sobering SUDEP

Most people have never heard of SUDEP. It stands for sudden unexplained death in epilepsy. It’s real and it’s scary, particularly for people like us.

Although not enough is known about why SUDEP occurs, it seems clear that there are a number of contributing factors that would predispose one to the risk, almost all of which, most soberingly, apply to our little boy Calvin.

Calvin is at greater risk of succumbing to SUDEP because he has uncontrolled tonic-clonic (grand mal) seizures. His risk is ten times higher than the risk for those with epilepsy who have only one to two tonic-clonic seizures annually. Calvin has close to fifty each year and, in the past, has had more than double that. Additionally, Calvin takes a combined regimen of antiepileptic drugs (AEDs)—called polytherapy—which also raises his risk. Moreover, one of his drugs’ many side effects is respiratory suppression, a factor that itself increases the risk of SUDEP. Early onset of epilepsy (before the age of 16) is another contributing factor. Calvin started having seizures by the time he was two years old. Having seizures during sleep increases the SUDEP risk and, historically, most of Calvin’s seizures have been nocturnal. Lastly, males are identified to be more prone to SUDEP when compared with females.

The nature of Calvin's intractable epilepsy requires that Michael and I walk around wearing a baby monitor tied to a ribbon around our heads, like a headband, anytime Calvin is sleeping. This way we can hear every little sigh and hiccup—or tonic-clonic seizure—that he might have. Although Calvin’s room is attached to ours we’ve got that damn monitor on full blast hissing white noise all night long from the nightstand near my head. I wake often, at times more than once an hour, if I hear him make any unusual sounds or if I suspect a looming seizure. I creep to his cribside and shine the flashlight on his lips to ensure that they are pink. Nights when he sleeps soundly and mornings when he sleeps in late I fear most of all. I dread going to his bedside on quiet mornings afraid I’ll find him dead. I’ve known of parents who have lived this most wretched nightmare of all: waking to finding their child lifeless. Gone.

We could eradicate SUDEP if we could find a cure for epilepsy. The only way we are going to find a cure for epilepsy is if we increase society’s awareness of the disorder and expose it’s grave impact on the millions of families and individuals who suffer from it. We must unmask the obscure reality that epilepsy research is grossly underfunded, especially when compared with other neurological disorders that impact far fewer people and that don’t affect children.

Please offer a few seconds of your time to share Calvin’s story. 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.

photo by Michael Kolster

can’t hurt

Recently I ran into an old acquaintance while shopping for a little inflatable swimming pool for Calvin.

The first time I met her we were on opposite sides of the checkout counter at the grocery store. She was tall, probably in her sixties, with an unruly tumble of grayish hair that had a kind of pinkish-purple tint. She wore glasses—if I remember correctly—with a chain to keep them around her neck when she wasn’t using them. She sported a big wonderful gap between two front teeth that I was very fond of. I have always been a sucker for gaps, overbites and snaggletooths a la Sam Shephard, Lauren Hutton and Michael Kolster.

After some weeks she began recognizing Calvin and me. I imagine she’d hear us coming aisles away, as Calvin, sitting in the front of the cart, usually hollered for the entire shopping experience no matter what I did to hush him. Her curiosity was peaked by my sweet, extraordinary little boy with his mass of auburn hair and large blue eyes roaming wildly from behind his own glasses, (come to think of it, Calvin has a gap between his teeth, too.) Her questions about him were refreshingly candid, like the child that asked me when Calvin was screaming in the doctor’s office, “what’s his problem?” Her queries, though, were always kind, respectful and of genuine concern. I adored her quirky nature and asked her about her own family and, with a new set of shiny silver braces on her teeth, she had spoken of a son in Japan who was coming home soon to be married.

Standing there in the aisle the other day we hugged, having not seen each other in a few years since she had left her job at the grocer. She proudly flashed me a photograph of her new grandbaby secured behind a flat, plastic-covered leather frame on a heavy jangling keychain. Her son, now a young father, was still living in Japan. She went on to mention that she had been widowed for some twenty-plus years—something I hadn’t known—her husband having died in his forties. It seemed premature death ran in his side of the family. As she spoke I eyed her silver hair, her bright eyes, her perfectly straight teeth. Our conversation turned to life and how much the Japanese and American work ethics seem to match—too much work and far too little leisure time to enjoy life and its offerings. “After my husband died I took seven years off to raise my children,” she said, “best thing I ever did.”

In a lazy accent that I could never completely identify, she went on to tell me that her son, reminded of the young age at which his father and uncles had died, had recently asked her, “mom, should I plan on dying by the time I’m thirty?” “Can’t hurt,” she said, “can’t hurt.”

saturday stroll

Last Saturday was a lazy day, warm and sunny. In the late afternoon when a breeze kicked in I gathered Calvin and Rudy for a walk to the shady college campus nearby.

I scuffed along at a snail’s pace in loose leather flip-flops and a tank top with my cargos rolled up, under a straw hat tied at my chin. I strolled leisurely like one does over steaming hot asphalt on a sultry day in New Orleans. Welcome shade graced us from a grove of white pines, the sun filtering through thick, heavy branches. Calvin sat upright in the jogger and played happily with his bare feet, giggling to himself. He’s still such a baby, I thought fondly, leaning down to smother him with kisses every few yards, to which he squealed with delight.

I had left Calvin's glasses at home so I didn’t have to worry about him ripping them off sideways and pitching them into the brush. Even so, on campus he eyed a bank of creamy hydrangeas and reached out to them. I moved closer so he could grab the powdery globes. “See the pretty white flowers, Calvin? Can you touch them?” It was nice to see him explore the puffs with his hands for a good long time. “Good job, sweetie,” then he tore off a bloom and tried to stick it in his mouth. I remembered back to when he was an infant and reached out to nothing, not even the brightest toys held within his feeble reach, his tiny arms hanging slack like noodles at his sides, his brain not knowing what to do or how.

As we reached the main quad we passed a woman and her son. The little blond boy looked to be about Calvin’s age—seven, perhaps younger—and she was leaning over helping him with his bicycle. We strolled on. Further ahead a young man sat alone on a near hillside abutting some brick dormitories. As we strode on past we smiled at each other and I called back for Rudy to catch up.

At the far end of campus we started to loop back following our original route. Perched on the same grassy slope where the man had been was the woman I had seen earlier with her boy. I realized that they were a family. She was crouching on her feet, perched like a gargoyle, arms wrapped around her knees, her hands tightly holding her elbows looking out into the quad. Severe bangs shadowed her narrow dark eyes and when she looked at me—at us—I flashed a genuine smile. The smile was returned with a hard stare. My mind raced wondering what she was thinking. Was my casual look so distasteful? Might she have been repulsed by my skinny knobby-kneed barefoot pigeon-toed boy poking both of his eyes and spouting strange guttural, albeit happy, sounds? Perhaps she was completely unaware of our crossing before her, caught in some sort of furrowed-brow vexed trance. I couldn’t be sure.

When I looked away from her the boy and his dad were rounding the near corner of a paved path. The man was awkwardly holding the handlebars supporting the bike, reaching one arm across his son’s chest to grasp the far handle. The boy, with his mother’s same stormy eyes, looked serious, weary, maybe even frightened as his father, now stoic, pushed him along. No words of encouragement were spoken, in fact no words were uttered at all as they rolled past the mother to complete one more lap. None of them seemed to be having any fun.

I continued on and when we reached the intersection near our home Calvin, as he always does, became animated. Since he was an infant he has somehow recognized that exact section of street, even without his glasses, knowing he is close to home. “We’re almost home,” I say to him. “Are you excited, sweetie?” and I lean down to kiss him knowing full well that he is.

photo by Michael Kolster

walking and running

We all wake up in the morning and roll out of bed. Sometimes we’re still fuzzy, groggy, perhaps even lightheaded standing up too fast. Still we are able to shake off the cobwebs, take one step in front of the other and make our way across the nubby carpet onto wide pine planks to our babe’s crib.

Cribside, we unwittingly stand with enough balance and strength to lift our child—who is already standing himself, patiently waiting for mama—over the high railings and give him good morning kisses, his little arms wrapping tightly around our necks. We shut our eyes and drink in the kind of moment that we wish could last forever but never does.

We step easily and assuredly, heel to toe, to the changing table and carefully place our child on his back, our feet slightly apart beneath us, steady. He grabs his toes and babbles as we put him into a clean dry diaper that feels nice on his velvety skin.

Balancing him on our hip we take the stairs one by one and count them off for him until the landing, and then there are three more ... one, two, three!

We set our boy down and—in my mind now, a departure from reality—I see him skitter off, almost running to jump into his father’s arms, wrapping his legs around daddy’s waist like a monkey. He feels practically weightless supporting his own mass, which is beginning to increase by leaps and bounds.

In my imagination my sweet son is excited by the chirps of chickadees and the squawks of large, oily, black crows, especially the baby ones, whose voices squeak awkwardly like prepubescent boys. The sun is beaming through leaves spinning half circles on short waxy stems—then back again—like some midway carnival ride. He spies a red cardinal with a neon beak soaring effortlessly as if on a wire. My fantasy continues as he wriggles his way out of daddy’s arms, runs to the door and opens it. Knees high, he prances giddily, up on his toes. Once outside he skips his way to the flowerbeds like a delicate white butterfly riding on an invisible roller coaster, his arms stretched above him, waving fingers spread on flat palms against the breeze.

But then I snap out of my reckless dream when I hear the locks on the high chair tray engage and the buckle of the black nylon belt, which goes between my son's legs and around his lap, click into place. My boy cannot walk by himself, not without risking a dangerous fall, perhaps because of the seizures, the drugs, or both. But I can ... we can. What amazing autonomy we enjoy without so much as a second thought when we wake each morning and roll out of bed.

photo by Michael Kolster

bummers big and small

My dog giving me a flat tire in my flip-flops. Out of milk or coffee. Voracious Japanese beetles. Greed. Mildewy laundry. Poop in the bathtub. Epilepsy and all that goes with it. Talkers at the movies. Broken off corks. "Urgent" prerecorded calls from credit card companies. Burnt toast. Gluttony. Rude behavior (I should know.) Electronics at the dinner table. Liars. Calvin's seizures. Fast food. Well done meat. Self-righteousness. People writing checks in the express lane. Pedestrians crossing without looking. Ignorance. Did I say electronics at the dinner table? Little yappy dogs I don't know. When Calvin is hurting and we don't know why. Selfishness. Know-it-alls. Mistakenly "using" a poison oak leaf. Drivers who won't let you merge. Bigotry. Most unsolicited advice. Narrow-mindedness. Television. Complainers. ; )

photo by Michael Kolster

little big boy

Yesterday was another hot muggy one but Calvin was doing pretty well considering I’d been suspecting a seizure since the day before. I had tried giving him a prophylactic increase of one of his drugs again in an effort to dodge what seems more and more to be the inevitable.

Just after lunch as I was holding Calvin’s hands I noticed that they seemed warm. I pressed my lips to his forehead, which felt the same. “Would you check his temp for me?” I asked the nurse as I was headed out. She did and found he was running a low-grade fever. She gave him some acetaminophen before he went down for his nap and by the time he woke up his temp was back to normal.

I figured it’d be a good thing for Calvin to lay low and relax—not do the perpetual marching around he usually does all day long—so I asked the nurse to bring Calvin and join Rudy and me for a walk just to keep cool. It had rained earlier so the breeze coming off of the dripping trees felt refreshing.

We strolled through the campus quad, crossed traffic then glided down the hill to Cote’s ice cream shack. Above us heavy dark clouds had begun to form. I ordered a scoop of pistachio on a sugar cone and a scoop of vanilla in a cup for Rudy—that one is always free. The rain began to fall sprinkling on Calvin’s bare legs and feet. He giggled with delight. It started coming down hard so we skittered across the street to a wooden bench nestled against the side of a shop and sheltered by its jutting roof. There we were safe and dry. Michael pulled up in the car to meet us and ate some of my ice cream cone then Rudy got the tip. The five of us lingered roadside chewing the fat and taking turns hugging Calvin, still secured in his stroller but fidgeting some, though relishing attention from his daddy.

Just as we were about to leave a group of elderly folk walked past. The last one, a slightly stooped man with thick waves of pure white covering his head and piercing blue eyes as vivid as his turquoise polo shirt, commented, “now there’s a handsome fellow,” pointing to Calvin. “Good thing he looks like me,” I said smiling. “I can see you’re his mother,” he grinned. He must have been a very dashing young man in his day, I thought, his features kind and striking. I wanted to touch his shoulder. “I’ve had my eye on him,” he added as he leaned in closer to my boy, and I figured he meant he’d been watching us from the car that he and his friends had just piled out of. The gentle man continued, “I’ve met lots of kids like—” and he cut himself short, changed direction, “he’s a big boy ... a little big boy.” I had an idea he was familiar with kids like Calvin. “Yes he is a little big boy,” I said as I turned to Michael in fond agreement seeing his eyes redden and wet like mine. “Yes he is.”

As the man and his friends crossed the street to get ice cream I watched. He limped up onto the sidewalk dragging one foot behind, kind of walking on its side. I said goodbye as we passed but he didn’t hear me, so without pause we kept on heading for home.

Later, after dinner and a second day of increased meds, Michael took Calvin out for a quick stroll around the house. The evening was gorgeous. I sat down at my laptop, briefly writing a few notes about the day, before joining them. Then from somewhere in the yard Michael yelled my name. I jumped up, knowing it meant Calvin was having a seizure out there. “Where are you?” I shouted, “where are you?” I ran out the front door then around the side of the house near the garage. I found Michael on the back step holding Calvin in his lap. He was ghostly pale with blue lips and patchy red spots on his cheeks, his body rigid and convulsing. I kissed his face and cradled his head in my palm. “I love you my little big boy, my poor little big boy.” And we held him tenderly until the storm was over.

photo by Michael Kolster

paradox

In epilepsy there lives a paradox that is both self-serving and 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 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.

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 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 delay, 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 or diet. There is no predicting its wrath. Moreover, there is no cure in sight. But we have the power to change that. It just means doing one or two simple things.

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.