of four James we know and love: Michael's dad, Michael's best friend in high school who died from leukemia, Michael's colleague, Muller, and our dear friend Garzelloni in San Francisco. Right then, Calvin attempts to drop, so I tell James about his epilepsy and how I am more than half expecting he might have a seizure tonight.

James tells me that someone very dear to him had epilepsy and died too young after having a grand mal seizure followed by a heart attack. Looking into his sunken eyes, I express my sorrow and ask when it happened. He tells me, and I can begin to imagine how difficult it must have been for him, wondering if it was what put him off track. I am reminded how the world should never judge folks who are homeless or struggling and asking for our help; we can never know their reality unless they tell us.

As we approach the Deli—my drooling, wobbling, nonverbal, incontinent, seizure-prone son toggled to me—James and I agree that life sucks, is hard, and that sometimes it is good. We express our shared contempt for the apparel line called Life Is Good, with its shitty little graphics of sun rays and flowers and Labrador retrievers and beach chairs and happy-as-fuck stick figures. He holds the deli door open for us and, as we squeeze by a crowd of other customers, I ask him what he wants to eat. The deli owner, our good buddy Tony, stands behind the counter and greets us.

"Can I have a bacon, egg and tomato on a bagel for James," I say, gesturing to my guest.

Tony, being one of the most generous guys I know, charges only two dollars to my card. Thanking him, I turn to James and say that I'd like to join him for lunch but that Calvin is pretty spent and not very good at sitting still. I pat James' shoulder and he smiles when I tell him it's nice seeing him again, to take care and I'll see him around. As I leave the deli, I wonder if I should turn back and try Calvin's patience; if I can find James again, next time I will.

Calvin makes it back through the health food store to the parking lot in the rear. When we reach the car he smiles (with relief?) and I praise him for what a stellar job he has done walking eight-plus blocks, and so willingly; six months ago he'd drop down after less than one block. My boy beams as I bend down to kiss his face repeatedly. Next to us, a younger woman—one who I think must be a mother—drives past in a minivan. Glancing out of the corner of her eye, she grins at us.

Life sure sucks. Except when it doesn't.

A similar scene from four years ago.

bright star

Sudden. She played today. She colored today. She died today. Unexplained. The switch just went off. Death. Final. Epilepsy. Caused by her 3rd vaccination set. She wasn't seizing, just sleeping on daddy's chest in the light of day on her couch, her favorite place in the world. SUDEP kills.

This, the second message my friend Susan posted yesterday on Facebook, is about her precious teenage daughter, Cyndimae. Susan's first message earlier yesterday morning read:

My angel Cyndimae died SUDEP in her daddy's arms after 3 short no meds seizures.

I told Susan in a message that I was sending her love and would soon be in touch. All night long I thought about the girl—every time I woke to reposition my semi-restless, yet slumbering boy. At midnight I peered out a window to see a bright star shrouded in mist. I named it after sweet Mae.

I first met Susan and Cyndimae in early February of 2014, just before making my first batch of homemade THCA cannabis oil to treat Calvin's seizures. While Cyndimae sat on the couch with a coloring book, crayons and a blanket in her lap, Susan showed me a few tricks to making the oil. She'd already made at least one batch for her daughter, who was suffering from Dravet syndrome, one of the catastrophic forms of epilepsy which is infamously resistant to traditional medication. In quest of the right kind of cannabis to treat Cyndimae's epilepsy, the two of them had splintered their family by moving to Maine from Connecticut, sadly leaving Cyndimae's father and sisters behind.

With the help of cannabis oils, Mae, as she was often called, eventually came off of her pharmaceutical meds, which included the powerful sedative phenobarbitol. Her seizures were fairly well controlled with a daily mix of cannabis: THCA and THC, perhaps a little CBD, though I can't be sure, and a rescue med of highly concentrated THC. Mae continued to suffer transient seizures, particularly when she was sick, but overall became much brighter and more capable in the absence of the pharmaceutical monsters.

Though I've known of children who've died from Sudden Unexplained Death in Epilepsy (SUDEP), I never really thought it would take Cyndimae. But it seems the ravaging that years of seizures and powerful antiepileptic drugs may have been too much for her little heart to bear, and it makes me wonder how much more of that same stress Calvin can endure.

Throughout the day I thought of Mae and of the palpable adoration between her and her mother. After hearing of Cyndimae's death, everything Calvin did took on a new quality and meaning; my frustration with his antics was tempered and my patience lengthened because Mae's death hit so close to home. I tried harder than ever to live in the moment because, really, that's all we've got.

Yesterday, in Michael's absence, a string of friends showed up to keep me company and help out. Sarah stopped by with her son Jacob, Anne came to chat and stroll with me and Calvin, Lauren swung by to return my movie, Heather took Nellie for a run in the fields, then Matt and Connie showed up with their kids, plus chips and pita and a bowl of hummus. The stream of friends appearing throughout the day felt like a kind of celebration, and I was consciously aware that Susan and her family were being embraced by friends, family, and even relative strangers in the pediatric epilepsy community and the medicinal cannabis world. The outpouring of support for them has been tremendous, but no more so than the love and concern they've shown toward others all these years. Like a spark, it started with them.

Thank you, Susan, for being the indefatigable warrior mom you are. Thank you, Cyndimae, for being the bright star that you were and still are. You'll forever shine in our hearts and minds and remind us how to be our very best selves.

Cyndimae Meehan and her super mom, Susan

patch of light

At one-thirty in the morning I open my eyes to see Nellie sitting at my bedside with her furry muzzle resting on the mattress. I pat her head and as Michael goes to let her out for a mid-night pee—something we haven’t had to do in the month we’ve had her—I wonder if she might be trying to tell me that Calvin is going to have a seizure. I look in on Calvin and find him sleeping as soundly as I’ve ever seen, which makes me nervous, but I’m so tired I have no trouble falling back to sleep.

It’s four-thirty. I hear my boy gurgle and gasp. “Here it is,” I say to Michael, who quickly joins me at Calvin’s bedside, helps me unfasten the netted canopy, unlatch and lower the safety panel. Calvin’s hands are grey and clammy and his eyes are roving as if he’s blind. Because I don’t want him to have a second seizure, I fetch the cannabis oil, draw up the golden liquid squeezing several drops between his parted lips, pausing every few drops allowing him to swallow.

We change his diaper, which is soaked, then I crawl into bed next to him and Michael turns the light out. Besides a patch of light on Calvin’s back wall the room appears black to my unadjusted eyes and I can hear Nellie breathing on the floor next to the bed. She has never slept there before.

From Calvin’s room I can hear the downstairs clock chime every half hour. Calvin shakes and shivers for over thirty minutes, finally easing into calm, rhythmic breathing. I turn my back on him to get comfortable and, for a moment, he goes silent, still. I wonder if he has stopped breathing or if his heart has stopped, or both. It happens to people with epilepsy. They die in their sleep. For a second I consider whether I should turn to check on him or whether I should just let him be. He suffers so much, I think, and I imagine releasing him, imagine my life without Calvin, which could be so liberating yet so dark. But then he takes a big breath and yawns, and I know he is still with me, my little patch of light amidst the blackness of the hours.

photo by Michael Kolster

summer swelter, seizures, clobazam and cannabis

By evening, everything had melted in the summer swelter—the butter, the plants outside, me—and the glass wall barometer’s blue water dipped well below normal. I was in the middle of mixing myself a bourbon with ginger beer on ice before making Calvin’s dinner, and Michael was beginning to cook ours. Calvin was screeching and spinning in his johnny-jump-up, though not all together happily. He’d had an off day, whining at every turn. When he became silent, I peered around the refrigerator to check on him and found him dangling, jackknifed in his jumper like some neglected marionette, his contorted limbs jerking in rhythm. We dropped what we were doing and ran to his aid, where we had trouble prying his stiff body from the jumper, its padded fabric crotch clamped between his rigid legs.

I couldn’t really tell if or when the seizure was over; Calvin’s color came back but his face, fingers and legs randomly twitched for minutes. I gave him several drops of my homemade THCa cannabis oil, which, after a couple of minutes, seemed to assuage the tiny spasms. It was nearing five-thirty, so I decided to give him his nighttime dose of benzodiazepine early, happy that he was able to swallow the thick, milky liquid before drifting into a post ictal sleep.

It had been thirty-five days since Calvin’s last dinnertime seizure, the third or fourth time he’s gone that long between them since shortly after starting the THCa cannabis oil. Before that he’d been having them every five to fifteen days. And though we’ve weaned him off of 40% of his benzo, clobazam, we aren’t seeing a definite increase in overall seizures. However, the seizures have mostly migrated to just before dawn, likely because we don’t give him cannabis oil in the middle of the night—at least not yet—for fear he’ll struggle and or aspirate. Therefore, he’s still having three to five perceived seizures every month, though they have flattened, calmed.

School starts tomorrow and I am welcoming the quiet time to myself. Delightedly, Calvin will have the same teacher and the same one-on-one that he did in previous years. It has been a bit of a rough summer, in that the home health agency never found us a second nurse to fill Calvin’s allotted hours, without which I have had little time to do things like garden, write or ride my motorcycle (which is thusly for sale) or even to wash dishes or do laundry. Luckily, the addition of THCa cannabis oil and the significant reduction of benzodiazepine have both seemed to improve Calvin’s quality of life and ours. For the most part he is less stubborn and has much better balance. His drooling has decreased and the persistent rash on his chin has mostly disappeared. His stamina and his willingness to walk hand in hand down the street or in the grocer or at the fair or at the park has markedly improved, and his hyperactivity has cooled some. Regrettably, it will be another year before he is completely off of the drug since a painfully slow wean is the only safe way to come off of a benzodiazepine.

The other day Michael and I had a good conversation about epilepsy, pharmaceuticals and cannabis. We agreed that, if coming off of pharmaceuticals could improve Calvin’s development enough for him to learn a handful of words, for example, we’d exchange that for a few extra seizures. We wondered why not starting him on antiepileptic drugs was never offered as an option to us when he was first diagnosed and why we didn’t consider it ourselves. We wondered why no neurologist talked to us in depth about the risks of long-term use of benzodiazepines. We complained that no neurologist told us that weaning clobazam would be easier if Calvin took the liquid form reducing by small increments as opposed to large decreases in unevenly cut pills. We realized that we are starting to think that Calvin’s seizures may never abate and that an improved quality of life should be the goal. As long as he has epilepsy, no matter how many seizures he has, he is at risk of dying from SUDEP, sudden unexplained death in epilepsy, so why pump him full of debilitating drugs that make him feel like shit if we don’t have to? I say this knowing that not all children with epilepsy fit this profile and knowing full well that things with Calvin could suddenly and dramatically change, particularly with puberty on the horizon, causing us to reconsider this tack.

Thankfully, at least for now, the cannabis oil seems to be helping, a lot. It’s just too bad that there aren’t more neurologist and legislators out there willing to inform themselves of its benefits, to champion its use, advocate for its research and support its legalization at the federal level. I’d bet if their children had epilepsy, they would do it all in a heartbeat.

Calvin in a daze after his most recent seizure

night spells (with video)

It appears they’ve returned, the ones I so fear, the night spells. As far as I know he hasn’t suffered them in years, so to have them two nights in a row, both around three a.m., brings me down, to say the least.

I woke to the sound of Calvin making a sort of swallowing, smacking noise. I grabbed the mini flashlight and shined the dim beam on his face. He did not respond. I turned the light on in his room but he did not squint. Instead, his eyes remained fixed and wide open, though not appearing to see. “Michael,” I called, “I think he just had a seizure,” and when he came I pointed out the wet spot on the sheet where Calvin’s face had been, and the familiar, feeble way he was trying to suck his thumb. So I crawled into bed with him, and for the rest of the night—both nights—I felt his body, snuggled into mine, shiver and shudder in fits and starts. We call them aftershocks.

He’s been sick with a cold and, a week prior, we’d eliminated one of his anticonvulsant drugs. It could be that the reappearance of these nighttime seizures are from withdrawal (a child in withdrawal? regrettably not his first time). Perhaps they’ll mellow out over time. Or maybe he has simply outgrown his dose of one of the other meds. Hard to tell, impossible, frankly. So we did what I hate to do, which is to increase one of his two anticonvulsant drugs, the benzodiazepine, the addictive one, the one that makes him drool and who knows what else. We aren’t prepared to try the medical marijuana yet. We still need to find the right strain, though we are well on our way, which means it might be weeks or months, at the most. In the meantime, though, I fear Calvin will have a seizure in the middle of the night that I don’t hear, that he’ll suffocate or succumb to SUDEP (sudden unexplained death in epilepsy) which is not as uncommon—especially for a boy like Calvin—as some recent media has portrayed.

And so we fill our little nine-year-old with more drugs that make him dizzy and fall off balance, that put him that much farther away from being able to walk without our assistance, that make him have headaches, nausea, insomnia and incessant drooling, not to mention what they might be doing to his organs, including his brain. I cut the pills that are nearly impossible to cut without crumbling, because the drug company discontinued the smaller dose pills that are easier for children to titrate and to take. I worry about his behavior, his contentment, his development. I remain on edge, always, because without much doubt, despite taking these drugs, Calvin will continue to seize.

potential

From behind, I watch Michael pin them on their backs while stabbing them each through the head. For a moment, they squirm as he draws the knife into the belly of their shells and through their firm white flesh. Then, he gathers fresh chives from the garden while I make a salad slicing in a handful of yellow, orange and red tomatoes from our neighbor’s garden.

I ask if it bothers him to kill them like that. “You gotta kill them anyway,” he replies, and I imagine the familiar rattling lid atop a steaming pot of lobsters—lobsters that have been randomly plucked from the frigid Maine waters, perhaps having not yet reached their full potential.

And then, for whatever reason, I think of Calvin who at some point in his development ended up missing a significant amount of the white matter in his brain, and thus will end up missing every milestone never reaching his full potential as a boy or as a man.

My mind segues into the questions I often ask myself: what might happen if Calvin dies before reaching puberty or adulthood? succumbing to epilepsy’s prolonged and lethal seizures. What if we’ll one day wake to find him still and cold? a victim of SUDEP (sudden unexplained death in epilepsy.) I wonder if, in that case, I’ll feel twice robbed, first having a child born with so many afflictions, and second if he dies early. Would it all feel such a colossal waste? having been so goddamn hypervigilant about his health, his safety, his various therapies for growth and development and seizure control—watching each step, minding every corner, suffering each seizure, counting each pill, logging every shit, grieving every loss, fretting every procedure, enduring day after monotonous day of a life that often feels like it’s going nowhere fast.

Sometimes I study his perfect little body, his willowy muscles, long slender fingers, soft belly, mild facial features and I think of all the potential he might have once had ... before his brain went wrong, before the seizures took hold, before the drugs sunk in.

In the cool dark of the screen porch I pull a lantern close to my plate which cradles a baked lobster. I pierce its flesh with my fork bringing it to my lips, a curling ribbon of steam in its wake. The morsel, crowned in buttery panko crumbs, melts deliciously in my mouth. Then I crack the claws with my hands and lick the brine from my fingers one by one, thinking that the lobster’s potential having been—in some strange way—met.

After dinner I stand for a time in the darkness of the back yard with Rudy. I search the night sky for any familiar constellations—Cassiopeia, Orion, the Big Dipper—though I find none. But I catch a shooting star whose trace is fleeting, abbreviated. But it doesn’t matter. It is beautiful anyway. The glitter up there makes me think about how all that star dust lives in me and in Calvin who sleeps soundly under their canopy. And then I realize that every day my boy meets his potential simply by being, by loving and accepting of love and by living in the moment, shining brightly like that shooting star—however brief—or like that bit of warm lobster resting on my tongue.

photo by Michael Kolster

baby moon

Considering epilepsy has been known and written about for over two thousand years, it is incomprehensible to me that there has been so little progress toward better treatments and a cure.

Recently, I saw this post on Facebook about a baby girl named Moon. It weighed heavily on my heart while also inciting anger and frustration at the status quo of epilepsy research funding and awareness:

My family is in a very difficult situation right now. My daughter had more than 2 hours [seizure] last Sunday night and doctors had a hard time controlling it. Right now, my daughter hasn't woke up yet and it is already Thursday in our timezone (GMT +8.) 

Doctors are saying that my daughter is in a very critical stage and is going for a 50-50 chance. She has a swollen brain already and that's what they're trying to control and after 48 hours, they'll try to taper down the sedatives given to her and see if my daughter will respond and wake up. I keep telling myself that I should be ready that she might leave us soon but no matter how hard I try, i feel the pain and its something I can't accept yet. She is only 19 months old, suffering from Dravet Syndrome.

Mortality rate is high, I don't know if she can recover this.

Dravet syndrome is one of the catastrophic epilepsies of childhood. It is rare, appears as if out of the blue, is resistant to medication and wreaks havoc in the brains of children. Those diagnosed with Dravet syndrome face a higher incidence of SUDEP (sudden unexplained death in epilepsy) and suffer associated conditions such as behavioral and developmental delays, movement and balance issues, orthopedic conditions, delayed language and speech issues, growth and nutrition issues, sleeping difficulties, chronic infections, sensory integration disorders, disruptions of the autonomic nervous system.

Baby Moon has been in a coma for three weeks.

baby Moon

friday faves - spread the word

Isaac Asimov authored one of my favorite quotes, "Never let your sense of morals get in the way of doing what's right."

 
This amazing video demonstrates why we must urgently push for medical marijuana to be legal in every single state, bar none. There is no excuse to do otherwise, though big Pharma will likely use its arsenal to hire lobbyists and put money into the pockets of certain small-minded, power-hungry, fear-mongering politicians.

Today, we will find out if governor Chris Christie of New Jersey will decide to sign a bill legalizing the use of medical marijuana for children. The bill has been sitting on his desk for over two months while parents, like Brian Wilson, whose children suffer catastrophic epilepsies such as Dravet syndrome, sit in fear wondering whether their child will live to see the next day.

It's a crime that our children with epilepsy have to suffer thousands of seizures and succumb to debilitating cognitive deficits because of relentless seizures and the heinous side effects of toxic pharmaceuticals, which by the way don't work nearly half of the time, and all in the name of ignorance, priggishness, greed and fear.

Do what you can, people. Spread the word. Educate. Do what's right. And if anyone in Maine wants to breed marijuana plants tailored to the needs of children with medically refractory epilepsy—high in CBD and low in THC—we need you!
 

i heard about

He said the little boy went to school one day. That day the boy had a seizure. The next day the boy realized that he had lost all of his friends.

I’ve heard it before, heard about the college student who suffered a five minute seizure face down on the sidewalk as people hurried past stepping over her convulsing body. No one came to her aid.

I heard about the man who had a seizure in the boardroom, his colleagues later laughing behind his back.

I heard about the teenager suffering from epilepsy and depression—a common combination—who refused to take her meds, suffered a seizure while driving, rolled the car with all of its passengers, survived to tell about it yet still doesn’t take her meds.

I heard about the boy whose seizures returned while at boarding school, whose teachers hadn’t informed his mother, whose mother let him go swimming during a visit home, who drown while having a seizure.

I heard about the woman who, when her daughter was diagnosed with epilepsy, lost all but a handful of people she thought were her friends.

I heard about the woman who broke her toes against a wall while seizing.

About the girl who broke her nose, broke her teeth, broke her spirit.

About the woman who fell down a flight of stairs during a seizure.

About the mother who lost her only son and the father who lost his daughter and the men who lost their young wives to Sudden Unexpected Death in Epilepsy.

I heard about the man who lives each day in the fog of his twenty-three seizure medications.

About the woman who told no one, for fifty years, that she had epilepsy for fear that she would face discrimination.

About the boy who drown while having a seizure in the bath.

About the child who went brain-dead during a prolonged seizure.

About the girl who went blind because of a serious reaction to an antiepileptic medication.

About the girl with epilepsy who, in fits of drug-induced rage, scratched her mother bloody.

About the parent who refused to tell anyone, even the teachers, that her child had epilepsy and what safety precautions to take if one occurred at school.

About the doctors who tell their patients that they have a seizure disorder but fail to tell them that it's the same thing as epilepsy and that the disorder can be fatal.

About the child with epilepsy who had the entire left side of his brain surgically removed.

About the boy who endured several dangerous induced comas in an effort to thwart near constant seizing.

About the children born healthy and vital then succumb to epilepsy, suffer hundreds and thousands of seizures, endure the wrath of scores of antiepileptic drugs and their side effects and fall into a state of serious mental deficit.

About the boy—my boy—who began having seizures at eighteen months, who has tried and failed nine anticonvulsant drugs and two dietary therapies, who cannot walk by himself, cannot utter a word, endures heinous drug side effects and still suffers the seizures.

I've heard it all before. So, now, have you. Go out and tell it to the world so we can find a cure and an end to all of this suffering.

Give to cure epilepsy: http://www.calvinscure.com

gone

In the seven years since Calvin was diagnosed with epilepsy I have corresponded with four parents whose children died in their teens from seizures, two who drowned as a result. Regrettably, some of those parents, it seems, did not understand the severity, risk and mortality rate of epilepsy, likely because their neurologist didn't broach the subject. Then, in a blink, their child is gone. One parent recently wrote to me anonymously:

My 16 year old son died Jan 9th from seizures. He was on life support for 5 days. I found him unconscious on his bedroom floor. No one told me he could die from a seizure. I think they put him on life support hoping for organ transplant which I did let them do. I am thankful I had those five days to touch him and talk to him.

It is simply inexcusable for neurologists to avoid confronting the topics of SUDEP: Sudden Unexplained Death in Epilepsy, the fatal outcome of some prolonged seizures and the risks of fatal bodily injuries and drowning due to seizures. The failure to do so is partly to blame for society's ignorance of the devastating effects of this disorder and, thus, its lackluster funding for research.

The mortality rate of people with epilepsy is three times greater than that of the general population and the risk of accidental death is twenty-four times greater. If more parents knew this perhaps some of these deaths could be avoided. Grow some spines, neurologists, and buck up to the tough talk. You know who you are. What if he or she were your child? How would you feel?

Join us in our fight to cure epilepsy now. Go to http://www.calvinscure.com

One of many who have died, Kevin Andrew Mateczun, December 6, 1984 - August 8, 2001

epilepsy's scourge

Before I had Calvin I thought that epilepsy was a benign disorder where you take a pill and everything is okay. That myth couldn't be further from the truth.

Epilepsy is as prevalent as, and more lethal than, breast cancer, and tragically it often plagues children. Even so, and because of its long and recent history of fear, shame and stigma, it remains an obscure, underestimated, misunderstood, stigmatized and grossly under-funded disorder.

Epilepsy is the second most common neurological condition and afflicts about one in one hundred Americans. That’s more than multiple sclerosis, cerebral palsy, muscular dystrophy and Parkinson’s disease combined, and its incidence is on the rise. One in twenty-six Americans will be diagnosed with epilepsy at some point in their lifetime.

The mortality rate of people with epilepsy is two to three times higher than the general population. The risk of accidental death is 24 times greater. Ten percent of people who die from epilepsy and related causes die from SUDEP: Sudden Unexplained Death in Epilepsy, which is not completely understood but is thought to occur as the result of cardiac arrest or suffocation during a prolonged nocturnal seizure. Our son Calvin is in one of the highest risk categories for succumbing to SUDEP.

Epilepsy afflicts up to three times the number of Americans compared with Parkinson’s disease, yet Parkinson’s enjoys more than four times the amount of funding from Pharma, nearly three times the government's funding and at least ten times the funding from private entities as compared with epilepsy. People with epilepsy, and parents of children with epilepsy, often hide their affliction for fear of discrimination, resulting in a colossal insufficiency of advocates.

In as many as 40% of cases, seizures are not fully controlled with medication. But even those who are fortunate to be seizure free on drugs still suffer heinous, often debilitating side effects from medications and must remain on those drugs for years, if not for their entire lives.

Only one quarter of epilepsy funding targets finding a cure. The lion’s share goes toward developing treatments, such as medications, from which the pharmaceutical industry stands to gain billions, though sadly—miserably—medications are no more than band-aids, which mask the symptoms but do nothing to solve the root cause while enducing consequences of their own.

Give what you can to CURE epilepsy now: http://www.calvinscure.com

photo by Michael Kolster

names and faces

It’s been a while since I’ve woken up to the horrific sound of Calvin having a seizure. The shriek is hard to describe, and isn’t always the same from one seizure to the next except for the fact that it scares the holy crap out of me and I never—ever—get used to it. The sound he makes—that the seizure makes—is somewhere between a desperate cry for help and a blood-curdling scream. At one-thirty this morning, in Michael’s absence, that sound startled me awake. I threw off the covers and ran. Peering into Calvin’s bed through the netted safety canopy, my heart a steely piston knocking in my chest, I could see that he was still sleeping soundly when a little chortle escaped his lips. He had simply been dreaming.

Still, I found it difficult to fall back to sleep. Curled up in a ball I gazed out at the black pines silhouetted against a stone-gray sky. I breathed shallowly so that I could listen for Calvin, for the swooshing of his sheets, the telltale clicking and smacking of a partial seizure rolling into a tonic-clonic one—the kind I fear most—though I detected nothing but his own shallow breaths.

I started thinking about all of the children I know who suffer repeated seizures: of little Leland so soft and mild who, since a mosquito bite infected him with meningitis when he was just twelve days old, has been having several dozen seizures nearly every day; of my friend Emily’s beloved Ronan who is seizing all day and all night because of the wrath of Tay-Sachs disease; of Margot, with her dark lashes and curls whose seizures ebb and flow from day to day but never go away; of beautiful Savannah and Sophie, both in their late teens who—for years now—have been drowning in a slough of drugs and yet have had tens of thousands of seizures with no end in sight; of Lisbeth and Olivia and Sammy and Jack and Matthew and Luella and Elijah and Penny and Franny and Lily and Zach. I thought of Kevin, who drowned at the tender age of sixteen because of a seizure, and of the young sons who’ve died from SUDEP and of the countless other children whose parents have reached out and told me of the suffering their kids have needlessly endured at the hand of this malady called epilepsy. I know these parents live with the same nightmares—many much worse—as we do.

I fell asleep tumbling so many names and faces in dark circles and loops through my mind. And I awoke sleeping next to Calvin in his bed keenly aware that today, as in every other, I must tell the world about the scourge of epilepsy, simply because I can.

Please share.
Give to cure epilepsy: http://www.calvinscure.com

Warning: the video below may be difficult for some to watch, though I encourage you to do so, so that you better understand the plight of epilepsy on our children.

paradox

In epilepsy there lives a paradox that is both self-serving, and yet possibly counterproductive.

For children, men and women who have epilepsy, particularly those who otherwise enjoy good health and typical lives, there is an important effort to demystify and destigmatize the disorder. These people who suffer from epilepsy want to be seen as “same” rather than “other.” They do not want to be shunned, outcast, shamed or discriminated against. It is their goal—and rightfully so—to live full lives, to be included in society, to enjoy each day without feeling marginalized or avoided like the plague as has historically been the case.

In recent years these valiant efforts, by people for people with epilepsy, have enjoyed some success, including the emergence of characters in movies with epilepsy appearing just as they are—normal folks, albeit some of whom wear helmets. People with epilepsy are speaking out and letting others know they are not to be feared, but rather embraced, just like anyone else, and that living with epilepsy is not a barrier to whatever they might want to accomplish.

On the flip side, this "normalization" of epilepsy and its impact on lives might risk impeding the progress of epilepsy research and advocacy. If the myth that epilepsy is a benign condition where you take a pill and everything is okay—normal—persists, we might have a harder time garnering the appropriate funding to find a cure.

So, while some folks with epilepsy are enjoying seizure freedom with the use of devices, surgery, dietary therapy and/or drugs (don’t forget the drugs always come with distasteful side effects) and are able to go about their daily lives, I am making a concerted effort to tell people about epilepsy’s horrors: the uncontrolled seizures, the repeated hospitalizations, the powerful mind-numbing drugs, the painful blood draws, the abhorrent drug side effects, the consequential developmental delays, the risk of sudden death in epilepsy (SUDEP) and death from related accidents such as drowning, the financial burden on society and families, the emotional toll on families, the shameful lack of pharmaceutical, public and private funding for better treatments and a cure, the pitiable lack of a prominent celebrity voice advocating for epilepsy education and research.

To be honest, epilepsy—particularly uncontrolled—is a disastrous, tragic condition not to be underestimated. It can strike anyone at any moment. There is no preventative lifestyle. There is no predicting its wrath. Moreover, there is no cure in sight. But we have the power to change that. We simply need to understand epilepsy and advocate for its awareness and funding.

Please share Calvin’s story with others. Help bring us one step closer to a cure for epilepsy. It’s not hard. Just do it one story at a time. It's as easy as pushing a button.

Give to cure epilepsy: http://www.calvinscure.com

Savannah, 18, was born healthy but developed epilepsy as a child. Despite trying numerous drugs, dietary therapy, brain surgery and an implanted device, her seizures persist. She has had over 28,000 seizures in her lifetime. 

lucky cat

My parents raised me to value quality of life over quantity of years of life. At the dinner table they discussed what they wanted us to do if either of them ever became a vegetable. “Pull the plug,” they’d say, and though we’d laugh we clearly understood their sincere message.

Back in February Michael and I adopted a stray kitten that had repeatedly come to our doorstep. We took her in, had her spayed, dewormed and vaccinated, gave her a cozy place to sleep, food to eat and the companionship she thrived on. We learned from neighbors who’d seen her around that she’d likely been living outside for at least nine months. We named her Maneki Neko, which means Lucky Cat in Japanese. Neko for short.

As much as Neko we were the lucky ones; lucky to make the acquaintance of a smart, beautiful, funny, affectionate cat who liked Rudy and who nearly always came when we called her. We kept her indoors and enjoyed her playful antics until the mild weather arrived, but as soon as it did she expressed her keen interest in romping around outside again and we obliged.

During my quiet spring afternoons spent gardening Neko became my much-loved companion—chasing butterflies, climbing trees then coming back to me to say hello—something I’ve always dreamed Calvin could do. One of our neighbors, however, felt Neko was a nuisance when she sometimes roamed into his yard. It quickly became clear that we would not be able to let her outside without worrying she'd be snatched up and sent to animal control or enduring a barrage of complaints that would add to an already elevated stress level due to caring for an ill child. One solution the neighbor offered was to clip her on a dog run so she wouldn't wander. But in our minds, understanding her strong instinct to bond with nature (she was not accustomed to living life confined indoors nor was she afraid to go outside nor was she old and tired and apathetic) keeping her indoors or on leash would be miserable not to mention logistically impossible for our household during the warmer months.

For Neko to be truly happy—and thus for our own happiness—we needed to give her a certain amount of joie de vivre, even if it meant risking encounters with crazy dogs, vicious wildlife and fast cars. Deeply saddened by our regrettable circumstances we decided to give her to a kind friend who lives on a dead end street in a neighborhood that embraces outdoor cats. There she can roam happily and enjoy the quality of life she deserves and, though we miss her and the levity she brought to our home, we know she's much better off, while at the same time we can preserve our peaceful, complaint-free existence at home.

Since Calvin was diagnosed with epilepsy when he was two I think about his quality of life often, particularly since his poor neurological health and epilepsy put him at greater risk of dying prematurely from SUDEP (Sudden Unexplained Death in Epilepsy.) I must seriously consider his quality of life especially when emerging seizures result in the temptation to increase his anticonvulsant medications. These three medications cause him to be hyper and zombie-like and nauseous and feeble and manic and spastic and dizzy and uncoordinated and unfocused, all the while impeding his development. Most recently I chose not to increase his medication just to chase a few elusive seizures that haven’t disappeared despite the doubling of his most effective drug. Why? Because doing so would likely compromise Calvin’s already impaired quality of life perhaps more so than the seizures themselves.

If only Calvin were lucky just like sweet Neko everyone would be so much happier living in the free and the clear.

Please share and bring us one step closer to a cure for epilepsy.
Give to cure epilepsy: http://www.calvinscure.com

Neko

andrew's story

Written by Sharon and John Wentz, Andrew's parents

Sudden Unexplained Death In Epilepsy (SUDEP): No one told us ... nothing prepares one for opening the bedroom door and finding their most beloved treasure gone. Nothing. Our only child’s life essence gone.

Andrew’s story begins in St. Petersburg, Florida, born as “Andrew John Wentz” on August 6, 1986. Andrew had the usual upbringing of two working parents—John, an undercover police detective, and me rising the nursing ranks at the local Children’s Hospital. He had the pleasure of spending lots of time with many loving people—grandparents, my sisters Diane and Jennifer, and great baby sitters “Ma and Ba.” Nothing out of the ordinary ... just a kid that did have incredible balance, who we would find climbing and doing a balance beam act on anything he could find!

As Andrew grew and matured he did the usual guy stuff, tee-ball and soccer. Andrew excelled at soccer, spending summers at the local college soccer camp. He had the privilege of spending some great summers with his grandparents in Pennsylvania; we would pack his bag and off he would go on the airplane. Andrew loved to go out to dinner with us, and enjoyed trips to Germany and France. He attended different schools of all creeds and colors, and at an early age, we could see that he truly was always defending the underdog. He loved animals, and we had dogs, horses, birds, and a cat.

We began to take ski trips to Taos, New Mexico in order to decompress from our work. Andrew became an amazingly proficient skier for a kid raised in Florida. John and I found his ability truly remarkable. He won NASTAR racing medals, and just made truly beautiful tracks in the snow. John would wildly ski the slopes and Andrew would follow behind, I think to be sure that his dad survived in one piece. I loved to ski in Andrew’s tracks because they felt so free and natural.

But one day after a ski trip, Andrew had his first grand mal seizure and was diagnosed with Simple Partial Epilepsy. He was 11. It was idiopathic in nature—no reason, no family history, it just was. We spent many years trying to determine the right drug combination that would allow him to function cognitively and physically. Eventually the drama settled, but not without trauma to Andrew. Seizures in the classroom, seizures on the soccer field, episodes that truly diminished his self-esteem. He did all he could to not let anyone know that he had epilepsy.

Subsequent side effects of the medication began to raise their ugly heads—problems memorizing, remembering, and just an overall decreased zest for life. Through it all Andrew continued to persevere . . .

Andrew made it through high school, but with the issues of not being able to drive or socialize on a normal timetable. He always tried to take it in stride and seemed to gravitate to some great friends that he could count on. Finally, he had a period of time where the seizures subsided; he still needed medications, but was finally able to drive at age 19. This was truly a turning point for Andrew that gave him the freedom he so needed after high school.

Community College was the next step, but the grades weren’t coming without great stress and feelings of inadequacy. Through the grace of God, someone mentioned to me Job Corps, and we followed the path that took Andrew to the Wolf Creek Job Corps program. Despite ups and downs, good times, bad times and sometimes feeling that he needed to leave, he stuck it out. We had many talks about his gentle soul, his kindness toward others and how he would make a good Certified Nursing Assistant. He followed this path and it took one year, and two difficult and frustrating tries to get through it. He finally graduated the week of his death.

Andrew came home a mature, grown man in mind, body and spirit thanks to the amazing work by Job Corps, and the faith our family had in his ability to succeed on his own timetable! He was happy and said to me, “Mom, I just LOVED my clinicals.” He had intentions of returning to Job Corps to continue after his vacation at home. I was able to hug him and get him settled in for what I thought would be a comfortable night. He told me that he was very tired and wanted to sleep in. The following day, August 22, 2009, I was faced with a parent’s greatest fear and pain—having to open the bedroom door….

Andrew will live in our hearts forever. We were asked to give our most treasured gift. I promised Andrew that I would continue to share his essence in my life’s purpose and nursing work. So here it is for the sake of a cure for epilepsy. Unfortunately, there was no cure for our beloved son. We had Andrew for 23 glorious years. He was a quiet, shy, kind, and gentle spirit—like no one I have ever known.

Please share this story and help bring us one step closer to a cure for epilepsy.
Give to cure epilepsy: http://www.calvinscure.com