Margot
Lisbeth
CalvinExcerpt from the article The Scourge of Epilepsy
Brunswick Times Record, Friday, January 27, 2012
Margot
By Madeline Curtis, age 14, Margot’s sister
By Madeline Curtis, age 14, Margot’s sister
I wish there was a cure. The pills are supposed to
work, and maybe they do—on other people. But they don’t work on Margot. The diet
didn’t work, either. The fancy diet, the one that led to so much stress in our
house, didn’t work. The seizures just keep coming back, and my little sister,
eight years old, has to endure them. I wish there was a cure so that Margot, who
can’t even speak or walk, wouldn’t have to struggle so much. I wish there was a
cure, because I’m tired of all the new medicines that show up in the cabinet
above the sink. I wish there was a cure, because I hate the helplessness I feel,
watching her limbs freeze and her eyes roll up into her head. I wish there was a
cure, because I want all of the people who carry the burden of epilepsy to feel
relief.
work, and maybe they do—on other people. But they don’t work on Margot. The diet
didn’t work, either. The fancy diet, the one that led to so much stress in our
house, didn’t work. The seizures just keep coming back, and my little sister,
eight years old, has to endure them. I wish there was a cure so that Margot, who
can’t even speak or walk, wouldn’t have to struggle so much. I wish there was a
cure, because I’m tired of all the new medicines that show up in the cabinet
above the sink. I wish there was a cure, because I hate the helplessness I feel,
watching her limbs freeze and her eyes roll up into her head. I wish there was a
cure, because I want all of the people who carry the burden of epilepsy to feel
relief.
* * * * * * * * * *
Lisbeth
By Martha Miller, Lisbeth’s mom
By Martha Miller, Lisbeth’s mom
Write about lost love, my professor says.
All I can think of is Lisbeth, and how I lost the little girl she was that day in
sparkling summer. She'd been ill and was feeling better, then awoke that morning
saying, “Mommy I don't feel good.” I laid her on the couch and gave her some
Tylenol. Twenty minutes later it happened: she was grey, her eyes rolled back,
the whites of them now yellow, moist, a faint clicking in her throat. Her body
was stiff, jittery. I yelled to my husband Garry to come. “Call 911,” he said,
and somehow I did. Waiting on the front steps for the ambulance the word
EPILEPSY kept playing in my head. The ambulance arrived and the men carried her
out. Garry rode with her. I followed in our car praying, “Oh God, please, this
is not how I want her to grow up." In the emergency room Lisbeth laid on the
stretcher. They'd cut her pink summer shorts in half, shoved tubes down her
throat. Garry leaned over her tiny body, her perfect pink six year old body, her
blue eyes, now shut. What (the Hell) was happening? I wanted to turn and run
away. Garry saw it in my face and said gently, “C'mon Mart.” I walked to the cot
where she lay, and I began to sing to her. I sang all the lullabies I'd sung to
her when she was a baby. I knew what my job was now.
sparkling summer. She'd been ill and was feeling better, then awoke that morning
saying, “Mommy I don't feel good.” I laid her on the couch and gave her some
Tylenol. Twenty minutes later it happened: she was grey, her eyes rolled back,
the whites of them now yellow, moist, a faint clicking in her throat. Her body
was stiff, jittery. I yelled to my husband Garry to come. “Call 911,” he said,
and somehow I did. Waiting on the front steps for the ambulance the word
EPILEPSY kept playing in my head. The ambulance arrived and the men carried her
out. Garry rode with her. I followed in our car praying, “Oh God, please, this
is not how I want her to grow up." In the emergency room Lisbeth laid on the
stretcher. They'd cut her pink summer shorts in half, shoved tubes down her
throat. Garry leaned over her tiny body, her perfect pink six year old body, her
blue eyes, now shut. What (the Hell) was happening? I wanted to turn and run
away. Garry saw it in my face and said gently, “C'mon Mart.” I walked to the cot
where she lay, and I began to sing to her. I sang all the lullabies I'd sung to
her when she was a baby. I knew what my job was now.
* * * * * * * * * *
Calvin
By Christy Shake, Calvin’s mom
Our nightmare started when Calvin was eighteen months old. He had
spiked a fever, so we gave him some acetaminophen and called our local hospital.
The doctor assured us that we had nothing to worry about even though I’d told
him Calvin had serious neurological deficits. Within mere minutes of hanging up
the phone Calvin suddenly cracked like a whip into an arch stiff as a steel rod.
His eyes bulged and his lips pursed as if drawn up with thread. My husband
Michael gathered him up, instinctively—worriedly—rocking him back and forth as
if to jostle the seizure out while I white-knuckle-called for an ambulance. “My
son is having a seizure,” I blurted, “he’s not breathing—he’s turning blue!” The
walls began closing in on me. Sounds morphed and muffled. Everything around me
looked hazy—blurred—as if in a cloud, except for my boy who remained in sharp
focus. Cradled in Michael’s arms, now jerking rhythmically—violently—Calvin
turned ashen like a corpse and his eyes rolled back into his head. Time stood
still as in a dream. I wasn’t sure if Calvin was alive even though his
convulsions persisted—I couldn’t find a pulse.My next memory is of the
cold hard edges in the ambulance, the sterile, sickeningly gray vinyl benches.
My tiny child lay in the center of a sheeted white gurney—his eyes now vacant
and still—staring up in a catatonic gaze at the bluish light in the ceiling. I
feared he might remain that way forever because of the seizure, or worse—die.
Little did I know then that some kids do.
spiked a fever, so we gave him some acetaminophen and called our local hospital.
The doctor assured us that we had nothing to worry about even though I’d told
him Calvin had serious neurological deficits. Within mere minutes of hanging up
the phone Calvin suddenly cracked like a whip into an arch stiff as a steel rod.
His eyes bulged and his lips pursed as if drawn up with thread. My husband
Michael gathered him up, instinctively—worriedly—rocking him back and forth as
if to jostle the seizure out while I white-knuckle-called for an ambulance. “My
son is having a seizure,” I blurted, “he’s not breathing—he’s turning blue!” The
walls began closing in on me. Sounds morphed and muffled. Everything around me
looked hazy—blurred—as if in a cloud, except for my boy who remained in sharp
focus. Cradled in Michael’s arms, now jerking rhythmically—violently—Calvin
turned ashen like a corpse and his eyes rolled back into his head. Time stood
still as in a dream. I wasn’t sure if Calvin was alive even though his
convulsions persisted—I couldn’t find a pulse.My next memory is of the
cold hard edges in the ambulance, the sterile, sickeningly gray vinyl benches.
My tiny child lay in the center of a sheeted white gurney—his eyes now vacant
and still—staring up in a catatonic gaze at the bluish light in the ceiling. I
feared he might remain that way forever because of the seizure, or worse—die.
Little did I know then that some kids do.
* * * * * * * * * *
Margot, Lisbeth and Calvin are just three of as
many as three million Americans, and their families, who suffer from epilepsy,
and who likely will not be released from their misery until a cure is
discovered.During this brief campaign please, show your compassion and
donate to CURE epilepsy research at:
many as three million Americans, and their families, who suffer from epilepsy,
and who likely will not be released from their misery until a cure is
discovered.During this brief campaign please, show your compassion and
donate to CURE epilepsy research at:
