LISBETH

LISBETH

EDITOR’S NOTE: Three family members of Maine children with epilepsy share their perspectives on what it’s like to live with someone who suffers from the disease.

Lisbeth
By Martha Miller,
Lisbeth’s mother

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.

MARGOT

MARGOT

Twenty minutes later it happened: She was gray, 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,

Calvin and his dad.

Calvin and his dad.

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 6-yearold body, her blue eyes, now shut. What 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.

Margot
By Madeline Curtis,
Margot’s sister, age 14

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, 8 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.

Calvin
By Christy Shake,
Calvin’s mom

Our nightmare started when Calvin was 18 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 after I hung 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 whiteknuckle 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.

Lisbeth, Margot and Calvin are just three of as many as 13,000 Mainers, and their families, who suffer from epilepsy, and who likely will not be released from their misery until a cure is discovered.

Epilepsy is as prevalent as — and more lethal than — breast cancer. Tragically, it often plagues children. Even so, it remains an obscure, stigmatized, underestimated, misunderstood and grossly under-funded disorder.

Epilepsy is the second most common neurological condition and afflicts 3 million Americans — about one in 100. That’s more than multiple sclerosis, cerebral palsy, muscular dystrophy and Parkinson’s disease combined.

Epilepsy afflicts up to three times the number of Americans compared with Parkinson’s disease. Yet Parkinson’s enjoys more than four times the amount of funding from Pharma, nearly three times the government funding and at least 10 times the funding from private entities as compared with epilepsy.

People with epilepsy suffer debilitating and sometimes lethal seizures and/or horrific side effects from medication and most must remain on these drugs for years, if not for their entire lives.

Only one quarter of epilepsy research dollars targets finding a cure. The lion’s share goes toward developing treatments, such as medications, from which the pharmaceutical industry stands to gain billions, though sadly — miserably — medication is no more than a Band-Aid.

The only hope to end this suffering is a cure. To learn more, please go to — and share — Calvin’s Story at: www.calvinsstory.com or Not Bad Thing at notbadthing.blogspot.com or CURE: Citizens United for Research in Epilepsy at cureepilepsy.org/home.asp.

Please donate to CURE epilepsy research at calvinscure.com.

To learn more about an upcoming “Cure epilepsy” benefit, email [email protected]

[email protected]