what he doesn't know

My eight-year-old son Calvin doesn’t know much—doesn’t know how to tie his shoe, use a knife and fork, scratch an itch. He doesn’t know how to talk or ride a bike or carry a bag or use the toilet or throw a ball or drink from an open cup by himself. He doesn’t know how to read or write or draw or sing or fly a kite or brush his teeth or blow bubbles or comb his hair or hold an ice cream cone or pick a flower. He doesn’t know how to tell time—perhaps doesn’t even have a concept of what time is. He doesn’t know what birthdays are or who Tigger and Winnie the Pooh are or why the sky is blue, that hay is for horses or that Red Sox fans despise the Yankees. Half the time I'm uncertain if he knows who Michael and I are, which makes me wonder if he has any concept of self. And Calvin doesn’t seem to know—or care—that he really has no friends at all, at least not in the true sense of the word.

Calvin won’t miss playing kickball or soccer or softball or lacrosse with his buddies. He won’t miss riding bikes, playing cards or making a papier-mâché piñata with his dad. He won’t miss making his first batch of cookies with his mama. He won’t miss trick-or-treating, picking berries, acting in the school play, fishing, learning how to swim, working a paper route or mowing his first lawn.

And when he gets older—if epilepsy doesn’t take him out first—Calvin won’t probably miss having a sweetheart to walk arm in arm with. He won’t miss driving a car, going to college, living in a dorm, drinking his first beer, or talking with his friends about the world and how to fix it. He won’t miss graduation and reunions and visits with his former teachers. He won’t miss traveling the world, landing his dream job, meeting his life partner and starting a family. He won’t miss seeing his kids grow up, celebrating their birthdays, visiting colleges, sending them off. And Calvin won’t miss all of the joys of being a grandparent. He won’t miss these things because what he doesn’t know can’t hurt him.

Thing is, I know.

photo by Michael Kolster

melancholia

It’s been haunting me for days, this Melancholia. I can’t seem to get it out of my head—not that I want to.

In the opening sequence, the film’s orchestral score sweeps me up then drags me under. Kirsten Dunst’s pained expression—eyes half-mast as if dead, hair dripping—ropes me in with the birds and dark matter falling from the sky. A Hitchcockian moment, the scene morphs into a series of super-slow-mo canvases—rich, surreal, botanical, like oil paintings—mingling with celestial panoramas. I feel gravity's pull, the essence of depression tugging at me like the grimy swathes shown entangling the bride’s wrists and ankles, and the weighty steps of a desperate mother hugging her boy across her chest. Just like I sometimes carry Calvin, I think, especially when he is having a seizure, trying to find some safe haven.

I sensed that the world might end—planet Melancholia perhaps slamming into the earth—and I understood the bride’s despair that dampened and soiled her billowy white chiffon. But what I hadn’t understood was exactly why I couldn’t stop thinking about the film—its images, its characters, its music, its ending—kept rolling them over in my mind like a handful of stones.

A few mornings later, over a cinnamon roll and a perfectly round coconut cream moon, Michael and I revisited the film. We sat across from each other in a booth near the window of the little storefront donut shop. I told him that Melancholia had stayed with me ever since we’d seen it several nights before. I explained how I related to the character, Claire, as she carried her son alone across a field, each step sinking knee-high into soggy turf, trying in vain to escape obliteration. I wondered how I’d feel if I knew that doom was approaching with the ferocity of a hurtling mass, wondered what I’d do.

“But wouldn’t we know years in advance if a planet was headed toward the earth?” I asked.
“Yes, Michael replied, then reminded me, “but Melancholia had been hiding behind the sun.”

He explained that Melancholia was allegorical, and as he did I realized I’d foolishly missed it—its painfully obvious metaphor for despair, grief and loss that seem to come out of nowhere. “Just like Calvin,” I remarked, tears welling up in my eyes as I licked coconut glaze from my lips. I reached across the table to hold Michael’s hand whose clear blue eyes appeared moist and edged pink. “Yep, just like Calvin,” he added, and I cried for our boy—and for us—hit so hard with illness, suffering, debilitating conditions, epilepsy and its heinous treatments.

We went on to talk about how everyone has their own Melancholia that suddenly appears, bringing us to our knees. For some—like us—it comes in the form of an ill child. For others, it’s the loss of a job, the passing of a parent, sibling, spouse or partner, a terminal disease, a chronic condition, an abusive relationship, a divorce, the death of a child. We cannot escape, none of us.

And so I ate my last piece of donut in relative silence, tasting nothing but a thin, greasy film on the roof of my mouth, thinking about Calvin's clear blue eyes, like two celestial orbs reflecting all of my grief, loss and fear, but also my salvation. We're two planets colliding, I lovingly thought, Calvin: my own little Melancholia, my moon, my star.

To view the opening scene of Melancholia, click here.

Please share Calvin's Story. Help bring us one step closer to a cure for epilepsy.

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

from Melancholia, directed by Lars von Trier

woman who walks alone

The Woman who follows the crowd will usually go no further than the crowd. The woman who walks alone is likely to find herself in places no one has ever been before.
 

—Albert Einstein

photo by Michael Kolster

who cares?

This morning I read about a five-month-old baby girl, Avery, who was recently diagnosed with a genetic disorder called spinal muscular atrophy (SMA.) She has been given only eighteen months to live. Her father started a blog, written from Avery’s perspective, and in less than a month it has gone viral and racked up over a million page hits (it has doubled in the course of a few hours) from sympathetic readers. Her Facebook page has over 60,000 likes.

SMA affects about one in 6000 US births, which means that about 20,000 American children have it, 1000 being stricken with it each passing year. It is a terrible reality that no parent or child should have to face, and Avery’s parents are telling the world ... and the world is listening.

My eight-year-old son Calvin has suffered from epilepsy for over six years now. In the US epilepsy afflicts about 300,000 children and as many as 3 million Americans and their families. That’s one in one hundred people. It affects more people than cerebral palsy, muscular dystrophy, multiple sclerosis and Parkinson’s disease combined. Epilepsy and related deaths such as drowning, head injuries and burns, account for an estimated 50,000 deaths annually, which is more than from breast cancer. People with epilepsy who survive the scourge are destined to a life of seizures and/or terrible side effects, stigma, job loss, loss of independence, emotional and financial burden, developmental delays and discrimination, yet somehow so few know—or seem to care.

I feel for Avery, for her parents and for what they must have to cope with knowing on a daily basis ... that their precious child has such a brief period of time with them on this earth. At the same time my blood is boiling as I write this wondering WHO CARES about epilepsy when it is such a major health problem that garners so little attention ... even as children are dying? What has to happen to arouse people's compassion? How many have to suffer to rally the masses? Who needs to die to make this urgent message go viral? I hope it won't have to be our own little boy Calvin.

Please share Calvin’s Story and help bring us one step closer to a cure for epilepsy. It’s not hard. Just do it one story at a time.

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

photo by Michael Kolster

friday faves - underdogs

I’ve always rooted for the underdog—the tortoise instead of the hare, the second-seat swimmer, the under-privileged kid, the young “inexperienced” idealistic presidential candidate, and now, my disabled son whose intractable epilepsy—and equally so, its drug treatments—exacerbates his condition.

In the summers of my high school and college years I coached a couple of swim teams in Washington and Oregon. My favorite was a golf and country club team that had a history of hanging out comfortably at the bottom of the twenty-team league. On the first day of workouts, at the modest outdoor pool with its mini snack bar, about thirty kids showed up, most of them straggling onto the deck late, towels casually hung around their necks. That day we had fun playing pool games like sharks and minnows. I encouraged them to invite their friends to join, whether they had swum on a team or not, and posted flyers enticing young would-be athletes. Within a couple of weeks 140 kids between the ages of four and eighteen, some barely younger than I, were swimming laps in the wavy lanes each morning.

I demanded a lot from my swimmers, and in return I worked hard for them, staying up until the wee hours of the morning strategizing unbeatable lineups for meets. The kids put in their best effort, were devoted and punctual because they knew I expected nothing less, and they delivered.

One rule I had for each swimmer was to compete in every single event offered in his or her age group. At the last home meet of my first season, I was sitting on the hot deck by the side of the pool, surrounded by little kids, my clipboard in hand. One of my ten-and-under girls shyly approached me. She said, “coach, Jenny doesn’t want to swim the 100 I.M. She says she can’t do it.” I told the girl that I had complete confidence in Jenny and I wouldn’t scratch her from the event. If Jenny chose not to swim, I said, then it would have to be her decision. The girl disappointedly sulked away.

A few minutes later I watched little Jenny hesitantly step up onto the slanted block, her big suit sagging off of her skinny frame. Flanking her were just two other girls, the outside lanes empty. The starter fired his gun and the swimmers flopped into the cool blue water. Butterfly. Backstroke. Breastroke. Freestyle. The three flailing contenders kept edging each other out during the suspenseful race. In the last few yards Jenny, neck and neck with the others, poured it on like I had taught her to do, and nailed the finish hard touching out the other girls. The image of her gasping for air with sheer surprise and glee on her face brings me to tears as I write these words. She was so proud of herself. She was the underdog, and not only did she do what she didn’t think she could, she had won her first blue ribbon.

Our team rose up through the ranks to second place in the league that year, all of us mere underdogs. I think of that summer and of that special group of kids often, particularly when I am with Calvin, coaching him to amble upstairs, to climb onto the couch, step into the bath, pull his shirt over his head and walk where he doesn’t want to venture. I know if I expect a lot from him and encourage him to never give up that, even in the face of seizures and debilitating drugs, he'll try and deliver. And he does. My little underdog Calvin is a true winner.

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

photo by Michael Kolster

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

out of reach

Every summer when I was a kid my father hitched the trailer to the back of our olive green Suburban and set out on vacation. My mother spent days preparing food for the trip and packing essentials like towels, cooking supplies and dimes for the shower. Sometimes our destination was the Washington coast or the white hot Oregon Dunes, but one of our favorite spots to land was Sun Lakes in eastern Washington, a three-and-a-half hour drive from home.

I often brought a friend along and we passed the weary journey lying on blankets in the back of the truck playing cards and telling jokes. The drive was hot and arid, winding through desertous terrain, craggy vertical bluffs rising high above the narrow road on one side and cascading steeply down the other into a meandering green-black river. We’d reach the park in the afternoon, and as my parents set up camp my brothers and sister went to jump the cliffs and my friend and I, though we were only ten or so, were free to go off and explore a nearby lake.

Barefoot in our bathing suits, we walked on a rocky path watching hopefully and intently for snakes, our feet and ankles powdered in a fine ruddy dust. The base of the path widened and spilled out onto a small, sandy outcropping at the water’s edge, sprouting tufts of sturdy grasses and a shady poplar tree. We dipped our toes in first. The water was clear and pleasantly warm, having been bathed in the sun for weeks on end. Carefully, we slid out on the smooth, slimy moss-covered rocks, gripping with our toes and balancing ourselves with outstretched arms, as if on a tightrope. Several yards out it remained shallow. Golden-green milfoil tickled our calves as it gracefully waved just below the water’s surface, which was glassy and adorned with the sky's billowy white clouds.

Soon we were joined by a lithe little girl of about four wading on her own, her watchful parents several yards away chatting with another couple. The child slipped on the slick shallow outcropping and plopped, just barely under the water. Time stood still. She remained motionless except for her wavy blond hair undulating and mingling with the milfoil, her arms floating at her sides, her ivory skin contrasting sharply and sickeningly with the dark submerged rocks. She was almost within our reach, but we stood frozen in shock. Within seconds an adult splashed clumsily to her rescue, yanked her up by her arm and held her as she gasped and cried. My friend and I stood by utterly paralyzed and helpless.

I experience these same feelings when I watch Calvin have a seizure. He is just within my reach but there is nothing I can do to help. I can only stand by and watch from where I am, paralyzed and powerless. Only when it ends can I scoop him up, sometimes while he's still gulping for air. I just hope one day he doesn’t drown amidst the surging electric waves that rhythmically lap against his precious brain and from which I cannot rescue him.

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

Originally published 2.28.11. 

photo by Michael Kolster