two wolves

An old Cherokee told his grandson, "My son, there is a battle between two wolves inside us all. One is Evil. It is anger, jealousy, greed, resentment, inferiority, lies, and ego. The other is Good. It is joy, peace, love, hope, humility, kindness, empathy, and truth." 

The boy thought about it, and asked, "Grandfather, which wolf wins?" The old man quietly replied, "The one you feed."

Ghost Heart by Kirby Satler

on the brink

I’ve felt a seizure coming on this entire week. In Boston last Monday the neurologist gave us the go-ahead to temporarily increase one of Calvin's anticonvulsant medicines for just a few days in an effort to stave off suspected seizures. The strategy seemed to work, that is, until last night.

All week long Calvin has been having manic episodes. Since bumping up his seizure medicine beginning Monday night his crazy behavior has escalated, but we were unsure if it was a result of the added dose or a reasonable hint of a looming fit.

Yesterday Calvin’s nurse noted his excellent balance on the back deck steps, needing little to no help going up while not even holding onto the railing. “Hmmmm,” I murmured with a bittersweet air, semi-enjoying the improvement in his skill while knowing it likely meant a seizure on the brink.

As I baked a rare batch of cookies the nurse gave Calvin his bath. He immediately began laughing hysterically. At moments I shuddered at the raving, demented cackles that tumbled down the stairs. As soon as the cookies came out I went up to relieve her for the day. We noted a faint mark on Calvin's back and suspected it was a mild hickey I’d inadvertently given him earlier, though not his first one. “He’s so kissable and ticklish on his back,” I remarked. She knowingly chuckled.

We reviewed the day as Calvin splashed excitedly then said our goodbyes. As she headed down the stairs I admired the new tattoo on her ankle. I quickly turned round to see my boy cross-legged, folded in half forward with his face submerged in the water before him. Then he tensed and let out a strident shriek like air squeaking out the stretched neck of a balloon. “Here it is!” I yelled and the nurse raced back up the stairs. I plucked Calvin out of the bath. He appeared like a corpse with rigor mortis and felt like a wooden stool. He was awkward to carry in this shape, his frame contorted in a grotesquely crooked arch. With his long stiffened body I minded the door jams as I whisked him to our bed.

The nurse and I lightly covered him in towels and spoke loving words to him. We told him it was almost over. “My sweet, sweet boy,” I whispered into his ear, smoothed his wet hair back from his face. He began taking gruesome, raspy breaths, but breaths nonetheless, though he was still in the heart of the storm. After several minutes he started coming out of it. She stayed with him until I had cut his pills, drawn up his potassium citrate and made a yogurt, oil and applesauce seizure meal. I propped him up on several pillows and I spooned in his medicine just before his eyes became leaden and he drifted off to sleep.

As I wrote this, perched in a chair pulled up alongside our bed, I watched him sleep, fearful of another seizure upon his waking. Michael, having just arrived home, put dinner together. The clang of pots and pans and light music drumming up through the floor consoled me. Through the wide open windows in our bedroom I heard the rain begin to fall as the white sky lit everything aglow in the dimming light of evening. We need the rain, I thought. It’s so dry outside—parched really—like the coarse gravel of a crow’s squawk, the harsh buzz of the cicada, or the loathsome sounds of my little boy’s seizures.

ruined

Often, especially when I look into Calvin’s pure blue eyes, I wonder what went wrong, what ruined him. Saying that doesn’t mean that I don’t love and cherish every little bone in his body, every tiny capillary, each feathery hair, all his millions of emerging cells, the very marrow of his bones. Even so, he’s not right—not healthy—and since he’s not we have to pump him full of chemicals every morning and every night in hopes they'll make him right. What a sick joke.

None of these so-called promising anticonvulsant drugs has stopped my little boy’s seizures. He’s been ravaged by them (the seizures and the drugs) since he was two years old. I'm constantly looking to find another way, perhaps a better way.

At lunch the other day, for the first time in over a year—maybe two—Calvin ate a vegetable. It’s not that he doesn’t like vegetables, it’s that I thought I saw a pattern of seizures occurring after he ate them as he subsequently suffered painful gas, which can also trigger seizures. Perhaps it was simply mere coincidence. But in recent months his muscle tone and digestion have improved. So the other day I gave him broccoli with his chicken, mayonnaise, yogurt and blueberries. He liked it ... a lot.

My hope is that we can boost his immune system, which when compromised by a virus or infection, lowers his seizure threshold. I aim to try whatever it takes to rid our son of his affliction. I’ll then try acupressure, acupuncture, hell, I'd even try voodoo if I trusted it in my gut and thought it could work. I'll just keep trying one thing at a time and perhaps some day we’ll hit the jackpot.

Best thing, though, would be to find Calvin a cure; to right this ruined kid who gets more and more wrecked with each seizure and with every bitter dose of pharmaceutical chemical soaking into his brain.

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.

altruism

Recently I heard a story about a little girl from the town I grew up in, Rachel Beckwith, who suffered a spinal cord injury in a car accident with a semi. She was riding in the car with her mother and year-and-a-half old sibling. Rachel’s side of the car sustained most of the impact of the eighteen-wheeler logging truck. Nine-year-old Rachel was later taken off of life support and died.

I’d like to think that Rachel wasn’t a special kid; that most kids are like she was. I’d like to believe that because she was so selfless. For her birthday last June she told people she didn’t want any gifts. Instead, she wanted to raise money for a charity that drills wells and brings fresh water to people in developing countries. She was just shy of her three hundred dollar fundraising goal when she died. The story of her death ran on a local newscast and donations to the charity quickly grew to six thousand dollars. Within a few hours, after a couple of celebrities tweeted her story on Twitter, her fundraising total approached $150,000.

Rachel’s story reminds me of what a difference just one person can make in the world, how a single individual, even a nine-year-old, can improve the lives of so many others by such a simple charitable act. She must have had amazing parents who taught her the value of altruism instead of selfishness and greed.

I’d like to think that Calvin might have been altruistic like Rachel if he had been able to, somehow, avoid the bitter circumstances of his terrible afflictions and, instead, lead a life with some semblance of normalcy capable of aiding others. Somehow, I think if Rachel had survived, she—and perhaps her own children—might have helped kids like Calvin. And though that isn't going to happen, maybe there are other people out there—other adults, other kids—who will. Imagining that brings a huge smile to my face.

Rachel Beckwith, photo King5.com

seize [ sēz ]

verb

1 [ trans. ] take hold of suddenly and forcibly.

° capture (a place) using force.
° assume (power or control) by force.
° take possession of something.
° (of a feeling or pain) affect (someone) suddenly or acutely.

2 [ intrans. ] (of a machine with moving parts or a moving part in a machine) become stuck or jammed.

3 fasten or attach (someone or something) to something by binding with turns of rope.

boston bound

Yesterday we took our quarterly trip to Boston to see Calvin’s neurology team. We said goodbye to Rudy the dog and pulled out of our driveway at seven. I sat next to Calvin and fed him breakfast in the car, sustaining only bruises to my psyche from various pings and biffs from his uncontrollable flailing fists. I had already reached my boiling point before we even merged onto the highway heading south.

The remainder of the trip, after breakfast, was uneventful and I even found myself taking seconds-long cat-naps, waking when I heard Calvin quiet, just to make sure he wasn’t having a seizure or to stop him from poking his eyes.

We arrived at the hospital early and the first order of business was to change a poopy diaper, followed by sticking (literally) an awkward plastic urine collection bag on Calvin to analyze anything we’d be able to catch in it. Immediately after that came the dreaded blood draw, but like most of our visits to this facility, the phlebotomist, a young woman who we had never met before, could have struck Calvin’s vein blindfolded, she was so skilled at her craft. As a result of her beautiful finesse of the needle, his blood flowed through the clear thin tubing like Gatorade sucked into a straw by a thirsty linebacker.

Our last stop was just down the corridor to see Calvin’s doc. She and her dietitian greeted us with their usual strong, warm hugs. Calvin laughed hysterically in Michael’s arms—just like when he hugged his Grandpa last week, who then remarked “this isn’t right." We gave her an update on his seizure frequency and his uber-manic behavior. She quickly answered the list of questions I had emailed to her previously and we talked, as usual, about drugs. It seems an idea I’ve had for several years—of using anticonvulsant drugs prophylactically—is possible. We haven’t tried the strategy before because Calvin’s seizures, until of late, have been difficult to predict, but now, whether it be a blessing or a curse, when it comes to foreseeing a seizure, I am nearly batting a thousand.

During the entire car ride home Calvin’s hysteria transformed from laughter into wicked fingering, screaming and incessantly fixing his hands over his ears. That behavior, combined with the fact that his walking and balance were practically flawless all day long, lead me to believe that a seizure was imminent.

So, last night at dinnertime we temporarily increased one of his seizure medicines, the one related to Valium, for just the next three nights to see if we can dodge the brain-bullet we are expecting to hit.

This morning Calvin awoke without having had a seizure, but sadly the few smiles he had for us just weren't quite the same, and his giggles were no where to be found.

monotony

My sister-in-law called me a couple of weeks ago, as she does on occasion, just to check in and see how we’re doing. She asked after Calvin and I told her he seemed to be having only slightly fewer seizures but, all in all, was doing pretty well. I went on to say that, although Calvin is generally happy—easily brought to euphoric giggles and grins when we nuzzle our faces into his neck, press our lips to his cheeks, wrap our arms tightly around him—that once in a great while when I'm running low on steam—and I know this might sound crass—I feel raising him is in ways like raising a farm animal or a dog: you feed them, you tend to them when they are sick, you clean up after their messes, you make sure they get regular exercise—you know, take them out for walks—and, although they might understand a few simple commands, you can’t bring them anywhere.

She listened intently. I continued, adding that although I have long since given up any grave concern over his missed milestones—Calvin’s developmental gap ever widening with each passing year as he continues to engage in the same activities with nearly the identical skill as he did when he was two or three—that I experience limited joy in the daily life of raising Calvin. Our days are monotony punctuated with a sprinkle of warm cozy snuggles for which I am incredibly thankful.

The only thing that came out of my sister-in-law’s mouth was, “I’m sorry.” I couldn’t have asked for a better gift from her. She didn’t try to tell me things would get better. She didn’t persuade me to look at the bright side. She didn’t try to say it wasn’t so. She didn’t exclaim, “everything happens for a reason.” She simply listened and said she was sorry. In doing so she totally validated my regret, and I am completely grateful, for I knew she understood that my love for Calvin runs deep and solid as an aquifer—that the two feelings of mine could rightfully, naturally coexist.

We finished our conversation with I love yous. I hung up the phone and went back to preparing Calvin’s dinner, drew up his pink liquid medicine in a syringe, cut his pills and began feeding him. I cleaned him up, brushed his teeth then Michael took over the nightly routine of walking Calvin’s burps out before changing his diaper and putting him to bed. I poured myself a glass of wine and with it I retreated to my garden sanctuary hoping to bring back some semblance of self, while waiting anxiously for Michael to join me.

Tomorrow will likely be another day just like today, just like yesterday ... and the day before that ... and the day before that. But as I reread what I have written, I realize that perhaps, in the same way I push Calvin to step outside of his comfort zone in order to make strides, I need to do more of the same myself in an effort to put an end to the monotony. Or just dive into a few more tickle-fests than usual.

present moment

Do not dwell in the past, do not dream of the future, concentrate the mind on the present moment.

— Buddha

scorcher

Yesterday it was scorching hot just like the day before, only hotter, though the hazy droplets that hung in the sky like some noxious mist had disappeared. We decided to take a stab at bringing Calvin out on the boat since by nine o’clock in the morning it was already well into the eighties.

Years ago, before Calvin was born, Michael and I owned a sweet little thirty-five-year-old Boston Whaler. We took it on lakes, tidal rivers and brackish inlets navigating carefully around rocks in the changing tides. Michael fished for bass and bluefish while I sunbathed on the bow dreaming up at gossamer white clouds sailing by.

The summer after Calvin was born we brought him along on a few of our river outings. Those excursions wreaked havoc on our psyches. He spent most of the time bawling and was difficult to handle in a life vest that practically devoured him. None of us had any fun. We stopped boating. We sold our beloved Whaler.

Eventually we secured some in-home nursing help to care for Calvin. Because of his seizures it took me months—perhaps years—before I felt comfortable leaving him for more than an hour at a time. But when I did we found another Whaler, smaller and slightly newer than our first. It took us until our third summer to get up the gumption to take Calvin out on it. Yesterday we finally did.

Michael skillfully backed the boat into Pleasant Pond, a beautiful lake laced with lush trees, cascading lawns and rustic cabins. We cinched Calvin into his life vest, a slightly better fit than the last one but still riding up around his ears. I hooked a bungee cord to the back of his chair and lassoed him snugly into it for support. We were frying in the heat so I brought an umbrella to shade Calvin from the unforgiving sun. As we flew across the water, the warm wind whipping through Calvin’s hair, he smiled.

When we found a small shady spot near the water’s edge I jumped in. The bottom was soft and muddy, long wispy grasses gracefully suspended in the still water. Michael hoisted Calvin down to me as I stood precariously on a mossy submerged log. Calvin delighted in the cool water, splashing and giggling in my arms. My heart swelled with joy and triumph for the mere fact that we were able to make this outing work.

Later in the evening we opened up the house—which had inched to 88 degrees—to let a breeze run through it, albeit a 96 degree breeze. Just after our guests arrived I became faint and nauseous from dehydration and had to sit down for the good part of an hour. As I drank copious glasses of water, while lethargically chatting with our guests, I reflected on our wonderful day at the lake and my happy feeling of triumph. But in my dizzy meditation my thoughts turned to the less fortunate, to those who have no access to the water, no insulation in their homes, no fans, even some who have no running water. What are they doing in this heat—this relentlessly sizzling summer day—I thought. I felt foolish gloating over my successful day on the water, taking such leisure for granted. We're incredibly lucky, I thought, as I so fortunately sipped another glass of cold, filtered, fizzy water and hoped the world could keep cool, at the very least for the night.

photo by Michael Kolster

circus

Week before last, while I was feeding Calvin, I spoke with a loved one who had had a tough day. The entire time I was on the phone Calvin screamed his head off and I had to ask her to repeat herself nearly every other sentence. She laughed about it and I told her, half chuckling, “it’s not funny ... well, it’s kind of funny but it’s not THAT funny.” We cheered each other up.

When Calvin was finished I cleaned him up, brushed his teeth, gave him some water, removed his dripping, soiled bib and tied a fresh kerchief around his neck. Michael was busy paying bills and I was late in bringing dinner to a girlfriend’s house. I left Calvin in his high chair while I called and ordered some take-away Indian food.

Calvin impatiently pulled his usual stunts of thrashing, screaming and howling, banging his head on the back of his chair and rocking forward into his wooden tray. One of the tray’s flimsy plastic latches had recently broken so, lurching slightly too far, the tray dislodged, Calvin pitched forward and the heavy wooden chair he was belted into came crashing down on top of him. Just as his forehead smacked the floor I caught him, barely breaking his fall.

“Goddammit” I blasted at the top of my lungs and, seeing that Calvin was fine—even laughing—Michael blurted “relax.” I heatedly explained how I’d had about enough of Calvin’s hyper screaming mania, like some caged animal. “So have I,” Michael replied. “But you don’t have to listen to it all day long every day like I do ... it’s different,” I huffed.

Michael whisked Calvin up to escape my seething ring of fire, at which point I noticed a single blue felt slipper on the floor. I peered out the window to see Calvin, like a miniature clown in his skinny striped pajamas, walking with Michael on the pebbly driveway with one slippered foot, the other lily-white and bare. I grabbed the moccasin and stomped out the door full of steam and muttering. But I realized I needed to chill out, so I took a deep breath and, trying to laugh at the somewhat comic scene, brought the slipper out and slid it onto Calvin’s foot. “Good thing you’ve got a wife with a decent sense of humor” I said. “Good thing” Michael replied, smiling.

I kissed my boys goodnight, slurped down the last bit of my drink and headed out the door to pick up the Indian food. All was well in the Kolster-Shake shack, albeit somewhat of a circus.

photo by Michael Kolster

picnic in the park

Tuesday night Michael and I went to our first Seadogs baseball game in eight or nine years. The weather was gorgeous, warm and clear below pristine skies. Michael’s former student had two tickets waiting for us at the box office as guests of his firm. They gave us a recyclable-cloth shopping bag full goodies; a stuffed Snoopy dog, a Nerf style baseball, a ball point pen and a sharp navy visor. It was a picnic in the park—the ballpark.

In a roped off area we redeemed vouchers for a couple of cold beers that we eagerly slurped while queueing up for grilled barbecued chicken sandwiches and dogs. From behind the counter a friendly young man in a white apron scooped spoonfuls of hot baked beans onto paper plates and we munched delicious honey-mustard slaw from clear plastic cups.

We shared the end of a painted green picnic table with a boy and his father. The kid, who was skinny with delightfully buck teeth too large for his mouth, had to be about ten or eleven. I reached into our bag and pulled out the Snoopy and the Nerf ball. Knowing our son Calvin wouldn't appreciate the toys I asked the boy, ”do you have a friend who you might like to give these to?” He and his father had already received their own bag of goodies. A huge smile came across the boy's face as he piped, “sure!” I rummaged a bit one more time and produced the visor, “and what about this? Would you like to have this too?” He beamed and looked up at his father who smiled reassuringly. I turned to Michael, my heart tightening with intermingled emotions of joy and sorrow, “that shit makes me cry,” I said in a soft voice. “Me too,” he replied, and I could see him swallow hard from behind his sunglasses. “You need these?” Michael asked, and passed me my shades. I put them on just as tears dripped onto my cheeks, the low sun shining hot on my face.

Between innings, later in the game when we were sitting in the bleachers, they held a contest matching a little boy against the team mascot, the Seadog—some poor soul baking inside a plush dog costume with a huge head wearing baseball garb. Both ran from home plate in opposite directions tagging each base. The two met at second and did an awkward do-si-do past each other. The boy, no more than eight, triumphantly made it to home base first, winning the game jumping and flapping his arms with joy. My kid will never get to do that, I thought. That parent must be so pleased and proud. That child so full of glee. My heart sunk.

But then I noticed a young man sitting in one of the last row of bleachers in the next section over. He was rotund and somehow awkward, wearing glasses, a hearing aid and a baseball cap slightly askew. It seemed he was with his parents. Clearly enjoying the total experience, periodically he'd jump up and shout exuberantly, appearing as a caricature of himself. Once, in his excitement, he nearly spilled the drink from his cup. "He's got Down syndrome," Michael leaned in to me. I smiled warmly and slipped my hand into his.

photo by Michael Kolster

fun in florida

temblor

I sense them coming, the fierce seismic temblors in Calvin’s brain. In the days before a seizure I see the pressure building, like a strained fault line, in a sick crescendo of screaming, hyperactivity, eye-poking and fingering—the obsessive rubbing of his fingers and thumbs together—smack in front of his face, often with a vexed expression, his teeth clenched under fiery eyes.

It has only been just over a week since Calvin’s last seizure, though I’ve been expecting one since Saturday night. In the days and hours before one strikes there are moments when I hardly recognize my kid as human, more like a rabid dog or a neurotic, pacing animal trapped in an iron-barred cage.

This morning at four-thirty the fault line released its wrath on Calvin’s brain and he cried out from his crib. It’s been very hot these past few days, the air humid and close like a shroud, so the blankets that pad Calvin’s crib were rolled up like an awning to allow the flow of cool air. When I reached him his crooked arm was caught through the crib rungs making it difficult to extract in order to get him onto his side safely. Michael and I stroked his smooth torso and waited for the temblor to stop.

And like most earthquakes, Calvin experiences aftershocks, little tremors and shudders in the minutes, sometimes hours, after his seizure. Often it’s difficult to know the difference between a seizure and an aftershock. I placed my hand flat on my boy’s chest to feel his heart pounding reliably but not frenzied, which calmed my nerves some. I felt gas bubbling and pinging in his gut like hot water in an old radiator that needs bleeding. His eyes rocked like a metronome in their sockets but his skin was right, his lips pink and reassuring.

At last he fell asleep between us, still and quiet, his eyes slightly open under his pretty lashes. With my hand resting on his supple thigh I fell into a shallow slumber, too. And when we woke up he turned to me and wrapped his arms around my neck and cooed so wantingly, so sweetly “uh-uh.”

Please share Calvin's story with others to help promote epilepsy awareness in an effort to find a cure. All it takes is forwarding the link, sharing it on your Facebook page or simply by word of mouth. It's not hard. Just do it one story at a time.

Calvin's brain waves, photo by Michael Kolster

boy on a plane

Yesterday was the end of a short week’s holiday in Florida. After tearful goodbyes to Calvin’s grandparents, aunts, uncles and cousins we were dropped at the airport curb.

When we reached security a nice man in a neat blue TSA uniform greeted us and immediately calmed our nerves with patience and reassuring words. The sparkle in his eye matched the stud in his ear as he passed discs of cotton over Calvin’s battery of medicines that I had stuffed into a one-gallon zip-lock bag. “Is your son an epileptic?” he gently asked. “Yes, he has epilepsy,” I replied. As he continued examining Calvin’s paraphernalia he mentioned that he had been hit by a car when he was seventeen and began having seizures. The phenobarbital he was put on, he said dolefully, made him into a teenage zombie for several years. I knew exactly what he meant.

As we approached the gate we saw a handsome highschooler in a wheelchair who was traveling by himself. The four of us boarded the plane first and were seated behind the bulkhead, Calvin and I on one side, Michael and the boy on the other. No sooner than I had buckled him in Calvin started screaming bloody murder, his feet kicking marks onto the side panel, his arms lurching out grabbing fistfuls of my hair and yanking. The origin of this manic behavior is difficult to know. Is over-stimulation, discomfort or excitement? No one knows. My gut tells me it's the drugs and/or preseizure flurry. I decided to feed Calvin his walnut snack early trying in vain to calm his crazies.

Across the aisle Michael and the boy chatted. The boy explained that he had been eight weeks premature, had cerebral palsy, and was born missing half of his brain. He spoke in a slow, deliberate manner, a slight thoughtful pause before everything he said, his words round and full. He told us he had seizures and that he was taking a drug that Calvin had also tried when he was just two.

I stretched an arm across the aisle and gave the boy one of my business cards, the one with a photo of Calvin and me on the front, my mission statement and blog address on the back. We agreed to become friends on Facebook. He told us that he loved to read and write. Michael shared some photos on his ipad but Calvin was a magnet. So as they passed the time talking of swimming, photography and books, the boy craned his neck often to watch our son.

At one point the boy noticed the exasperation on my face having to deal with my screaming child. He asked if it was difficult to raise Calvin. Michael replied with total candor and said yes. He saw me try to quell Calvin’s shrieks. “Poor little guy,” he remarked with the purest of empathy, “he can’t help it.” I wanted to cry.

The jet pulled up to the gate and Calvin walked hand-in-hand with me up the gangway so very well, I thought, he’d be having a seizure soon. As we waited for the boy to be wheeled up by a skycap we saw his mother standing patiently, the boy's sweet features mirrored in her face. We introduced ourselves and talked briefly about our encounter with her son and the epilepsy he shared with Calvin. Just then the boy emerged from the hallway, his long thin arms outstretched like an albatross with a huge smile that said, “Mommmmmm.” At this my dammed tears finally cascaded down my face. I quickly brushed them away with the back of one hand, the other holding Calvin’s as he leaned affectionately against my legs wanting to be picked up.

photo by Michael Kolster

irkometer

My irkometer goes from zero to sixty in about five point three seconds as soon as Calvin starts into his hyper, manic behavior—thrashing about, screaming, kicking, spasmodically punching the air, ripping his glasses off, biting channels into his wooden tray. Any semblance of calm I once knew goes right out the window. Any mellow resolve found in a single glass of white wine in summer is broken, with tears, like a child’s spilt milk.

don't be such a whiner

On the way down to Florida last Tuesday we had a brief layover in Charlotte. When the plane taxied in and parked we grabbed our duffels, unbuckled Calvin and, with one bag over my shoulder, I put Calvin on my hip. I followed Michael, who was awkwardly lugging two bags plus the car seat up the ramp to the gate. We dumped the stuff at the corner of some available chairs and I changed Calvin’s diaper right there on the spot. Michael walked Calvin around the terminal holding his harness reins, the two of them weaving between loitering passengers who were drinking coffee, working on laptops, talking on their cell phones and gawking at Calvin.

After about half an hour and without any advanced notice that boarding would soon begin, the airline representative summoned families with small children and anyone who needed extra time to board. We hurriedly gathered our stuff, I hefted up Calvin and we started to make our way to the gate.

“Hurry up, you’re holding everyone up!” a man behind me irritatingly groused. I turned to see him, clumsily balancing Calvin on my shoulder as I did so, and looked him square in the eyes. He was short, thin and middle-aged with a longish salt and pepper goatee and wannabe-hip, angular black glasses. “You try it,” I snapped back to which he griped, “I already have.” I wanted to say, "I doubt it", or, "oh you think so, do you?" And later I thought I should have said, "don’t be such a whiner", or one of my favorites that I cooked up but have never been able to use, "you're not bad looking but you sure are ugly."

Michael urged me not to engage with the man any further. I thought of what my mother-in-law wisely advises: don't get into a pissing contest with a skunk. I secretly hoped the guy would be seated directly behind us so that he could fully and involuntarily enjoy Calvin’s kicking and flailing and screaming for the next hour-and-half flight (though Calvin ended up being quite composed.) Instead, the man sat one row behind us but on the opposite side of the plane, with his head tilted back, his chin disappearing into wrinkles and folds, as he snored pathetically through a large birdlike nose, his dark gaping mouth no doubt catching flies.

christy pipes

Shorty. Boss. Crust Mumford, Crash Crust. Shakester. Milkshake. All of the nicknames I’ve been given over the years have a story. One of my favorites is Christy Pipes.

Somewhat of a late bloomer, I didn’t learn how to ride my bike or swim until I was seven, whereas my older brother Matt swam his first race at the age of four. Even so, I started swimming double workouts when I was in Junior High School—an hour or so in the pool before school and up to two hours after, plus Saturdays. Part of our afternoon workouts was spent doing seemingly endless stretches, calisthenics and weights. That’s when I learned I had something called muscle.

In college the exhausting regime continued, though workouts increased to four hours a day, with an hour of weights and exercises. Slender, cut, sweating bodies performed hundreds of sit ups, push ups and leg lifts under our coach’s watchful direction. Eventually I was able to lift ten pounds more than my weight for a few repetitions on the Universal Gym. My muscle mushroomed.

After college I played water polo on a mens' team, a sport my brother Scott taught me when I was twelve. The big lanky guys, the burly ones and the stocky ones, all outsmarted me, outscored me, out defend me. But I was one of the fastest—often chosen to sprint for the ball at the start of the half, and I maneuvered in a way many of my teammates couldn’t—a jet ski flitting around a bunch of barges and tugs. Those big wonderful hunks took me under their wings and taught me how to put real muscle behind my shots.

Then I moved to San Francisco eventually landing my dream job at Levi Strauss, and after an eighteen-month hiatus from swimming, I started frequenting a nearby outdoor pool during lunch. The pointed Transamerica pyramid practically cast its shadow onto me as I swam sun-drenched laps in the cool clear water, some swaying, majestic palm trees as my companions. Soon my colleagues endearingly started calling me Christy Pipes because of my large, steely biceps. I guess my muscles had memory.

I don’t get into the pool much these days, though I haven’t forgotten how, nor do I perform calisthenics—not really. But I have had Calvin to thank for my strong, albeit aging, body, so my buddies can still call me Christy Pipes, and a couple of them still do.

photo by Michael Kolster

beach bummed

Yesterday morning, while Grandpa and Uncles were golfing, we took Calvin to the beach—in Florida—with his Grandma, his Aunts, nephews and niece, all gathered together for a family reunion. It had been over a year since we’d been there before. This time it was humid and hot—blazing hot.

We unloaded the car and walked a hundred yards or so on a wooden plank path loaded down with towels, umbrella, drinks and sunscreen. Although it was only about ten o’clock it had to be ninety-five degrees. We plunked our stuff down close to the mouth of the path, I spread out a towel and laid Calvin on it. Michael sunk the umbrella deep into the firm hot sand. It cast a meager shadow under which I dragged Calvin, who was wilting like a lily in the unforgiving heat. We figured he’d be happier in the surf, so taking his hand I walked him a few yards before he stubbornly collapsed, then I heaved him up onto my hip and carried him the rest of the way. When we reached the water’s edge I plopped him down and a tiny wave crested over his lap. He giggled with delight then promptly put his face in and gulped a mouthful of saltwater. It didn’t seem to faze him, nor did the fistful of melting sand he then tried to eat.

Michael strolled down to join us and we slathered ourselves, and Calvin, in warm greasy white liquid squirt from a tube, hoping to ward off the promise of a bad burn. The sticky lotion made me feel hotter and grosser than a French fried potato dipped in mayonnaise and rolled in sand. By this time poor Calvin was rubbing grit and salt into his tired eyes. We decided to abort the mission, but at least we had attempted to do what the rest of the world seems to do with such ease. I was proud for the simple fact that we weren’t total wimps—didn’t give up without even trying.

Hot and bothered, the three of us left the others behind no more than twenty minutes after we’d arrived. Once in the car Michael blasted the AC and took us, thankfully, to a nearby swimming pool. The gated oasis was nearly deserted and the refreshing water, cool and flat, immediately dissolved away all the nasty sand and salve. And like the little red stunt plane we were watching high up in the sky our furrowed scowls turned upside down into placid smiles while Calvin sat next to me in Michael’s lap, dipped his face into the water and laughed.

detail, photo by Michael Kolster

fish on a dry dock

Last Monday it was warm and humid, with a nice summer breeze. It was too hot to mow the lawn earlier in the day, so I waited until the pines cast their long cool shadows across our lawn. Calvin was upstairs with the nurse enjoying a bath on his thirteenth day of seizure freedom.

The grass felt soft on my bare feet as I thatched swaths of cut green blades in rows across the back yard. Through an upstairs window I could hear Calvin squealing with delight, vigorously splashing water in the bathtub. Then things went silent and the nurse’s calm yet urgent voice called my name. Immediately I knew something was wrong. Without answering her I instantly kicked off my loose leather flip-flops, darted across the yard into the house and flew up the stairs solidly by twos. As I rounded the corner into our bedroom I saw Calvin lying naked on the corner of the bed where the nurse had put him, his thin legs flopping off the side jerking in spastic waves. His feet were blue. He was dripping wet so I grabbed a towel, laid it over him and patted him dry as the convulsions ripped through his body, his mind.

The nurse went to fetch a second towel just as Calvin entered what I call the second phase of his seizure, the one where he seems to struggle for each breath. The sound he makes is haunting, like wind sucking through a narrow crack in an old wooden door or the dry rasp one imagines of a choking victim. Then he entered his third phase—contorted limbs, terrified expression and trembling all over.

And although I’ve seen Calvin have hundreds of these seizures, it’s still so very difficult to describe the feeling of helplessness, despair and heartbreak to witness your very own innocent, pure flesh and blood writhing there like some helpless fish on a dry dock. And all I can do is sit there and watch, and wait, and know there will only be more.

photo by Michael Kolster

this is what you shall do

This is what you shall do; Love the earth and sun and the animals, despise riches, give alms to every one that asks, stand up for the stupid and crazy, devote your income and labor to others, hate tyrants, argue not concerning God, have patience and indulgence toward the people, take off your hat to nothing known or unknown or to any man or number of men, go freely with powerful uneducated persons and with the young and with the mothers of families, read these leaves in the open air every season of every year of your life, re-examine all you have been told at school or church or in any book, dismiss whatever insults your own soul, and your very flesh shall be a great poem and have the richest fluency not only in its words but in the silent lines of its lips and face and between the lashes of your eyes and in every motion and joint of your body.

—Walt Whitman, from the preface of Leaves of Grass

photo by Michael Kolster

sharing stories

Last Friday I jumped onto the back of Michael’s motorcycle, wrapped my arms around his waist and we sped off to the next town over for an ice cream fix. When we arrived, we doffed our helmets and leather jackets and were greeted by a smiling blond behind a small window. She brought us our sugar cones piled high with cold creamy sweet stuff, and as we turned away from the shack a van pulled up beside us. A slender dark-haired woman, probably several years younger than I, stepped out of the passenger side and rolled open the back door. As I passed behind, her child peered at me from his car seat, his head slightly bobbing, a look of earnest on his sweet round face. Immediately, I knew the little kid returning my gaze was not just an ordinary boy.

His mother lifted him out and carefully set him on his unsteady feet. As she held his hand he did his best to walk a little, shuffling slightly as he did so. Like Calvin, he stumbled and had trouble keeping balance, each step an effort of coordination and strength. Watching the two of them from a nearby bench I felt as if I were having an out of body experience, as if I were somehow seeing myself with Calvin. Michael encouraged my desire to approach the couple to ask about their son. I was hesitant, not wanting to insert myself into the intimate lives of strangers, but we had nothing to lose and everything to gain. Plus, Michael said he’d go with me.

“What’s your son’s name?” I asked somewhat nervously. The woman, casually attractive with short dark curly hair and wearing a pretty black and white printed blouse, responded kindly, warmly, said he was five and a half. I introduced myself to her husband and shook his hand while remarking that I thought our son Calvin might have something in common with their boy. Her son, as she explained, has a very rare condition, with a long name I’d never heard of, that he shares with about a hundred other boys in the world. I mentioned Calvin’s seizure disorder and his other physical and developmental challenges and asked if her son had seizures too. She said something like, “not yet, that comes later.”

The boy sat quietly and steadily on the picnic bench leaning forward to take licks off of his father’s ice cream cone. I smiled. I wished Calvin could do that. I asked if he was their only child. When she said yes my throat tightened, and as I answered her same question my voice quivered, I had to take a deep breath. Michael and I don’t know any other families who share the reality of having an only child who is severely disabled. We must have so much in common, I thought to myself, and I desired to know everything at once—to open her mind, see into her thoughts, know her heart’s deepest feelings—to connect.

We happily exchanged email addresses on a flimsy white paper napkin torn in half. As we said our goodbyes I asked if she liked wine. Affirmative. I told her that perhaps a glass of wine was in our future. I am hoping so.

photo by Michael Kolster

chokehold

Five years ago yesterday we almost lost our boy.

We had been barbecuing at a friend’s house on the clear hot day. With no real warning Calvin started seizing. We called 911 and an ambulance rushed him to the hospital. His seizure abated but then resumed in the emergency room and showed no signs of stopping. We were petrified. The first two courses of emergency medication had no effect. Two nurses tried in vain to put in an I.V. so they could administer a bolus of Phenobarbital. A pediatrician arrived to take over the difficult task of inserting the I.V. needle into our low-tone boy who had already been convulsing for over ten minutes.

I sat close to Calvin who was lying on his side, under bright lights and a thin cotton blanket, wearing only a diaper. His face was pale and his lips and fingertips tinged blue. His body jerked rhythmically, his eyes wide and vacant between every cramping squint of his lids. I stroked his thick hair, put my face next to his. Michael leaned in close with us, his strong hand on Calvin’s hip. We spoke soothingly, reassuringly to him, told him everything was going to be okay even though we knew his mind was in oblivion.

After what seemed like an eternity the doc eventually struck a vein and pushed the syringe-full of powerful anticonvulsant drug through the clear plastic tubing into Calvin’s bloodstream. The convulsions continued. It had been twenty-five minutes. I remembered reading that the longer seizures burn uncontrolled the harder they are to stop, that seizures can cause brain damage after only five to ten minutes. After thirty minutes they can be lethal, shutting down the vital organs that support life.

When forty minutes had passed the seizure still showed no signs of releasing its chokehold on our precious, two-year-old boy. I began realizing that we were losing him with each passing minute—that his next minute might be his last. The only thing I could do was to cover him with kisses. I nuzzled my face into his neck, just like he loved me to do, and kissed him with reckless abandon. I was aware of nothing else but my love for this child of ours who was fading away right before our eyes.

And then suddenly he stopped jerking. His body calmed and melted into the firm bed, the color came back into his face and he began to breath normally again. He had dodged a bullet, but little did we know he would remain a target for hundreds more to come.

photo by Michael Kolster

playful games

Today I took a big fluffy load of laundry out of the dryer in the basement. The fresh smell and dry warmth sent me back. I was reminded of how my mother used to bury me in soft mounds of warm clothing. It was pure delight, especially on cold rainy days. I realized that Calvin wouldn’t fully appreciate the playful intention and frivolity of such a gesture—if I lovingly dumped it on his head like my mother used to do—even though the warmth might feel good to him.

Then it made me think back of playing in piles of dry leaves we had raked from under a couple of large regal maple trees in my backyard. We’d arch high on swings and eject ourselves into the thick heaps, scattering crumpled brown leaves into the wind. Then we’d bury ourselves under them and hide, waiting for my father to find us. I’ve never done that with Calvin. Likely never will.

My mind continued to reel with images of all the playful games and silly larks I might be engaging in with my seven year old son, if only he were healthy, normal, could stand up and walk by himself, could understand humor and silliness in that way. And though I grieve daily—will always grieve—the absence of these millions of subtle gestures, these playful moments between a mother and her child, I am grateful for the fact that Calvin relishes tickles and kisses and hugs. At least I have that—for now.

But I’ll forever be missing the chance to cartwheel and somersault in the grass with Calvin, see him sled down a hill or climb a tree, ride bikes with him, play in the sprinkler and build glorious sandcastles at the beach.

photo by Michael Kolster

mindfulness

When mindfulness is there you are attentive to yourself, you are attentive to other people around you and understanding becomes possible, compassion becomes possible.

- Buddhist Monk Thich Nhat Hanh

photo by Michael Kolster

reminders

Two summers ago Calvin was having convulsive seizures every day or two. We were trying to wean him from one of his three antiepileptic medications that happened to be addictive, a relative of Valium. The wean caused him to have withdrawal seizures in addition to his reliable, epileptic seizures. He pretty much stopped eating and held his medicines in his mouth for up to ninety minutes before swallowing, as if he’d forgotten how. He lost five pounds in a matter of weeks.

So although we’re strictly limited from most of the activities we love and thus had hoped to enjoy as a family—bike riding, camping, boating, fishing, going out to breakfast or lunch, walking in the park, heading to the playground, picnicking, strolling to the ice cream stand, heading to the beach—I am pretty thankful that we are not living the nightmare that we were two years ago.

However, in the world of epilepsy, particularly uncontrolled epilepsy like Calvin's, I am reminded that nothing is guaranteed, that things can change for the very worst in an instant. And so I am grateful for—but don’t take for granted—the days when Calvin doesn’t have seizures and and I hold fast to the moments when he seems to be a happy-go-lucky little kid.

malady of millions

About one in one hundred Americans has epilepsy—three million of us. Each of these individuals likely has parents, siblings, offspring, a companion—or all of the above—who are intimately impacted by the disorder. It also means that each of us—whether we are aware of it or not—probably knows a handful of people who suffer epilepsy’s hardship, either directly or indirectly. That’s tens of millions of Americans who are touched by this misunderstood, marginalized, grossly underfunded malady.

Epilepsy afflicts more people than multiple sclerosis, cerebral palsy, muscular dystrophy, and Parkinson’s disease combined. Each year more people die from from status epilepticus (prolonged seizures), Sudden Unexplained Death in Epilepsy (SUDEP), and other seizure-related causes such as drowning, than breast cancer—many of them children—yet epilepsy remains an obscure disorder.

If you or someone you know doesn’t have epilepsy, there’s no guarantee of immunity. Epilepsy can strike anyone at any time, without warning. Seizures can attack fetuses, infants, toddlers, tykes, teens, young adults, adults and seniors. Often the cause is unknown, but it can be the result of genetics, lack of oxygen, head injury or stroke and can coexist with Autism, Cerebral Palsy, Down syndrome and Alzheimer’s amongst others.

If you or someone you know does have epilepsy, there is nearly a 40% chance that the seizures are not controlled by medication. And if they are controlled with medication there are egregious side affects to cope with on a daily basis such as dizziness, headache, gait disturbances, cognitive slowing, lack of coordination, nausea, loss of appetite, blurred vision, double vision, lethargy, drowsiness, suicidal ideation, depression, anxiety, hyperactivity, aggression, kidney failure, liver failure, lethal skin rash and—paradoxically—increased seizures, to name only a few.

Please, please share Calvin’s Story with others. Help bring us one step closer to a cure for epilepsy by championing awareness. It’s not hard. Just do it one story at a time.

little chemical gems

Innocuous looking epilepsy drugs.
Chalky white ones impersonating

albino Junior Mints.
Round or squarish and

emerald-cut with neat beveled corners.
Wafer thin discs that

melt in your mouth,

melt your brain.

Merry little multicolored two-tone
gel-caps like sick and twisted
Hot Tamales, Mike and Ikes or Good & Plenty.
Split them open like Pixy Stix.

Close your eyes and
sprinkle the sugar-white granules,

dissolve them on your kid's tongue.
They’ll send him into oblivion.
 

Blushing pastel colored oval lozenges
cut in half reveal
bright white centers like a
perfect coconut cream.
Cherry-flavored liquids
tint water pink as punch.
White powders swirl jubilantly in a cup like a
crystal snowball toy.
Mesmerizing.

These little chemical gems,
some all wrapped up in darling, 

shiny foil polka dot pouches
that are oh so fun to burst.
I’m waiting for the ones with the
candy coating and the chewy center.
No doubt they're in the works.
Maybe they'll rocket him straight to
Mars.

independence day

I grew up in the suburbs of Seattle in a long brick ranch style home built, I think, in the fifties. It rested on a lush hillside and boasted a spectacular view of Seattle and the Olympic mountains, that is, if you climbed a tree, which I found myself doing often.

On Independence Day, when I was Calvin’s age—about seven or so—after a full afternoon spent at our local swimming pool eating hot dogs and candy and turning to prunes from hours in the water, we returned home. Just after dusk I joined my parents and five siblings in the back yard to light sparklers, cherry bombs, snakes, bottle rockets and Roman candles. Clouds of smoke illuminated with the glow of sparks sprinkling and spraying from red, cream and blue paper cylinders, the acidic vapor stinging our nostrils. We laughed and danced around crazy, fizzing ground-spinners skittering across the smooth green cement patio shooting sparks at our feet. We spooned in mouthfuls of soft eggy homemade vanilla ice cream, melting in bowls stained with ribbons of blueberries, strawberries and raspberries.

When the night sky was finally dark, nearing ten o’clock, my father leaned a tall ladder against the garage end of our house. One by one we stepped up the rungs and planted ourselves carefully on the brittle shingle rooftop. From there we could see a gleaming Seattle skyline, pinpoints of light flickering at the horizon, a hovering strip of sky warm and radiant. Faint coolness began hugging our shoulders so we wrapped up in thick wool blankets anxiously awaiting the show.

Finally, the black sky erupted with ascending comets and bright dazzling chrysanthemums of brilliant crimson, violet and white. Thunderous booms punctuated the starbursts that adorned the night in glitter. I smiled at the satisfying toot and blow of horns from seafaring spectators, which skipped across the lakes and up the hill filling my ears. Perched in my father’s warm lap I slipped one hand into his and the other into my mother’s. It was a perfect moment and I wished it could last forever.

These days Michael and I stay home on Independence Day. Our last venture out together to see fireworks was eight years ago, the summer before Calvin was born. Maybe one day Calvin will hold a sparkler, gazing in wonder at its fizzy glitter. Perhaps one day we will view a spectacular pyrotechnic show together, as a family, but likely not from the rooftop of our home.

Independence Day July 2003, photo by Michael Kolster

ill will

One of my earliest memories is of playing with an older girl who lived a couple houses away. Her name was J.J. Nestled in the woods in J.J.'s back yard was a big old rusty smokehouse, a round metal structure with a cone-shaped roof like The Tin Man’s head. It was big enough to fit four or five little kids inside, perhaps even large enough for an adult to stand, its slightly curved door hanging on creaky flaking hinges, which when closed made it pitch black inside. Its dirt floor smelled musty, like rotting leaves or cat piss—or both.

I was about five, the youngest and smallest of the group of kids who played fort, climbed trees, and kicked the can. Throughout the day when any of the other kids needed to go to the toilet J.J. let them inside to use her large tiled bathroom with its mauve double sinks and plush pink shag rug. But when I needed to go she told me I had to do it in the smokehouse into an old corroded bucket. She shoved me inside and clanged the door shut, leaning on it so I couldn’t escape. Though frightened, alone in the dank blackness uncertain of my fate, I refused to obey her cruel demand. She eventually let me out, teasing and mocking me as I ran down the grassy hillside to my home, to my mother.

I suppose it's obvious that J.J. was trying to exert her control over me—a young innocent victim ripe for manipulation and torture. And while I avoided harm I didn’t get away completely unscathed, however, as I went on to try a handful of my own dirty tricks on unsuspecting friends when I got to be J.J.’s age. Thankfully, those regrettable acts left me terribly ashamed and I quickly grew out of that bent—became the hero instead of the villain. 

And while my boy Calvin—since he is always with an adult—is shielded from the ill will of other kids, I often wonder how he'd fare if he ever had to live in some sort of group home, like if something happened to Michael and me. Would unsound individuals prey on his innocence and disability? If so, would he try to defend himself? How could he tell someone that he was being harmed?

I can only hope he'd have the wherewithal to run away like I did.

detail, photo by Michael Kolster

wearing robes

Though my boy usually wakes between five and five-thirty, some days Calvin and I unabashedly stay in our robes until nine or ten o’clock, like today.

Mornings Calvin usually enjoys spinning in his industrial strength johnny-jump-up and so I try to take advantage of this time to get some things done while my hands are free from their otherwise constant tether to him.

I finish my coffee. I write. I read and answer emails. I do things that allow me to keep an eye on him like rinse dishes, empty the dishwasher, and eat breakfast. Today I began recalculating his meals, called for refills on a few of his six medications and special ordered his special yogurt. Often I research new epilepsy treatments, call his dietitian, his doctors, his nurse, and fold laundry. Sometimes, though not often enough, I vacuum or sweep. Rarely, I read the news.

So when the rest of the world is off to work or to the farmer's market or perhaps embarking on the day's fishing expedition, we're still handsomely clad in our fleece.

Who has time to get dressed?

photo by Michael Kolster

summer ride

Yesterday I went for my first ride of the summer, hoping to cast off some of the weight my spirit was feeling. The sky was cloudy with only the slightest threat of rain. It was neither warm nor cold—a nice in-between with a mellow breeze gracefully blowing through the trees, across my knuckles and up my unbuttoned thick leather cuffs.

As I got up to speed, wind whistling through my helmet, I breathed in a wonderful strawberry-vanilla-honey scent, warm and soothing—intoxicating really. I couldn’t be sure what it was until I rounded a bend and, down-shifting, a vast field of clover spread out before me. The blanket of faintly lilac-pink colored blooms was dotted with lanky bobbing yellow blossoms and bent pale-tasseled grasses. Serenity.

I passed a tall maple rising majestically from a roadside knoll, its stark ashen-gray fingers spread against a gleaming silver sky. It appeared as an inverted lightening bolt, its foliage long dead and stripped of bark revealing a beautiful smooth sinewy form. I wondered how long it would stand—had it already been standing. I thought of Calvin's seizures.

My mind drifted from its troubles the further I rode on, passing a weathered zig-zaggy split rail fence, then a neat white picket and finally an old field stone wall covered in lichen. I had to chuckle when I motored by a beaten, rusty yellow sign that read “SLOW CHILDREN PLAYING,” a tangle of raspberry vines inching in on it.

At last I flew over a small hill coasting down its other side and settling onto a thin peninsula, which opened to a wide inlet. The sky glowed like white-hot embers that touched a pewter sea. I cut the engine. Silence.

I wished I could remain there for a longer part of forever.

detail, photo by Michael Kolster