a dark alley

Yesterday was day ten ... again. I wrote—cynically, suspiciously—in the journal the night before last that I thought Calvin’s day was “too good to be true.” Unfortunately, I was right.

Since May, amidst several drug increases, Calvin remains on a nine to eleven day cycle between seizures, and yesterday proved no differently. He’s been taking half of a bubblegum pink horse-sized amoxicillin pill twice each of the past four days—in addition to his regular battery of other drugs—for a mild ear infection, the cause of a seizure several days prior. But on Monday, his balance had improved and his mood was temperate, though he was unusually placid in the high chair waiting for dinner—you know, the calm before the storm.

Yesterday at naptime, a few minutes after falling asleep—and after some unusual laughter in the johnny-jump-up earlier—Calvin had a two-plus minute convulsive seizure. It was milder than most, but seeing your kid jerk and shake and not breath for minutes isn’t a stroll in the park, more like wandering down a dark alley, a vicious thug lurking in the depths ready to clobber the living daylights out of you and your kid only to leave you both there to wither and ... die?

So, as Calvin’s nurse was upstairs watching him like the hawk that she is while he fell back into a deep coma-like slumber, I was downstairs Googling drugs—anticonvulsant drugs.

Calvin takes Clobazam, a benzodiazepine derivative related to Valium and available to us from Canada at about a dollar per pill. He takes two and three-quarters of the little white gems each day. The other is Banzel, brand name for Rufinamide, of which he gets six, three with breakfast (the breakfast of champions) and three with dinner. So now, what with three reliable, intense, long convulsive seizures each month, what might be our next drug of choice? They all cause headache, dizziness, double and blurred vision (Calvin’s vision is already off the charts terrible) somnolence, loss of balance and coordination, nausea, fatigue and memory problems just for starters. The drugs are probably why he’s remained on the verge of walking autonomously for four-and-a-half years. His balance gets no better, really, I think he just gets stronger and more adept at catching himself, though that isn’t saying a lot because nearly every day he goes down, and sometimes pretty hard, and sometimes right on his noggin, even though we hold him.

I email his neurologist, her nurse and her dietitian and I copy Michael and Calvin’s pediatrician and his nurse. I explain the circumstances. I offer possible options from what I have researched and I wait for their advice. It’s been the same cycle for five-and-a-half years, and I cringe when I think of having to feed my precious little first-grader his ninth antiepileptic drug. I fear an allergic reaction, a lethal reaction, a developmental reaction, a behavioral reaction, a paradoxical reaction. But with no other choice beyond more seizures I push the button and send.

So I sit here quietly, in the calm before the storm. The only thing I can do is to get the advice and go with my gut. Neurology is a practice—a game of chess—hard to see the consequences of any move you make, no matter how carefully you do it. Easy to back yourself into a corner—down a dark alley—your only hope in hell is that you’re wearing your kick ass boots and that it’s not a sinister bricked-up dead end street.

Calvin after his seizure, photo by Stacey Morse

defining epilepsy

I once had a friend who married a woman with one leg, the other having been amputated when she was a girl. When we first met I didn’t know this about his wife, having never met her, only seeing her from afar driving off in her station wagon, her bobbed white coif peeking out from behind the steering wheel. “My wife is an amputee,” he said one day. I was taken aback, not by the fact that his wife had a prosthetic leg but by what he called her, how he defined her. He didn't go on to describe her otherwise. I told him that she wasn’t her cut off leg, her artificial leg, she was a whole, complex person and by calling her an amputee it reduced her, at least in my mind. In any case it bugged me, like when folks call homeless people “bums.” I find it offensive.

I have a similar reaction when someone innocently asks, “is your son an epileptic?” I quietly bristle and reply, “yes, my son has epilepsy,” hoping they’ll note the difference. Not long ago I was having this conversation with a friend I hadn’t seen in several years, explaining my thorn about how certain individuals are defined with one broad term. He had the same reaction and added, thoughtfully, that society doesn’t call someone with cancer “cancerous.”

Perhaps I am overreacting—which I sometimes do—after all, people with diabetes are often called diabetic and somehow I don’t find that offensive. But to distinguish, epilepsy has an age-old stigma attached to it of being associated with demonic possession, lunacy, and contagion. At one time it was believed to be the product of malign forces and sinful behavior and, in more recent history, something to be ashamed of. People with epilepsy were often fettered away and shunned by society. Parents of children with the disorder secreted them behind doors. Even today, children with epilepsy are singled out and contemptuously mocked in films.

So yes, my son Calvin has epilepsy, but that is not who he is or what he is—it does not define him. It simply afflicts him and, most regrettably, there’s not a whole lot he can do about it until we find a cure. Until then, he’s a sweet little boy full of smiles and giggles who has to deal, senselessly, with relentless seizures and mountains of mind altering, debilitating drugs. My son Calvin simply embodies—defines—everything one could say about love.

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daddykiss

I love to see how much Calvin loves his daddy. It is as plain as day, as clear as the nose on my face, as evident as the sun coming up through the trees, as beautiful as the smile Calvin has when Michael rubs bristly cheeks into his soft ones. And after some snuggles and hugs and giggles and squeals Calvin gives his daddy a kiss, opens his mouth wide and rests it on Michael’s nose, his forehead, his cheek—gently—and Michael responds, “ohhhhhhhhh—daddykiss!” at which Calvin smiles again, knowingly.

In that moment, who cares if the sun never comes up. I’ve got my very own sparkling rays of light right here to warm my soul.

milagres

I’ve always thought it mildly amusing that my girlfriend’s mother prays to Saint Jude for me. It's not the fact that she prays that I find amusing, but rather, who she prays to, because St. Jude is the patron saint of desperate cases and lost causes. Although Calvin was born with pretty serious afflictions I have never thought of myself—or him—as a lost cause. So I have to chuckle, but at the same time I appreciate her sentiments. I know she loves me. Perhaps she prays to St. Jude on my behalf because she might have turned to him when her two-year-old daughter fell into their pool and nearly drowned, was in a coma for six days and reverted to that of a newborn infant. The girl survived, perhaps miraculously, though more likely because her mother resuscitated her and saved her life. She's grown now and has a beautiful family of her own.

When Calvin was three or four, on one of our trips to his neuro-ophthalmologist in Boston, while in the waiting room I got to talking with a man who was there with his granddaughter. She had been born several months early, a twin whose sister had died at birth. In a thick, gravely South Boston accent he told me that the little girl had retinopathy of prematurity (ROP) a common visual impairment of preemies thought to be caused by oxygen toxicity (as I understand it, from artificial respiration) and/or hypoxia. I told him that Calvin was also premature and suffered from acute myopia as well as cerebral visual impairment (CVI), his white matter—the neuro-pathways—to a great extent absent.

The man, a ruggedly handsome barrel-chested, white-haired Italian, reached into his trouser pocket and plucked out a black velvet satchel with a satin cord and handed it to me, “this is for you to keep for your boy.” With clear eyes the man continued to tell me that the ivory rosary inside, though broken in places, had saved his granddaughter’s life and allowed her to see. “Now it is for you and Calvin.” I poured the beaded chain into my palm and regarded the crucifix. In the center of its engraved arms was a tiny inlaid brass-framed window, into which the man bid me to look. With one eye squinted I held the cross up to the light and peered in. Inside was a miniature etching of Saint Anthony of Padua holding baby Jesus in his arms. “Keep it with you,” he said, “it has brought us good luck.”

Once home, I Googled St. Anthony to learn he was Portuguese and that his patronage was to seekers of lost articles and the lost articles themselves. Was I lost? Was Calvin lost? Was Calvin lost to me? I wondered, reflected and conceded. I realized that I had often asked myself those questions at various moments—sometimes at once—wondering where it all went wrong. Would I ever get my life back? Would Calvin have a real chance at living a life with decent health, good vision or simply the ability to live seizure free without horrific side effects from the mountains of drugs he’s had to ingest into his perfect little innocent body?

Then, I remembered the trip Michael and I took to Brazil before we had conceived Calvin. Three sultry weeks we luxuriated in the vast romantic country tightly braided with European, Latin, African, and indigenous roots. We visited a church up the coast in Salvador de Bahia. In a small back stucco room hung milky wax relics—hollow arms, legs and heads—hanging from the rafters, some tied with ribbon and others with stickers bearing names of victims, of the ill, the wounded, the infirm, sent by their loved ones in hopes of a blessing and a milagre—a miracle. I tried to imagine what their god was doing about these poor, suffering, seemingly forgotten souls whose pocket-sized photographs plastered the walls in a grid resembling pixels in one of those gigantic portraits that are comprised of smaller ones.

Prayer, I’ve always thought, can’t hurt. It's no different, really, than sending out super mojo or positive vibes. After all, we're all connected in a gorgeous universal web of life formed from stardust. Though to be honest, with regard to praying to "Him" I question beseeching a god who lets little kids suffer, withholds mercy, allows pain, murder, torture, war, famine, poverty, genocide. Not a god I can believe in. And the argument of “original sin” and “free will” as the root of the world’s ills—freeing god from any culpability—is in my humble opinion, feeble—mans attempt at explaining the unexplainable for his own comfort and an aim at keeping order, particularly troubling considering the presumption that god is all-loving and omnipotent.

Still, the rosary sits inside its little black pouch on my dresser, collecting dust along with a handful of smooth gray ringed rocks, half of a sparkling violet geode from a dead friend, the tiny baby oyster shell with its red ribbon that once looped around the platinum wedding ring I gave to Michael when I proposed, and a bowl full of dried lavender atop a wooden humidor containing letters and other mementos. I keep it because the old Italian man meant it for Calvin. But the only miracle I have yet to see is its minuscule image of St. Anthony de Padua behind a glass window no larger than the head of a pin.

photo by Michael Kolster

sometimes angry

Sometimes I am so angry—seething really—at the endless seizures and drugs that I can't even see straight. They are the root cause of sleepless nights, Calvin's poor balance, stupor, hyperactivity, drooling, falling down, my sore shoulders and worry, his blank stares, gross inability, speechlessness, the painful blood draws, weary trips to Boston hospitals, dirty diapers, our lack of freedom and autonomy. Stop the seizures? Then we could eliminate the drugs and the rest might very well vanish into thin air.

Please share Calvin's Story on your Facebook page or forward the link. Help promote epilepsy awareness and bring us one step closer to a cure. It's as easy as pie. Really.

I dare you.

a good mom and a good fixer

My mother was known by my friends as one of the best cooks in our neighborhood. It wasn’t that she excelled in haute cuisine, indeed she overcooked vegetables and knew nothing of pasta al dente, but she warmed the hearts and stomachs of many. My brothers and I would say to her after meals as we were clearing the table, "you're a good mom and a good fixer."

Just the other day I was telling my nephews about her homemade cake donuts, crispy deep-fried then coated in powdered sugar, and about her battered chicken drumsticks. I remember devouring hot polish sausage with russet potatoes, sweet onions and mozzarella baked and bubbling in an oblong glass pan. On the rare occasion Mom broiled a steak. We consumed plenty of casseroles and baked fish of all kinds. She topped salmon with a creamy egg sauce and threw together a pretty mean spaghetti with whole olives and ground pork, served with a plank of buttery garlic bread broiled open-faced. On camping trips Mom breaded and pan-fried the razor clams we harvested and served us mountains of potato salad chalk full of olives, green onions, hard boiled eggs, a ton of mayonnaise and a bit of mustard and pickled relish.

My mom’s breakfasts were my favorite, eggy and rich, sweet and savory. On her broad skillet she flipped all types of pancakes: buckwheat, thin Swedish, dollar-sized, buttermilk, and sourdough. Her oven bore moist German pancakes, bubbly golden Dutch Babies and brown sugar strudel coffee cake. Moist blueberry muffins were my friend Lori's favorite, which we traded her for rides to swim practice, and Mom fried up banana fritters on occasion, too. Almost every weekend breakfast boasted a broiler pan full of juicy sausage links or crispy bacon and a bowl of dad’s homemade cinnamon applesauce. Eggs were our friends—scrambled, fried or soft boiled.

My dad had a sweet tooth that he passed down to most of us so Mom always had at least one dessert going—sometimes two or three: blackberry cobbler, angel food, red velvet and German chocolate cakes, Boston cream pie—my brother Alan's favorite—tollhouse, snickerdoodle and peanut butter cookies, apple, berry, peach and cherry pies, all sporting huge scoops of vanilla ice cream on the side.

In stark contrast, for the past four years, my boy Calvin has remained on a rigid diet which required me to weigh every morsel of a narrow range of mostly fatty foods to the tenth of a gram—equal to about one drop of olive oil. This high-fat diet (with almost no carbs and zero sugar, so not as delicious as it sounds) was aimed at stopping, or curbing, his seizures, but it never made a dent, only turned him into a zombie and stunted his growth, though I've known some kids whose seizures stopped all together because of the diet. So recently we have abandoned the diet. I cannot describe how liberating and fun it is to reintroduce old and new foods to him, albeit cautiously. Perhaps one day Calvin can know the pleasure of a fresh donut or perhaps a spoonful of chocolate chip cookie dough melting warmly in his mouth. It might sound ridiculous, but sharing with Calvin the delights of food would make me very, very happy, like—no doubt—it did for my mom.

Harriette May Shake

school of hard knocks

Yesterday was Calvin’s first day of school. This time, after repeating kindergarten last year, he enters first grade at the public school down the street a spell. A full-sized yellow bus pulls right up to our driveway and Cindie, his beautiful blond bombshell of a bus driver, jumps out, a mane of golden hair bouncing behind her, I give her a hug and she lowers the lift to accommodate his pushchair. Usually, Calvin walks on and off the bus with help, but for the first day, aware that the new staff wouldn’t know how to handle him safely, and so as to avoid some hard knocks, I buckled him into the chair, then donned my helmet and leather jacket and sped off behind them on my motorcycle.

I spent the morning training his new one-on-one, Mary, to help him walk safely using the harness, how to hold it with a bit of slack so he doesn’t lean into it as if fighting against a stiff wind, and how to lead him by holding his hand. I briefed her on his myriad of habits—biting everything, fingering, putting his hands over his ears, yanking off his glasses, staring at the sun. I explained his orthotics, his diaper changes, what his seizures look like, his poor balance and the fact that he doesn’t have depth perception, never having developed 3D vision, so is apt to run into things. And last but not least, while showing her how to feed him and to facilitate his participation in the activity, I educated her, along with the other attentive ed-techs, about the monster that pummels him, which is epilepsy.

As the three of us traipsed around the hallways, Calvin in the lead wearing his blue harness, I was mindful of the fact that he was being gawked at by the other children, like an animal behind a cage or on a leash. I’ve kind of gotten used to it—kind of—having been through the school of hard knocks myself since Calvin was born, but every once in a while I must resist the urge to tell some kid or adult “take a picture, it lasts longer.” I remember last year when another student, probably a third-grader, asked, “why does he wear that leash, is he a dog?” I replied, “no he’s not, are you a pig?” She pleased me with a sour scowl then sulked away.

All in all it was a pretty good first day. Calvin’s one-on-one managed to avoid a few close calls between the windows, cinder block and brick walls and Calvin’s head. I’m nervous, though, because eventually, if this year is anything like the last two years, he’s going to get bumped and bruised and he’s going to go down. I just hope when it happens it’s not too terribly hard. No one needs a lesson like that, especially Calvin, who gets more than his fair share of hard knocks from seizures, drugs and falls.