on a jet plane

From yesterday:

The first time I set foot on an airplane I was seventeen years old. My parents took me to visit my sister who was living in the Virgin Islands teaching people how to scuba dive. I experienced a lot of firsts on that trip: traveled outside the continent; drank my first mixed cocktail (I think it might have been a daiquiri); watched my first movie screened from inside a jungle; learned how to scuba dive; collected and ate conch for the first time (and the last); weathered a hurricane; sweated in my sleep; belonged to the minority; seen my mother in shock after she’d been mugged; voiced anger at my dad; sat inside a car ankle-deep in rainwater.

Since then I’ve probably been on hundreds of flights for work and for leisure—to Istanbul and Indiana, Amsterdam and Athens, New Orleans and Nairobi, Cairo and Chicago, São Paulo and Salvador, New York and Nashville, Dallas and Dar es Salaam.

There was a time when we traveled a fair amount with Calvin—before the epilepsy—but taking him anywhere these days makes for a difficult preparation and journey and, once at our destination, we find ourselves in the company of a completely dependent kid without the aid of a nurse, without the luxury of long school days, often lacking the johnny-jump-up and absent a safety bed. So, though we used to travel cross-country with him, we don’t anymore, though perhaps one day we will.

Today I am headed to Los Angeles. It feels strange to wrestle the throngs headed west with me—the parents of shrieking babies, the waxy men and women who’ve put their faces under the knife, the irritable flight attendants, the svelte yoga chicks, the potbellied businessmen, the ill, the elderly, the pierced and tattooed, the electronically addicted, the preppy dudes in first class talking across the aisle about fairways and golf balls and caddies.

I see a mother with her boy who must be a few years younger than Calvin. My eyes linger on him waiting to see what he does next. He moves effortlessly—tetherless—from one airport gift shop display to the next. His eyes fix on objects, on his mother, then he asks her for candy. Words stream from his mouth in perfect syllables. She understands him. She knows what he wants, but denies him. The boy doesn’t melt into a tantrum, doesn’t flop onto the ground when she asks him to come. Instead, he floats and buzzes around her, quietly, like a faerie. She floats, too, unburdened, her hands free, her eyes on the gate ahead trusting that her son is flitting close behind.

Once seated, I open my book, The Reason I jump. It is written by a thirteen-year-old Japanese boy who has autism. He is telling me why kids with autism do what they do, and I feel I am reading about my boy Calvin, perhaps learning better how he ticks. The author is telling me that Calvin’s behavior isn’t his fault, and while I know that to be true, I need to be reminded. At once, I want to turn the plane around, haul ass back home, scoop Calvin up and kiss him all over—my floppy, wordless, legally blind, autistic, seizure-stricken, drugged up, hyper, developmentally delayed, precious boy. And it's an unsettling feeling to realize that no destination in the world will ever feel completely good and right as long as I know that Calvin can’t be there floating along beside me.

photo by Michael Kolster

disparity

According to the CDC, as many as three million Americans and their families suffer from epilepsy. One in twenty-six will be diagnosed with epilepsy at some point in their life. Chronic childhood epilepsy can result in severe developmental deficits due to uncontrolled seizures and drug side effects. More Americans—including our children—die every year from epilepsy than from breast cancer. These are just a few of epilepsy's heinous statistics.

Epilepsy affects three times the number of people that have Parkinson's disease (nearly all of whom are adults) yet annual NIH funding for epilepsy research does not reflect that discrepancy.

The disparity illustrated in the colored graphs below is indefensible, and is likely due to a variety of factors including epilepsy's long and recent stigma, its myths and misconceptions, its lack of a celebrity advocate, and its lack of general advocacy due to discrimination, marginalization and ridicule that epilepsy sufferers and their families fear.

Please help level the playing field in any way you can. Share this story and/or give to CURE epilepsy at: http://www.calvinscure.com

if it's not one thing it's another

now he has rashes. are drugs the culprit? the banzel, the keppra, the nystatin? is he burning or itching or in pain? they’re on his face and his groin and i look at internet images of hives and steven’s johnson syndrome (nystatin can cause them both) and am horrified. he coughs and gags and whines and writhes and kicks. is it the rashes? is it the pdd-nos? is it nausea or indigestion or reflux? can it be a looming seizure? or the reduction in his banzel? or his growth spurt requiring a bigger fix of clobazam? is he suffering some sort of withdrawal? is he hungry or thirsty or full or constipated or crampy or bored or frustrated or all of the above? he’s back at poking his eye and grinding his teeth. in the bath last night he was a raving lunatic. flapping and flailing in a frenzy of bony knees and ankles and elbows knocking porcelain until his joints were marked and red. thankfully the padded helmet protects his head ... so far. his hyper coughing sends me through the roof. i don’t like what i’ve become. i am wretched, and—of late—regrettably more familiar with this miserable countenance. michael is so patient and understanding, helps me feel myself again, helps me smile, helps me live in the moment and get through the next, of which i most surely dread.

still shot

don't go back

There are some people in this world who are pure souls. My sweet little retarded boy Calvin is one of them. He affirms it with a sea of unconditional love, his lack of desire to hurt or conquer, his impartiality, and his indifference to material things—all qualities I believe can heal the world. At the same time he expresses a most admirable (though sometimes irksome), determination. And he is a boy who has a penchant to do what is right even when it is difficult.

Of late, Calvin has moved me to ponder this country, which our family is fortunate enough to call home. I feel grateful for the day that this nation of immigrants was founded. It was a landmark moment that represented many freedoms, a time that underscored the escape from religious persecution, the iron hand of abandoned monarchies and the shackles of caste societies. But this utopian birth of a nation had been bloodied by its ruthless slaughter of our indigenous people and the abominable institution of slavery that reigned for years in the name of oppression and profit, even in our forefather’s homes. It was a dark time when poor men, women and blacks were barred from the right to vote or own property, a time when good medical care and a decent education were reserved for the privileged few.

But thanks to the courage, suffering and tenacity of champions like Susan B. Anthony and Frederick Douglass, slavery was eventually abolished and blacks and women won their right to vote. The civil rights movement in this country worked to end legal discrimination and segregation, and the sexual revolution of the sixties and seventies promoted—among other things—birth control, thus improving the lives of millions of women and families. We have evolved into a country in which our veterans are once again revered, men and women of different races and people with epilepsy can marry, and our disabled people have shed the weight of shame, where now only the ignorant few cast their ridicule and scornful glares.

I reflect on our history and marvel at how far we have come despite so much bloodshed, subjugation, cruelty, injustice, and suppression. We have reached a better place. But there is so much more to do, so many who still stand in the cold shadow of inequality, pressed under the thumb of those who would deny them the same freedoms that they themselves—who profess to promote liberty—enjoy. And there are those who would take away the precious freedoms and advances fought so hard to attain, and who would gladly cast us aside like a bit of trash, or climb on our backs just to get to the top, never once stepping into our shoes.

And so I look back to see where we have come from, and to learn. But more so, I look forward to a society in which everyone is treated equally—for we were born as equals—one in which each of us is free to enjoy life, liberty and the pursuit of happiness, where condescending slurs, misogynous attitudes and biased policies against women and girls are eradicated, where everyone can marry the one they love, where our criminal justice system isn’t an ugly mirror of blatant racism, where the gap between the haves and the have-nots gets narrower not wider, where corporations are not considered people (people bleed), where the separation of church and state still abides, where everyone who wants to go to college can do so without getting sunk, where sick little kids like my Calvin are not at risk of losing or being denied health insurance. I dream of a homeland in which the value of justice and inclusiveness are a powerful and noble example to the world, not one that would promote bigotry, exclusivity and the accumulation of massive wealth and brute power for the privileged few over opportunity, well-being and equality for every last one of its people.

And so, with the pure spirit of my son Calvin in mind, I think to myself out loud: lead by example, move forward, embrace progress, keep on truckin’, stay the course. And be reminded to keep looking back ... but just don’t go there.

Susan Brownell Anthony

Frederick Douglass

Calvin James Kolster

happy birthday, ben!

Our nephews Ethan and Ben—brothers—both have autism. They are lovable, funny and smart. Today is Ben's twelfth birthday. We sang him Happy Birthday over the phone, then spoke with him one by one.

"Hi Aunt Christy," he said, after my mother-in-law passed me the phone.
"Happy birthday, Ben. Have you had a good day so far?"
"Yes, and tonight we are going out to eat pizza."

I asked him what kind of pie he was going to order then agreed that cheese and pepperoni were a couple of my favorite kinds, too.

"How's Calvin?" he asked, as he never fails to do—as neither of my nephews ever fail to do.
"He's doing pretty good, Ben. It's so nice of you to ask."
"I have an idea," he continued, "Why don't you write a book about Calvin and about epilepsy and sell it in book stores."
"That's what I hope to do, Ben. You had the same idea as I did. That's pretty cool."
And then he added, "Maybe Bowdoin College will buy it."

I smiled and thought to myself, how great would that be.

Happy Birthday, Ben! We love you. And we love you too, Ethan!

Ben, Calvin and Ethan, June 2010, photo by Michael Kolster

sometimes so little joy

Sometimes there is so little joy in raising a child like Calvin whose seizures persist, whose development is so slow it almost feels as if it is going backwards (indeed in some ways it is) whose anticonvulsant drug side effects ruin any semblance of balance, coordination, appetite and attention that he otherwise might have, and whose days and nights are carbon copies of each other—hours of monotony on top of mind-bogglingly repetitive behaviors spiked at times with manic shrieks, grinding teeth and hugs I can barely enjoy because he yanks my hair so hard.

This morning I woke to a Facebook friend's post of an old photo of her with her vibrant, bouncing baby boy who is now two years old, can no longer see, is paralyzed, has seizures and is dying from Tay-Sach's disease. Along with the photograph she wrote this caption:

Little guy in earlier days. Missing him, then and now.

The words brought tears to my eyes. Though Calvin's death does not appear imminent, I have some sliver of understanding in wondering what Calvin might have been like now if it weren't for his epilepsy, if it weren't for the drugs.

"Hold fast," I told her, "Hold fast to your boy then and now," and of course I know that she is. It's what we do.

if you had to choose

If you had to choose, would you want a legally blind child or one who couldn’t talk?

If you had to choose, would you want a child who’d never talk or one who couldn’t walk by himself?

If you had to choose, would you want a child who suffered seizures or one who was legally blind?

If you had to choose, would you want a manic child or one who was a zombie?

If you had to choose, would you want a child with epilepsy or one who was on the autism spectrum?

If you had to choose, would you want a child totally doped up on drugs or one who suffered seizures?

If you had to choose, would you want a child who could never be potty trained or one who couldn’t feed himself?

If you had to choose, would you want a child who had chronic headaches or one who had constant gastric distress?

My eight-year-old son Calvin suffers from all of the above at the same time. We had no choice in the matter. Neither did he.

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

to survive

I’ve recently gotten in touch with an old friend of the family. She had read Calvin’s story and reached out and told me about her own extraordinary son who has autism. She wrote:

“When he was first diagnosed at 3 years old, after he lost all of his language and stopped responding to his name, I cried every day for at least a year.”

I’ve been there, in some parallel universe, drowning in my own grief over my child’s messed up brain, his compromised health. Why him? Why me? But then again, why not me?

For three years, one day every week I’d walk across the tree-lined college campus, or drive through slush and ice to a big old pumpkin-colored house. At the top of a steep carpeted staircase I entered a cozy office and closed the door behind me. For fifty-minute sessions I sunk deep into a soft chair, my therapist’s kind face looking quietly and intently into mine.

Like all days, I surrendered to my despair as sheets of tears salted my cheeks, my voice trembling, sometimes words refusing to obey my mouth, halting all together in the tightening of my throat. Sometimes I thought I saw her leash her own motherly tears. Just by listening, and somehow understanding, she totally validated my sorrow—every day. She helped me so.

To survive I took things, not day by day like now, but hour by hour, minute by minute. Sometimes it’s all I can do, the immensity and weight of this colossal vertical precipice casting an infinite shadow over me from which I cannot escape. Everything is a reminder—Calvin’s screwed up brain but perfect body, his constant escape from my gaze, his screams, his poor balance, the mountains of medicines we must pour into his little body, his relentless seizures, his wordlessness.

But, I am not alone. I am only one of millions who have lost some part of themselves in a sea of despair over their children. But we buoy each other, we link arms and carry each other on the breeze. We understand each other.

Our children become what they will be, and in part because of us. Our children validate our sorrow and bring us immense joy all at the same time. Our children—they are extraordinary—and it is for them that we survive.

Originally published 05.09.11.

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

photo by Michael Kolster

friday faves - bitches

In June of 2010 Michael, Calvin and I took our first trip since Calvin's epilepsy diagnosis—and constant, worrisome struggle with seizures—four years earlier. We hopped on a plane to visit Calvin’s grandparents in Florida. They live in a beautiful, quiet neighborhood with huge arching live oaks dripping with gauzy swags of Spanish moss and casting large cool shadows over the homes.

A few miles away live our two young nephews who, one muggy afternoon, came to visit us with their parents. I took Calvin for a walk in the stroller, accompanied by my sister-in-law and her boys, then age ten and twelve, both of whom have autism. We brought Abigail along on a leash, their grandparent’s miniature Dachshund whom the boys have grown to trust and love. Other dogs, however, terrify the boys, at least until they’ve had a chance to warm up to them.

A block or two into our walk past a string of somber, earthen colored homes, and as we rounded an easy bend in the road, we spotted a mother with her two little kids and their old, fat, female Dachshund. The hound was off leash while they were loading up their car and she excitedly waddled toward us to say hello. My nephews, fearing a strange yapping dog with long yellow teeth quickly closing in on them, went berserk, screaming in sheer panic.

Understanding the dog’s innocent desire to greet us I knelt down to pet it and kept it a safe distance from the boys who were cowering behind me. The owner approached narrowing her eyes as if we were aliens from another planet. She looked angry. To cut the atmosphere I said “hello” but she remained silent and cross. “How are you today?” I continued. Still no answer. As she abruptly whisked the dog from my gentle grasp I explained, “the boys are afraid of dogs, it’s okay.” Frowning, she continued to give me the stink-eye so I wished her farewell and sourly told her to have a nice day, clenching my teeth to bar the word “bitch” from escaping. I couldn't understand her vexation with a couple of unassuming mothers and our three young, extraordinary boys.

Our spirits ruined, we turned around to saunter home. While raving about the injustice that had just occurred, and minding our own business, I fairly glimpsed a pair of tanned elbows propped against a short bank of mailboxes, their matching rusty mouths chattering away. The two hens gawked at us as we passed.
 

The blond one shouted out to me, “That dog is friendly, ya know.” 

“That’s fine,” I replied in a flat tone, “but the boys are afraid.”
 

The other chick scoffed with an ugly snort, as if laying an egg, which provoked me to boom “so what business is it of yours anyway?” I finished off with a sardonic remark about their warm and welcoming neighborly spirit.

The incident left me steaming. In the cool of the air-conditioned house I became a block of dry ice and it took me a couple of hours and a glass of red wine to sufficiently melt. I simply couldn’t believe all of the ignorant bitches that were off leash that day. At least I didn't have to deal with their daily doo doo, because that stuff sure stinks.

photo by Michael Kolster

Originally published 3.29.2011.

completely retarded

We step up to the blue deli counter where Seth greets us with a pencil and small order pad in hand. “I’ll have an Ethanwich for here,” says Michael, as he grabs a Diet Coke from inside the refrigerated case.

We sit at a table against the wall watching customers come and go while waiting for our order. A familiar man reels through the door, his oversized winter coat draped lopsided on slouching shoulders so that one cuff hangs over his knuckles. Waving from across the room I say, “There’s Lloyd.” He sees us and awkwardly makes his way over, shuffling and wobbling in that unmistakable cerebral palsy way. Lloyd stands at the end of our table with a bewildered expression on his face, his eyes set between a pair of wrinkled parentheses like some Peanuts character. I smile up and say, “Hi Lloyd.” He tilts his head and with an open mouth makes a kind of happy growl. I give him a thumbs-up. After a slight pause he does the same with a warped hand that somehow mirrors his contorted body. We do a knuckle bump and he smiles.

I point to Lloyd and spell out his name using sign language. He smiles again and says, “Arrrrgh,” at which I gesture to Michael and spell out his name, too, with fist and fingers, though momentarily forgetting the sign for the “h”.

“You know sign language? When did you learn that?” Michael asks.
“I learned it as a kid, you know, because my uncle is deaf and retarded ... but just the alphabet and a handful of signs,” I explain.

Then I remember how my friend Monica and I used to sign to each other in church just to make it through the long, boring-ass services without slipping into a coma, how sometimes we'd practically pee in our pants trying not to giggle.

Lloyd ogles us as if we’re aliens from outer space, though I know we are familiar to him, then saunters over to another couple seated near the windows. The man greets him warmly though the woman seems less sure. After several minutes of Lloyd’s unrelenting stares they kindly say, “We’re going to eating our lunch now,” hoping he’ll get the hint and shove off. But he remains, fixed. They repeat themselves, perhaps unaware that Lloyd sometimes uses hearing aids and, even so, it’s unclear if he understands what is said to him. After a long awkward moment Lloyd releases his captives and moves on.

Seeing Lloyd reminded me of a scene in the matinee Michael and I had watched the previous day called The Descendants, starring George Clooney.

In the scene Matt King, played by Clooney, is driving while his teenage daughter Alex and her friend Sid sit in the backseat. Sid says something quite perturbing to Matt, who slams on the brakes and leans back to address the couple:
 
MATT (to Alex)
Your friend is completely retarded. You know that, right?
SID
Hey, my little brother’s retarded. Don’t use that word in a derogatory fashion.
MATT
Oh.
SID
Psych!  I don’t have a retarded brother!
ALEXANDRA
You suck, Sid.
SID
Speaking of retarded, I wish they would just hurry up. Sometimes I wait for them to cross the street, and I’m like, come on already! But then I feel bad.

I winced and laughed through the scene, found it amusing, pathetic and sad. I flinched at Clooney’s use of the word retarded. I chuckled when Sid lied about having a retarded brother. I winced again when Sid mentioned that he wished they’d hurry up, even though I understood his perspective, perhaps akin to those who watch and wait as Calvin and I slowly stumble hand-in-hand across streets and parking lots. And finally, I appreciated Sid’s regret at his own sorry feelings.

What a perfect scene, I thought, running the full gamut of emotions because of a single, seemingly innocuous word—retarded. Like Lloyd standing at the nice couple’s table as they first engaged and then waited—perhaps even miserably hoped—for him to hurry up, to disappear. I myself remember times in public, when struggling with a drugged-up manic, shrieking, drooling, hobbling Calvin, I wished that I could simply disappear, and then—like Sid—deeply remorseful for having had those thoughts.

Please share Calvin's story with the world. Help bring us one step closer to a cure for epilepsy.
Give to cure epilepsy: http://www.calvinscure.com

photo by Michael Kolster

friday faves - sick. lovesick.

Sometimes I get sick of the whole damn thing. It all feels so ludicrous and pathetic while at the same time heart wrenching, tragic and miserable. I am sick of the seizures and the medicine. I get sick of Calvin’s idiosyncrasies; the incessant eye poking and staring at the sun, the relentless yanking off of his glasses, the wretched screaming, the constant drooling. I get sick of him throwing everything on the ground as soon as we give it to him. I get sick of changing diapers. I get sick of his poor balance, of his inability to truly explore his world. I get sick of him trying to bite everything: tables, chairs, magazines, windowsills and windows, the freezer, his shoes, the car, the sink, the water faucet, the hamper, the radiator, the wastebasket, his books and toys, the zipper on his coat, the shutters, the dishwasher, his glasses, his crib. Sick, sick, sick of it all.

And though Michael has helped me begin to understand that I may have some sort of superhuman patience, and the ability to maintain calm vigilance over these things, at times I get so sick of it I just have to scream—not at anyone but at the whole sorry situation. And if Calvin is present he usually starts to giggle, and at that I can do nothing but melt. In an instant all of my feelings of anger, self-pity, annoyance and tension dissolve into doting tenderness and love. For all of his peculiarities and quirks Calvin is a darling. He’s pure through and through, lovely and affectionate. There isn't a cruel or malevolent bone in his body; rather he strives to do his best to please in most any circumstance. I couldn’t ask for a finer son to show me how I can be a better person.

This post was originally published in November 2010. Some things never change.

idiot. savant.

At first, before the epilepsy, when I’d tell people about my toddler son’s gross developmental delays—the fact that he couldn’t hold his head up until he was almost a year, couldn’t crawl until he was two (and even so, has never crawled very well) the fact that he utters no words, the fact that he can’t walk without falling and thus needs a spotter—they’d say things like, “oh, he’ll catch up,” or “you know, I heard about this boy who didn’t say ‘mama’ until he was eight but he could play Beethoven compositions on the piano after only hearing them once.” Somehow I knew that wouldn’t look anything like Calvin’s future, and though they meant well, their comments only served to belittle and exacerbate a difficult and heartbreaking situation. And then came the relentless seizures, and the drugs—mountains of them—and Calvin's future, his development, seems more bleak with each passing year.

I first heard of a man named William Sidis on the car radio. Born in Manhattan in 1898 to Jewish Ukrainian immigrants, he became a child prodigy. At the age of eighteen months he could read the New York Times and had reportedly taught himself eight languages in as many years, in addition to creating an entire language of his own. He was ready to enroll at Harvard when he was nine but the university wouldn’t admitted him until the age of eleven, citing that he was just a child. And by twelve William Sidis was lecturing the Harvard Mathematical Club on four-dimensional bodies.

Sidis was a whiz at math. It is thought that he had an I.Q. fifty to one hundred points higher than Albert Einstein, that in fact he had one of the highest intelligence quotients ever recorded. But he lived a life of relative seclusion, estranged from his parents before dying at the age of 46 from a cerebral hemorrhage. I doubt, from what little I’ve read and with all his celebrity at the time, that he was a very happy person.

By the standard dictionary definition Calvin is an idiot, though perhaps he might not have been if it weren't for the countless seizures that batter his brain and the mind-numbing drugs meant to stop them. But if Calvin was a child prodigy, a math wizard, a musical savant like Mozart, a chess champion, a genius or had a photographic memory like the character in the film Rain Man, it would be no consolation to me. It wouldn’t assuage the rancor and suffering of his relentless seizures. I’m not even sure it would serve to make him happy. As it is, I’d give anything for Calvin to be healthy—not different—just healthy. I’d give anything not to have to stuff all of these chemicals down his throat every morning and every night, which he does so dutifully, even when he doesn’t want to eat because the drugs upset his stomach and or suppress his appetite, especially of late.

So, no, Calvin can’t recite Bach or Chopin, can’t even plunk out a tune on his little yellow plastic four key piano. He can’t make a mark with a crayon much less scribe a simple equation on a big black chalkboard. He can’t win at chess, beat the dealers in Vegas or tell us what day of the week it was the day that we were born. And he can’t recite pi to 22,500 decimal places like Daniel Tammet can. But Calvin can do what no other human being on this earth can do, which is to love me in a way that is so utterly beyond words, no genius could come close to describing, even if they tried.

In honor of epilepsy awareness month please share this story with others. Help bring us one step closer to a cure. It's as easy as pushing a button.

William Sidis

Wolfgang Amadeus Mozart

Daniel Tammet

Calvin and his Geepa

while in the dentist's chair

I never much mind going to the dentist, which is a good thing since it is pretty much inevitable. That’s not to say it’s my favorite thing in the world, but I’m not afraid of the sinister, steely instruments and gritty hissing of rotary tools and suction hoses, and I’ve never suffered great pain in the chair.

When I was twelve or so I got my bicuspids pulled in preparation for braces. I remember the dentist placing a clear plastic mask over my face telling me to count backwards from 100. I got to ninety-eight before fading into oblivion. After the procedure my mom helped escort me through the back exit so as to spare the waiting room patients the gory sight of my swollen, gauze-packed mouth.

Once I had a root canal without any anesthesia. The dentist was certain the tooth’s nerve had died and that I wouldn’t feel any pain. Knowing that caused me little angst, and thankfully he was right. All I had to endure was the unnerving vibration of the drill and the faint, perhaps imaginary, smell of smoke.

During a visit to the dentist in my mid thirties I do remember crying. I’d been fitted with a putty mould meant to cast a cap for a brittle, dead tooth. I sat there silently with my mouth awkwardly stuffed, as if with an apple, and pondered anesthetics often used to numb pain, then thought of my father. When he was sixty-five he was diagnosed with multiple myeloma, a blood cancer that someone once described to me as leukemia for old folks. As part of his diagnosis he’d had a core of marrow extracted from his hipbone without the benefit of anesthesia, rendering him sickly pale and drenched in sweat. I’ve no doubt he endured the procedure with the utter stoicism of the Naval Academy graduate that he was. As I imagined that moment of my father’s absolute excruciation, while I sat comfortably reclined in a padded beige chair, I sobbed. The dentist and his assistant, oblivious to the nature of my misery because of my inability to explain through a mouthguard full of rubbery paste, simply, and compassionately, held my hands. I know my father had suffered terribly, yet he kept his feelings under lock and key and granted little to no access to those who might soothe him.

Michael and I take Calvin to the dentist twice a year for check-ups, cleanings and a fluoride varnish. In fact, we were there this morning. He does pretty well, particularly considering he likely has no idea why the heck his mouth is being invaded by a masked man under a strange bright light while we restrain him. We talk him through the entire ordeal hoping he might understand some of what we're saying, “Calvin, the doctor wants to look at your teeth, sweetie ... big open,” and then, “what a good boy!” I’ve heard stories about autistic children fighting tooth and nail only to be put under general anesthesia to tolerate such procedures.

After trips to the dentist I inevitably imagine moments when Calvin has felt his own pain, either from injury or illness. Often we’ve had no way of knowing the source of his misery because he can’t tell us, can’t point to the hurt. How do we—will we—ever know if he has a toothache, a sprained ankle or wrist, a headache, a tummy ache—or worse—appendicitis or a kidney stone?

My girlfriend whose child is also speechless, told me of a time her boy, not known for tantrums, cried and fussed and bawled and no one knew the source of his discomfort. His caregiver assumed it was simple fatigue. His mother got him home and began undressing him. When she pulled his shoe off she found that his toe had been inadvertently, though carelessly, bent backwards in the sock and his shoe had been put on over it. He couldn't tell anyone what was wrong. Thankfully, his sweet little toe bones and joints were pliable so no permanent damage was done. Hearing her recount this story made my heart break in two and bleed out.

I don’t even know how to end this story except to say that I hope someday Calvin will have the words to tell me when something hurts because—like going to the dentist—pain is inevitable.

photo by Michael Kolster

swimming

Every Thursday Calvin gets to go swimming at the college pool with the rest of his special ed class and a bunch from the other district schools. I have to say that it is a pretty surreal scene, but one that brings tears to my eyes every time I visit, nonetheless.

Michael and I walked onto the slick tiled pool deck wearing our street shoes afraid we’d be reprimanded. There was Calvin in his little polypropylene “warm belly” and a purplish-blue belted floatie riding up under his armpits. We smiled. Mary, his one-on-one, cradled him closely from behind as he kicked and splashed and flailed. He was immersed in the pleasure of the wet stuff, and getting to chomp on the little green plastic turtle he was clutching didn't hurt.

Sharing the shallow end were several other children bobbing vertically supported by floats. There was cute George, who has seizures too—and whose parents keep his head shaved nearly bald—silently sculling around with a look I wasn't sure was a sneer or a smile. Then sweet Olivia, who has Down syndrome, happily cackling and grumbling in her usual gravely voice that sounds something like a cartoon bear or a monster. Upon seeing Calvin she paddled her skinny body his direction, the tips of her pixie cut dipping in the water forming slippery brown ropes. Another girl who reminds me of Woodstock, (the yellow bird from the comic strip Peanuts,) jiggled toward Calvin as well, performing loops around him that could be traced with little hyphens like you see on greeting cards behind bees and butterflies.

A few lanes over waded a rotund teenage girl, her pony-tailed head and thick, rounded shoulders peaking just above the water like an island. She slowly dream-walked her way from one end of the pool to the other incessantly shouting, “no ... no ... no,” each time pointing a crooked finger at her chaperone. Her intermittent cries echoed eerily against the hard walls like some squawking bird in a cave.

In the corner of the pool deck on a flight of cold gray cement stairs sat a teenage boy with a mass of dark wavy locks. Semi-reclined on the awkward surface he finger-walked the tile walls before focusing on its shiny aluminum railing. He tapped its silver length with a knuckle, hugging his ear to it seemingly enjoying its vibration or tone, then went back to counting the tiles again. I wondered if Calvin will be doing the exact same thing in eight or nine years. No reason to think he won't.

It was a lot for me to take in—this rich, expansive scene of unusual kids, strange sounds, peculiar visuals—though not unsettling as it might be for some. I crouched poolside watching Calvin enjoy the water, then sputter and struggle against his physical therapist's gentle but firm clamp on his reclined forehead. I understood his spirited attempt at getting upright to let a burp out, having drank so much pool water.

As I watched the other kids I wondered what life was like for them at home. What were their parents like? Do they have siblings? Do they have friends? Calvin doesn't ... not really. Thinking about them kind of made me sad, contemplating their silent worlds, like some eerie, murky underwater realm that everyone wants—but no one really has—access to. And then I turned back to Calvin who, beginning to shiver, was still frolicking in the pool like he does in the bath every night, screeching with delight. Even if Calvin is in his own world, I thought, at least it's one that he seems to get a kick and a splash out of.

photo by Michael Kolster

un-welcome

I slept most of the way home on the red-eye, my hood pulled over my eyes. It felt more like a month of Sunday’s since I’d been home instead of less than six days. I was missing my boys ... a lot.

The plane pulled up to the gate while I brushed my hair, tied it back and popped a stick of fruit flavored gum into my fuzzy mouth. With luggage in hand I rolled it up the ramp, down the escalator and out the automatic doors. Across the street in a small parking lot waited Michael and Calvin walking around the car, Calvin banging and mouthing it in his usual style. I whistled like we do when we are looking for each other in the grocery store. Michael looked up and met me with a kiss, then I bent down to give Calvin smooches which seemed to make him laugh, though perhaps he was laughing at something else that was either present or just in his mind.

I loaded Calvin into the car regarding his poor complexion. On the ride home he frantically kicked the driver’s seat, fingered incessantly and stuck his hands on his ears umpteen times while his eyes rolled like marbles in his head. He bit his shoe and leaned over to yank my hair, but he never really looked at me, lost in his own little autistic, retarded, epileptic, medicated world.

The reunion weekend had been spent with friends and their kids and their friends’ kids. The juxtaposition between their walking, talking, looking, asking, answering, running, playing, imagining kids and Calvin couldn’t have been more stark—my child appearing more to me now like a psycho than anything, the recent increase in his seizure medicine seeming to exaggerate his idiosyncrasies.

Michael and I drove home mostly in silence as I sat next to Calvin trying to prevent him from poking his eyes. The weekend's happy echoes and warm hugs of my classmates, friends and family trailed far off in the distance behind me.

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.

octopus

Lately the kid, at mealtimes, is non-stop frigging spastic energy. His behavior improved fro a little while but since increasing one of his antiepileptic medications it has worsened again. He flails his arms like an octopus on speed and kicks his feet into me with reckless abandon. He can’t manage a spoon when he is like this, and he’s not very good with one to begin with. The yogurt goes everywhere but in his mouth—in his hair, on his chin, his bib, his hands, the rug. When he kicks me, though it’s not malicious, he sometimes pins the skin of my inner thigh between his nubby shoe and my chair. Once, I leaned in to feed him a spoonful of cheesy egg and he inadvertently poked me in the eye with his thrashing, rigid fingers.

After a sleepless night is when this behavior is hardest to deal with. I get frazzled and frustrated and feel like screaming above his own screams. At times I do, which only causes Rudy, our ten-year old chocolate lab, to grow grayer than he already is. It escalates my own anger but, thankfully, just makes Calvin laugh. At times I feel like punching a wall. I never do. But I’ve had to remove myself from the situation and go whack my pillow. Once I pummeled repeatedly so hard that I injured my elbow and it ached for days.

I used to say that Calvin wasn’t manipulative, but when sitting in his high chair, when he wants my attention and isn’t getting it, he’ll scrape his teeth into the wooden tray gouging troughs and dislodging splinters that he inevitably must be swallowing. There’s a large divot in the tray to prove it. Somehow I’ve got to find a way to curb that behavior, among others. A fleece blanket covering the tray is my current solution, though our little Houdini has begun to figure out how to get around that trick.

But this crazy kid of ours, this goofball piece of work, is so damn cute I don’t know what to do with myself sometimes but just swoon. Lately, I’ve even begun feeling fulfilled knowing that he will be our only child, our one and only two-armed, two-legged octopus.

my pinocchio

Yesterday afternoon I took Calvin into the back yard to practice walking. He has become interested in touching the plants and trees, his vision and engagement with the world having improved of late. I led him across the lawn then onto bark paths amongst flowering rhododendrons, dwarf evergreens and hasta.

If I weren’t holding his hand and/or his harness reins the kid would have fallen every few steps. As it is, I do let him softly fall so he can practice his protective reflexes, and outdoors where the ground is soft is the place to do it. When he falls, if we’re lucky he puts his hands out front to catch himself. Reflexively, he’ll grab a fist full of whatever is on the ground, which is often dirt mixed with bark chips and pine or fir needles. That fist goes straight into his mouth often before I can intercept, but he lets me fish out the debris with a hooked finger. I’m trying to teach him to wipe his hands together to brush the grit off instead of eating it.

Calvin doesn’t understand the fragility of plants—that they can’t support him like a table or a chair. He fell into a small rhododendron and split it down the middle. I grabbed the fanned broken half and angrily whipped it onto the compost pile while thinking out loud, “plants know how to develop and grow, but my kid doesn’t.”

Tense anger quickly turned to pathetic sobs with another fall ... and another ... and another. I feel like a puppeteer with Calvin as my pitiful little marionette—my Pinocchio—suspending him from his harness straps, guiding him with one tug here and another tug there. I wish Calvin could one day, magically, become a real boy who could do real boy things.

help.com puppeteer

to survive

I’ve recently gotten in touch with an old friend of the family. She had read Calvin’s story and reached out and told me about her own extraordinary son who has autism. She wrote:

“When he was first diagnosed at 3 years old, after he lost all of his language and stopped responding to his name, I cried every day for at least a year.”

I’ve been there, in some parallel universe, drowning in my own grief over my child’s messed up brain, his compromised health. Why him? Why me? But then again, why not me?

For three years, one day every week I’d walk across the tree-lined college campus, or drive through slush and ice to a big old pumpkin-colored house. At the top of a steep carpeted staircase I entered a cozy office and closed the door behind me. For fifty-minute sessions I sunk deep into a soft chair, my therapist’s kind face looking quietly and intently into mine.

Like all days, I surrendered to my despair as sheets of tears salted my cheeks, my voice trembling, sometimes words refusing to obey my mouth, halting all together in the tightening of my throat. Sometimes I thought I saw her leash her own motherly tears. Just by listening, and somehow understanding, she totally validated my sorrow—every day. She helped me so.

To survive I took things, not day by day like now, but hour by hour, minute by minute. Sometimes it’s all I can do, the immensity and weight of this colossal vertical precipice casting an infinite shadow over me from which I cannot escape. Everything is a reminder—Calvin’s screwed up brain but perfect body, his constant escape from my gaze, his screams, his poor balance, the mountains of medicines we must pour into his little body, his relentless seizures, his wordlessness.

But, I am not alone. I am only one of millions who have lost some part of themselves in a sea of despair over their children. But we buoy each other, we link arms and carry each other on the breeze. We understand each other.

Our children become what they will be, and in part because of us. Our children validate our sorrow and bring us immense joy all at the same time. Our children—they are extraordinary—and it is for them that we survive.

Calvin and his cousins. photo by Michael Kolster

spoiled welcome

Michael picked me up from the airport yesterday morning after a red-eye home from San Diego. I had spent six days visiting my eighty-one year old mom who has Alzheimer’s. I arrived weary with a stiff neck and aching muscles from sleeping half sideways in the plane and then in an airport seat, my boots propped up awkwardly on my luggage.

As a welcome home he cooked a wonderful spaghetti dinner and we had just sat down to eat it in front of a rolling fire. Michael had the baby monitor slung around his head when we heard Calvin move. It was just after eight, his new time for seizures, so instinctively I ran upstairs and found Calvin, red in the face, listless and semi-responsive, suspicious he had had a silent seizure.

By the time I got downstairs my meal was cold but I had lost my appetite anyway. Michael had already resigned to washing the dishes and putting things away. So much for my warm welcome home. It was spoiled.

It's a crappy existence to be imprisoned by a sick kid who never seems to get any better no matter what we do. The seizures remain elusive even in the face of—or perhaps due to—mounting drugs, and his autistic behavior gets worse and worse but that could be the drug side effects, who knows?  What we do know is that we are trapped.

Friends innocently ask us, “so what did you do this weekend?” I think to myself, what else but what we always do? A whole lot of nothing. Thankfully Michael rescues us from the grind, if only a bit, by his ever-expanding repertoire of delicious home cooked meals or a Sunday drive (as we cross our fingers hoping Calvin will stay calm.) Sometimes we spice things up on the weekend with an exciting trip to the cafe or an action packed visit to the hardware store. Yup, it’s pretty sorry when you get right down to it, an entire family tethered to a life of seizures, drugs, side-effects, doctors, diets, rigid schedules and a seven year old kid who is still in diapers, can’t walk by himself, can’t talk, doesn’t sleep well, screams much of the time, seems oblivious to the world and yet exercises a stubborn refusal to walk, with any semblance of skill, when we need him to.

I don’t believe in hell, but every once in a while I’d swear I was in it. Heaven is waking up, after a solid night's sleep, in a cozy seaside cottage hearing wind chimes, foghorns and songbirds—all by myself.