beloved objects

Every beloved object is the center point of a paradise.

—Novalis

photo by Michael Kolster

dark strangers

Written by Julianna

Recently, I took the Greyhound bus down to the National Walk for Epilepsy in Washington, D.C. with a friend who also had epilepsy surgery last Spring. The walk was powerful—5,000 people marched wearing matching white and purple shirts. People in white were supporters and those in purple were people with epilepsy. So, my friend and I made it our mission to meet as many purple-shirted people as we could throughout the day. We approached a family that included a confident-looking seven-year-old, who was leading their caravan, and two parents hauling a three-year-old and a five-year-old in a double stroller. The three-year-old was staring into the distance. He was decked out in a purple shirt but probably had no semblance of what it all meant.

As we had been doing throughout the day, my friend and I approached the mother, introduced ourselves and asked about her son’s story. She explained that he had a severe epilepsy syndrome characterized by mixed seizure types and that the seizures had been so debilitating that he was left completely unable to speak. She asked about my story and I told her that I had had refractory epilepsy since I was born—I have had more than 1,000 complex partial seizures in my relatively short lifetime. Then her gaze intensified. Her son William also had complex partial seizures. She asked if I would tell her how it felt to have a complex partial seizure because William would never be able to tell her. This notion made me immediately tear up. This is what I explained:

My seizures feel like an assault. They come quickly and unexpectedly. I feel the same sinking feeling in my chest that you feel on a roller coaster, but intensified. Everything is intensified during a seizure. Then I don’t feel like myself—literally—I feel like a different human. This may be the scariest phase of all because we attach so completely to our self-perception; it seems unfailing, unwavering and constant until a seizure hits. My vision goes white and I start to hallucinate. People are chasing me, usually a massive and dark figure approaching from the left. Running away in my mind feels exponentially scarier than anything I have experienced in my conscious life. And so I clench my fists, thinking “get me out, get me out, get me out.” For some reason, these basic instincts can override my otherwise unconscious and flailing mind. More adrenaline rushes through my body than anything that I have experienced otherwise. Although my seizures are only ten to thirty seconds, time extends during seizures; they seem to last forever. And then finally, with the most relief I ever feel, the seizure ends and my heart is left beating furiously.

The tragedy is two-fold. For me, like one-third of the people with epilepsy, medications and dietary therapy did not work to cure my seizures and I was left to be accosted by massive, dark strangers six to seven times a month. But the most tragic element of epilepsy is how it leaves people—kids like William—so vulnerable, so fragile and so helpless. Epilepsy is often an overlooked disorder largely because the public does not know its harm. I hope that this blog has illuminated the harm that it can do. Spread the word and help find a cure.

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

from the graphic novel Epileptic by David B.

voice of the epilepsies (video)

View this short trailer for an upcoming documentary film about people living with epilepsy, featuring—among others—our boy Calvin. To find out more about the film go to: http://www.epilepsymovie.com

trouble on the bus

Outside, while waiting for the bus to arrive I followed Calvin around as he banged and patted the car—one of his favorite things to do. When I heard it pull up to the curb I grabbed his lunchbox and swiveled him around toward the bus. Calvin's driver, Cindie, startled me having leapt out of the idling bus to coax us along, something she never has done. “Hurry,” she said then explained, “One of my kids isn’t doing very well and we have to get him to school fast.” With a certain amount of understanding I picked up Calvin and quickly shuttled him to the top of the bus’ stairs, passed him off to an aide and told him, as I do every day, “Bye Calvin, I love you.”

As the coach pulled away I peered up into each window trying hard to discern the trouble through the glare on the glass. Several seats back sat a boy a boy a year or so older than Calvin, a boy who was his classmate in preschool and kindergarten. This boy, amongst several other children in Calvin’s class, also has epilepsy, has a history of being hospitalized for bad seizures just like Calvin, but I couldn’t be sure if he was the child in distress. The bus sailed away and as I trudged up our driveway I began to cry. Michael intercepted me with an embrace. We were feeling the same emotion ... despair for the anonymous, unwell child on the special needs bus.

Back in the kitchen I halfheartedly poured myself a bowl of cereal and milk. Our visiting teenage niece, Maddie, wandered into the room, saw my tears and asked, “Why are you so sad?” I looked over at Michael whose eyes were red and moist and I began to cry some more. Through my weeping I told her about the incident on the bus. “It’s just that these kids are so innocent. They don’t deserve or understand what is happening to them. They just feel bad and they can’t even tell us why.”

We all stood quietly in the kitchen lamenting the reality that Calvin shares with his classmates, hoping the ill child would be okay and thankful for the childrens' amazing bus driver. I finished my cereal in silence listening to the miserably hollow din of my spoon against the empty bowl and thinking of the heartache I feel on a regular basis mostly because of epilepsy.

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

fetal mri

Calvin’s first MRI was in utero. We were about thirty-three weeks along.

Michael and I had learned the previous week, from an insensitive witch (doctor), that the lateral ventricles in our baby’s brain were enlarged. We ignored the docs advice to come back in two weeks by opting never to see her again. By good fortune, we came across a study of the diagnosed condition—ventriculomegaly—underway at a Boston hospital.

The events in the hospital were a blur, shuffling between obstetricians, neonatologists, neurologists and radiologists while running blood tests, genetic screenings, and sonograms on me. Near the end of the day, exhausted and fraught with worry, the only test left was a fetal MRI. Michael and I sat holding hands on teal fabric chairs amongst fake plants, and painfully awaited our turn. I felt alone and frightened, trying to hold back my tears of trepidation. I knew Michael felt the same.

Finally, I was lead to a changing-room to disrobe for the procedure. The stark space had bare plywood walls, a single hook on which to hang clothes and a cheap mirror fastened slightly askew on the back of the door. Against one wall were stacks of clean folded “johnnies.” I stripped down, shivering, not so much from cold as from fear and fatigue. Standing naked in front of the mirror I regarded my taut round belly and wondered how and when it all went so wrong. I was so afraid—afraid of what I knew about my precious child’s brain, and afraid of the unknown. Slumped in sorrow, my dirty hair hanging in strings before my face, I feebly chose a pale printed johnny. Surprised and dispirited by it’s weightlessness, I found each gaping one-size-fits-all armhole and positioned the opening in front as I had been advised. The flimsy gown could have wrapped around me nearly twice if not for Calvin. For a moment I stood trembling beneath the thin garment, which fell at my shins revealing shoeless feet. I had never felt so vulnerable in all my life, and in the mirror’s reflection I watched my screwed-up face start to sob uncontrollably.

Michael appeared and I gave him my wedding band—metal cannot be worn inside the powerful magnet. He escorted me to the imaging room, kissed me and returned to the waiting area. The technician laid me down on the conveyor and strapped me in good, feet first, on my back. With a push of a button I was slowly inserted into the massive, white hollow tube. It was a much narrower opening than I had imagined and I felt as if my pregnant belly might graze the cylinder as I passed through. The technician exited the room and left me alone, except for Calvin. A voice spoke to me over an intercom from the darkened side of a large window giving me instructions as to when to hold my breath for the making of the images. Deep, guttural sounds and jolting buzzes, like no other sounds I had heard before, bellowed from the machine's bowels. The noises were freakish, futuristic and jarring, contributing to the whole surreal experience. But somehow, knowing that Calvin was with me—inside me—and we were going through it together, gave me a sense of calm. I kept telling him that everything was going to be okay and not to be afraid and he seemed to be doing the same for me.

After an hour or so I emerged from the white monstrosity that had swallowed me whole. Now all we had to do—which was no easy job—was to wait for the results and find out what needed to happen next. We had no idea of the nightmares that were in store for us and for our unborn child, nor of the worst that was to come: epilepsy.

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

ventriculomegaly

reflections

Sometimes, I catch my reflection in the mirror and see a tired, scowling face peering back at me, a face I hardly recognize as my own. At these times I realize how heavily the past eight years have weighed on my soul and I sit and wonder how I'll be able to carry on to the next minute, much less the next day, the next year.

But at other times I see a face that remains full of levity and vivaciousness, one that isn't completely mired in the stress and burden of raising an unwell child who suffers from epilepsy. I see the reflection of a face that still looks forward with curiosity and hope and sees life as a complex wondrous adventure. At times like these I see my mother. I see her, too, in Calvin's smiling face and think how glad I am just to be alive and to share their sublime biology.

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

Mom and Calvin, 2006

friday faves - envy

Sometimes I find myself looking back, second guessing, grieving over the fact that we didn’t have a another child. But when I mull over the memories, the images, the facts—both emotionally and logically—it never really makes sense to have done so, or perhaps I’m just trying to make myself feel better.

Of course, there is more than a smattering of loss I feel for the healthy child we never had, and plenty of envy of the masses of strange couples who, inside my head, seem to flaunt their healthy kids, effortlessly performing calisthenics with their babbling fat babies as I try in vain to support my restless, sick, irritable child who can’t even stand up by himself, while worrying he’s about to have a seizure. If only they knew their good fortune. Perhaps, seeing the calamity which is us, they do.

We wanted a simple life, to focus on just one child, and if perchance we decided we wanted more children later, well, there are so many orphans out there who need a good home and a loving family, we thought. But when the reality of our difficult situation started sinking in and we began extrapolating life with Calvin I found myself yearning for another child—a healthy child. I selfishly wanted a child who could walk by himself, a child who could feed herself, a child who could speak, run, play, read, play music, dance, make art, write, even simply use the toilet. I wanted to teach her to drive, to send him to college, have philosophical conversations, meet his first girlfriend, tell her my thoughts about the universe, see her pregnant belly, love his children. The missed opportunities are infinite.

But then I see how far Calvin has come since the day his former neurologist told us he might never walk. I remember the hours upon hours I spent on my hands and knees teaching him to crawl when he was just tiny tot in my arms. I recount the days, weeks, months and years that I have followed Calvin around the house, harness reins in one hand, the other stretched out to catch a bump or fall. I’m aware of the countless trips spotting him up the stairs, then scooching step by step beside him on the way down. Now he can, almost consistently, climb into the tub on his own. He has mastered the art of walking up and down the stairs holding the banister by himself while we spot. He helps us dress and undress him a little. All of these things seem like minor miracles and are celebrated as such.

And then there is his health. If we had another child would I have caught Calvin's seizures in time to prevent a fatal outcome? Would I have woken to the cries that send him into a quivering mass of spasms? Would I have had the time to attend properly to his medical needs, wrangle with the infinite health insurance red-tape, manage the stack of drug prescriptions, train nurse after nurse after nurse, weigh each exacting meal, watch his every move in case of another seizure, another fall?

If we had another child what would they be feeling, experiencing? Neglect? Perhaps not, but it crosses my mind. I have read many stories written by parents of disabled children, and children with epilepsy, whose siblings suffer as a result. But that is life, right?

My gut tells me that if we had other children Calvin might still be hanging in a pathetic limbo unable to do much at all. My family tells me as much, that we've facilitated a lot of his development by sheer (wo)manpower, time and attention. Otherwise, would we have had to sequester him to a wheelchair, a walker, a bed, an institution? Instead, he’s making gains, he’s happy and he’s developing. Most of all we get to spend untold hours simply in each others' embrace. And for that, others might just be envious of me.

Originally published 5.15.11.

Please share.

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