silver, sleep and seizures

By the time I kicked our dinner guests out, the clock was inching towards eleven p.m. Our bellies were swollen with Michael’s carnitas, my guacamole, our neighbor’s fresh chunky green salad and another neighbor’s chocolate iced chocolate cake. We’d laughed at length about infused vodkas and their scandalous effects, about performing CPR on an electrocuted cat, about designer chocolate, home renovations, Mainers and their ways and the long-ass winter that somehow we feel we’re still amidst.

At one point, as the conversation dissolved around me, I drifted into the center of one of several hundred of Michael’s glass-plate photographs, this one hung on the far wall opposite of where I sat. Under its spotlight in the darkened room the ambrotype's silver gleamed like smokey quartz and I imagined diving into the heart of what looks to be a bed of reeds under a stand of swaying Savannah palms.

Before dawn, the glass plates had sliced their way into a sorry dream. In it, Calvin was a miniature baby no bigger than my thumb. He was very ill, so I lovingly and delicately sandwiched him between two small plates of glass the size of playing cards, and rushed him to the emergency room. When I peeled back the top plate so the doctor could examine him, Calvin's eyes were bulging the way they did during his very first seizure, his tiny torso collapsed, blue and oxygen-starved. In the moments before waking I feared for his life.

Four-forty-five came, as always, far too early and this time unsettling, the image of Calvin my thumb-sized boy etched into my groggy mind. Michael brought our fussy son into bed with us, hoping to calm him so we'd all catch a few more winks. Calvin struggled before eventually falling back to sleep only to wake an hour later to a seizure. In Michael’s arms Calvin stiffened then convulsed. I kissed his neck and in the dim morning light we could see that his hands had turned blue. I watched the clock over Michael’s shoulder and by three minutes the seizure was over, so I ran downstairs to collect Calvin’s drugs and spooned them into his mouth before he drifted off to sleep again, still next to Michael.

I decided to crawl into Calvin's empty bed to get some sounder sleep. With my head on the pillow I laid there thinking of Michael’s ambrotype, how its brilliant image had beckoned me to a different place and time. With my eyes closed, I dove back into its mysterious warmth, dipped my toes into its silver sands and let its sultry zephyr rock me back to sleep.

easier

Time again to slip a steely needle through a vein. Monday it was Rudy’s. This time, Calvin’s. It’s never easy. They’ll poke and prod, fish around until they find it. He’ll cry and squirm. If we’re lucky they'll stick him only once and the blood will flow like a spring river does. I’ll see results within a week, perhaps explaining why he’s been so insanely crazy, so manic, so irritable, why he’s been sleeping so poorly and waking up at four in the morning and not going back to sleep, why he’s biting and pulling hair and dragging his teeth across my face again giving me welts. For a while there, he was doing so well, but for the seizures.

I traipse around the yard behind him, his tether in my grip. He’s walking so well—for him—that I want to let go. Even so, his erratic balance reminds me of the piles of pills he’s eaten in his short life, a long list of bitter, never-ending, mind-numbing, debilitating drugs racking his little body and drowning his brain.

I wonder what it would be like to have a boy who had no seizures, who took no drugs, who felt good inside his body and inside his head. What kind of person would I be if seizures didn't loom around every corner like a noxious cloud, if the pressure were lifted, if the air were clear and light? What would it feel like if I had a kid who didn’t flail and grind his teeth, who could sit still and feed himself, who could run and play and fall without hurting himself, who could eat what he wanted to and ask for it, who could walk down the street with me without balking and twisting, who didn’t writhe and cough and scream every time that I change his diaper. I wouldn’t even mind a kid who couldn’t talk and whose diaper I had to change if things were just a little easier.

I wonder what it would be like to not have to worry constantly, my mind getting snarled in knots. What would it feel like to be free, to be able to let go of my son—literally? How would it feel to fall asleep without the hissing reminder of the baby monitor, to sleep uninterrupted till dawn for two or more nights in a row, to sleep in past six, to not feel weary so much of the time, to not have to shield my face from a thrashing kid, to float around the house with my back to my boy as he plays quietly in the room next door, outside in the yard, at a friends house?

What kind of person would I be if everything were just a little bit easier?

doctor strominger

Yesterday, we took a day trip to visit one of Boston's top doctors, a man we've been taking Calvin to see since before he was a year old. His name is Mitchell Strominger, and he is a neuro-ophthalmologist. We came upon him after deciding to ditch a local ophthalmologist, one with a notoriously bad bedside manner, who said that Calvin's vision wasn't bad enough to warrant glasses, though everything Calvin did and didn't do told us differently.

Besides zeroing in on Calvin's vision, not only to help him see better but to improve his development, Doctor Strominger was instrumental in discovering Calvin's hypothyroidism, telling us that the enlarged ventricles in Calvin's brain might be affecting his pituitary gland, which could result in problems with his thyroid functions. He recommended that we bring Calvin to see an endocrinologist. There, we learned that Doctor Strominger had been right, and we started Calvin on a synthetic thyroid replacement.

Doctor Strominger, having confirmed that Calvin's vision was 20/1000—ostensibly five times worse than legally blind—wrote Calvin a prescription for glasses when he was only eleven months old. A year or two later the doc added prisms to the prescription since Calvin had developed a habit of looking over the glasses instead of through them. When Calvin was just five years old Doc Strom performed a flawless surgery, delicately cutting and reattaching the muscles of the eyeballs to correct Calvin's esotropia.

When we told Doctor Strominger that Calvin was taking cannabis oil for his seizures he didn't bat an eye, and agreed with me that the low pressure in Calvin's eye might be due to the oil (one of Calvin's anticonvulsant medications, clobazam, can cause glaucoma, which can be treated successfully with cannabis use.)

Doctor Strominger is gentle and kind, funny and smart and patient. He listens well and explains things clearly. He has cute toys and makes a convincing duck quack. He's one of the good ones, the kind you want on your side, the kind you trust with your kid, the kind you don't mind too much driving three hours to see, the kind who has a great staff, the kind you thank your lucky stars that you ever met.

Thanks, Doctor Strominger. Put simply, you rock.

a good day to die

The day my father died I spoke to him on the phone. He’d been battling multiple myeloma for five years, since he was sixty-five, and it was the first day in months that he’d spent time alone in the house. He’d recently recovered from consecutive bouts of pneumonia which had landed him in the hospital, and for months he’d been drugged up on morphine to blunt the pain in his bones. Our conversation went something like this:

    “Hi Dad. It’s me.
    “Hey, Shorty.”
    “I’m calling from New York. What’re you up to today?”
    “Well, I swept the garage and brought in some wood for your mother, then I checked the oil on the car.”
    “Wow, that’s great! Is Mom there?”
    “Nope. She went into town to do a couple of errands.”
    “How’re you feeling today?”
    “Pretty good ... I think I might’ve turned the corner.”
   
I told him that I loved him and he said it back. I hung up the phone wondering which corner he had turned. Later that night I got a call from my mom and my brother telling me that Dad had died. It occurred to me that it was a good day for Dad to die, one in which he felt worthy, accomplished things, and felt good enough physically and lucid enough to do so.

This past weekend Michael and I watched out thirteen-year-old chocolate lab Rudy hobble around on his weak, arthritic legs, one of which he suddenly can’t put much weight on anymore. Last week he stopped eating his breakfasts. He’s lost some weight and has long been incontinent. A visit to the vet on Thursday resulted in a substantial increase in painkillers and anti-inflammatories in a last-ditch effort to get our Rudy back into decent shape. Our strategy didn’t work, and after a lot of thought we decided that today is the day we’ll be putting Rudy down.

It pains me to do so. Every cell in my body wants him to get better, wants his elbow to miraculously improve. I know deep down inside, however, that it won’t, that he is in pain, even though he wags his tail, still enjoys munching on dog biscuits, still wants to follow us around the yard even though he is terribly lame.

Today will be a good day for Rudy to die because yesterday our friends Brian and Joanne, Luke, Sarah and Jacob, Matt, Macauley and Carol and their black lab Millie came by separately to say their goodbyes to Rudy. There were tears and wags, and glasses of beer and bourbon. As Rudy and Millie sniffed each other, Macauley recounted the legend of the Oglala Sioux warrior Low Dog, who was thought to have said before going into battle, “It is a good day to die.”

Today will be a good day for Rudy to die. The ground has finally thawed. The fragrance of spring is on the wind. Birds are chirping. The vet is making a house call. Rudy is still in good spirits. But as I write this I can’t help but weep. He’s been such a good boy, friendly to everyone, loving, loyal, affectionate, well behaved, albeit stubborn in his final months. We’ve been lucky to know him and terribly sad to see him go. But as he goes, he’ll have the sun shining on his chocolatey coat, the grass as his bed and Michael and I there hugging him goodbye.

day three

my boy. face down in bathwater again. blue and limp. only three days since his last seizure. the likely culprit: one jagged quarter of a chalky white benzodiazepine tablet he isn't getting anymore.

snow. in shady places there's still some on the ground. naked branches are just beginning to bud, their crooked shadows raking withered crocuses.

rudy the dog. all of a sudden—and yet not—completely lame. thinning and incontinent but still happy. enjoying his favorite sunny spot in the front yard watching the world go by, living what might be his final moments as if there is no tomorrow.

the birds. flitting around, twigs and grasses pinched in their beaks. alighting on quivering boughs to sing my mind away from things disconcerting.

me: sleep deprived and feeling it in my bones, in aching eyes. trying hard not to worry over my boy. pursuing a high CBD cannabis oil. who to make it? what extraction method? who to trust? which substrate? who is reliable for the long haul? will it help calvin?

my boy. napping now. it's where i need to be, too. we used to nap together. at home. in the hospital.

tomorrow. will be a new day.

photo by Michael Kolster

simply splendid

It was a simply splendid evening. Thanks to everyone—to local establishments who donated food, to pro bono musicians and bartenders, to generous friends near and far—who helped us raise over $16,000 at our CURE epilepsy benefit, not including receipts from the event itself. Your compassion warms my heart.
Please Join us by giving only what you can at http://www.calvinscure.com

Click on photos to enlarge.

if you haven't already, please give to CURE epilepsy at http://www.calvinscure.com

Please join me in thanking the following establishments
for their generous contributions

Aki Sushi & Hibachi
Bath Sweet Shoppe
Big Top Deli
El Camino
Empire
Enoteca Athena
Flipside
Frontier
Frosty's Donuts
Hannaford
Henry and Marty
Little Tokyo
Pastry Chef Patrick Jones
Trattoria Athena
Zu Bakery
Wild Oats Bakery
Solo Bistro Bistro

day eight

I was going to write about the CURE epilepsy benefit we hosted last Saturday night, about my man-catcher choker, about how I wept seeing all the tasty food our local restaurants donated, about the band, the bartender, the bodacious blondes and brunettes (guys and dolls) shaking their groove things on the dance floor, about friends from near and far, who signed up, picked up, setup and cleaned up and who helped us raise over $15,000, not including the receipts from the benefit itself.

Instead, I’m writing about the seizure Calvin had this morning at 1:30. I heard him coming out of it, heard that unmistakable constricted breathing like a death rattle. Yesterday, all day long I’d been dreading its arrival, had sensed its imminence for three days and had logged it in my journal:

no smile coming off bus. stubborn. dropping down. eye poking like crazy lately. crazy in jumper. seizure coming. crazy in bath. lots of hypercough. stubborn on way to woody’s. INTENSE. pulling hair. seizure coming. whiny. restless night. not hungry or thirsty. no a.m. nap. crazy in car. *hot hands. *red cheeks in store. ABSOLUTELY CRAZY BATH (took him out after one minute). gazing up and to the right w/shifting eyes in car. pounding heart. seizure on the way.

Instead of writing about the benefit and sharing photos, which I will do later, I’m asking each one of you, Readers, to channel your undeniable compassion for Calvin into funding to CURE epilepsy. Give only what you can at http://www.calvinscure.com

help us CURE epilepsy

In honor of Calvin's tenth spin around the sun, and for the millions like him suffering from epilepsy, please give what you can to help CURE epilepsy now at: http://www.calvinscure.com

click to donate to CURE epilepsy

my sustenance

Often your post is what I intentionally read last before bed. That way I go to sleep thinking about important things rather than about work or the very minor stuff I worry about during the day. Thank you for that.

—Paul


I just had a moment to catch up on your blog. I hear the hurt that the positive effects of the current therapy are so slow, so tenuous that one begins to disbelieve that things can change. It has some analog in the seasonal despair of mud season. A Maineish slough of despond: there ariseth in [the] soul many fears, and doubts, and discouraging apprehensions, which all of them get together, and settle in this place; and this is the reason of the badness of this ground. Like mud season, I hope to see it clear soon, but I can't promise any time table on which you will be relieved of this heart-wearying struggle. Keep on. None of us can anticipate the best changes, in ourselves or in others, that time will bring. You gave, I think, the best defense of hope some weeks ago. We must embrace it for without it we are lost.  

—Madeleine


I'm so sorry, Christy. With the label on your post "despair" I can feel the weight from your home to mine. If I had posted within these last few difficult months, there would be a label of "resignation." I am in awe of the sadness of epilepsy, of how it drains the life from its sufferers and drains the color from the caretakers' lives. My heart is with you today.

—Amy


I'm listening. Sometimes I cry when I read. I have nothing else to offer.

—Julia


We haven't corresponded much this year, but I've thought of you and your family many, many times over the past 12 months. Calvin's picture remains on my computer desktop and I continue pray for his health, peace and well-being (as well as yours and Michael's) every day I see his picture.

—Timothy

day five

day four

purple crocuses bore through bark. sun sparks. kid walking blocks and blocks. hand in hand. sidewalks caked in sand. slight breeze. fifty degrees. mercury’s silver pipe reads fair. winter’s glare has scorched the leaves. in its reprieve they curl into frozen spasms. some, still rooted in their icy chasms, may not survive the melt.

his grinding teeth sound like sand beneath boot. i feel it in my marrow. his pair of eyes rove and jerk. he goes berserk. my boy is not himself—whatever that is. fingers frantically snapping. its half-life met, the benzo withdrawal compels. it’s going to be hell.

day five

four thirty. the cardinals chirping. i hear him choke. i quickly unfasten the canopy ropes. his face is pale and he fails to meet my gaze. his hands turn clammy. the seizure makes his gut churn and creak and groan. i slide in beside him. he moans and pulls my hair, claws me like a bear. his head must drum. for an hour he shudders and writhes and whimpers and hums.

he wakes up cackling. something must hurt. he's cracking. his tummy must feel sour. he spends the first hour with his head in his hands, finger in his eye if he can. he coughs and whines and drools. i keep him home from school. he wants out of the jumper. he wants in. he wants out. he wants in. he flails and shrieks and stomps. rudy pants and tromps around the floor. i try to comfort my poor ten-year-old boy who is suffering withdrawal. i’ll try to be his steely pawl.

a cannabis man is coming by soon. i want him to grant calvin the moon, offer some hope. i feel we’re at the end of our rope. but i won't let go. no. no matter what, i won't.

lil' bubber

photo by Michael Kolster

birds and stars and broken circles

He flops forward in between his crossed legs, face first into the water. His nurse fishes him out, water cascading down his limbs into the bath. She carries him to the bed, starts her timer, covers him with a towel and dabs his wet skin. After two-and-a-half minutes she calls me on the emergency cell. I jump, because I know what she is going to say, but can barely hear her so I tell her we’re coming straight home.

Once home, I tiptoe upstairs. She’s sitting next to his bed, its safety panel down, and I can see his sleeping face, which is flawless and wan like a an eggshell. His hands were blue up to his wrists, she whispers, he didn’t breath for at least a minute.

Though the seizure was just after 4:00 p.m., he’ll sleep twelve hours, waking only for his medicines and a diaper change.

Michael and I warm our dinner in relative silence, thankful for the lasagna that our neighbor Barbara left on our doorstep the night before. We eat it while watching The Broken Circle Breakdown. As the subtitles roll the film unfolds into a drama about the parents of a little girl suffering from leukemia. Because of our bad memories of hospitals, we’re not quite sure we want to watch, but something about it compels us. Maybe it’s the tattooed Belgian cowgirl and her carefree ways. Perhaps it’s her ruggedly handsome boyfriend, the smitten one who plays bluegrass in a band of bearded minstrels. Or maybe it’s their little girl, a few years younger than Calvin, who has the same perfect skin that sallows with the chemo even as her hair falls out of her head.

Tearfully, we make it through the film, which weaves its way in and out contemplating the existence of God. It holds both sides equally well, making the case for a Godless universe and one where spirits come back as birds and stars. To me the arguments aren’t incongruent. Nature is God. God is nature. It’s as simple as that. No sadist God exists to punish little children, take sides in wars, inflict suffering on the masses, answer some prayers but not others. It's as simple as the fact that bad things happen to good people, like me and Michael, and Calvin, like that sweet, ill girl and her parents.

I go to bed feeling so sorry for my little bird who has to suffer so much, his headaches and tummy aches and cramps and seizures and side effects. He suffers the burden of not being able to tell us what hurts. Sometimes I wonder if he hears voices or sounds, sees apparitions, brought on by the drugs he takes to quell the seizures. I wonder if he knows the sound of a bird, which is not unlike the trills he sometimes makes. I’m sure he’s never seen a star to know what one is.

They say the universe is infinite. So too, then, is its suffering, its beauty, its mysteries, its despair, circling around us in ever-expanding orbits.

I’m tired. I am not the person my husband married. I’m stuck between these four walls listening to a whimpering kid who I can’t seem to help no matter what I do. Even Rudy paces in broken circles around the house. It’s what we do. Our days are as infinite as they are numbered.

cannabis and my kid

Published April 2, 2014 in Ladybud magazine

When my son Calvin was two, he suffered a forty-five minute seizure. The emergency medication that the hospital staff had administered seemed to be having no effect. In my research of epilepsy I had read that the longer a seizure lasts the harder it is to stop, so my husband Michael and I, fearing Calvin’s impending death, sat helplessly at his bedside kissing him goodbye. Seconds later, the seizure stopped.

In the eight years since his diagnosis, Calvin, who was born missing a significant amount of the white matter in his brain, has tried nine different antiepileptic drugs (AEDs)—at times as many as four at once—plus two rigorous dietary therapies. None have stopped his seizures. The seizures and the drugs impede his development and the drugs cause heinous side effects such as headaches, nausea, poor coordination, irritability and cognitive blunting to name just a few.

Some of the drugs have not been tested on children, others can have lethal side effects, while still others are addictive and can disturb memory, behavior and learning. It sickens me knowing that my ten-year-old’s brain is constantly awash in a drug related to Valium, plus a high dose of another AED, yet his seizures, which can last as long as five minutes and cause him to stop breathing, persist. Having tried and failed so many pharmaceuticals, the chance that a subsequent one will stop Calvin’s seizures has dwindled to almost nothing.

A little over a year ago, in desperation, I began researching cannabis for the treatment of epilepsy. I read about a five-year-old girl from Colorado, Charlotte Figi, who’d had near miraculous results treating her catastrophic epilepsy using an oil made from cannabis. Then I read of another similar child, and another, and another.

Their stories astonished me, so I asked Calvin’s neurologist her opinion. She dismissed the idea, saying that there was no solid evidence as to cannabis’ safety or efficacy. I took Calvin to see another neurologist. He echoed her misgivings. I then went to Calvin’s pediatrician who, since Calvin was a neonate, had been holding our hands through near constant complications and heartache. A few days after our conversation, having never done so, she promised to issue Calvin a certificate to use medicinal cannabis to treat his epilepsy.

Over the next several months I read, researched, and contacted other moms who were using cannabis oil for their kids. I spoke with dispensaries, caregiver growers, marijuana advocacy groups and specialists in making the oils. I learned that the strain of cannabis that was helping the kids in Colorado, one high in CBD (cannabidiol) and low in THC (tetrahydrocannabinol) was not available in our state of Maine. To get it, I’d first have to find it, or one similar, in a nearby state and bring it back to be grown, thereby breaking the law. Otherwise, I’d have to uproot my family and move to Colorado, or order it online and risk getting one processed with pesticides or mold, risk a breakdown in supply, risk not knowing its exact contents, its consistency or its handling, all risks I was unwilling to take.

Instead, I began conversations with a Sacramento man about how to make an oil using a strain of cannabis readily available in Maine, one high in THC. There is evidence that cannabis oils high in the raw, acidic, non-psychoactive form of THC, called THCa, are helping children with epilepsy in Australia and in the States. Since, with each passing day Calvin was outgrowing his AED doses, and since I wanted to avoid subjecting him to another, I felt compelled to start him on a cannabis oil, ASAP. Until the high CBD strains, which at some point during my research had been anonymously brought into Maine, would be ready to flower abundantly enough to offer a consistent supply for making oils, I’d have to make a THCa oil myself; local dispensaries were not making it.

At first, the process intimidated me, but my husband, a professional photographer who deals daily with chemicals and precise measurements, offered to help. This eased my angst. I began ordering supplies on the Internet: organic grain alcohol, nylon filtration bags and screens, amber dropper bottles, MCT oil, canning jars and scrapers. As the supplies started appearing in boxes on my doorstep, I began examining the recipe in preparation for making the oil.

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