The Mourning After (22 page)

Lucy leans over and feels her tattoo.  Smooth to the touch, it slows the frantic beats of her heart.  The envelope is there too, but she can’t bring herself to touch it.

Levon steps on the scale and can’t believe what he sees.  He is three pounds lighter.  Had the stitches reduced his poundage when they were removed?  Or, is it the result of his disclosure?  Did the weight of his words—his burden—amount to that much? 

Days have passed since his tryst with Lucy, and he has finally set the truths onto the page.  Her secret has liberated him. The chronicling of that fateful night both invigorates and purifies.  Now more than ever, he knows what he has unloaded onto the pages must be safeguarded.

The tattoo inscribed on his bottom has healed, and it’s slowly reshaping Levon.  He is not only writing in his journal with fierce abandon, but he has been piecing together an assortment of short stories of which he is relatively proud.

Things on the home front are unchanged and depressing, with the exception of his mother’s jaunts to the synagogue.  Her refusal to visit the cemetery has her at odds with his father.  “David’s not there,” she says with a scowl.  “He’s in here,” she adds, pointing to her heart.  Solace is found in a language she can’t read or write. They are now commanded to kindle the Sabbath lights on Friday evenings, eat challah, and sip from David’s Bar Mitzvah Kiddush cup before she heads out the door.  Sometimes, she invites Chloe along though never Levon or his father.  Ironically, Friday nights were when the family used to worship David, while watching him during his weekly football games.

Levon’s mother can be overheard saying to her half-listening husband, “David wasn’t the one I was worried about.”

A recent visit to Gainesville with Dr. Gerald was discouraging.  Dollars were being pulled from his research.  Gene therapy with dogs at the university had yielded positive results—dogs are now fasting three hours, up from one hour—and Dr. Gerald’s team of associates believe they are close to a breakthrough.  Sadly, without the proper financial backing, the veterinarians were laid off.  What that means for children afflicted with GSD: Hope for a cure is within reach, though ultimately economics could be the difference between a child living a normal life and one living by the strokes of the clock.

In the past, fundraising events had raised substantial dollars for GSD research.  Madeline Keller, once the organizer of such swanky evenings, wasn’t planning on coordinating the winter gala, choosing to hibernate instead.  Shuffling between two extremely bad scenarios—mourning loss and preventing loss—she had all but given up on life.

Levon had not.

Ellen DeGeneres, with uplifting and humorous contagion, has sparked a lightbulb in Levon’s misty head.  He steps off the bathroom scale, proud of his unexpected loss.  He knows that it is ludicrous to think that he, a nobody from Miami Beach, can make a difference.  Still, he had replayed the episode with the cornstarch multiple times and each time he is overwhelmed.  After visiting Ellen’s website, he drafts a letter and a children’s story about kids with GSD, all with the intent of impressing her enough to lend an ear to the disease and other rare disorders.

“You are amazing,” Lucy exclaims to Levon when he finally shows her the letter, the story, and the TiVo version of the episode that he has saved in his Now Playing list.

“Let me draw the illustrations for the story.  We can go to Target and get one of those binders and send an actual book.  She’ll love the effort you put into it.”

“You can draw?” he asks.  With that, she snatches from her backpack a pile of drawings from art class.

“Wow,” he says, “you’re really good...”

“I know,” she quips.

“And modest.”

“This is good for you, Levon, very constructive.”

His mother keeps walking in and out of the room.  At least she isn’t hiding in her darkened bedroom under the covers.  Maybe she can sense Levon is on to something big.

Lucy is polite and happy when greeting Levon’s mother.  When a grunt escapes the tired woman before she flees back to her room, Lucy asks, “What is
up
with your mother?  Has she always been like this?”

Levon shrugs.

“She acts like you’re not in the room.”

“I don’t think she likes me very much.  Bet you don’t have a clever life lesson in response to that.”

Chloe skips into the room and breaks up the grey cloud.  Both Levon and Lucy stare at the star of their afterschool special. She has no idea what the two of them are up to, only that markers and paint are involved.  “Can I help?” she asks.

“No,” Levon says.

“Yes,” Lucy insists.

“Which one is it?” the brown-eyed girl asks.

There is a lapse of prickly silence.  Levon’s thoughts fall back on David and Rebecca’s baby.  Was there a chance he or she could have been a carrier of GSD?

They are staring at the living, breathing catalyst for their pet project. She is speckled in freckles, and although she’s not smiling or making a sound, her eyes are desperately pleading to participate.  Levon is unsure of how she’ll handle all the attention. 

Lucy steps in front of Levon and says to Chloe, “We are going to do something bold to raise national awareness for GSD and get some funding to find a cure.  You’re going to be a part of it because it’s your story.  You are the star.”

“You’re scaring her,” interrupts Levon.

Lucy turns to find a red-faced Levon.  When she does, a strand of her yellow hair swats him in the face, and his hand reaches for his stinging eye. 

“She’s not a baby, Levon. She understands what I’m saying more than any of us.”

“I don’t want her to be involved more than she already is.”

Lucy laughs one of her loud, obnoxious, grate-on-your-nerves chuckles.  “She
needs
to be involved.  Ask her.  Ask her what it feels like to be different than the other kids at school.  Ask her how it feels when she’s at a birthday party, and the kids are all eating that sugary crap kids crave, and she’s eating crackers and nuts?  Look at her.  Don’t turn your head.  She’s the reason you’re doing this.”  Then, as if Levon didn’t get what Lucy was saying, she points at his beautiful, brave little sister and says it again.

“No,” Levon demands, “I don’t want her involved.”

“What the heck is going on?” Chloe cries out.  “You
are
starting to scare me.”

Lucy says, “Your brother’s starting to scare
me
a little bit.”

Levon was starting to scare
himself
too.  What had he gotten himself into and was it too late to pull the brakes on his plans?

“Why are you doing this, Levon?” Lucy asks.

She says this as though she knows the answer.  It should make him grateful to have a friend who understood him so well after all the years he has suffered from ridicule and blatant disregard.  Instead of feeling thankful, though, he feels uneasy, like she’s standing too close.

Chloe sashays toward the pantry, considering her limited snack choices while Lucy leans in closer to Levon.  “What’s your problem? You know why this matters.  Do you actually think
she’ll
forgive you if you help your sister?”

Levon’s silence is overshadowed by the loud pulsation of his heart. “Unbelievable,” she says, rolling her eyes.  “Haven’t I taught you anything?”

Chloe returns to the table with a fist full of saltines.  Levon checks his watch knowing that in his mother’s physical and emotional absence, he is required to be Chloe’s timekeeper.  There is so much that goes into the maintenance of her illness: the clockwatching, the diet, the constant vigilance.

“Did I ever tell you about the first time Chloe went on an airplane?” 

He doesn’t wait for Lucy to answer; instead, he continues talking, more to himself then to her.

“We were held up at security for hours when they found a gram scale and a white powdery substance in my mom’s carry-on.  And do you know how many people of supposed superior intelligence don’t realize that bread has sugar in it?  Or how troubling it is to hear a six-year-old ask a grown-up at a birthday party about the level of sucrose in her popsicle?”

Other than the sound of Chloe munching on saltine crackers, the three are quiet.  The crunching noise is followed by a clearing of her throat.  Perhaps she is reminding Levon that he is talking about her while she is sitting right there.

“Did you know that Chloe had to learn how to swallow because she spent the beginning of her life unable to eat solids since she was fed through a feeding tube?  And that those tasty flavored medicines for headaches and colds are so loaded with sugar they can send her into metabolic crisis?  Try being in first grade and having to explain to others about the aide who shadows you around all day and your frequent visits to the nurse’s office.”

Chloe sidles up to him, but Levon doesn’t pay attention until she is tugging on his shirt.  Crumbs are caked across her shirt and hands, dotting her ruby lips.  “Stop it,” she says.  “Stop it already.”

“I’m sorry, Chloe.”

“No,” she continues.  “Don’t treat me like I’m some weirdo—”

“All I want is for people to understand…”

“
You
don’t understand,” she exclaims.  “I’m okay.  I never minded Mrs. Bethel being in the classroom with me, and I don’t care if I can’t eat all the stuff the other kids eat.  I’m used to it.”

“You shouldn’t have to be used to it.  You should be out having fun like other ten year olds who aren’t afraid and aren’t sick.”

“I’m not the one who’s afraid,” she quietly adds.

“I’m trying to help you, Chloe,” he says, and then turning to Lucy with a sneer adds, “and I think I found a brilliant way to help Dr. Gerald, so you can get better.”

Chloe is silent.  The younger, spirited child takes hold of her big brother’s arm.

“It’s not your job to fix me, Levon.”

Lucy says, “Let her help, Levon.  Do it for
you
, not for
her
approval.” 

Levon knows she’s not referring to Chloe.

The letter took three days to perfect.  Lucy critiqued it and edited it, while Levon added the finishing touches.

Dear Ellen DeGeneres,

Before I knew what was happening, I had fallen in love with you.  It was subtle and strong, a mere flick of the remote, and there you were, parading across my television screen in fits of self-deprecating humor.  You have inspired and touched millions of viewers nationwide.  It is no wonder your name sounds less like “onerous” and more like “generous.”

I have never written or contacted a television personality before—though you hardly personify the typical self-serving celebrity of talk show infamy. After I witnessed your recent episode with Wacky Steve, the Science Guy, I was compelled to put pen to paper.  My aim is to bring to light the relevance of Steve’s cornstarch experiment: the obvious, the obscure, and the ironic.

My ten-year-old sister, Chloe Keller, was diagnosed with Glycogen Storage Disease when she was three months old.  I have enclosed with this letter a detailed, clinical description of the disease, but in short, Chloe’s body can’t break down sugar.  GSD, as it is abbreviated, lends itself to an expansive range of consequences, the majority of them life-threatening.  Chloe must avoid all foods with sugar.  She must eat every two to three hours in order to steer clear of hypoglycemia, liver damage, or the risks associated with stroke and death; Chloe will have this chronic disease for the rest of her life.

Cornstarch is what keeps Chloe and the other children with this menacing disease alive.  That’s correct, cornstarch.  It’s not a scientifically sound, unpronounceable brand name that has pharmaceutical companies clamoring for market share and distribution, nor does it come with an inflated price tag.  Cornstarch, in the arena of groundbreaking medical breakthroughs, is as generic as it comes.  No complex name can hamper its power.  It is merely a white powder that, when mixed with cold water, saves lives.

Imagine my surprise when 2,000 gallons of this precious powder was used on your show for the purpose of Silly Science Experiments!  Did the producers of the show have any idea that their wacky trick contained a dual meaning: light-hearted entertainment and a life-saving cure?

Like diabetes, patients with GSD can live with proper maintenance and management of the disease.  Unlike diabetes, there is limited funding for a cure.  Because GSD only afflicts 1 in 100,000 of our population, and diabetes 23.6 million, it gets left behind, an orphaned disease amid more publicly known life-snatchers.  GSD is not cancer or heart disease.  Funding does not come easy for rare illness nor does it generate extensive revenue for the drug companies.  Diseases such as GSD are nameless and faceless until they attack someone you can’t bear to lose.

Dr. Max Gerald, the research pioneer for GSD, has been working on gene therapy in dogs at University of Florida’s Shands Hospital with great success.  His efforts on behalf of many sick children have been indefatigable.  Sadly, in recent months, Dr. Gerald’s already limited funding has been cut short, and many of his dedicated veterinarians and loyal staff have been let go.  Dr. Gerald has remained steadfast and undeterred by these cutbacks, caring for the dogs himself and working tireless hours.  When contacted by GSD specialists worldwide, the largest distributor of cornstarch nationwide was not interested in offering their support in the battle against GSD.

Human-interest stories are your specialty.  Though you speak to us from our TVs, your voice is loud, warm, and vibrant, and your compassion is visceral. 

I write to you today, not for GSD alone, but for all the rare diseases worldwide that are in dire need of exposure and support.  By using your influential voice, please help us shed some light on them. An orphan disease may not afflict millions of people, but when it affects someone you love, it’s the most important disease in the world.

Sincerely,

Levon Keller

“It’s perfect,” says Lucy, “and better that we took out the part about David.  You want her to do this because she cares, not because she feels sorry for you.”