Fierce Joy

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Overview

Fierce Joy: A Memoir is a medical mystery, a spiritual adventure, and a love story. Ellen Schecter had everything she ever wanted: a loving marriage, two great kids, and her dream career writing children's books and television programs. Then her life shattered when she was diagnosed with a painful, potentially fatal disease. Fierce Joy tells the story of how Schecter found a way to be sick without suffering and transformed the loss of her

place in the world of work into a quest ...

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Overview

Fierce Joy: A Memoir is a medical mystery, a spiritual adventure, and a love story. Ellen Schecter had everything she ever wanted: a loving marriage, two great kids, and her dream career writing children's books and television programs. Then her life shattered when she was diagnosed with a painful, potentially fatal disease. Fierce Joy tells the story of how Schecter found a way to be sick without suffering and transformed the loss of her

place in the world of work into a quest for her soul. Propelled by illness into a search for new meanings, she learned to listen to her body and find healing even though a cure was impossible. Never asking "Why me?" she instead asked, "What's next?" and forged a new life paradoxically filled with joy.

AUTHOR:

Ellen Schecter has published many books for children. Her first novel, The Big Idea (Hyperion), won the Américas Book Award for Children's and Young Adult Literature. Her Family Haggadah (Viking) was a Book-of-the-Month and Jewish Book Club selection. Schecter has written or collaborated on many multi-award-winning TV series for children and families, including: "Reading Rainbow," hosted by LeVar Burton on PBS; "The Magic School Bus," starring Lily Tomlin as Ms. Frizzle; and "Allegra's Window" on Nick, Jr. She was executive producer of the award-winning documentary "Voices of Lupus," which was distributed free to every English-speaking Lupus Foundation in the world.

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Editorial Reviews

Publishers Weekly
Starred Review.

Schecter's intimate recounting of her life-changing struggle with systemic lupus is a riveting journey of courage and determination. The author admits early on that "there is no happy ending," but her frank declaration belies a tenacious will to survive. As the disease progresses, Schecter, a children's book and TV programming writer, explores medicinal alternatives like "hypnosis and trance work," but soon succumbs to the physical demands of her illness; a cane, 26 pills, and eventually "hideous metal crutches with arm cuffs" become a part of her daily effects. Rallying every "spiritual, pharmaceutical, psychological, and physical" resource available, Schecter resolutely continues to go through the motions of a normal life, at least to the extent that she is able-at an excruciating housewarming party, for which the author arrayed her "deteriorating silhouette... in flowing black silk and pearls," she is roundly snubbed by each guest, though she candidly points out her own dismissal of another party-goer sequestered in a wheelchair. Schecter's epiphany-that loss begets gratitude-is unsurprising, but her unsparing prose amounts to a fierce, funny, and inspirational story.
(c) Copyright PWxyz, LLC. All rights reserved.

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Product Details

  • ISBN-13: 9780983237044
  • Publisher: Greenpoint Press
  • Publication date: 6/1/2012
  • Pages: 276
  • Sales rank: 812,760
  • Product dimensions: 5.50 (w) x 8.50 (h) x 0.62 (d)

Read an Excerpt

FIERCE JOY

a memoir


By ELLEN SCHECTER

New York Writers Resources

Copyright © 2012Ellen Schecter
All rights reserved.
ISBN: 978-0-9832370-4-4


Excerpt

CHAPTER 1

Sanctuary


Without music life would be a mistake. Friedrich Nietzsche


1996

The prescription in my hand says:

MRI of Brain Rule out: Arteritis, Vasculitis, Brain Stem Infarct


I hand it to the technician in the MRI suite. He points to the narrow bed; I lie down, trembling.

You can do this, says Rational Ellen.

Just stay calm, Observing Ellen adds.

But they're examining my brain, answers Scared Ellen.

There's nothing wrong, says Rational Ellen. Nothing serious.

You hope, Wiseass taunts.

The technician straps me down on a narrow pallet: knees, trunk-and-arms, forehead.

Like Dr. Frankenstein's monster.

"Don't move," he commands, voice colder than the room.

I forget and try to nod, but I'm now completely immobile.

Like a quadriplegic. Ugh, the Observer says.

Nose itches. I have to scratch.

Tough luck, Wiseass points out.

"Can't you hold your feet together?" he asks.

"No."

He straps them.

Too tight, Scared Ellen complains. It hurts.

Shut up, all the Ellens tell her.

"Keep still." He's irritated.

"I'm shivering."

"The machines need it cold."

He wraps me in two sheets. Both cold. Like a mummy.

Like a baby, whines Scared.

He punches the green button. "Let's go."

"Wait! Can I lis—"

"No."

"Do you have music? Headphones?"

"Not today. System's broke."

The MRI hums. Green and red lights blink.

Slowly, I enter the flawless white sarcophagus. It presses down around me, much too close. Strikes me snow-blind.

"We're starting. Total time, forty minutes."

Ugh.

MRI. Sounds like ... sneakers in a dryer. Nuts chasing bolts. Like ... robots, learning to dance ... the polka. The man with the hook scrabbling at the roof of Teddy's car, midnight, down by Pennypack Creek.

No. Too scary. Start again.

OK, then ... Let's write a cartoon. Think New Yorker. Carnegie Hall: MRI machine mid-stage. Heads of audience, seen from behind. Conductor lifts baton. Over shoulder of audience member, we read the program:

Concerto for MRI and Found Objects:

Wet Sneakers

Robots

Nuts and Bolts

Screwdriver and Hammer


No, I can't think.

Can't breathe.

Let. Me. Out. Feels like death.

Don't want to die.

Help me. Let me out.

Help me. Oh, please—help me—and—


Suddenly, rising up out of the living hollows of my bones and brain, out of that deep wellspring of joy seated near my soul, vibrating right inside my breastbone, soars: the Bach Double Violin Concerto.

The first few notes promise me this dingy lab painted the color of despair is merely one tiny corner of the world; the next strands of melody lift me above my slowly exploding composure; and now the elegantly braided golden chords of the violin fugue lead me away, into a flash of sunlight where I breathe green air and fly free of my body. Unseen musicians play my bones like violins. The music lifts me up as glory floods in like a rising tide.

* * *

My work with Eric helps me understand how important it is to go exploring in my past to look not only for the frightening parts of what I learned through my father's illnesses, but for the peaceful interludes and positive ways our family found to get us through the wrenching times. Whenever I have to go into the hospital, to endure spinal injections or another painful treatment, it's no accident that I think of music as a portable sanctuary that goes with me almost anywhere.


Terrified in the middle of a stroke, after Dr. Lewis calls Jim, I use my one allotted call from the ICU to phone my dear friend Sarah.

"What can I do?" she asks.

"Help Jim and the kids," I say. "And please, bring me music." When she arrives with a shopping bag full of Brahms, Dvorak, and Bach, I somehow know I can make it through the spinal tap and other hideous moments.

Where did I learn that habit of solace?

My childhood was drenched in music: my mother sang and played the piano beautifully, and when I begged to play, too, she promised that as soon as I could sit on the piano stool and touch the pedals with one foot I could begin. So at four, after lots of stretching, we put on white gloves and pretty dresses and took the trolley car to Miss Haynes' white house for our lessons. We played duets at recitals, curtseyed to applause, then enjoyed tea cakes and lemonade. When my mother went downtown for her voice lessons, I lay in the crimson twilight under the grand piano, music vibrating in every bone.

* * *

It's a Technicolor Sunday morning. I dribble honey on my pancakes and it catches stars of sunlight. Daddy conducts the Philadelphia Orchestra with his fork. The golden notes of a violin drizzle down around us in the sunlight, thick and sweet as honey.

* * *

Belly warm and full, I sprawl on the floor in front of an ancient mahogany record player much bigger than I am. The booming magenta chords of the Warsaw Concerto vibrate deep inside my chest. Magenta—my favorite color in the sixty-four Crayola crayon box.

When the record ends, I wait, suspended in velvet silence, till the next heavy disk flops down. The needle starts to hiss-ss-ss, then notes unfurl from the record's circling ridges. I count on those notes, every time the same, not like Mommy, who can be happy one minute, angry another. The notes wave over me like a large white banner that shelters me, for a time, from the big black spider that jumps out on black-and-white days when Mommy gets mad and when Daddy disappears for a noperation.

What is it, a noperation?

* * *

I am a little girl of three, living in our Rosebush House, where my daddy calls me Nelle—Ellen-backwards. Daddy has been away a long time in the hospital for another noperation. I still don't understand what a noperation is, but he's finally home.

Maybe it's Daddy. There's a bandage on one eye and the other won't smile. His face is white as our fridge and his lips are skinny. His whiskers make his face gray. His hands shake, even when he's resting on the couch.

"Hi, Nelle," he says, kinda whispery. Way back, he showed me Nelle, NellE, Ellen-backwards, with a pencil on paper. So it must be Daddy. He's wearing Daddy's maroon bathrobe and scuffy maroon leather slippers. Maroon is another one of my favorite Crayola colors. I go closer to hug and smell his good daddy smell.

"Don't hug Daddy hard," Mommy warns. "Don't you dare jiggle him."

She pulls me away.

"Sit over there," she commands, pointing to a brown leather hassock across the room near Jack Scarlet's window.

I won't.

"I said go!" Her words scald like too-hot soup.

I stomp over, but I won't sit.

Daddy closes his one eye I can see. Does the one under the bandage close, too?

"C'mon, Daddy, let's go outside and play. Let's mow the lawn." He has a big green mower, and I have a toy one.

"Maybe tomorrow, Nelle," he answers, and his eye closes again. I see fat white bandages sticking out: one wrist, two arms, three throat.

"Daddy's too tired to play. He has to sleep now, Ellen."

"Want to cuddle then? Just a little? I missed you so much." I can't help crying.

"He can't jiggle, Ellen; you'll hurt him too much. And stop crying or I'll send you upstairs to your room. Big girls—good girls—don't cry and nag."

I plop on the hassock, and put my head on my knees. I feel tears down my legs.

I'm afraid she'll send me away from Daddy after I waited so long to see him. I want to be a big good girl, but it's hard to stop crying once I start.

I jump up, but stay away. "How 'bout music, Daddy? Want to listen to music?"

Daddy turns his face and opens his eye. Now it's smiling, and I see my very own soft Nelle-light and smile-crinkles at the corner.

"An excellent idea. Pearl? The Sibelius Violin Concerto? It'll do us all good."

Mommy puts the records on the spindle and clicks the starter. I see the Jack Scarlet rosebush climbing up the wall outside, all big thorns now; no roses till summer. The first fat black record flops down, the needle goes hiss—ss—ss, and I rock to the rhythm in my little rocking chair by the window. In a few heartbeats, the creamy satin song of the violin lifts us up and up, then binds us loosely together in a momentary peace.

* * *

Whenever Daddy's home, the world floods with music. Daddy and Mommy and I sing The Mikado as we wash and dry the dishes. We are Gen-tle-men-of-Japan, or Three-Little-Maids-From-School. Daddy is the Wand'ring Minstrel, starring and conducting the orchestra at the same time, singing the words I remember:

"A wand'ring minstrel, I,

A thing of shreds and patches;

A man of songs and snatches,

and dre-ee-mee lu-u-la-by-eyes,

And dreamy lullabyes."

He draws out the notes with glee, curling his pinky fingers, his unruly eyebrows lifting with his voice, and I love him down to his toes. Clowning under our tent of music creates a safe space that makes me feel nothing can hurt me as long as Daddy is near.

* * *

Each morning begins with singing at the small William C. Jacobs Elementary School in Bustleton, PA in 1952. The building is a hundred years old and holds barely a hundred students. After attendance each morning, we slide back blackboard sashes between the classrooms on the second floor to create one large room that becomes our auditorium. The little kids file upstairs and squeeze in beside us big third-graders on the seats of flip-top desks so old they still have flakes of dried-up ink in the glass inkwells.

After standing to salute the flag and sitting "still as statues" for the Bible reading, we open fat, sand-colored copybooks that crackle with sheets full of typewritten, pale-purple words. The books reek of the dizzy smell of ditto ink and flour paste. Mrs. Crissie, the stern teacher who wears garish orange pancake makeup and magenta lipstick that oozes outside her lip lines in dark threads, bangs out sour but enthusiastic chords on a rickety piano.

As sun shines through the wavy old window glass, we all sing to greet the day:

"This is my Father's world, And to my listening ears

All nature sings, As round me rings

The music of the spheres."

I was sure in second grade that the hymn was about my father. Although I know by now, in third, that it isn't, I can't help pretending it still is.

* * *

My father pushes back the dirty dishes on our kitchen table and scrubs a clean space with his napkin. Then he draws a diagram of the sun and planets on a piece of my loose-leaf paper. I always feel a shiver, a kind of exultation, when my physicist-father tries to help me understand something about how the universe works, even though I'm only ten. When he rotates an orange under the lamp above our kitchen table to show how the earth circles the sun—how night becomes day, then gives way again to night—I feel connected to the planets and stars. Knowing about gravity and centrifugal force not only makes me feel subject to their power, but also in possession of that power in some small way.

Now Daddy explains Johannes Kepler's theory of the "music of the spheres." My mother keeps clearing the table, half-listening. I know she's both happy and jealous that my father is so patient and gentle with me, when her father was always so cruel.

"Copernicus proved that the planets orbited the sun," Daddy says, still drawing the solar system in his precise way. "Then Kepler plotted the orbit of each planet. He believed that each planet, or sphere, circling in its orbit, created its own musical tone."

"Like when you run your finger around the edge of a wine glass and it sings?"

"A little like that. Well, Kepler thought each planet had a different tone because of its size, and the size and shape of its orbit."

Daddy finishes sketching the dotted lines of the orbits in his drawing, then turns each line into an arrow. "When all the planets moved through their orbits, he thought they made music together—a kind of celestial, crystal chord. He called it "musica universalis." But you can't actually hear it—it's more of a theory. Even so, I like imagining it."

"Me too."

We sit quietly. "Hey, let's go outside, Daddy—maybe we can hear it."

"Well ... we could try. Want to come, Pearl?"

"No, that's all right. I'll just finish up here, then relax with my book." Mommy smiles a little sadly. "I'm not as imaginative as you two."

Daddy and I walk into the starry suburban night and sit on our front step. The air feels chilly after the steamy kitchen and dew twinkles orange on the grass, tinted by the light over our front door. I feel bombarded by the normal night sounds: the pulsing shrill of tree frogs and crickets; moths and June bugs bumping on the screens; faint clinks of silverware and glasses from the house next door. Daddy clicks off the bright light.

It sounds quieter in the dark. I try to hear the silence: to strain away the tiny sounds of tiny creatures that hug our tiny planet, including us. Sitting quietly with my father, I feel huge and infinitesimal at the same time; a tiny speck, yet connected to his large ideas.

The stars are perfectly silent way above us, but I think maybe—just maybe—I can hear the deep, thrilling pulse of the planets because of what Daddy told me. It seems both impossible yet entirely fitting that we two can listen together to an unheard music struck from the universe by our knowing. Maybe we're the only two people in the world except Kepler who will ever hear this glassy harmony, I think, and just because we have faith enough to listen. How lucky we are to trust each other, and the universe, so completely.

* * *

Both the bull and the bullfighter know how to find their querencia—their place of sanctuary within the ring. Smelling blood, hearts hammering, fighting for breath, facing death, both find places of rest before the battle continues. I, too, must find my own sanctuary—and music and memory help me.

As an adult, I move through years of illness, lighting one match at a time to find my path through a dark forest full of pain and confusion. Even when I'm most frightened, music offers radiant, inviolable moments, no matter what pounces on me out of that darkness. I carry it everywhere I can. It offers protection in the sterile boredom of a doctor's waiting room or a desolate underground hallway, when I lie on a gurney waiting for a procedure, staring at the water-stained ceiling with my bladder bursting.

Though my father's frequent disappearances for surgery taught me terror, he also showed me dignity and strength in his responses to infirmity and disability. During World War II, my father—a research physicist—was excused from military service so he could work on crucial army weapons, helping to invent, then test, the recoilless rifle, which would be used all over the world in sharply different climates. About a month before I was born, he tested the gun in a special sub-zero laboratory, neglecting to wear protective gear. The gun exploded in the cold, spattering metal all over his body, immediately destroying his right eye and threatening his left. For weeks, he lay in Wills Eye Hospital, packed in sand bags so he wouldn't move and endanger the left optic nerve. My mother sat beside him every day, feeding and encouraging him, making a pink-and-brown calico elephant for me, stuffed with surgical cotton the nurses supplied. His vision was saved, and as soon as he could, he picked himself and went forward, to work on the first pilot ejection seat, still used by pilots when their planes go down. We christened it the Schecter Ejector.

It wasn't until I was an adult, grappling with my own physical losses, that I understood how difficult it must have been for him as a handsome young man to maintain a positive self-image and pursue his daunting career facing a lifetime of living with a glass eye that was extremely obvious and frequently infected. He also endured, with equanimity, the dozens of surgeries necessitated by the shrapnel wounds all over his face and body. Yet he never gave up, and because of his example, neither do I.


Even in my most despairing moments of illness, I try to spend my time well instead of wasting it. I heal my soul with the sunny dazzle of Mozart flute concertos; invite the passionate elegance of Brahms' violin and piano duets to remind me why I want to be alive; and ask the Brahms Clarinet Quintet to bind me to a Presence with wings I have come to know as God.

No matter where I hear it, even on the bleakest black-and-white days, even snowed into a white MRI sarcophagus, music still brings me back to those Technicolor Sunday mornings when my father conducted the entire Philadelphia orchestra with his fork, and I could almost taste the violin melodies flowing through our kitchen.

Music brings back the warm sunlight that shone on us like a blessing and sings of the evenings in a tiny, faraway kitchen when I was one of Three Little Maids from School, drying dinner plates till they shone as bright as moons.

It still holds the promise of a mysterious, crystalline harmony ringing out between the silent stars, and unfurls above me like an immaculate white banner bestowing sanctuary.


(Continues...)


Excerpted from FIERCE JOY by ELLEN SCHECTER. Copyright © 2012 by Ellen Schecter. Excerpted by permission of New York Writers Resources.
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
Excerpts are provided by Dial-A-Book Inc. solely for the personal use of visitors to this web site.

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Table of Contents

Contents

PART 1: THE WOMAN WITH WINGS....................          

Chapter 1: Something (1988)....................     3     

Chapter 2: Something Terrible (1988)....................     7     

Chapter 3: The Movie in My Mind (1988)....................     16     

Chapter 4: Dr. Rheumatology (1988)....................     26     

Chapter 5: The Woman with Wings (1988)....................     34     

Chapter 6: "Put on Your Pajamas" (1988)....................     45     

PART 2: A LONG, DARK CORRIDOR....................          

Chapter 7: It Is What It Is (1990)....................     55     

Chapter 8: The Body Speaks (1994)....................     66     

Chapter 9: Body Language (1994)....................     76     

Chapter 10: Just a Syringe (1992)....................     84     

Chapter 11: The Paradox of Pain (1993)....................     91     

Chapter 12: Third Opinion (1994)....................     98     

PART 3: STAY WITHIN YOURSELF....................          

Chapter 13: Easter Se al Poster Girl (1996)....................     105     

Chapter 14: The Cocktail Party (1996)....................     116     

Chapter 15: Stay Within Yourself (1996)....................     121     

Chapter 16: Sanctuary (1996)....................     128     

Chapter 17: Climbing Down the Mountain (1996)....................     138     

PART 4: A CASE OF MISSING IDENTITY....................          

Chapter 18: Home for the First Time (1993)....................     145     

Chapter 19: Barely Jewish (late '40s–early '50s)....................     148     

Chapter 20: A Case of Missing Identity (1949)....................     162     

Chapter 21: Singing in Churches (1960)....................     171     

Chapter 22: Awakening (1996)....................     178     

Chapter 23: The Wall Hits Me (1998)....................     184     

PART 5: WRESTLING WITH GOD....................          

Chapter 24: A Door (February 1998)....................     197     

Chapter 25: An Invitation (July 1998)....................     206     

Chapter 26: Beginning Again (August 1998)....................     212     

Chapter 27: Inside the Volcano (1999–2000)....................     216     

Chapter 28: Trying to Crack the Code (Fall 1998–Spring 1999).........     220     

Chapter 29: Two Pockets (Fall 1998–Spring 1999)....................     226     

Chapter 30: The "Thing" (Spring 1999)....................     230     

Chapter 31: Bake a Cake (1999)....................     233     

Chapter 32: If Not Now, When? (May 1999)....................     243     

Chapter 33: Embracing the Wolf (2011)....................     250     

Bibliography....................     252     


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  • Posted January 8, 2013

    more from this reviewer

    Reviewed by Lela Buchanan for Readers Favorite Everyone has a s

    Reviewed by Lela Buchanan for Readers Favorite

    Everyone has a story, but there are few quite as stirring as "Fierce Joy", a memoir filled with huge life struggles. Ellen Schecter begins experiencing physical symptoms of an unknown origin in mid-life that interrupt her normal lifestyle. With grit and determination she launches an offense, refusing to become an invalid as she battles not one, but two, debilitating and incurable diseases: systemic lupus and peripheral neuropathy. As she soon discovers, the battle is much more than a physical struggle; the greatest challenge takes place in her heart and mind. How do you stay positive mentally and emotionally when you are watching your body physically, and very painfully deteriorate? Pain tends to isolate its victim, and although Ellen has a loving network of support, including her husband and two children, you cannot help but sense her loneliness as she walks through this valley. But this is not a memoir of helplessness or hopelessness. This is a story of triumph!

    I was mesmerized from the opening pages of "Fierce Joy" to its closing thoughts. You walk with Ellen, feeling her fear, her anger and her loneliness as she struggles to understand the insidious alien invaders trying to destroy her body. She does not--will not--go gently. Fueled by grit and innate resolve, and sparked by a mystical, ineffable experience, a fire ignites within her as she so eloquently states: "I'm . . . flooded with a fierce joy that simply will not allow me to be dragged down . . . pushes me up and up, into the light . . ." This story will both inspire and challenge you to persevere against all odds. You will be incredibly blessed by her journey.

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