Number 67

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EXPLORING THE EXPERIENCE OF DISABILITY THROUGH LITERATURE AND THE FINE ARTS

ALEIDOSCOPE

Difficult Journeys
"Rosemary" by JoeAnn Hart "Visiting with Alzheimer's" by William D. Perry "The Cure for the Fear of Dying" by Zoe Karakikla-Mitsakou

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ALEIDOSCOPE
Exploring the Experience of Disability Through Literature and the Fine Arts

Summer/Fall 2013 Number 67

Contents

 EDITORIAL NOTE
Difficult Journeys
Gail Willmott 4

The Angry Chair
Gabriel Valjan

50

 PERSONAL ESSAY  FEATURED ESSAY
The Cure for the Fear of Dying
Zoe Karakikla-Mitsakou 6

After Eric
Gary Doherty

22

The Yarn Spinner

38

 FEATURED ART
Undefined by a Diagnosis
Sandy Palmer 32

Judie Rae

Rosemary
JoeAnn Hart

42

 ART
Painting with Light
Sandy Palmer 46

 CREATIVE NONFICTION
Visiting with Alzheimer’s
William D. Perry 16

 FICTION
The House Call
Ann Laurella DiFrangia 10

 POETRY
Belly Crawl
Ellyn Laub 5

Jack’s House
Paul Alan Fahey

26

Locus Mentis
MaryAnn L. Miller

8

1

The Waiting Room
Jim Pascual Agustin

15

Seventeen
Dr. Kathryn Jacobs

21

Phantom Limb

25

Alexander Tan Jr., M.D.
Elizabeth Jameson, Self Portrait of the Artist’s Brain, 2009, French dyes on silk, 12” x 14”

Para Los Bravos
Tim Kutscheid

30

Loss of Limb
Chris MacGilvray

31

Least Needs

60

E. Louise Beach

Taking Place Noon, Like Whiplash
Kelli Allen

37 58

Plenty
Jennifer Ruth Jackson

60

Maybe Suicide? A Bipolar Patient to Her Doctor
41 Margaret Bobalek King

61

notes on a coupon that came in the mail which promised to end my pain
John Mahoney

The Salt of the Earth
Doris Radin

62

No Other Choice Triumphed The Gift
Debra Beauchamp

44 44 45

 BIOGRAPHICAL NOTES

63

Madeleine
Bob Nicolescu

45

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Staff

PUBLISHER Gary M. Knuth, Executive Director United Disability Services EDITOR-IN-CHIEF Gail Willmott, M.Ed. MANAGING EDITOR Lisa Armstrong ART COORDINATOR Sandy Palmer EDITOR-IN-CHIEF EMERITUS Darshan Perusek, Ph.D. HONORARY EDITOR Phyllis Boerner ART CONSULTANT Jennifer Wexler Director of Visual Arts VSA, Washington, D.C. MANUSCRIPT REVIEW PANEL Fiction Review Mark Decker, Ph.D. Bloomsburg University Bloomsburg, Pennsylvania Poetry Review Sandra J. Lindow University of Wisconsin-Stout Menomonie, Wisconsin

KALEIDOSCOPE (ISSN 2329-5775) is published online semiannually. Copyright © 2013 Kaleidoscope Press United Disability Services, 701 S. Main St., Akron, OH 44311-1019 (330) 762-9755 Phone (330) 762-0912 Fax email: kaleidoscope@udsakron.org http://www.kaleidoscopeonline.org Kaleidoscope retains non-exclusive world rights to published works for purposes of reprinting and/or electronic distribution. All other rights return to the writer/artist upon publication. We request credit for publication as follows: Previously published by KALEIDOSCOPE: Exploring the Experience of Disability through Literature and the Fine Arts, 701 South Main St., Akron, OH 44311-1019 Indexed in Humanities International Complete and the MLA International Bibliography non-Master List. Listed in International Directory of Little Magazines and Small Presses, Magazines for Libraries, and The Standard Periodical Directory. KALEIDOSCOPE is a member of the Council of Literary Magazines and Presses (CLMP). Submissions: Email or online submissions preferred. If submitting hard copy, send copies of originals with SASE. The editors do not assume responsibility for returning submissions without ample return postage. Address all correspondence to the editor-in-chief.

KALEIDOSCOPE, published since 1979, explores the experience of disability through literature and the fine arts. Fiction, painting, photography, pencil sketches, sculpture, poetry, nonfiction, book reviews, and theater are all featured in various issues. Unique to the field of disability studies, this award-winning publication expresses the diversity of the disability experience from a variety of perspectives including: individuals, families, friends, caregivers, and healthcare professionals, among others. The material chosen for KALEIDOSCOPE challenges and overcomes stereotypical, patronizing, and sentimental attitudes about disability.

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Editorial NOTE

Difficult Journeys
Gail Willmott

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ifficult journeys—every life has them. It has been said that no one gets out of this life without experiencing some pain— sometimes it passes relatively quickly as when we heal from a brief illness or part from close family or friends after a brief visit. Other times, pain, whether physical or emotional, carves a place deep in our souls and remains there for a very long time, perhaps forever. Life-altering disabilities or illnesses, the failure or ending of a significant relationship, these traumas can change us irrevocably, making us fundamentally weaker or stronger depending on how well we are able to work through the pain and ultimately to move forward. Our ability to cope with painful changes usually depends on how strongly we have been able to develop our inner resources—some would call this faith—and also on the care and support we receive from others. I have often been counseled that one of the best ways to recover from a difficult situation is to reach out to someone else who needs help. Becoming involved in helping to meet another person’s needs can be a valuable distraction from our own circumstances and lead us to make a positive difference in another person’s 4

life. Assisting someone else can be hard to do at first because we may feel that we lack the will and the energy to connect with another person. In twelve step recovery programs there is a saying— “Fake it ’til you make it.” I believe this advice applies to many situations in life. If one begins to act in a way that is initially difficult, eventually we begin to believe in what we are doing, and a new attitude begins to develop, and we embrace a more positive outlook by reaching out to another person in need. This is one way of lessening the severity of the pain, reconnecting to life, and moving forward. It is by no means easy, but it usually works. In this issue of Kaleidoscope we have personal essays, fiction, and poems which examine different types of significant losses whether they be physical, mental, or emotional. Many of these pieces also focus on the permanent loss imposed by death—a reality which we in this culture often don’t like to acknowledge. Mortality is a fact that each of us faces throughout our lives in the loss of those close to us and one which each of us must eventually confront for ourselves. In the scheme of things, our individual lives are very short, and once in a while it doesn’t hurt to be reminded of that truth.

Perhaps more uplifting and life-affirming are the features of the two artists whose work and stories you will see here, and at last, all of the art appears in color in our first online issue of Kaleidoscope. We spotlight Elizabeth Jameson who creates amazing work based on her own MRI images, and Veronica Wilson who creates beautiful stained glass works of art. I hope that our readers, some long-time supporters and many people who are new to the magazine will find this issue meaningful in some way.t

Gail Willmott

POETRY

Ellyn Laub

Belly Crawl
How does he feel I wonder? When I pass him by at what feels like great neck speed as he totters along the three mile circle alone falling farther and farther behind. The one who stormed the beaches at Normandy and crawled on his belly to save our world. The one who missed his fiancée and couldn’t find his brother for three years and a day. The one who watched his mother bury that brother and hold the folded flag in her lap. The one who went to work EVERY day even on Shabbat sometimes to feed the babies. The one who called the police when the daughter grew up high and stole from him. The one who saved enough by giving up lunch to send that daughter’s child to college. The one who buried the woman who gave him the children and the care and the suppers. How does he feel I wonder? Maybe he just gets up every day puts one foot in front of the other and takes his walk. Just like I do.

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FEATURED ESSAY

The Cure for the Fear of Dying
Zoe Karakikla-Mitsakou

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he cure for the fear of dying is living. Death was an abstract concept for me for years. Maybe that’s true for most people. I have no recollection of when this sinister entity and I became so well acquainted; I can’t seem to pinpoint the exact moment in time that the concept of death started transforming from a theoretical notion into a being that crept into my life. What I can tell you is that its presence in my thoughts is sometimes deafening, blinding me to anything else, paralyzing me entirely. The cruel joke of it is when I was actually dying, the thought of death somehow vanished from the room. In the ICU, hooked up to an EKG, blood pressure monitor, pulse oxymeter, oxygen mask, and with a plasmapheresis machine attached to my central line, all I could think about was the pain. Pain and dignity. They told me I was the youngest patient to have been in the ICU for months. That, coupled with the exotic and cataclysmic presentation of my disease had doctors and nurses running in and out of my room every two minutes, drawing blood from my veins and arteries, checking labs, increasing meds, getting x-rays, asking again and again if I was born with this or just turned out that way . . . There is a fast pace to any ICU and yet it almost 6

seems motionless at times. Like a little bubble outside normal time and space. I had a central line placed in a manner so urgent, without anesthetic, time to prepare, or time to lose, that the muscles around my lungs went into spasm and I started choking and gasping for breath. It was very clear that people around me were panicking, shouting at the doctor, and asking if he pierced my lungs with the needle, trying to figure out if my right lung had collapsed, if an artery had been mistakenly punctured. Incredibly I wasn’t interested in what was said. A male nurse I never saw again after that day was holding my left hand, my private nurse had her hand on my left arm, my neurologist touching my right leg and my primary doctor was holding the tops of my feet gently in his hands. The only thing that mattered to me was the feeling of their skin on mine. There seemed to be some kind of value in just being in that room, being connected to these others in any way. Patients are naked in the ICU. The first thing they do to you when you walk, or are wheeled through the ICU doors of any hospital is to take your clothes off. They need access to every orifice, every piece of skin, every vein and artery, and every organ, and clothes are nothing

but a hindrance. I had been naked in front of medical professionals before. My private nurse bathed me for weeks when I couldn’t walk or lift my head or arms from meningo-encephalitis just a year prior. She used to go on and on about how if I felt clean I would feel better and recover faster. All I remember is the dull, all-consuming pain that throbbed from my toenails to a place deep inside my skull whenever she tried to move one of my right limbs. But this time the experience was different. I asked to wear a very loose and worn, sleeveless nightshirt with a faded picture of Donald Duck on it and a pair of boxers and upon my doctor’s insistence and apparently also due to my age, I was allowed to keep the shirt. The boxers had to go as there was a line in my femoral vein docs needed access to at all times. The cure for the fear of dying is living. Patients are naked in the ICU. Every single one of us defenseless and vulnerable, at the mercy of these others. The first night I was there, I lay awake and looked in awe as a middle-aged gentleman in the bed right across from mine came to from general anesthesia after open heart surgery. He, like me, had a private nurse who stood by his bed

on high alert at all times and almost in disbelief, kept asking his nurse if he was alive. The nurse calmly repeated the same sentence, “Mr. X, you’re just waking up from surgery and are in the ICU. You’re going to be groggy for a little while, but we’re taking good care of you and you’ll be just fine.” Over and over again this surreal little game went on and the fellow, who was obviously waking up more and more by the minute, just kept asking, incredulous, and not satisfied with the response he was getting: “Am I alive?” I don’t want to presume I know what he meant by that question, nor do I mean to doubt the nurse who believed he was simply groggy and disoriented. It’s true that once he was fully awake the repetitive questions stopped. Patients are naked in the ICU. Jamie Weisman claims the acronym has a double meaning; Intensive Care Unit and In Case U Die. I can’t talk about anyone else, but for me death was a certainty when I walked through those doors. In Case U Die was very much a given. How I would die and when were the only unknowns. Would it be the same day? Would the central line clot immediately or would I go kicking and screaming a couple of days down the line from multiple clots elsewhere? Would I die with dignity or would I cower? I didn’t cower. Nor did I start kicking and screaming. The central line did not clot—and in a cruel twist of fate I recovered. After a week or so I was moved to a private room and my doctor started talking about a long term management plan and long term medications. Like nothing had happened. Like everything would go back to how it was. Like I had been given a second chance and would at some point walk out grateful and unscathed.

Patients are naked in the ICU. And in the coldness and the harshness of the reality of that room something changed. It was as if the person who walked into the room died there the same day and someone else emerged. Someone small and petrified, someone who knew in her very core that the ghouls and monsters of horror stories weren’t only real; they were a part of her, forever engrained in her DNA and psyche. I walked out of the hospital with no sight in one eye and minimal sight in the other and lost even that seven days later from another clot. I was blind for twenty months. And in those twenty months I adapted. I grew confident and knowledgeable and settled into my new life. And just when I thought I knew what the future held, it was as if the carpet was yanked right out from under my feet. Not only was my sight better but my autoimmune illness (APS) was in remission. Once more I adapted fast and started believing I was better. And then remission ended. And immunodeficiency began. I was talking to a friend a couple of months ago and he told me that being with me and around me is like being around someone completely different than before. He said I used to be vibrant, energetic and playful, that I used to radiate life, and that now what once was vivacious and bubbly has been replaced by reluctance, fear, and cowering. Patients are naked in ICU. And it is the metaphorical nakedness of that room and of what follows that strips away everything unimportant and insignificant about life, leaving a clear picture of what is valuable and what could so easily be lost, could so easily slip through our very fingers. When I look back to that day, I remember feeling a sense of awe and grate-

fulness for every single breath I took, however painful it was—and it was! I would have done anything, said anything, made any deal, cut off any one of my limbs just to have a little more time to be in pain and on this earth. I did not cower in the face of death. And I know in my very soul that I fought with all that I had and then some and held on to life by my teeth. People hear courageous stories of patients and soldiers and fighters of all kinds who hold on to life with all they have and never stop fighting if only to get a chance to live just a little bit longer, to hold on just a little more. What I’ve rarely heard is how people carry on. Say you get that second chance— that it has been given to you. You’ve stared death in the eyes and won. Now what? I think in an abstract sort of way people imagine survivors reenter the world of the living in the same courageous, determined, animated manner in which they fought to stay away from the world of the dead. The truth of the situation, for me at least, is a little different. Years later I still tremble in terror. Not because of death. No. Because of life. Evidently second and third chances don’t come with a manual. And people, however strong and dynamic they may be, are weary from the battles they fought and horror-struck after feeling the end, the brittleness and true uncertainty inherent in life. I laid naked in that ICU bed—truly, truly naked. And I never cowered in the face of death. But years later, I find myself realizing that in becoming aware and familiar in a very real way with death, I have cowered in the face of life. The cure for the fear of dying is living. And what is the cure for the fear of living?t 7

POETRY

MaryAnn L. Miller

Locus Mentis
Locus Mentis examines the misdiagnosis of my daily episodes of paralysis as Hysteria. This changed when the condition showed up in my three-year-old son and was properly diagnosed in both of us as Hyperkalemic Periodic Paralysis with Myotonia. MLM I. Ages Three to Thirty the crazy relative lives in the attic she visits me once a day someone named her Hysteria but her real name is Hyperkalemia she is much heavier than I I can’t move when she sits on me her floppy flesh sweats me to the chair or worse, the bed if I’m lying down I can’t get out from under her unwashed odor her bizarre stench pinning me for hours I don’t tell anyone she’s mine I make up excuses like I hurt my back or I mowed the lawn yesterday or I cut my foot I keep looking for someone else who’s related who smells like ammonia

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IV. Snake Lady Full Circle I knew Medusa, gaze full of power, sweat, and trembles, had to look at her. Couldn’t move, terrorized, stuck to the earth. A chemical stench oozing through cells. Tried to avoid her everyday. A bedtime chant a prayer for relief tomorrow, tomorrow, not again tomorrow. But every morning in the vomit-smelling school she found me. She drew my eyes to her brambly visage, berry picking in the summer copse. Rounding third base, barely making home before the collapse. At fourteen: muffled screaming from my weak larynx. Clinic doctor held a mirror to my face and there she was snakes growing out of her skull, boogly eyes all over me. Frozen, I believed everything he told me. Hysteria, he said. At thirty: my three-year-old son captive to her leer. Snakes slithered out of my mouth: NO. A different doctor showed us a book and we were in it. Medusa flapped her hair and flew away. VI. Made in the Image / Artist as God (After Prometheus Bound by Peter Paul Reubens) You keep him in the moment of atonement forever. vulnerable body, sliding from a precarious position on the canvas mountain into the gallery large muscled torso, small wincing face strength deterred by chains bolted to the massy cliff hands wrestling air feet writhing You called in the bird painter to place the raptor. talons gripping brow, penetrating one eye bestial feasting weight holding him against the black rock going about its business of punishment wings, feathers, leaves continuous with the landscape— the god still unsatisfied fire already stolen You have exercised your deity. (Due to space limitations only three sections of this narrative poem appear here. ed.)

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FICTION

The House Call
Ann Laurella DiFrangia

W

ith ten minutes left of her thirty-minute lunch break, Connie Delgado pressed an ice cold can of Diet Coke against her throbbing forehead and downed her last two Excedrin Migraine tablets. She pitched what was left of her pack of peanut butter crackers into the trash. During her residency training, Connie was told that practicing Family Medicine would give her a front row seat in the play of Life. This afternoon, from her front row seat, all she could see was an endless mound of paperwork. She rarely saw patients in the hospital any more, and she couldn’t remember the last time she had visited a patient at home. A gentle knock at the door by Lisa, her medical assistant, reminded Connie of the time. “Dr. Delgado, Mrs. Sullivan is in room three. Her son Craig is in the waiting room.” Connie walked down the narrow hallway and stopped at room three. She took Mary Sullivan’s chart from the rack on the door and perused the chart notes. Mary didn’t talk much, rarely offered any complaints. She lived with her son Craig, who faithfully brought her to every visit. “Hi, Mary. How are you doing today?” Mary Sullivan sat still and expressionless, appearing much older than her seventy years. Her hair was a blend of faded red and gray, shoulder length, with short bangs. Parts of her right index and middle fingers were covered with brown

tobacco stains. A blue and white floral shirtwaist dress, splashed with holes from cigarette burns, gently hugged her small, boney frame. Frayed black knitted socks fell loosely around her ankles. She reminded Connie of a rag doll. “You’ve lost sixteen pounds, Mary. Are you getting enough to eat?” “Oh yes. My son Craig takes good care of me.” Mary struggled to speak, her words interrupted by a barky, choking cough. Connie heard the tight wheezing as Mary tried to take deep breaths. She saw the bulging lymph nodes in her neck. “Mary, your lungs are very congested. Do those lumps in your neck hurt?” “No, I’m fine.” Mary rocked back and forth on the exam table, her eyes fixed on the ceiling. Connie saw the urine dribbling down the side of the exam table. Connie poked her head out into the hallway and called for her medical assistant. “Lisa, tell Craig Sullivan I need to talk to him in my office. I also need you to help Mrs. Sullivan get cleaned up.” Connie watched Craig, his wide shoulders nearly touching the walls, as he walked down the narrow hallway. He was

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wearing a Carhartt bomber jacket with the black corduroy collar pulled up around his ears. His brown and green camouflage hunting cap had a deer skull logo on it. “Something wrong, Doc?” “Yes, Craig. Your mom has lost a lot of weight. I’m sure you’ve heard that terrible cough.” “But I get food for her all the time. I buy frozen dinners, and all she has to do is put ’em in the microwave. I’m a truck driver, Doc, and I can’t always be there to make her eat. I tell her all the time that she needs to cut down on those damn cigarettes, but she can’t stop. Honest, I’m taking the best care of her that I can.” Connie saw the tears welling up in Craig’s eyes. “Craig, I’m sure you take good care of your mother, but people just get sick. It’s no one’s fault. We need to get her into the hospital to run some tests. Shouldn’t take more than two or three days.” “Can’t do that, Doc. Never.” “Why? What’s the problem?” “I promised Mom that no one would never send her away again.” “When was she sent away? I have no records of a prolonged stay in any facility.” Different diagnoses swirled around in Connie’s head. She wondered where Mary’s prolonged stay could have been. A TB sanitarium, maybe? She wondered if she could get the records. “Tell me everything you know, Craig.” Craig explained to Connie that, when he was seven years old, his father sent his mother to some hospital in Virginia. He was pretty sure it was in Williamsburg. She was gone for over two months. Before his mother went there, she used to get fits, would throw things, try to hurt him and his older brother. Sometimes his mother would run away, be gone for days, and no one would know where she was. Oddly, when

she wasn’t having these fits, she was cheerful, played outside with him and his brother. She packed their school lunches, read them stories. He remembered that, before his mother went way, his father had taken her to a lot of doctors, but none of them had ever helped her. These explosive episodes, or seizures, or whatever they were, never went away. She’d take off, sometimes during the night, and be gone for days. “Do you remember what year it was that your mother went to Williamsburg?” “Sure do. I was seven, so that would be 1966.” “What was she like when she got home from this hospital or asylum?” “Her eyes were black and swollen, stayed that way for a long time. She didn’t throw stuff no more, never ran away again. In fact, she never left the house. No more spells. She never hit us again, never touched us at all. Kept the house neat and clean, still packed our lunches. No more playing or laughing, no hugs or kisses, no more stories.” “That must have been so painful and confusing for you.” “Worst part is it was all my fault.” “Your fault?” “I spilled paint on the carpet that day. When she saw it, she came chasing after me and my brother with a bat. The neighbors saw her and called the police. The cops were there when my dad got home from work. They took her down to the station. Told my dad if he didn’t do something about her, they’d be coming back to take me and my brother away. Dad went with her in the police car. We stayed with the neighbors ’til he came back the next day. We didn’t see her again for a long time. Must have been at least two months ’cause that happened in the summer, and when she came home, we were already back in school.” “I certainly understand how you feel, Craig, but we are talking about a two to three day hospital stay. You can stay with her the entire time, if you like.”

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“Okay, but I don’t want her seeing a bunch of doctors. Just you. And after three days, I’m taking her home, tests finished or not.” “Alright. That’s the plan. And I’ll see what I can do to get those old records.”

“Just send those nurses to the house, Doc. I’ll get some time off from work and stay with her as much as I can.” “I’ll take care of it today, Craig.” “Wait, Doc. Will you come to see her at the house?”

*

*

*

It was 7:00 a.m. on the third day of Mary Sullivan’s hospital stay. Connie stood at the nursing station, reading the results she had expected. Mrs. Sullivan had lung cancer, inoperable and terminal. Connie had delivered painful news dozens of times, but it never got any easier. Connie walked into Mrs. Sullivan’s room. She pushed aside the circular curtain surrounding her bed and saw Craig at his mother’s side, stroking her forehead. His sleeping bag lay at the foot of her bed. Mrs. Sullivan was unaware that Connie had entered the room. “How’s she doing, Doc?” Before Connie could answer, Mary spoke. “I want to go home now.” “Mary, I want to go over the results with you and your son.” Craig got up and stood directly in front of Connie. “Doc, just let me take her home. You give me the results, and I’ll tell her, okay?” Connie motioned toward the corridor, and Craig followed her. There she explained to him that his mother had lung cancer and it was inoperable. She could be comfortably cared for at home by hospice nurses. Craig accepted the news better than she had anticipated. He wiped his tears on his shirt sleeve. They returned to Mary’s room and found her dressed and seated on the chair beside the bed. Her things were packed. “Are you feeling any better today, Mary?” “A little. I want a cigarette. I want to go home.” “Do you have any questions?” “No, I want to go home. No more tests. Craig will take good care of me.” Craig helped his mother up from the chair.

The unwanted behavior was removed, but gone also were her creativity, her ability to express her feelings.

Connie hadn’t made a house call in more than five years. “Sure. I’ll be there later this week, after the nurses have set up everything at home.” Connie returned to her office to begin seeing her morning patients. She saw sitting on her desk the records from Eastern State Hospital in Williamsburg, Virginia. The pages were microfilm copies and difficult to read, but she deciphered that Mary Sullivan had undergone electroshock treatments, which apparently had not helped her. The doctors there had also given her Thorazine and other drugs, all of which caused her condition to worsen. After sifting through more than fifty pages, she found an operative report. The top line read Lobotomy, Transorbital. She remembered reading in medical school about the Transorbital Lobotomy, where the frontal lobe of the brain is not actually removed but is disconnected from the rest of the brain. Mary didn’t have any surgical scars on her scalp. Connie got out her Neurology textbook. She read about the Ice Pick Lobotomy, where an instrument very much like an ice pick was used to pierce the eye sockets and disconnect the fibers connecting the frontal lobe to the rest of the brain. It virtually left no scars. Mary’s lobotomy was done two days before she left Eastern State Hospital. Connie had never known anyone who had had a frontal lobotomy. Connie knew she had to tell Craig. She hated to add to his burden, but he was entitled to know that when his mother left that hospital in 1966, the seat of all of her most human functions had been taken from her. She was no longer able to have feelings of love or empathy. The unwanted behavior was removed, but gone also were her creativity, her ability to express her feelings. Her son had a right to know that his mother’s inability to express her love for him was not his fault.

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During her lunch break Connie called Craig and told him that she needed to talk to him about the records she received. “What did you find out?” “We’ll talk about it when I come to the house. You still have a lot to do to make the house comfortable for your mom.” “The nurse at the hospital told me that Mom can’t smoke in her room because of the oxygen you prescribed for her. So I called and ordered her a wheelchair. That way I can wheel her into the living room to smoke. That was my idea.” “Great. Sounds like you have everything under control.” “I’m trying, Doc. I did the laundry and got the room cleaned up. I promised her I’d take care of her.” “You’re doing a great job. I’ll see you Friday around noon.” The Sullivan’s lived close to Connie’s office, so she went by at lunchtime. It was a warm May afternoon, and Craig was mowing the front lawn when she pulled up to their driveway. A pink dogwood tree in full and vibrant bloom stood in the center of their front yard. She reached into the back seat of her Volkswagen Beetle and got out her black bag. The strap and the metal clasp were worn, and the creases in the leather were caked with dust. “I didn’t know doctors still carried those little bags,” Craig yelled above the roar of the lawnmower. “We still need them sometimes. How’s your mom doing?” “Good as can be, I guess. Still has that awful cough and she won’t eat, but she’s still smoking those Marlboro’s. Go on in. She’s in the living room smokin’ one now. I’ll be done with this lawn in a few minutes.” Connie picked up a newspaper going up the porch steps and nearly fell as she tripped over a cat on her way into the house. She caught herself on the arm of a chair by the doorway and lost her grip on the black bag, which spewed its entire contents across the floor. Connie gathered up her stethoscope and other equipment. She went to put them all back in the bag, but the Sullivan’s chubby calico cat had managed to stuff herself into it. Connie laughed and looked over at Mary. Mary sitting expressionless, crumpled her cigarette into a green glass ashtray. “Since you’re done with your cigarette, Mary, I’ll wheel you into your room.” The house was messy, the carpet stained, the furniture full of cigarette burns.

Mary Sullivan pointed ahead and told Connie, “My room is that way.” Inside the bedroom there was a double bed with clean white sheets and a pink chenille bedspread. There were two pillows propped up against the headboard. The room smelled of Lysol, and the hardwood floor was damp. A wet mop rested against the closet door. There were clean towels and wash cloths on a chair beside the bed. The oxygen was turned off, and the tubing was neatly fastened on the bedpost. On the nightstand was a pitcher of water, a clean glass, a Bible, and rosary beads. Above the bed hung a picture of Saint Patrick.

“So you’re saying they fixed her so she wouldn’t have to stay in the hospital forever, but what they did meant she couldn’t have fun, couldn’t love nobody anymore?”

“Craig is taking good care of me,” Mary said, as Connie helped her into bed. “I can see that. Your room is so nice and clean.” “He won’t let me smoke in here. Says the room will blow up.” “He’s right, Mary. You mustn’t smoke in here.” Mary started a spasm of coughing and wheezing, and Connie turned on the oxygen and placed the tubing under her nose. She heard Craig come in and walked back into the living room. “Is she doing okay, Doc?” “She’s okay for right now. But you know…she’s very sick.” “I know. She knows too. I got the whole week off work, so I’ll be here with her.” “That’s great. While I’m here, let’s talk about the old records I received.” Connie explained to Craig, using only the necessary details, what had happened to his mother in Williamsburg in 1966. “So you’re saying they fixed her so she wouldn’t have to 13

stay in the hospital forever, but what they did meant she couldn’t have fun, couldn’t love nobody anymore?” Craig bit his lower lip, clenched both fists, and sat down with such a force that the chair hit the wall. “Let’s say that your mom couldn’t show people that she loved them. Her brain didn’t work right, but that doesn’t mean she didn’t love you anymore.”

Suddenly, and certainly unexpectedly, Mary’s breathing slowed, and her breaths became deeper and less labored. Her color improved. She then did something that stunned Connie. Mary reached for Craig’s face and turned it toward her. She began to cry and laugh and kiss his face all over, starting with his forehead, then his cheeks, then his chin. Then she put her arms around his neck and hugged him tightly. “Oh, God. I love you so much, Craig. I do. I really do. Don’t be scared. I’m here.” Mother and son held on to each other and rocked. Connie marveled at the triumphant scene before her. Neither Craig nor his mother noticed when she left the room and let herself out of the house. Later that evening, Mary Sullivan died, with Craig and the hospice nurse at her side.

But up close, from where she was sitting in the front row, it felt like a miracle, an unexplained transformation, for Mary and Craig, and for her.

*
They both started as they heard a crashing sound coming from Mary’s room. They rushed to her. She had knocked over the water pitcher and the glass. She had reached for her rosary beads, and they were dangling from her left wrist. She was murmuring a prayer between her labored breaths. “Hail Mary, full of grace…” “Mom, Mom, you okay?” Craig was crying, leaning over his mother, his face no more than two inches from hers. She didn’t answer. Her eyes were closed, and she kept murmuring her prayer. “Hail Mary, full of grace…” Craig shoved the towels and washcloths off the chair and sat close to the bedside. He rested his head next to his mother’s on the pillow. During breaks in his muffled sobs he told her, “I love you, Mom. I won’t leave you. I’m here. Don’t be scared.” Connie stood at the foot of the bed. Mary Sullivan’s breathing became increasingly labored, but she remained calm, her hands across her chest, her rosary beads tangled around her fingers. Craig stroked her forehead. “I love you, Mom. Don’t be scared. I’m here.”

*

*

Two weeks later, Connie sat in her office, finishing her paperwork, enjoying the fragrance of the dogwood flowers that Craig had sent her. Her black bag, with its refurbished leather giving it a new look, rested in its new position on the edge of her desk. It was lunchtime, and she felt energized after sharing a light lunch with her staff. She hadn’t had a migraine in over a week. Since Mary Sullivan’s death, Connie had considered many possible explanations for her patient’s sudden ability to express her love for her son. Perhaps scar tissue or adhesions had formed a bridge for the nerve fibers to somehow link with the severed frontal lobe. At least, that’s what it looked like from a distance. But up close, from where she was sitting in the front row, it felt like a miracle, an unexplained transformation, for Mary and Craig, and for her.t A longer version of The House Call was published in the online journal The Broadkill Review, July 2010.

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POETRY

Jim Pascual Agustin

The Waiting Room
Plastic flowers hold the room together With their fabricated frailty. Standing in a glass vase half filled With water the stems never need, They tell us that waiting could be eternal. If she were forty years younger She would have touched them, Caressed them, pretended They were real. She would have held them As if they were part of her Ever-changing garden. Instead she stares at them blankly, Hardly batting an eyelid. Such intricate petals That will outlast us both. She is sitting in another time, Somewhere else. We are waiting for test results That shouldn’t really matter. But they do. Something invisible Is rendering us silent and still. Mother, I want to tell you that I am here. I want to tell you that I am still here.

Previously published in the author’s book of poems, Alien to Any Skin, University of Santo Tomas Publishing House, Manila, 2013.

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CREATIVE NONFICTION

Visiting with Alzheimer’s
William D. Perry

I

’m on instant replay. There has never been a time like this before. It’s a synthetic kind of time. I’ve left the rush of automated, electronic Xanadu. Windgate Village is my new reality, my never-ending retreat where I’m sequestered with a leftover biography and something called Alzheimer’s. Through a window wall I, Evan Morrisson, study the green solidarity of hills and trees along the distant parkway. Called a day room or social center in an ordinary assistedliving facility, here at Windgate it’s the community room with the pretense and appointments of a nineteenth century baronial lodge. I pay $6300 monthly to coexist with others in a lifestyle commensurate with simple dignity until my money runs out when I will be shifted to something called Medicaid. At 66, I ponder the future and even tomorrow. Others pass and nod, some on canes, others using walkers or in wheelchairs. Collectively, we’re the bold combatants of yesterday, and we’ve dropped out of the world of champions, conquerors, and winners. No one here tries anymore to be unprecedented. I drift over to the pillar, one of the more elaborate and largest supporting columns where three friends hang out. The Society of the Pillar, we call it. Conrad, once a physicist at Princeton, a dour man; Hastings, a former jolly M.D.; puffy, friendly Hoffman, ailing former FBI man and myself, once editor and critic. We cheer each other, then speak of the more outrageous headlines before I stumble on to other faces, other scenarios. An attendant scurries by and asks if I need anything, and I tell him only miracles. My disease “blams” me at times,

yet there are hours and even days when I’m fully aware, coherent, and normal. But I know it’ll return in whole or part, and I fearfully await another strike. They tell me protein deposits in the cerebral cortex can vary, and this is what apparently causes part of the damning enigma. I don’t know how many here are happy. They never say, and I never ask. Theoretically, I suppose it’s possible to be content in a place like Windgate Village with its creature comforts. Amazingly, I remember that Kant said, “Real contentment consists of the consciousness of freedom.” Are Buddhist monks happy? Or prison guards? I’m aware that a Roper poll concluded that money can’t buy the sort of happiness most Americans are looking for. I don’t know if it’s possible for me to be content anymore or not. I try to remember the concept of happiness but its overtones and essence escape me. The present chugs by like an overloaded beer truck with bad valves. I’m momentarily exuberant as I clearly recall something Samuel Johnson said: “The present hour alone is man’s.” I’m proud of myself. Sometimes everything is clear and laid out. Managing emptiness is madness multiplied and I fumble, my distress unheard by an online, automated world, for now there’s no place for me in a sophisticated go-go society. I only see my life as a short story told in one incomplete, complex sentence, and I don’t know if I’m the protagonist or narrator. Hasting waves me to the Pillar, and I drift over to the enclave where heated dialogue flies: Black holes destroying information as they collapse and disappear, receding galaxies moving too swiftly, fears of the future, global warming

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and anxiety crowd the hour as we all agree that anxiety is what’s left when personal terror is gone. There is fear and uncertainty even in Windgate about the terrible dangers awash on an overcrowded planet. Today Elaine appears, poses briefly, then vanishes. My first and only wife who refused to bear children fearing they would alter her wasp waist. A lovely, fickle butterfly whose reflex was flirting, ricocheted in and out for two years before she ran off with a long-haired poet who mimicked Allen Ginsberg. “You’ve got a damn button-down mind, Evan—come and join the cabaret crowd,” were her final words as she fluttered away with her Yankee Baudelaire. Why am I able to recall this final denouement? Mornings are best here when the distant hills are symphonies of orange and purple. They say most people begin the day free of negative and imperfect thoughts. Today I inadvertently bump into Norman Schlepp who’s obsessed with death in its varied configurations, and who everyone tries to avoid. I turn in a feinting action, but he collars me in an iron grip. “Morrison, let me tell you about death this morning. He comes dressed in tuxedo and with plaited hair—” “That’s good of him,” I interrupt. “Wait! Are you ready, Morrisson? He shows no quarter and don’t give odds.” “I think I can take him two falls out of three,” I say. “Ha,” he cries. “But he’s half immortal, and you are only human—it’s plain to see you’re doomed!” “Warn him that I’ve a band of armed angels on call.” “You know what Puck said, Morrisson?” “Spare me.” “Death doesn’t negotiate, Morrisson, and he has the cunning of a hedge fund manager.” Luckily an attendant, seeing my plight, leads him away. Soon they will have to do something with him before death gets the upper hand.

I think of Windgate as my final stopover. Suddenly a field of grayness and mindless blankness. I wander aimlessly until an attendant, noticing, takes me to my room. Oblivion unwinds in my head. How am I to fight powerlessness? I want to shout my anger, delineate my rage, and do battle with an oppressor I can’t see. My mind is packed tight in excelsior as everything multiplies and divides. If I’m going mad, how mad must I get before attaining lunacy? Thoughts form but they’re empty, meaningless, absurd. Shafts of brilliance streak but where are they coming from, the heavens, my subconscious, or beyond? Electric coils in my head become dancing demons wearing hideous masks and singing in twelve tone dissonance. Can I hang in until coherent consciousness returns? I lie flat in my bed praying for comforts, ameliorations, compensations, and mental revival, but there’s nothing but voiding grayness, chromosome gray, a paranoiac nightmare in psychedelic colors. This world of nothingness is strangling me, and I have no weapons but a stricken cerebellum offering only a Coney Island of madness. I try to think: the names of kings, countries, seas, song titles, even colors. Now my head is a giant sepulcher, I’m full of rare jewels that glitter with icy stabs. This nothingness changes, becomes visible, a sleek panther circling me concentrically, then ready to pounce. Suddenly, a knock at the door and an attendant appears, who, seeing I’m in trouble, calls nurse North, who I was told administered a strong sedative, and then I sleep all the day down. I try to make each day different hoping that something extraordinary will surface. But on the good days I’m left with only the pandering of flawed replays of memories—sensuous hours that were. Yet good days blur into monotonous intervals of neither days nor nights of ennui; hopes and truths that can’t be played out. Random speakers play ricky tick music with lots of strings and subdued brass and sobbing woodwinds. Sometimes I hear a familiar pop tune from long ago, and I try to place the year when it was the rage. Yesterday I recognized “Harbor Lights” and I even knew it was good old Guy Lombardo. As they used to say, “The sweetest music this side of heaven.” Funny how everybody, all generations liked the same music. As memory fumbles, I do mental gymnastics constantly testing myself, my brain, for further decay. I try to list all the good books I’ve read or reviewed for newspapers and periodicals. There are times when I can click them right off and other times there’s nothing but a void. I re-

17

member I first read Tolstoy’s War and Peace while recovering from wounds in a military hospital. Son of the Morning Star by Evan Connell, telling how Custer sacrificed the 7th Calvary for immortality, stays with me for now. And Moby Dick, but I forget whether Moby was the whale or the first mate. It’s strange when, in my good intervals, memories override me. Imperfect memories of girls, other loves in my once happy life, overwhelm. A dichotomy of fates control me, one giving, one taking. They intrude on these long, quiet afternoons, a consistent and constant playback. I talked to the sometimes visiting psychologist, and he counseled that it might be a form of melancholia due to a past and intensive emotional freeze that surfaces to safeguard against unbalanced equilibrium and insanity. I often dream I don’t know myself, but dreams are not wishes as Freud preached, but harmless, the therapist said. An attendant scurries up. “Nurse North wants to take your temperature and pulse, Mr. Morrisson.” “I’ll be there,” I say simply, annoyed at the interruption. The present presses against me like wet flannel and there’s no functioning sky. It wasn’t Evangeline. It was Tana, and she was 40 years ago, and only angels and alchemists can manipulate time and space. Tana. My time, like my memory, is all mixed up, and I must let her go, feeling ice caps surrounding me. Shapely nurse Carrie North knocks before coming into my room. She’s into alternative medicine, good-looking, and sometimes we talk and tell. “Yesterday was not so good for you, but how’s today?” she asks, looking attentive and competent. “So far, so good,” I say cheerlessly. “Up, up, Mr. Morrisson. Smile for me; raise your spirits!” “I hear Sloan died last night,” I counter. “Yes, a pathology of causes. He was 88.” “That’s the number of keys on a piano,” I remember, and it cheers me. Even on good days I get things mixed up. “Records we have indicate all your blood work is ok and you’re in the low numbers. You’re doing alright physically, Mr. Morrisson.”

“Excepting you know what.” “When one focuses on their illness and symptoms, the condition will perpetuate,” she counsels. I imagine nurse North moving multitudes of ailing hulks like myself into blossoming, apple-cheeked full figures again. “Is that Eastern mumbo jumbo?”

A dichotomy of fates control me, one giving, one taking.

“Consciousness makes matter, Mr. Morrisson.” “Hey, I thought it was the other way around.” “No! Ever hear of psychoneuroimmunology?” she asks. “Hardly. Why are words getting bigger these days?” “Shush! Medical science has discovered the brain is continuously sending messages to every organ, every tissue in the body,” she expounds, seeming happy with her revelation. “Projecting this out, can I then take off years, can I be callow and youthfully irreverent and impulsive again and even remember things?” She ignores me. “Start with thinking positive.” “When I’m clear and ok, but how about the memories that inundate?” “Turn your back. Don’t paint yourself into a corner.” “I—I’m afraid of going blank again. I never know.” “See yourself as living and being in a perfect body.” “Is this some new radical therapy?” I query. “You are what you see, Mr. Morrisson. Always.” “But to a literal mind, it’s black magic.” “Nonsense, it’s applied psychoneuroimmunology,” she instructs.

18

“But when will I bomb out again, I mean completely?” I query. “I don’t know. But you’re doing well physically. Better than most your age.” “There’s no help, no cure?” “Honestly, I don’t know.” “How about this carbidopa and levodopa I’ve heard something about?” I ask. “That’s for Parkinson’s disease. While it works in the brain, it’s not for Alzheimer’s.” “Then I’m on my own?” “Along with the rest of us, Mr. Morrisson. Remember, you are what you see. See a perfect body. But for now, take a deep breath, hold it and exhale,” she advises. Afterwards I stare at her, wondering what she’ll invoke next. “Feel better?” “Well—” “Come on, admit it!” she demands. “Just do it for yourself. Do it six or eight times a day and in a series of three.” With that she’s off, darting to other trouble areas. Today my head is opened and I have a glass roof over my brain. Sounds that reach me are short wave sounds, and I walk in the wrack and ruin of the world and feel nothing but indifference. But I think Paula Bennet comes to visit me this afternoon. At least she says she is Paula Bennet. It seems to be the mid ’70s when we met and thought we were made for each other. It was a misstep but we had fun far from the schoolyard swings. She looks trim and smart and must be fifty-something. But I’m not certain it’s she. “Don’t tell me you hardly know me or I’ll bite your head off.” She smiles disarmingly, sitting across from me at the outside patio table. I try. “That rainy night on the ferryboat and there was a band upstairs when you sang ‘How High the Moon.’ We met there.” She’s annoyed. “Evan, I’ve never been on a ferryboat, and I don’t sing. We met at that tea dance in the Custer Hotel in Denver!” Her fingers drum on the table.

“I thought it was Des Moines,” I manage, confused again. “Evan, are you losing it?” “Sometimes it’s a struggle.” Above black birds fly from the west, wheel, and then soar north.

Sounds that reach me are short wave sounds, and I walk in the wrack and ruin of the world and feel nothing but indifference.

“Evan, do you really remember me?” she challenges. “You’re the girl in the Calvin Klein ad?” I say, half joking. “Evan, I’m Paula Bennet Harris but running free now. Hey, remember, you wore my stocking around your neck for luck.” I look away. “The years are against me, I guess. Did we go to Europe on a dime once?” “No, Evan. We were stateside and danced on the ceiling, and we raced with the moon.” “I suppose,” I say, thinking I’m way off base. “You don’t know me then?” “Sure, you’re Paula.” “Because I told you, Evan.” “We were at Cape Cod one weekend,” I attempt. “That was somebody else, dear,” she says acidly. We talk a little about this and that; she kisses my cheek and flutters away. Paula Bennet. I try to arrange my battered memory and sort her out. Some days it’s easy, other days impossible.

19

On good days I worry about my stay here. My little money will not last forever. There are the days when I try to pinpoint events, incidents, and romantic situations with time and the calendar. Figures and faces pop up but they fade away before I can pull them together into meaningful sequences. Words, names explode like flash cards then disappear: Buffalo nickels, yellow straw hats, hoola hoops and Buffalo Bill. It’s like some benevolent God in a Mark Twain lecture suit announcing bits of America. Seabiscuit, Strangler Lewis, Dave Bruebeck, Carrie Nation, the Wabash Cannon Ball, Robert Frost, White Cloverine Salve, cherry bombs, the Chicago Fire, Fruit Loops and Fels Naptha.

kindness, and I wondered if she might not be some lesser saint sent by the Divinities as an auxiliary to mankind. She refused my offer of marriage, saying I was too secular, and that she’d pray for me. I wonder if she ever did? My small world, unincorporated, has become a madhouse filled with the bric-a-brack of everyday trash. Will they ever find a super drug that works its wonders in the brain’s rathskeller? It’s a fuzzy Sunday afternoon, and I’m trying to see through it. A visitor comes, claiming to be an old friend. We sit in the half-filled community room, and I struggle to make his face, his words, his person into a presence I can relate to. Nothing. I’m memory blind and helpless. I look at him, stare at his checkered necktie, listen to his words. I try to make dialogue but it’s a jumble. In the epicenter of my void there’s a quiet pandemonium in crescendo. The visitor rises, puts forth a hand and we shake. He disappears and, as the falling sun makes a flare on the paneled wall, I ponder what part of my life he is from. It must be days later when I talk with others, as Conrad cautions the Milky Way and the Andromeda Galaxy will collide in two billion years. It’s more than I can take, and I leave for a quiet walk away from the buzz and controlled hysteria. Often I stop along the way to shake hands with others, and it seems to cheer them. Trappists say, I seem to recall, “Savor the solitude.” At Windgate there’s both a quasi-solitude and what’s left of the contemporary spin. On good days I feel a little like what I think Jack Kerouac experienced on that mountain where he spent his summer as a fire watcher. I’ve come to make the same rounds every day when I’m clear and ambulatory. It’s an insipid kind of therapy, but my options are limited these days. They tell me I had a well dressed visitor recently, upset and puzzled that I seemed not to remember him. But another day, and everything is suddenly right. I remember my resent visitor—Walter Cartwright who used to work with me. The past clears somewhat, and I see jagged scenarios forming, and I try to fit pieces together in sequence. Yet in the afternoon it is gone, all of it, and I’m left with an empty stage. But the replay mechanism, erratic and illusive as it is, impossible to control and rely on, works part-time, and in my dropout world of leftover fragments, there’s something akin to what might be hope, and I dare myself finally, to rejoice over what is rather than what is not.t

My small world, unincorporated, has become a madhouse filled with the bric-a-brack of everyday trash.

A kaleidoscope of pieces that I can’t put together: King Kong, Chang and Eng, Lucky Lindy, the Cumberland Gap, Crazy Water Crystals and merry Oldsmobiles. Times Square, Ringling Brothers, Super Suds, Mutt and Jeff, Grape Nut Flakes and Ma Barker. An endless procession. Does an inversion of Alzheimer’s do this or is the cerebral cortex playing show and tell? I go on because everyone goes on. It’s like troops marching in step to do battle. There’s no place to go but onward into a future that science has carved for us. On an afternoon that feels like early fall, I quit the outside and wander to the small library that Windgate offers. Once there, pictures of Teena French appear. I think it’s Teena— or maybe it was that girl who sang and played piano at Top of the Mark. Didn’t she wear extremely tight dresses and carry cocaine in a locket worn about her neck? A perfect neck. Or was that Jackie? But Anne was the one who wore elegance so carelessly. Anne something. She had an embossed kind of class, but confessed that I wasn’t her type and we parted lukewarm friends. Sue comes, a kind of allAmerican girl who could recite Lincoln’s Gettysburg Address or was it the preamble to something else? Everything seems clear today until I start thinking about old loves. But the one doing penance? She’d pledged to donate both eyes to the Institute of the Blind for her sins, but every time we met she’d pushed the date forward. I think it was Carla something. Mary Margaret was angelic with an aura of

20

POETRY

Dr. Kathryn Jacobs

Seventeen
You were so glad to see me, bursting in with that ferocious hug of yours, as if you knew already how much love you’d miss, and so had hugs to spare. If you’d just been a few years older, I’d have seen you lift another woman off her feet, and kiss her first, instead of me. And then at least there’d still be someone left to hold: a piece of you remaining. If there’d even been a girl friend, best friend—almost anything but what you had: just “mom.” But as it was— well, you were seventeen, and by next spring you wouldn’t be here, and that welcome grin deserved more than a mom, and promises.

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PERSONAL ESSAY

After Eric
Gary doherty

Y

ou can’t really think since the accident. You can’t fathom how you will be able to focus again since your little boy had an epileptic seizure in the bathtub and drowned on a warm February Sunday morning in 1998. You only exist in this rocking chair. It isn’t minutes after his death that you realize how your life changes. Your 24/7 shift as the parent of a disabled child is over. You don’t have to make appointments with speech therapists or make individual academic program plans with special educators. You can disappear at a coffee shop and no longer meet with professionals who weren’t doing much for Eric anyway. Sure, you still have two jobs, a house, debts, a wife, a daughter, and a not-sowell-trained dog named Pickles, but now you can watch the Bears without interruptions. You still have tears in your eyes. You wish your family could sit on the couch and reread Goodnight Moon for the 1,000th time and follow that mouse from page to page.

Good people drop warm dinners off at our house a week after my little boy dies. You know their love and good intentions are baked into these tuna casseroles. The important issue to be worked out is how they’ll get that casserole dish back. You listen, but you don’t hear, as your wife develops a plan to get the dish back to the friend clean as a whistle and very soon. You know those cheerful faces didn’t know your son. They knew of him and his disabilities, but they always drew a line in the sand; enough space to keep a safe distance from his drool. You find yourself reading the lyrics to “Stairway to Heaven.” Priests do this kind of thing all the time; homilies welcoming souls into eternity. Since our priest never met Eric, we provide him with words so some of the little boy’s personality can be squeezed into the Mass. So anyway, weeks pass. My wife cries herself to sleep around me, around friends, and family. She finds strength to clean, to launder, to reheat leftovers. She is a profound weeper. When you live in the house where he died, every square inch holds memories of laughs and cries and bellows and frustrations.

Out the window, healthy children in a minivan stare at the house where a child drowned in the bathtub; you feel as if you live in a ghost house in New Orleans, something mysterious and creepy. Mail arrives with cards from faraway folks with checks for $l0.00. People send poems about losing their favorite people. You hear the knock on the door and you remain stationary in the rocking chair. It’s someone wanting to retrieve their casserole dish. You consider a return to work. Your daughter returns to school and has daydreams of her brother freezing under the ground of the cemetery in Edgar County. What do you say to that? You say nothing and you hug your only living child. Later you tell her you love her so much. You don’t know how your wife could have written lesson plans for substitute teachers the night of his death—but she did. You realize your own limitations; you can’t get out of the chair because there isn’t anything to get up for anymore. You know you’ll be no good at your social work job for a long time. You find a thirty-minute surprise vacation from grief in Seinfeld reruns.

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Eric’s short bus comes by one morning after his death and beeps just like it did when it was pick-up time for Sunnyside School. The beep reminds you Eric is gone. You are a mess of tears and pain. Your wife is even worse. Your daughter splits her time with both of you, trying to help you cry less. The bus driver delivers Eric’s book bag to the weepy house. You shower. The pulsation feels good. You look down at Eric’s death spot at your feet. How can you possibly do this every day? Every time you close your eyes, you see your son under water. You picture yourself with this hole in your chest. You feel as though you have unzipped it and removed your heart, the part of you that makes you sweet and kind. You keep the door to his room closed. You don’t want to change the sheets. You don’t want to wash his clothes. You have this awful fear you will forget how he smelled. You want his smell in your shirt pocket so you can have him close to your heart. You sit at the Daily Grind coffee shop and write pages and pages of memories with the help of caffeine. Tears fall on the pages. You wonder how long your heart will feel like it’s stuck in neutral. You now belong to the most unblessed club there could ever be—parents who have lost a child. There is news of some child’s life ending in an awful way almost every day in the Chicago Sun Times. You write letters to people you don’t know offering prayers to new club members. You can’t find words. You can’t find anything.

You join organized grief groups. You can’t deal with a woman who struggles with her mom’s death—she had the chance to say good-bye. You had to pull a lifeless body out of bathtub water and run to the hospital wondering, if he was resuscitated, might he be even more severely disabled. He has been bandaged by disabilities and all kinds of interesting pains. You can’t keep telling this story. You feel like a failure every time you tell it. You take your wife to a more specialized Compassionate Friends support group. You help her as she gets ill on the way home, after hearing for ninety minutes of the torture of life without certain children. You know time doesn’t really heal. Your folks lost your sister twenty-five years ago. Your mom tears up every time she hears Diane’s name. It was pretty awful to lose a sibling, a best friend to suicide, a dad, but when you lose a six-year-old boy like Eric, you lose your zeal. You feel horrible all of the time. You see possibilities of his sparkle in others and you cry. You cry when you drive, when you sit at your desk. You cry when you take a walk and, if you’re like me, you find a place inside your soul and you hide. You know already that the worst thing that could happen has happened. You discovered a long time ago that you weren’t one to holler or scream. You have a hard time getting angry. You get mad at God. You avoid God. You wonder why He twisted your life to shreds. You get mad at people who tell you he is in a better place. Hawaii is a better place than Monticello, Illinois. You get mad at people who know Eric died but never mention it. You

can’t imagine how it can be that hard to say, “I’m sorry about your son, man.” Well, it must be hard. You run into people who don’t know. You have to tell the whole story and watch their eyes change from surprise to pity and crushed spirits. They will say prayers. Kind. After a couple weeks, people start expecting you to begin bouncing back and being who you used to be. Your gut tells you that you are burnt out from talking about it. You feel like getting a tattoo on your hand so you never forget him. You find yourself mired so deep in your personal malaise that you can only help your wife and daughter so much. A day is cool until you find out your compact disc carousel does not work because Eric jammed a tiny pair of scissors into the machine. You find out later, from your daughter’s confession, that she stuck the scissors in there. She is always forgiven. You want nothing to do with holidays. Holidays throw around prospects of joy and tradition that you now hate. You go through the motions for your twelveyear-old. You wish she would pick the lifeless Charlie Brown Xmas tree. You realize how deep your love is for your living child. You tell her maybe twice a day that you love her. You get her out of school band over her mother’s objections and feel good about that. You think you might be better off dead. You’ve discussed this with your wife and, she too, wants to die, to be with Eric, but we don’t die because of our living child.

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Casseroles stop coming. The plants that have been gifted are wilting because no one reads the tiny, plastic instruction cards. February turns to March and then April. You find reasons to stay out of the house. 805 Lincoln Drive is like entering a morgue. Your hand doesn’t want to turn that doorknob. You try to put yourself into your work. Co-workers are kind. They volunteer to give their vacation days. You say, “No, but thanks.” You bring some of the

wilted plants to the office. Living gifts. It was so kind of people to give them. People are good. If there could be any good outcome from this death, you hope your deceased sister might complete an uncomplicated heavenly adoption of Eric. Her unfulfilled dream was to have a baby. You stand at the foot of a tombstone knowing your six-year-old is below in a box with his favorite toys. You never thought you’d ever stand on this piece

of earth. You share pieces of your shattered soul with him. Memories. You can only do this so long before you cry out loud. You walk away from him. You could never walk away from him when he was alive. Pickles the dog, circles the space near my feet and looks into my moist eyes as if to say, “Hey, I’m having a problem with this too.”t

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KALEIDOSCOPE Magazine has a creative focus that examines the experience of disability through literature and the fine arts. Unique to the field of disability studies, this award-winning publication expresses the diversity of the disability experience from a variety of perspectives including: individuals, families, friends, caregivers, educators and healthcare professionals, among others. The material chosen for KALEIDOSCOPE challenges and overcomes stereotypical, patronizing, and sentimental attitudes about disability through nonfiction, fiction, poetry, and visual art. Although the content focuses on aspects related to disability, writers with and without disabilities are welcome to submit their work.

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ALEIDOSCOPE
Gail Willmott, Editor-in-Chief

· Double spaced, typewritten

· 5,000 word maximum

· Electronic submissions preferred

Email submissions accepted at kaleidoscope@udsakron.org or online at kaleidoscopeonline.org.

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POETRY

Alexander Tan Jr., M.D.

Phantom Limb
It still twinges on cold nights, and itches from imagined insect bites. Sometimes, I expect to look and see it still attached to me. I still pull blankets over it at night, and see its outline beneath the cotton sheets. I still feel the blood coursing through nonexistent capillaries. I scratch to find out where it really is. My nails find nothing to scrabble at. I am still counting the hours of separation: How long since amputation? It left while I was asleep. I am left with echoes of its departure. It has preceded me to the grave. I am dying by installments.

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FICTION

Jack’s House
Paul Alan Fahey

T

he old Ford pickup navigated the potholes in the two-lane road. Patches of mid-afternoon sunlight streaked through the eucalyptus and glanced off the windshield. The driver, a silver-haired man in his late fifties with a slim build, pulled the truck over to the shoulder and parked. The woman beside him, a Princess Grace look alike if she’d lived into her sixties, waited for him to walk around and open her door. Without talking, they emptied the truck bed of shovels, trowels, a rake, and a small flat of plants, and then they walked to an area cleared of brush, a few feet from the roadside. The woman went to work almost immediately, digging her trowel into the hard, sandy soil. The man waited before beginning, perhaps assessing the situation as a surveyor might when evaluating a proposed construction site. When she motioned for him to get to work, he told her it was all in the planning. “Rome wasn’t built in a day, Laurel.” “I can’t abide clichés, Tom,” she said, and then smiled. “Surely you can do better.”

“I’ll try.” He laughed, shook his head, then grabbed a shovel and plunged it down into the earth, bringing up a mound of dirt mixed with sand. She continued to dig, dipping her trowel into the soil, stopping now and then to brush dirt from her sweatshirt and the tops of her gloves. “I hate getting messy.” “You need to get dirty here, Laurel. Touch the earth, sift it through your fingers. Connect your senses to what you’re doing.” He set his shovel aside and began pulling weeds around the hole he’d dug. “We want this to be a fitting memorial.” “For Samuel,” she said. “Yes.” She paused and watched him work the soil, mixing in the potting material, spreading it around the seedlings. He passed her the flat of plants, motioned for her to do the same. Laurel grabbed two plants and stuck them in the ground.

“Whoa. They’re too close,” he said. “They need room to grow and develop. Take time and do this right, okay?” She sighed and moved the young plants a few inches apart. She dipped her glove into the compost and tossed a handful around her charges, and then filled in the hole with surrounding soil. “I’m done.” “Not done,” he said. “Far from it.” “What do you mean?” She stood and brushed the dirt off her jeans. “Remember, Laurel, we want this to be the best it can be.” “Of course, Tom, I know. Maybe I’m just tired.” “Maybe.” When they’d worked for over an hour, she walked back to the truck and leaned against the hood. “Nice but…everything looks so small from here.” He walked up to her and then glanced back at the site. “Yep. It needs work. A lot more, but it’s a start.”

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She reached up and touched his cheek. “You still have those Paul Newman eyes. So blue I get lost in them.” “Laurel, don’t change the subject. We’re talking about the memorial.” “I know,” she said, a bit petulantly. “I understand what we’re doing.” “Good,” he said, “but you’re absolutely right. It needs something, but what?” She put her arm around his waist, rested her head against his shoulder. “Whatever it is, Tom, I can’t see it.” “Of course you can’t because it’s not there,” he said, and laughed. She tapped him playfully on the chest. “You exasperate me sometimes.” “Why?” “You keep at things. You never give up, never stop” she said. “We should be going, don’t you think?” He glanced at his watch. “Give me a second,” then he turned, walked down the road, and returned. “Drivers will pass it by without even noticing. What we need is more plants.” “No, Tom.” “Mature ones, bigger and flashier. The patch could also use some color.” He waved his hands, encompassing the eucalyptus grove, the brush and hillside beyond. “Way to green. Our little plot needs to stand out.”

“Tom, the soil is unforgiving, too much sand. Nothing will grow here.” “Native plants will,” he said, “and tomorrow we’re off to Old Town Nursery to buy some.” “Don’t you think you’re being a bit grandiose?” she said. “I thought we’d planned a small remembrance.”

ered while they settled the “natives,” as Laurel called them, into their new homes. “That man at Old Town…what was his name?” he asked. “Harvey.” She was spreading mulch around the white sage. “He knew what he was talking about. The plants, I mean.” He ran his hand along a blue flowered stalk. “Beautiful.” Laurel glanced down the road. “What are you thinking?” he said. “About roadside memorials,” she said. “You drive by and it makes you wonder who the person was. Who made the tribute and why?” “Yes, and who waters and tends them?” he added, wiping sweat from his forehead. “People like us, I guess.” “Yes. Like you and me, Tom.” She craned her neck, looked up at the sky. “It’ll rain soon.” “You haven’t noticed. It’s been sprinkling off and on.” He held up a hand, caught a few drops in his palm. “See?” He stood up and walked to the perimeter where the land they’d cleared for the memorial met the hillside brush. “Looks good but—” “Oh, no, Tom.” She playfully wagged her finger his way. “We’re done now, finito, basta, no more.”

“You drive by and it makes you wonder who the person was. Who made the tribute and why?”

“We’re just not finished. We want it to be—” “—The best it can be. Yes, so you’ve said.” He went back to the site and started gathering their tools and supplies. Laurel took a deep breath, held it a moment and then let it out. “You’re right, Tom. We need color,” and then she waited there until he finished and went around to open her door.

*

*

*

The next day they stopped at the nursery, bought several native plants, those that would thrive in the sandy soil on the mesa, and then drove out to the site. An overcast sky and dark clouds hov-

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“How about a small cross then? One with Samuel’s name, his birthdate and the date he—“ “—No. Sam wasn’t religious. You know that.” She was fussing with her red sweatshirt, rubbing a muddy splotch, making the stain darker and bigger in the process. Without looking up, she asked him about a childhood rhyme. “How does it go, you know, the one about Jack’s house with the cat and the rat? It goes on forever.” “Uh-huh, and this is your subtle way of telling me we’re going beyond what we’d planned. Overkill, right?” Laurel bent down and picked up the watering can. “Okay…maybe a plaque would work, but that’s it.” She turned and headed for the truck. “You’re too far out into the road, Laurel. Better be careful.” “There hasn’t been a car all afternoon.” She kept walking. “Humor me and get out of the road. You never know when one will zip around the bend up there.” “What did I just say, Tom?” Her voice suddenly cracked, the sound highpitched, almost primal. “Have you seen a car today? Well, have you?” “No, you’re right,” he said, and then set about collecting the gardening tools and empty pots, carrying them back to the truck. When he finished, he looked around and saw a red dot in the distance, moving down the road. Laurel was on her way home.

Laurel came in holding a plastic sack. “I hate interrupting, Tom, especially when you’re grading papers.”

“I…I’m sorry about yesterday. Running off, leaving you there. Alone.” “It’s all right,” he said, “no reason to apologize.” She nodded. “If you say so.” “Would you like to see the plaque?” He went to the desk and opened a drawer. “Not now, Tom, maybe later.” She asked if he’d heard the weather report. “It’s not supposed to rain as heavy tomorrow. We’ll be all right for the afternoon.” “Good. I want to go back as soon as possible,” she said, “I want to do it right this time.” “What do you mean, do it right?” he asked. She sat up straight and took a deep breath as if gathering courage. “I won’t lose my temper again, I promise.” “So you want a do-over?” he asked, as the lines around his mouth crinkled. “Yes.” “Then we’ll indeed go tomorrow if the weather’s clear.” She said nothing and started searching through the sack, as if looking for something specific. “But what if it isn’t clear tomorrow? I don’t want to spend another day indoors. I want to finish our work, Tom.” “We will, but we have to wait. Just until—” “—But I don’t want to wait,” her voice growing louder and shaking her head. He took her hand and held it. “Do your breathing exercises.”

She pulled out a caboose, part of a child’s train set. “I thought maybe we could add this to Sam’s memorial . . . .”
“Let’s sit and talk since we can’t work on our project today.” He motioned for her to sit on the small sofa, and then came over and sat next to her. “What did you bring with you?” She pulled out a caboose, part of a child’s train set. “I thought maybe we could add this to Sam’s memorial. He loved this when he was little. Not sure where the rest of the train is.” A couple of ball caps, both frayed at the brim and stained from wear, came out next. “What do you think?” she asked. “Great idea, Laurel. Maybe near the plaque.” She looked down at her hand, twisted her wedding ring. “The train, yes. Not so sure about the hats. How would we manage it?” “We’ll attach them to wooden stakes, like we did with the sage.” “Okay,” she said, and sat back as if for a long chat. “You looked busy when I came in.” “Do you want to talk about Samuel?” She picked up one of the ball caps, ran her fingers around the brim. “No,” she said. Then, “Yes.” He laughed. “Okay, what do you want to tell me?”

*

*

*

The office grew dark, and he switched on the desk lamp. Rain drizzled down the window behind him. A knock at the door and he shoved aside the file folders he’d been working on.

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“In with the good,” she said, taking a long breath, “and out with the bad,” when she exhaled. “Feel better?” “Yes, Tom. I do.” He went back to his desk, moved papers around until he found what he wanted. “I have great news. A reporter from The Adobe called, asked if he could do a short article on Samuel. Interview us about the memorial. What do you—” “—No.” Laurel jumped up from the sofa, knocking over the sack, spilling the contents as she headed for the door. “Absolutely not. Nothing in the papers. No one can know,” and then she was gone. He shrugged and went back to work, sorting through files, but stopped when he heard voices outside his window. He turned to the sounds. A blurry figure flashed by. Someone called out, “Laurel.” He rushed from the office.

She paused, looked up at him. “If only—” “—If only what, Laurel?” “If only…I don’t know. You’re supposed to have the answers, aren’t you?” She rose slowly, unsteadily and collapsed in his arms. “I killed them?”

On her admission to the hospital, he’d made an initial diagnosis of severe melancholia, coupled with guilt and long-term depression, the source being an automobile accident that killed her husband, Tom, and son, Samuel, aged twenty-three. Laurel was the driver. He was aware at the outset of the dangers of therapeutic role-play. If he pushed too hard, Laurel might retreat further into her state of despondency. If she identified too closely with him in the role of her husband, Tom, this could bring up relationship issues he would be unable to resolve. Yet in their early sessions, Laurel proved resistant, unwilling to connect to her grief in a constructive way. So he took a chance and was encouraged when, after explaining the therapy and the memorial for Samuel, Laurel had agreed and said, “Sounds like a plan, Tom.” This afternoon he did not doubt Laurel had made significant progress toward healing. When he looked in on her earlier, after supper, she’d appeared to be sleeping peacefully and without additional sedation. He felt she was now ready for individual therapy, and perhaps, in time, he would see her occasionally as an outpatient—a new long-term goal for her. After signing the report and closing Laurel’s file, he took off his glasses and rubbed his eyes. Tomorrow, he would ask the orderlies to remove any trace of the memorial, as it was no longer needed. The site wasn’t far from the hospital. It was less than a mile or so down the road.t

Tomorrow, he would ask the orderlies to remove any trace of the memorial, as it was no longer needed.

“No,” he said. “You didn’t. It was an accident. You weren’t responsible then and you aren’t responsible now.” He held her close, tried to comfort her, shield her with nothing but his soggy white coat. “But they’re dead just the same,” she said. “Yes, they’re gone, Laurel. Tom and Samuel.” She looked up at him. Their eyes met. “Do you think any of this was worth it, Doctor?”

*

*

*

Laurel wore no raincoat or hat. Her clothes were drenched. She knelt in the mud, tearing at the native plants, pulling them out by their stalks and roots. “Laurel?” He bent down next to her. “Laurel, look at me!” “Everything has to die,” she said, and then she moved on to the seedlings, ripping, tearing, and chanting softly: “This is the maiden all forlorn That milked the cow with the crumpled horn That tossed the dog that worried the cat That killed the rat that ate the malt That lay in the house that Jack built.”

*

*

*

It was 10:00 p.m. when Jack Adamson, M.D., Ph.D., looked up from his case notes. He’d been working steadily on Laurel Dean’s progress report since dinner. A quick glance at his calendar indicated he was scheduled for eight patients the following day. No time tomorrow. Better finish now. He scanned several pages of notes, including the treatment summary he’d almost completed.

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POETRY

Tim Kutscheid

Para Los Bravos
Terminal cancer attacks everything in sight, voraciously feeding on the body, insidiously clawing the soul, testing faith and courage, his and all around him, mother quietly sobbing, gripping his hand, father faking strength, tears in his eyes, wife frantic, going crazy, kids crying, not understanding, friends forlorn, searching for speech, priest praying for his soul. All are thinking, what to do, how to do it, how much time? The patient moves, painfully stretches, reaches the phone, gasping, orders flowers. Flowers fill the room; the card says, Para Los Bravos. For the Brave Ones . . . for all of you.

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Chris MacGilvray

Loss of Limb
His hands touching, groping Finding not—emptiness but What of this? From whence did the nakedness Of limb come? It was there—it was! He remembered the battle, but not Then of waking to find An empty place where his leg had been Tears falling cascading against belief Against acceptance—if It were not there then how Could he feel it? His Mind now a whirl Of anger mixed now with grief Overwhelming unbidden Let this moment pass—the joke that had been Played on him—recedes into nothingness And finally acknowledgement And pain—a vastness of pain.

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FEATURED ART

Undefined by a Diagnosis
Sandy Palmer

Elizabeth Jameson, Celebration, 2011, solarplate etching on paper, 5” x 5”

“I always wanted to make the world a better place.” ~ Elizabeth Jameson

I
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magine being a public interest lawyer, lecturer, and civil rights advocate, all very verbal vocations, and suddenly losing the ability to speak. That’s exactly what happened to Elizabeth Jameson. She was at the park with her two sons and, without warning, was unable to communicate. Aphasia. She opened her mouth but couldn’t form any words. She was rushed to the hospital where she underwent brain surgery. The brain biopsy indicated demylenating disease—multiple sclerosis (MS). Her professional and personal life were profoundly altered.

Jameson was born in Rochester, New York, received a bachelor’s degree from Stanford University in 1973, and a law degree from Boalt Hall School of Law in 1976. She followed that with a Postdoctoral Fellowship in Health Policy at the University of California at San Francisco School of Medicine. In addition to becoming a public interest lawyer, she was also a nationally recognized expert on health policy for children with chronic illnesses and disabilities. Her pursuit to “change the world” through our legal system came to a screeching halt when she lost her ability to speak.

Elizabeth Jameson Elizabeth Jameson, Valentine, 2010, solarplate etching on paper, 5” x 5”

Jameson’s sons, Aaron and Brendan, were just six and four years of age when she became aphasic in 1992. Prior to that event, she had experienced a myriad of symptoms that were initially diagnosed as lupus. Those symptoms included optic neuritis (the loss of vision in her left eye), a common symptom of MS. She subsequently regained her vision but did not receive a formal diagnosis of MS until she lost the ability to speak and the biopsy revealed demylenating disease. “Aaron was just entering kindergarten, and Brendan started two years later. I learned how to talk with my children as they were just starting to read.” She read children’s books with her sons as well as a speech therapist and says, “My recovery was due to hard work and the fact that my brain, in part, repaired itself.” She regained her ability to speak and although she had never picked up a paintbrush before, on a whim, she enrolled herself in an introductory oil painting class. “I loved the smell of the paint and the texture of the paint. I really experienced an emotional feeling—like I was falling in love. It was a sensuous experience. I loved it and it became a passion…a neuroscientist suspects that I gravitated to art because my language skills were impaired and another part of my brain took over so I could express myself.”

She painted for several years and began selling her work but says, “I got bored. I had always wanted to change the world. I am Catholic and I grew up adoring Mother Teresa…I wanted to find a way to use my talent to help change the world in some infinitesimal way.” Although she enjoyed painting beautiful flowers and other images, she wanted to find a way to make a difference with her art. She began searching for a symbol to represent MS. She thought about a wheelchair or a cane but not all people diagnosed with MS require them. After eight months of searching, “I looked around my office at the stacks of MRIs of my brain and realized that was the common denominator among people with MS.” The MRI (magnetic resonance imaging) is used in diagnosing and tracking the progression of the disease. MRI scans essentially show slices of the brain. The images are black and white with shades of gray that reveal the lesions that are a telltale sign of MS. She wants physicians and patients to see the images differently. She wants to remove the stigma and the fear by illuminating the fact that those images represent a living, breathing, beautiful person.

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Using the state-of-the-art neuroimaging technology that exposes the progression of her disease she decided to take it one step further to reveal the other aspects of who she is as well. She selected one of the MRI images of her brain and took it to her easel. “I decided I wanted to deal with the brain in my art but I didn’t know how to go about it. I’m a painter so I started by painting. I put the MRI image on an easel and did a freehand drawing as I interpreted the image.” Using French dyes on stretched silk she painted the image of her skull and brain in vibrant colors. Her first paintings were titled self portraits. She later discovered a way to use light from the sun to create solar etchings that allowed her to present the detailed MRI images of her brain in a different light. (In solarplate etching, a metal plate is coated in a photosensitive gelatin. When exposed to UV light through sunlight or an exposure box, it develops into an image in a water bath. After developing, like traditional etching, ink can be applied and the plate run through a printing press.) In addition to the intricacies revealed in the scans, she saturated the images with rich, vibrant inks that reflect the beauty, wonder, pain, and mystery of what it means to be human. For the next five to six years she did nothing but etchings. Kaleidoscope is one of her favorite pieces because “it represents life—all jumbled together—the good, the bad, and the ugly.” Life is sometimes like a crazy kaleidoscope with

the many facets melded together, shifting, ever-changing. Creating it was a way for her to “make sense of it and make peace with it.” After receiving the diagnosis she began asking herself questions like: Who am I? What can I do? What does it mean to have MS? What does it mean to be happy? “Having MS is like being in a foreign country, where no one speaks a common language and where you have no compass…The medical field doesn’t acknowledge that they are speaking a foreign language and they don’t acknowledge that being in an MRI machine feels like you are in a coffin. Going into an MRI machine is not a psychologically neutral act.” She lectures at universities and meets with personnel at medical schools about developing a curriculum that is patient-centered. “We usually hear the physician’s narrative and not the patient’s.” She stresses the importance for doctors to “acknowledge people as complex individuals who are fascinating and have interesting diseases.” Having MS caused Jameson to became very unstable and she would fall often, many times breaking bones. Deep Inside is a piece she created after breaking her shoulder. “In my diary I wrote about what it meant to me to be unstable and to have broken bones. I used an X-ray of my broken shoulder and placed it on top of a page from my diary.” It is a solarplate etching on paper. It reveals what happened to her physical body as well as the emotional impact.

Elizabeth Jameson, Kaleidoscope, 2011, digital collage of hand-pulled prints, 1.5’ x 9’

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In addition to the etchings, she has created some revealing pieces with fabric, including a large wall hanging on silk titled Circuit Breaker Narratives. It incorporates medical imaging, lab results, medical articles, hospital records, pages from her diary, radiology findings, and drug intake instructions, along with other elements. “It involves all the things one needs to create the fragments of life into the whole.” The artist has progressive MS. As time passes, the disease has taken its toll on her body. She can no longer use her arms and is now a quadriplegic. It is getting harder for her to speak. Despite that, she is a delightfully exuberant lady with a beaming smile who embraces life and loves her work. “I am currently working full-time as a ‘choreographer’ with an assistant. I work side-by-side with Michelle Wilson.” Together they are working on an installation for the Human Brain Mapping Conference in Seattle. It is an international conference and Jameson says, “The installation we are working on involves printing images of MRI slices of the brain, and hanging them in a semicircular sequence. There will also be sound incorporated into the space where the pieces are hung.” Jameson has created “a narrative of chronic illness” with an aesthetically-pleasing, thought-provoking, evocative body of work. Her images are part of the permanent collections of Harvard University’s Center for Brain Science, Yale University’s MS Center, University of California Berkeley

in their new Li Ka Shing Center for Biomedical and Health Services, and Basque Center of Cognition, Brain and Language in Spain, among others. She has been featured in many publications and had numerous solo and group shows. In a featured artist interview posted on the online blog, Manufactured Dissent, in April 2013, Jameson eloquently sums up what she is trying to communicate with her art: “The narrative of illness in society is that of acute, not chronic illness. The stories told about acute illness generally have an arc, they are not a continual, lifelong experience. Those of us with a chronic illness are confined by our bodies, and deal with feelings of invisibility, inadequacy, and physical disconnection; the notion that our bodies belong more to our doctors than ourselves. As an artist with a disease of the brain, my work allows others with brain diseases to see themselves as more than their illness, and to repossess their bodies, by providing an alternate view of their anatomy. Through my work, those with disabilities are able to see their bodies not as sources of embarrassment, pain, or suffering; instead, they are able to perceive the exquisite color and intricate dimensionality of their physical existence. By transforming my brain scans, I reclaim ownership of my brain, and no longer feel like a victim or patient: I am a person. I no longer feel that my identity is defined by a disease.” To learn more about her or to find out about upcoming exhibitions, visit her website: www.jamesonfineart.com.t

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Elizabeth Jameson, Emerging, 2010, solarplate etching on paper, 5” x 5”

Elizabeth Jameson, Deep Inside I, 2010, solarplate etching on paper, 8” x 8”

36

POETRY

Kelli Allen

Taking Place
In the conversation we do not have I do all of the speaking and I yell occasionally about how it seems that my child is gone, that this new small person, not so small really, has entered like a changeling from his worm-holed tree and crept sometime in the earliest morning to scream and rip at what I claim for normalcy. I tell her this, and other shades of the same, and she only watches my mouth, her eyes quite focused, clearer than I have seen them in a long time, and she will say nothing. I look to where her fingers are playing at steeples in her lap, the way each finger rubs its neighbor quickly, repeatedly making shapes tall and arched. She will say nothing because her son has died and mine has not and whatever words I use to explain my fears, pain in this, my own strange loss, she will stay silent. Her son is dead, mine is not. There is only this between us.

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PERSONAL ESSAY

The Yarn Spinner
Judie Rae

I am surprised to see so many Chinese in attendance. When they pass by the mahogany casket holding my father’s body, they bow. It is this simple elegant gesture of final respect that draws reaction; if only I could bow simply and elegantly and be absolved. My young husband reaches over and squeezes my hand; notice that he is here beside me. I return the gesture, a kindness given for a kindness received, although I do not find his presence comforting or reassuring. We are in the chapel and I am crying not so much for a father departed as for words left unspoken. They have separated the family from the rest of the mourners, and except for my husband, I would have preferred to sit on the other side of that gauzy sheet, thin protection from what ails us. After the service, the minister hands me the jade ring my father always wore, the ring my father bought in Hong Kong. I slip it over my thumb. It is the only appendage that approximates a fit, but of course here too, the remembrance slips and twists. My father’s hands were large, giant warriors that threw me skyward while I shrieked with pretend terror. Only once did those giants flail out in anger. The bruise still sits on my soul. In a gray limousine three of us ride to the gravesite. I am looking out of the tinted windows. The spring flowers that line the cemetery’s narrow winding roadway are all a dingy yellow wash. The children frolicking beside the small lake, and the greedy ducks they feed, are a bilious hue. The color makes me feel slightly dizzy, as though the passing sights are part of some crazy dreamscape. 38

At the gravesite the chauffeur pulls in behind the hearse. He opens my door. It is late May and a blast of unseasonable heat greets us as we emerge from the car: me first, then my husband, then my father’s first wife. She is not my mother. She is not anything to me except the person who told me it would be all right to wear pink to the funeral. I am the only one so dressed and I’m embarrassed, but more embarrassed by the thin warm milk that has begun to leak from my breasts. My infant son has been left behind so that I might say a proper good-bye to my father. Only I know it is too late for proper good-byes. I concentrate on the hot tingling sensation inside my overburdened breasts. It seems unduly appropriate that what nourishment I can offer must be withheld on this day. The attendants have set up seven chairs at the gravesite, but only three of us sit down. The other family members choose to stand, and the division this creates is no worse than the gap that has existed between us for some while. Now it is accommodated for all to see. The sun is hot, blinding, and I am glad I have remembered to bring sunglasses. I listen to more droning words. The ring is a solid weight I twirl on naked fingers, each one in turn. By the time the casket is lowered into its cement jacket, I have a piercing headache. We escape to the awaiting limousine, leaving other family members to accept the condolences of weeping friends. From the safety of the car, I watch my aunt assume the proper position, offering a white-gloved hand to an old acquaintance. The mourners do as expected and pass by her

like dutiful guests in a receiving line. My chauffeur pulls the car away from the curb. I glance down at the rolled sticky pamphlet I have been clinging to since the church service. Deliberately, I smooth the creased paper. The wrinkles remain, although the printing is still legible. I giggle, reacting to what I read. “He’s resting in space number C-121. They’ve lined him up with all the rest.” My father’s wife speaks, her voice soft. “You must be tired.” I slump back against the seat. “I was thinking of all the people we should have notified, the people of a lifetime.” My husband reaches over and squeezes my hand. “The important ones know.” I long for air. The cool substitute that flows through the vents does little to sustain me. I shiver, though perspiration clings to the back of my suit. “Did he ever tell you about the lady in green?” I ask my father’s first wife. “What lady in green?” “In Russia. She had green hair and green eyes and only dressed in green. Green everything.” I close my eyes, visualizing my father with this exotic creature. There is a horrible pause. “Your father was never in Russia.” I look directly at her. “Yes, he was. Before he married you. Way before. Before he lived in Hong Kong.” She answers me slowly, deliberately. “Your father never lived in Hong Kong.” Blood vessels in my head pound. Bright lights behind my eyes hurt, throb. All those nights I sat on his knee, his good one, and listened enraptured, as he described foreign people, events, places . . . “You mean . . . none of it was true?”

She nods, her eyes more in movement than her head. I search for my husband’s hand and squeeze. “Why?” “I asked your grandmother that years ago, when I first realized he was . . . fabricating.” “Lying, you mean.”

All those nights I sat on his knee, his good one, and listened enraptured, as he described foreign people, events, places . . .

“To him it wasn’t lying. To him, it was real. All of it.” “Grandma knew too?” I try to recall my grandmother’s placid face listening to my father’s stories. “But why?” “Your grandmother was responsible. At least she never stopped encouraging him. She felt sorry for him, I suppose, because of the polio.” When I was a little girl I used to walk in front of him, pretending I wasn’t with him, pretending I didn’t know the man with the awful limp. “Your grandmother told me that as a child your father used to sit on the curb and watch all the other children playing. He couldn’t join in, but he would sit for hours, watching. Just watching. That’s when he made up the stories. Incredible tales, even then.” She paused. “I guess after a while both of them stopped noticing the difference between fact and fiction.” “But everyone believed him. All his friends . . . family.” I look at her quickly. “My aunt? Did she know?” She nods. “And my mother?” 39

“I suppose so.” “But they never said anything.” She thinks about this. “Perhaps they needed to believe too.” I am glad when the limousine pulls up in front of the house, the house where I once lived, which is now temporarily occupied by this stranger who knew more of my father than I. She invites us in but we decline, pleading a need to return to our son. The need is real enough. The two of us drive in silence. When we are almost home, I dare to speak. “Did you believe him?” “Always.” My husband’s handsome face is luminous in the half-light of approaching dark. “I wonder why she told me. She ruined him for me.” “Because she made him real?” I start to cry. “It was a purposeful, hateful act.” “You needed to know.” “Did I?” He looks at me with eyes so tender I want to enfold myself within him, a bee enclosed and protected by the fragile petals of a summer rose. My son nuzzles his downy head against my breast, rooting for the nourishment I so gladly give. I marvel at his funny tufted hairdo and the perfect half moon nail on each miniscule finger. My husband watches the two of us, then joins us finally in our warm nest of covers.

It is a long time before he speaks. “Can you forgive him?” “That’s not the problem.” “Forgiving yourself?” The tears start, spilling over one by one onto silken baby hair. I am crying for the man I never knew, for the family that protected him even from himself. I take the jade ring from my thumb and place it on the scratched bedstand, wondering now about its true place of origin. Someone at the funeral suggested that it would make a wonderful brooch, but I know it must always remain as is: an absolute reminder of the gentle hands that bore me upwards. Somewhere between his wondrous toss and the little girl knowledge that flight is but momentary, lay perfect possibility. He gave me that land of illusion where happiness explodes in a mist of pure white light. I get up to rest my son in his bassinet. He snorts and snuffles with infant satisfaction. Perhaps in baby dreams he too has found it—that place where time is suspended, where fancy and legerdemain reside. And then it comes to me that I have been given far more than has been taken away. For a moment, or for as long as I care to keep her, there really does exist a lovely lady in green.t

40

POETRY

John Mahoney

notes on a coupon that came in the mail which promised to end my pain
in the mail today a coupon from a chiropractor promises, Say Goodbye to Pain i wonder, what can they know of true pain? pain, a prison from which i have no parole a sentence imposed without guilt or innocence no visitors a solitary confinement an ocean in which i swim sometimes dive sometimes ride a wave with salt encrusted stinging my lips a new country vast vistas mountains and deserts depopulated and uninviting a true lover intimate caresses knows all of me and in such exquisite detail, and remains ever faithful Feb 8, 2012

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PERSONAL ESSAY

Rosemary
JoeAnn Hart

W

hen I helped to commit my friend Linda to a mental institution, I promised myself I would never write about it. Three of us, all friends, and her daughter, Jessica, had maneuvered Linda into the backseat of my Subaru wagon on some false pretense and headed for the “behavioral healthcare facility” of her insurance company’s choice. We did it because she was manic, paranoid, and a danger to herself. We did it because we loved her, not—as she so hotly accused— because we had fallen into the clutches of the Hell’s Angels who had put a price on her head. My role as one of the captors (as she called us) was to drive the getaway car. On the one hour trip, metaphors of disaster kept leaping out at me from the road: Skid marks led to overheated cars in the breakdown lane, exploded tires littered the pavement, and emergency vehicles screamed past us at ever frequent intervals. When I saw the detour sign telling us that our exit was closed for repairs, I said “No exit” out loud, but who could hear me? Linda was struggling with a door handle screaming, “Let me out! Let me out! They’re following us!” Jessica and Grace, another friend and therapist by profession, held her down as I pressed the mommy button up front and locked all the doors. 42

“Do not write about this,” I said to myself while trying to keep the car under control. “Do not exploit her pain.” From behind me, Linda reached out and grabbed my elbow and we swerved. Jeneth, who was sitting shotgun in the passenger seat, pushed her back into the arms of her daughter before we became one of the disabled cars by the side of the road ourselves. By the time we got to the hospital we were ready to sign ourselves in, but Linda was not. She had morphed into a lucid woman for the intake nurse. Grace, the professional who might have helped us with admissions, was too shaken up by the car ride and was off somewhere crying. Perhaps she understood more than anyone the extent of Linda’s misery, but please, everyone, don’t fall apart until the job is done! It was a good thing that Jeneth was a nurse and knew buttons needed to be pushed, and pushed them. In a conspiratorial voice, she asked Linda how many doctors in the hospital were planted there by the Hell’s Angels. When Linda shouted, “Sssh! She could be one of them!” the nurse pressed the lock-down button and that was that. Linda was in.

As we all waited for an order from a judge (Linda refused to commit herself) I continued my mantra, “Do not write about this” and fished around the waiting room for some reading material. I picked up the facility’s brochure and was surprised to learn that severe mental illnesses are more common than cancer, diabetes, or heart disease, but I lost my concentration when Linda began flirting with the security guard. She undid the top buttons of her shirt and asked for his advice about commitment. The guard told her that the very best thing to do was to sign herself in, and so she did, batting her eyes at him throughout the paperwork process, then allowing him to escort her to her room. And still I promised I would not write about it. After a couple of weeks in the hospital, she was her old life-loving self. She threw a Captors Party as a thank you for getting her the help she needed, and served a nonalcoholic punch. She was now doing AA, thinking meetings might be a good place to meet men, but her sobriety didn’t last long. Her problem wasn’t particularly alcohol anyway. Her breakdown had been a result of unbearable grief for her recently deceased biker brother (hence the many Hell’s Angels delusions) and a sleepless ad-

diction to internet dating sites on which she had created multiple personalities and given out too much personal information which had led to her paranoia. She swore off the computer, and it was a healthier gesture than swearing off drinking. A year passed, and then the pressure became too much. I wrote about it. To protect Linda, I turned the experience into fiction, transforming her personal pain into universal human suffering. In “Girls Night Out,” I wrote about a friend committing another friend, who comes to recognize the thin line that separates them. Grief and sleeplessness can push anyone over the edge. Paranoia is the default position of a woman living alone. There but for the grace of God . . . etc. The story was published in a small literary magazine so I never had to worry that Linda would read it, and she didn’t. Three years passed without incident, with her mind firmly on course but one day she had a pain in her side and her body veered off the road. She was diagnosed with neuro-endocrine cancer. Mass General sent her home and told her to enjoy life, the implication being, “while you can.” She didn’t have to be told twice. She took early retirement from her job as a speech therapist and filled her days with joy. She danced, kayaked, played with her grandsons, and stayed connected with friends. She began treatment to shrink tumors that had metastasized in her liver, but even that stopped because she got painful and disfiguring shingles on her face, a devastating turn for a woman who prided herself on her looks. During the holidays, I went to her neon-green cottage on the harbor to drop off some soup, and while I was there I admired a

rosemary plant in the shape of a Christmas tree on her counter. I brushed the needles and inhaled. “My favorite,” I said. “Take it,” she said and she handed it to me. “Oh no,” I wanted to say. No more metaphors! I could see where this was going. All that is necessary for me to kill a plant is to bring it into my house and I did not want this to be one of those stories where the plant and the person keep pace with their mutual decline. And of all things, not rosemary for remembrance, as Ophelia once wailed in her insanity. But I couldn’t refuse, so I took the plant home and fussed over it, but I also enjoyed it and used it lavishly in the kitchen. Then the day came, as I knew it would, when the rosemary did not look well. In March, Linda was over for dinner and I had to hide the plant with its fist-sized bit of rot. Linda was weak, and drank only sparkling water with her single stuffed egg. When spring came I moved the plant—which by then had lost half its needles—outside, because I am better with outdoor plants and this action gave me hope. But the plant got worse and Linda got worse. In April, when over ninety percent of the needles had turned brown and fallen to the earth, Linda canceled her oncologist appointment and called hospice. She did, however, being Linda, keep her hair appointment to have her roots done. Jessica ordered a hospital bed. Jayne, a mutual friend, drove down from Maine that weekend to say good-bye. She stayed at my house Saturday night, but I did not go with her when she left in the morning because hospice had instructed Linda’s friends to regulate visits. Jayne was booked for Sunday morning and I was scheduled to sit with her on Monday. I was in the garden when, an hour later,

Jayne came screeching down the driveway. “She’s dead, she’s dead,” and we fell into one another’s arms. I did not bother to go check the plant. I already knew, it was one of those stories. I drove to Linda’s house where she lay in the bed in her living room, surrounded by her grandsons’ toys. Jessica and friends had covered her in a satin blanket and then carefully laid tulips and hyacinths, and other spring flowers in cascades from her neck to her feet. The effect was stunning and Linda looked beautiful. Her shingles were gone. I sat with her awhile, keeping my palm on her cool forehead, then kissed her good-bye. I went back home to get my coffee urn because Linda would be having many visitors that day and she was always such a gracious hostess. It was weeks before I could bring myself to pull the dead rosemary plant in the garden. It came up without a struggle because it had had no time to set roots before it died. I sniffed in deeply because even in death it had kept its fragrance. And there it was. The smallest wisp of fresh green was growing out from the dead roots! Talk about your metaphors. I separated it from the tangle of rot and planted it back in the soil. I let it stay in the garden to die a natural death come winter rather than have me slowly killing it in the house as is my habit. Instead, I dried the leaves for cooking, but I won’t need them to remember Linda. I won’t need anything. Then I promised myself, yet again, that I’d never write about this.t

43

POETRY

Debra Beauchamp

No Other Choice
It’s hard to come to terms with it. It’s bigger than both of us. We can’t fight it; we can’t make it go away, it lives with us everyday. Sits at our breakfast table in the morning, and lies between us in bed at night. We will have to find a way to live with this, your disability and make it part of our lives. For we have no other choice.

Debra Beauchamp

Triumphed
Beat on your chest. Scream then scream again; for you have triumphed over it. The monster that made you not whole has left, limping away. He hides in the bushes now. You know he is there but you are not afraid anymore. You will stand your ground and not wave the white flag for the war is not over yet.

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Debra Beauchamp

The Gift
We had it all taken away but in the emptiness there it sat, the gift that I didn’t see before when my vision was gray. It was there all the time Yet only now I can open it. I look at the world differently. I am more thankful. Thankful that I am just here and that you are here with me. Diamonds and shiny things have lost their luster but people have turned to gold. And the sun, and the wind, and even the rain, are all that matters.

Bob Nicolescu

Madeleine
Backing from the windows suffocating in their flat a stunted weep of wounds of darkness you— a blade awaiting the raindrop.

Previously published in Aasra Magazine—U.S.(2012).

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art

Painting with Light
Sandy Palmer
“Who I was, is still who I am.” ~ Veronica Wilson It was a flood year and frogs were everywhere so they decided to revive the name. Frog Valley started with a pottery shop, where they lived, while they built their home. After moving to Berkeley Springs, Wilson met a local man, ragtime, who created beautiful glass work and she was intrigued. She began spending time with him, learning his technique and together they made combination pieces—clay vessels with openings where they inserted and soldered the glass into the pottery. Wilson’s fascination with glass continued and her friendship with ragtime grew. Her mentor and friend was a combat marine who fought in Vietnam and he’s been on a mission for peace ever since his return. He decided to create 1,000 glass peace signs to promote world peace and he called the project 1,000 Points of Peace. Wilson has participated by making some stained glass peace signs and the money raised is donated to Stepping Stones, an organization that helps pave the way to a brighter future for women who have been abused. At this time they have made 540 peace signs. With no formal training, Wilson’s methods are unconventional at times and produce results that surprise those who have training, like her brother who has a degree in ceramic art. Regarding some of her methods, she says, “Nobody told me that I couldn’t do it. So I did it. I guess that’s just part of who I am and the way I work.” Wilson is now almost exclusively a glass artist—working with stained glass and fused glass. When she has an idea for a stained glass piece she draws it onto pa-

N

estled in the eclectic, art town of Berkeley Springs, West Virginia, is the home and studio of artist, Veronica Wilson. The quaint town with galleries, live music, and theatre is home to many artists, musicians, and authors and has been listed as a top ten small city art destination by American Style magazine. It is an area that the artist describes as “a beautiful place to work and live.” She is one of the founding members of Frog Valley Artisans, Ltd., and can be found in her studio daily, creating exquisite stained glass works of art. Wilson is originally from Pennsylvania and had an interest in photography when she enrolled at the Art Institute of Pittsburgh. After one quarter she left and began working professionally with Mark Schwenk, a photographer, blacksmith, and metal artist. She had always had an interest in pottery so she took a 6-week course to learn how to throw pottery on a wheel. Mark built a kick wheel for her and bought a kiln. Soon she began creating her own pottery. They opened Earth N Hand Studio in Pittsburgh in 1990 and began selling their wares. A few years later they decided they wanted a space where they could live and work that was secluded, serene, and away from the hustle and bustle of city life. They found 7 acres of land in Berkeley Springs and moved there in 1996. The property they purchased had been referred to as “the old frog valley area.”

Veronica Wilson, Joy’s Dragonflies, 2002, stained glass, 11” x 60”

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Photograph by Mark Schwenk

Veronica Wilson, Poppies, 2007, stained glass, 20” x 36”

per. The design is then copied and each piece is cut out, like a puzzle with many pieces. Each piece is traced onto the carefully selected glass and then cut out. Next, she grinds each piece until everything fits together exactly and wraps the edges with copper foil. Lastly, she solders the entire piece together, flips it over and solders the other side. It is a time-intensive process. One 20-inch round, stained glass piece may take three days to complete. When she finishes a piece and holds it up to the light, it illuminates, and “totally changes the appearance of the glass, so you’re painting with light.”

Since its inception in 1996, Frog Valley has expanded by leaps and bounds. In addition to the pottery shop, they now have a metal shop, wood shop, glass shop, and two galleries. They offer classes and workshops to the general public and Schwenk often works with apprentices who want to learn the art of sculpture and metal work. It is a place where imagination and creativity know no bounds and visitors can find locally made and regionally recognized art. The galleries are open to the public on Friday, Saturday and Sunday. The artist’s house is attached to the glass shop and one of the galleries. It is where she spends most of her time. She was diagnosed with multiple sclerosis in 2003 and says in

Photograph by Mark Schwenk

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Veronica Wilson, Clockwork Blue, 2008, stained glass, 24” x 28”

her blog, “One thing MS does with your life—it makes it smaller. I don’t get out as much, I no longer work outside of my home studio, and I very carefully select where I spend my spare time and energy.” Save your pity, though. She has no use for it. With a matter-of-fact, no-nonsense approach to her condition she says, “Don’t get down. Get pissed off. Get up and do something.” And, so she does. In 2010 she was recognized by the West Virginia Division of Rehabilitation Services and was given the Ability Works Award for her natural talent, ambition, and her contribution to the community. The DRS was very supportive of Wilson’s drive to create and they funded several accommodations, including the installation of an elevator and ramps, a wheelchair, and tools for the pottery shop. With the accommodations she has been able to continue creating beautiful 48

work. She has an overwhelming desire to create and can’t imagine doing anything else. In her blog she also says, “MS stands for mostly sucky, but you can still appreciate the good things.” The good things can be found all around, and usually not very far away. It could be a radiant sunbeam that streams through the richly colored stained glass piece she’s just finished that now hangs in the window or maybe a flower blooming in the yard. MS may have made her life a little smaller, but she has made a big impact by sharing her talent. To learn more about Veronica Wilson or other artists at Frog Valley Artisans, Ltd., visit their website www.frogvalley. com.t

Photograph by Mark Schwenk

Veronica Wilson, clay and stained glass combination piece with flowers, 2011, 6” x 12”

Veronica Wilson Stained glass peace signs are part of artist, ragtime’s, ongoing effort to create 1,000 Points of Peace. Veronica Wilson contributes to the creation of the peace signs along with Kat Braun. Colors and dimensions of peace signs vary.

Photograph by Mark Schwenk

49

FICTION

The Angry Chair
Gabriel Valjan

E

dward sits.

The train gnaws at the tracks into the tunnel. This is the part of the commute to his therapy that tries Ed’s nerves because the sudden transition from the bright outside world into the humid subterranean earth reminds him of the day he lost the use of his other nerves, and once inside the tunnel, the jarring, flickering light to dark to light outside the windows as the subway passes pillars and edges into the next platform stop, reminds him of the eerie silence that day long ago when his eyes, the only thing that worked then, saw faces looking down at him as they floated with him through the air onto the hard surface of the transport helicopter that floated him away to the hospital. Inside the train he sits by the door and rocks in place. In front of him he sees a toddler strapped into his little chair, wide blue straps crisscrossing his chest as he looks up at the world. Ed observes that those in the upright world always find it in their hearts to smile and look lovingly down at a small child, regardless of that child’s looks, his or her race, be he rich or poor. Ed observes that a child has but to smile; and the only thing Ed can think is the hateful sentiment inside his head, Lil’ fucker. The subway crowd parts for the mother and her stroller. It’s the same stop for Edward and he struggles, rocking back and forth to get out of the car and onto the platform. The crowd rushes around him and the doors threaten to close on him. He tries to keep moving but nobody moves for him, 50

although he keeps saying, “Excuse me. Please make way. Excuse me. Make way.” All he gets are a few snotty stares and obscene telepathic messages. He looks up at the world, defiant, ten years in his wheelchair. He spins the wheels away from the crowd. In the distance he sees that kind folks have helped the mother carry the stroller up the steps. There is no elevator for him at this stop. She has a nice, grateful smile that makes him angry. There are steps, a landing, more steps, and then the world on top, complete with traffic, sidewalks, and traffic lights. Ed budgets extra time and change for the phone call he has to make from the payphone at the end of the platform. Every Thursday the transit cops let one of the other veterans from the therapy office come down and pick Ed up, carry him up to the surface, set him down, and then return down under to get the chair. Ed waits near the fare kiosk like some flawed pearl to be lifted up from the deep. “How goes it, Ed?” asks John. John is one of those perpetually happy people who Ed thinks is working his way to sainthood—despite the setbacks John has—flashbacks to the street-to-street fighting in Mogadishu. John has “issues” that the Veteran’s Administration once called “shell shock,” “battle fatigue,” and now, post-traumatic stress disorder, or “PTSD.” Behind the smile is a man who had once witnessed a journalist being dragged off by an angry mob armed with sticks, castrated, set on fire while he was still alive, and then beaten to death with sticks as he was burning.

“Thanks for picking me up, man,” Ed says to John when they arrive at the bottom of the VA office ramp. Ed knows John is there every Thursday for him. Looking at John, nobody in his or her right mind would mess with the brother. John was poured from the same hammer-wielding mold as John Henry, including the ferocious muscles and mass that Uncle Sam put to peacekeeping use. John survived the Mogadishu Mile, which he described quietly as “the morning run through Hell.” Nobody was killed, but John was one of those unarmed men who ran like a duck target at a carnival under rocket-propelled grenades and small-arms fire. He ran the mile delirious from hallucinations and dehydration. All along the distance, the five-thousand-two-hundredeighty feet, John said, he was taunted and tormented by the ghosts of those he had killed in urban combat. “Not been yourself lately?” John asks. “No, I’ve been myself,” Ed replies. “Oh, you mean same old angry cracker?” John says in his baritone voice. John had been born in the ’60s. His vocabulary for people and things came from his parents. His father was a dark, black machine-shop workman who fled the South, went North, turned Panther, then turned middle-class, and his white mother was a radical anti-war schoolteacher from the white Wonder Bread suburbs. His decision to join the Army did not go over well with liberal open-minded Mom and Dad. “And how are you doing?” Ed asks his friend. “I do OK. You know, man, I just take it one day at a time,” the big man said slowly in a clear, enunciated tone, “and I thank the good Lord that I’m alive and of reasonably sound mind and body. I do what I can to work off the karma.” Only a man of his size, of his upbringing and experience could, according to Ed, confuse Christianity and Buddhism, and still sound authentic. John will be there after the therapy session to take him back down to the subway for the ride home. Ed wheels to the door and knocks. “C’mon in,” the voice says from behind the door. The voice belongs to Dr. Rowland.

Ed nudges the door open with his hand. Rowland is a former officer, former Force Recon with extensive combat experience and a disabled vet. From the knee down Rowland wears a prosthetic leg that gives him a slight hobble, but otherwise the man is a poster child for rehabilitation since he runs, does triathlons, and other obnoxiously healthy things. Ed interprets Rowland as yet another one of those over-achiever types you find in the Special Operations community. He had always eyed Rowland with suspicion since the man was an officer to his enlisted, and the man could walk and he couldn’t. “Still angry at the world, Ed?” Rowland asks from his desk, head down and hand scribbling the last of his notes from the previous session. “Fuck you, sir,” Ed spews. Rowland smiles downward. This is their casual, friendly Thursday exchange. When they first met, other vets had to separate them because they had gotten into a fistfight on the office floor. Rowland had lost his temper, took off his prostheses and threw it at Ed, saying, “Stop feeling sorry for yourself and grow the fuck up.” Ed responded by leading a two-wheel charge and then launching his upper body, legs dragging behind him, up and over the desk. The two men went down behind the desk, crashing on the floor. The secretary, a big-boned gal from Guam, screamed when she came in after hearing the loud crash, and other vets in the complex rushed in and separated the two. From that tense encounter, the two took each other seriously. Rowland walked over and handed Ed a slip of paper. “What’s this?” he asks. On the paper is written the address for one of the area’s VA hospitals with a name scribbled on the bottom. Ed is familiar with the hospital. He thinks the name on the bottom is another idiot shrink. He had spent most of his rehab there and he hated the place. “I need a break from you.” Rowland’s hand is waving at the paper. “Now who the fuck is feeling sorry for himself?” Ed jokes, but Rowland’s face is serious.

51

“Ed, I want you to go to that address and visit the guy whose name is written there at the bottom. He’s a patient on the new spinal cord injury floor. It would do you a world of good to visit him.” “Why? Seeing someone more screwed up than me is supposed to make me feel better?”

of yours. Want to know what I think sometimes? I wonder when you leave ‘fruit loops’ like me at the end of the day— when you get home. I wonder if you fuck your wife.” Rowland says nothing. Ed is pacing, his upper torso like a shark fin, moving back and forth in front of the desk. The man’s eyes glare at Rowland. “Know what I do when I go home? I’ll tell you: bladder and bowel management. I’ll spare you the details. Straight cathing yourself is not the way to spend a night.” “Enough,” Rowland utters. “Yes, I fuck my wife. I can and you can’t.” Ed is stunned by Rowland’s cruelty. He shuts up. He stares at the man. Rowland gets up and his eyes motion to the door. “Get out, and go to that address tomorrow. I’ll follow-up to see if you went.” “We on for next Thursday?” Ed asks.

Ed is pacing, his upper torso like a shark fin, moving back and forth in front of the desk.
“Absolutely, not. Trust me for once and visit the man,” his hand is motioning again at the piece of paper. “Do it, Ed. Time to lose the anger.” “What’s this bullshit? Prescription for Edward Priest, Sergeant First Class—man up and realize that the world is one big happy place?” Ed inches forward to the desk with his wheelchair. “No, Edward,” Rowland uses the formal. “Lose my anger? Damn right, I’m angry!” Ed yells at him. “I know you are.” Ed turns his wheelchair to the side and snaps it back to center. Rowland is sitting there behind the desk, hands folded over, all professional and patient. The two of them have hoed this acre of pain over the years. Ed is not amused. Ed starts, “Don’t patronize me, jarhead. You have a nice house in the suburbs. You’ve got kids. You run and you do crazy shit, like triathlons.” Rowland responds, again calmly, “That I do. That I do because I was motivated to help myself, not feel sorry for myself. You could compete in triathlons if you wanted to.” The chair prowls the carpet. Ed’s wheels track Rowland’s footprints in the rug. Ed is shaking his head as Rowland watches him think, then finds words. Ed continues, “You know what bothers me most when I come here? I look at this desk of yours, all nice and orderly, and there’s that picture of you and your wife. Know what I see? I see you there as Dad and as husband next to that good-looking kid

“Yes,” the officer says from behind him. “Good. See you then, asshole.” Ed flings the door open and wheels himself out furiously before the door can hit the back of his chair.

*

*

*

Ed confirms the floor and crushes the note into his pocket. He wheels himself off the elevator at the second floor. Two West is the section of the VA hospital dedicated to spinal cord injuries. He remembers the place, although he prefers not to remember it at all. The place has changed considerably. Tax dollars at work gave the place better lighting, and the nurse’s desk was transformed from a small counter space not big enough for mouse turds into a massive u-shaped horse collar with the latest computers, a patient assignment board behind it, and nice, clean edges. A patient technician walks past Ed. She gives him a broad grin as his chair treads cautiously across the shiny floor. He stares at the floor. The floor was never that clean when he was here. The place still smells faintly of urine. A huge woman stands in front of him, clipboard against her equally massive chest, and a tiny pewter angel lapel pin next to her tree-trunk neck hangs on for dear life from her collar. She smiles, “May I help you, sir?” Ed eyes her. “Let me guess, you give nutrition consultations.” She lowers her clipboard, “No, I’m the charge nurse. Let me guess, you’re Rowland’s problem child? He said that you’d be special. I had no idea.”

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“That’s me. Here to see Larry.” Her face and mood suddenly changed. The woman’s smile practically pushed the little angel over to her shoulder. He follows her. He couldn’t see anything in front of her, but he peered into the rooms as his chair rolled by them. The incarcerated bring back too many memories. “Here you go, Edward.” She says in a loud voice into the room, “Now, Larry, if Edward here starts acting up you just let us know.” Ed wondered how a paralyzed man was going to call for help. The nurse leaned down. The view of her cleavage was something he could’ve done without, although she smelled nice. “And you behave yourself, you hear?” Ed responds quietly, “Yes, Nurse Ratched.” She gives him a glaring look and the lapel angel seemed to be saying some unholy things. “C’mon in,” the man in the bed called out to him. Two nurses were adjusting pillows and repositioning the man. The two nurses look up and smile, pro forma, as they do their work. Ed had heard about the VA system implementing novel programs. The VA Hospital system was ahead of the nation’s other hospitals. They were first to go paperless completely, implementing full, electronic medical records, and they barcode scanned all of their medication administration. The VA piloted another program, specifically targeted at reducing medication errors, on this SCI floor, by having one nurse per shift do nothing but give out medications. The nurse would do the necessary two-nurse check for narcotics but only one nurse gave out medications. The reduction in medication errors was spectacular. The SCI unit had another pilot program: hiring new RNs out of the local schools and training them to work in pairs with total-care patients, like Larry. The program was another success. Larry was a lot older than Ed had expected. The man in the bed could sense it. “Vietnam. I was eighteen. Me and five other guys were evacuating to a Huey when we took on fire. Enemy threw a grenade and I threw myself on it.” Ed thought dumb bastard although he understood the camaraderie of combat and probably would’ve done the same thing. He winced. Larry said offhandedly, “They lived and here I am.” “Sorry to hear,” Ed said. The comment sounded stupid and he knew it, but what else could he say?

“Jim sent you.” Hearing Rowland called by his first name took Ed by surprise. “If you need anything else, Larry, let us know,” one of the nurses said, her partner silent behind her but also smiling at Larry. “How do you let them know if you need something?” Ed asked, curious.

Ed feels stupid and angry at Rowland’s strategy to shame him.

“Well, first of all they have me wired up so they would know if something was wrong with my heart, blood pressure—that sort of thing, but if I want something I focus my eyes over here and sight activation software does the rest. I look at icons and over here I can eyeball letters and type them a message.” “Wow. That’s amazing.” Ed looks at the console that Larry was talking about. He sees watercolor and oil paintings on the wall opposite him. Larry comments, “Those are my paintings. Bet you are wondering how I do those?” Larry is smiling again, proudly. “I use my teeth. My first paintings were horrible but I kept at it. The nurses help out sometimes with the palette and mixing colors.” “Amazing.” Ed feels stupid and angry at Rowland’s strategy to shame him. Ed says, “Well, I guess you have to pass the time somehow. Might as well be constructive.” He wheels himself around to navigate the good-sized room. The rooms had to be large for the heavy lifting and machinery that spinal cord patients require. Each bed hosts swinging Hoyer belts, mechanized up and down and rotational pulleys and levers, and the beds could be fitted for all the modern conveniences of torture, like traction boards and weights. Larry was silent, almost reflective. He seems to be looking out into the hallway at the nurses talking. One of the nurses looks up at Larry and smiles before she returns to her colleagues. “She’s cute,” Ed adds. “She sure is. I think she’s beautiful.” Larry smiles. “Isn’t she a little young for you?” Ed asks.

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“What does it matter? Love is love. I can sit and look at her all day and be the happiest man in the world.” “How can you be happy? You’re paralyzed. You can’t dance. You can’t run. You can’t even fuck her?” Ed fires off the question and comments.

“Yep, and their wives and kids send me cards.” His eyes point to the side bureau with a stack of cards and teddy bears. “They visit when they can. They’ve made me videos too. I play them sometimes. Bill—he was the officer in the bunch—his daughter wants to be a nurse to help men and women vets. I tried to encourage her to look into medical school. Smart girl she is, but she told me she wants to be a nurse because they’re more involved in the day-to-day care of patients, and she thinks that’ll be more rewarding.” “How charming!” Ed says, sarcastically. He knows it, but he can’t help himself. “You have friends?” Larry asks. “One. His name is John. He’s a vet. Good guy. He’s there for me.” Ed recounts the friendship simply with the mental image of John carrying him up the subway steps almost every week of the year. There were times Ed dreamt of himself as a man, a seminary student, who lost his faith, became Judas instead of Peter, but John still carried him up and down those stairs. “Family? You got family?” Larry’s voice inquired. Ed was starting to feel tired. “No. Not really. I had a drinking problem and I was a real jerk. I was a real asshole when I drank.” Ed flashed through those memories and all the hurtful things he had said and done. “You mean that you were a bigger asshole than you are now?” Ed smiled and chuckled at Larry’s observation. He replied, “Yeah, I was. Hard to imagine, but I was.” “Why can’t you fix it?” Larry wanted to know. “I don’t know. There is too much hurt, too much bad blood. I stopped drinking, but once you say something mean it’s almost impossible to forget.” Ed thinks of his ex and all their good times and then the darkness, the rage he had put her through. She left and he couldn’t blame her. He’d leave himself if he could, and in fact, one time he thought about killing himself, but the train announcement said the line was experiencing delays due to switching problems. “You know what?” Larry asked with rather devilish glee. “What?” Ed asked, trying not to sound half-hearted. “She kissed me once,” Larry said with a sparkle in his eyes. He sniffled, like a bad cold was coming on. “Who?” Ed asked, but then his mind calculated, “The girl out in the hall?” Larry nodded, “Not just a girl, but a nurse.” He said it rather excitedly, like he had won a blue ribbon

There were times Ed dreamt of himself as a man, a seminary student, who lost his faith, became Judas instead of Peter, but John still carried him up and down those stairs.

“Why would I want to fuck her? I love her.” Larry’s response is almost too innocent for Ed’s ears. “Have you ever been with a girl?” Ed asks the man in the bed. “I was eighteen when I got injured. I’ve been in and out of different hospitals since then, until the VA sent me here because of the SCI program they have here.” Ed shook his head, “A virgin. Figures. I’m talking to a virgin.” Larry’s face seems wounded, ashamed. “I’m alive though. I paint. I can even write with that sight program. The computer program allows me to do that. My friends come and visit me once a month.” “What friends?” Ed asks. He feels a twinge of guilt for making fun of Larry about being a virgin. Ed forgot those early days of recovery. The VA experience he had was not pleasant nor was it gentle. There were no computers for him, and the nurses were usually other men so there was no feminine touch. Larry must’ve caught all the lucky breaks because to Ed the VA system was another opportunity to give to your country. “The five other guys that I served with, they visit me every month. At least one of them comes every week. Once a month we’re all together. It’s almost forty years that we’ve been doing that.” Larry has that proud face and smile again. “They’ve been coming to see you every week for forty years?” Ed asks, amazed. 54

at the county fair. Larry’s face was turning an unhealthy red and he was sweating. It came on suddenly and Ed was thinking of calling one of the nurses. A beeping alarm went off and then an overhead voice announced, “Code AD, Room 12.” A swarm of people flooded Larry’s room. Ed was slammed back into the wall with a quick “Sorry.”

Ed wheels himself out into the hall. He sees the charge nurse and he pushes his wheels hard before she thinks of doing a forty-yard dash. She sees him and walks over to the counter. He looks up at her, “What is AD?” She writes on a piece of paper. Ed tries to get a look at what she is writing. Her eyes catch him and their eyes meet. She finishes writing. “You have a computer?” He nods that he does. “Then here,” she hands him the paper. “Go do a web search and you might learn something. Plenty of information out there to explain what Larry goes through.” “How often?” Ed has the paper but he hasn’t read it yet. “Once a week at least. We’ve had a few close calls but the man pulls through by the grace of God. Don’t let Larry fool you. He’s a fighter. Never whines and never feels sorry for himself.” Ed sees the woman’s eyes returning to her clipboard. “You did a good job in there,” Ed stated. Her eyes looked sideways at him. “You being nice to me?” He nodded without smiling. She says, “I’m only as good as my team.” “Still, a good job,” he replied. She started to walk away, “All in a day’s work,” she said. Ed looked at the paper and saw in legible cursive,

“. . . Don’t let Larry fool you. He’s a fighter. Never whines and never feels sorry for himself.”

He watched the team converge on Larry. The beeping continued. He heard an order called out “Two inches nitro paste,” and saw the systolic number of the blood pressure monitor. It scared Ed because the number was in the high two hundred range. He angled his wheelchair to get a view but there was no line of sight. Ed watched the charge nurse move faster than most college halfbacks. The murmur dies down and there is a quiet heaviness to the room. Ed is anxious. He hears the sound of a glove snapped off a hand. The two nurses whom he had met earlier remain, as the rest of the team leaves the room, talking about the football game on the television down the hall. Larry is moved into another position. His two nurses are tucking and shifting pillows again and moving his limbs. They have a nice touch compared to the nurses that Ed once had. They could give meatpackers a tutorial on moving flesh. Larry has an exhausted, dopey smile. He is drifting off to sleep. “Is he OK?” he asks the nurses. One of them answers, “He’s fine. He gets one of these episodes once in a while. He usually has a sixth sense when they’re coming on, but he must’ve liked talking to you or something because he didn’t bother calling us, but don’t worry, we have monitors out there.” “Episodes? Episodes of what?” he edged closer with his wheelchair. “AD,” the young girl said, pulling off and discarding her latex-free gloves before she walked out the door. The other nurse tells Ed that he should leave so Larry can rest and recover—that he could come back tomorrow. Weekend visiting hours are longer.

autonomic dysreflexia.
* * *

Sunday morning. The phone rang. Ed started wheeling toward it. The phone continued ringing, “Coming . . . coming . . .” He wondered why he had never gotten himself an answering machine. He got to the counter, picked up the receiver, and said, “Hello,” trying not to shout. “Ed Priest?” the unfamiliar voice on the other end asked. “Yes, it is. If you’re selling, I’m not interested. If it is an animal that you want me to save, forget it. If I can catch it and the damn thing is worth eating, then it’s dinner. If you’re looking for money for hungry kids in some other country I can’t find on the map, I say start charity at home not abroad and—” the other voice interrupted him with, “No, Mr. Priest.” “You must be serious because nobody has called me Mister in a long time. Who is talking to me?”

55

“Name is Bill Parsons. I’m an old friend of Larry’s and,” the voice went on but Ed wasn’t listening. He realized that it had to be that Bill, Officer Bill. Ed said into the phone, “Sorry, sir,” remembering the man was an officer. “I was distracted for a second, and I didn’t hear what you were saying.”

Bill hesitated. “It took a while, but I got it out of him when we were alone. It seems that the nurse he likes has a boyfriend. Larry was crushed. That and his bouts of AD have been wearing him down.” “And you think I can change his mind?” Ed asked. Oddly, Ed understood Larry. Bill was quiet. “I don’t know you, Ed, but I know Larry. You might think that he’s a man who got the shaft at eighteen and his mind stayed eighteen while the rest of him got old and gray, like the rest of us, but Larry has always had this way of seeing the good in people. He must see something good in you. Did you know that he calls you the man in the angry chair?” “Well I’m in a wheelchair if you must know, but I assume that you know that already. Don’t quite know what to make of the angry chair comment.” Bill spoke, “Let Larry explain it. So? Will you come with us?” Ed agreed and Bill said he would pick him up later that day. Bill and Ed came together into Two West where the mood was somber. Ed could see it in the faces of the nurses, even some of the doctors. Larry’s two nurses looked at Ed as Bill pushed him towards the room. It was always an odd feeling, having someone else push him. He glided across the immaculate floor and saw all the faces for the first time. He truly saw faces for the first time, because all those other times he was so absorbed in the physical labor of pushing his chair, worrying about what was ahead of him, anticipating the worst, expecting it—all that negative energy blinded him from seeing the world around him. He turned the corner and made his entrance into the room. In the room were four other men. Larry was in his bed, looking stoic. The men looked at Ed. From their looks, they seemed to know who he was—which Ed assumed was not a good thing, but he didn’t give a damn. Ed wheeled himself in and parked at the foot of the bed. “Gentlemen, I know all of you have a long history with Larry, but I wonder if you would allow me a few words in private with him. It’ll be just a few minutes, I promise.” None of the men said anything. They looked at Bill, who had remained their leader over the years. Bill said nothing but nodded toward the door, and the men filed out of the room one by one. Larry said nothing. “I heard you signed a DNR order,” Ed said. In the room, it was just Larry and he, just a bed and a chair, two bodies, on that very clean stage, the white floor, under the bright sunlight cascading through the window.

He truly saw faces for the first time, because all those other times he was . . . anticipating the worst, expecting it—all that negative energy blinded him from seeing the world around him.
“I was asking if you would come to the hospital with us and talk Larry out of it.” “Out of what, sir? I don’t understand,” Ed turned his chair to get the phone cord straight. “Larry’s changed his mind and he’s choosing to be DNR. You know what that means?” Ed did but his mind was still processing the information. The worked-up voice on the other end decided to explain. “That means Do Not Resuscitate; that means if Larry has another one of those episodes the nurses and doctors are legally required to do nothing.” There was a pause. Ed could feel his tears forming. He didn’t know why. The voice in his ear said what he understood, “That means Larry dies.” “I don’t understand why you’re calling me. You guys have been visiting him longer than most people are married. I visited him once. What the hell could I say to him to change his mind?” “Larry mentioned you last night. You must’ve made some impression on him. The guys and I figured that it would be a good idea if you came along if you have the time.” Ed’s jaw started to grind his back teeth. This is not what he wanted to hear. These guys had it wrong because the only impression he ever made was a bad one. “I have the time, sir, but I think you’ve made some mistake. I doubt that I made a good impression. Quite honestly, Bill, most people think I’m an asshole and most times I think I’m one. (No argument there.) What made Larry change his mind about the DNR?” 56

“That’s my wish. I’m tired of the AD, tired of putting people through the crisis mode here, worrying if I’m going to stroke out or have a heart attack, tired of a useless body—I can’t even pee—tired of having one of those two beautiful nurses put on a glove and go exploring my bum because I can’t do number two. I’m tired of being a burden.” Ed moved his chair up alongside Larry’s bed. Larry’s eyes were watching him approach. Ed reiterated, “You feel tired of being a burden?”

“The chair is your anger. You hate it. You’re not the chair but you think it’s you . . . .”

Ed was silent for a moment. “You just might be right. I have my arms and I move around in this contraption. But you know what? You have lived more and done more than I have in all the years I have wasted in this damn chair being angry at the world, feeling sorry for myself.” Ed moved over to the wall. “Here, you painted these pictures inside your head. Good or bad, doesn’t matter. You did it. Out there,” Ed alludes to the five men, “are five people and their families who have been with you over decades. You changed their lives. They’re alive because of you. The nurses? Yeah, it is their job to keep your body alive, but they care about the man inside the body. Those people out there love you, Larry. Everyone one of them is devoted to you. You die and a part of them dies, a part of them remembers you. It’s your choice. But you also did something that I can never do.” What’s that? the man asked with his eyes. Ed’s fist hit the bed and he said loudly, “From this bed, from this room or whatever room you have been in—you have lived life.” Ed’s voice became serene. “You’ve created with your mind and loved with all your heart. I can hit this bed and I know you can’t feel it, but you have felt the world outside with all your spirit. How else can you paint or write if not with your imagination? That’s more than most of us have ever done, ever will do. You’re a better man than I’ll ever be. I suspect you always were. You know the amazing thing about you, Larry? You do all that from this bed.” As Ed went by the nurse’s station, he heard loud cheering. The charge nurse showed him the clipboard and on the board was a purple piece of paper torn in two. It was Larry’s DNR paper. The nurse smiled down at Ed. Ed would return, but that day he wheeled himself down the hall in his chair, feeling lighter, freer. He had lost his anger.t

“You’re not going to talk me out of it,” Larry said. Ed said nothing. He looked at the equipment around the bed, the nice folded sheets, at the shape of the two atrophied limbs under the sheets. Ed said nothing. Larry looked straight ahead out into the doorframe, seeing nothing, but knowing people outside were listening. “That is your choice if your mind is made up, but I have a question for you.” The eyes looking at Ed gave him the permission to ask his question. “You told your friend Bill that you called me the man in the angry chair. Why? I could understand the angry man in the chair, the asshole in the wheelchair, but you said the man in the angry chair?” Larry licked his upper lip. He looked up at the ceiling. It was an impatient look. Ed waited. “The chair is your anger. You hate it. You’re not the chair but you think it’s you. You see the world sitting down. Sure, you can’t walk and there are a lot of other things that you can’t do, but you don’t see that the chair gets you out there in the world, to feel the air, and to be around different people. When the anger goes away, it’s just simply a chair and a man. Nothing more.”

57

POETRY

Kelli Allen

Noon, Like Whiplash
Every episode of self-imposed solitude, the moments when she would lock herself into a room sometimes for hours, often for days, would always be followed by extravagant gestures meant to breed forgetfulness. My closets were alive with texture and ocular romance. I was treated to shopping trips, which included purchasing original designs from the best shops in whatever city we happened to be living at the time. There were expensive chocolates, gorgeous piles of books, cosmetics, shoes, any articles of expression or indulgence she could hope might make it easier for me to blanket the segments of disaster her erratic attentions invariably caused. I allowed this behavior for so many years that I no longer feel a prickle of shame when I find myself pressed against remembering. What else could we do, this single child and her raging mother offering gift after gift from a silver horn? The whole is never far, and one fraud is as easily dressed in silk as another. The extravagance ended entirely for one year when I was seventeen and found myself wearing so much of my mother’s blood that the new pale yellow sweater I adored became lost in awkward blossoms of sticky red. I remember cashmere softness before I begin to usher in flashes of the surreal scene of her fourth suicide attempt. Memory is unfaithful to intention, catapulting what we should recognize far from what our cognizance vividly defends. There is no room for apology at any moment in the scene, neither when it unfurled as quick thin tentacles or now, when recollection feels viscous and tastes of paint left to dry on a lid. 58

While tracking the minutes from the call to the sound of the gangly ambulance halting near my mother’s window, I focused on the saturation spreading peripherally down my own arms, soaking the delicate fibers of my daffodil sweater. There was a pattern forming over my forearms and onto the top layer of lemongrass-shaded sheets my mother bought to match a vase with similar colored latticework snaking around and through its glass. In those twenty-six minutes when I pushed my hands into her wet arms and waited for whatever help would arrive through sirens and stillness, I felt as though there were streaks of rain pelting far too slowly against my face and back. There was more wetness in that waiting than what could be described as measurable pain. The shape of her was an indication that something more had gone wrong, but I was lost in the absence of humming, and the reticence was a film like thin stained glass—fragile and something to be irrationally trusted. The reality of blood strips all defenses into patience, calculations descending into calm like knowing the old gods are present and full. Silence can be its own kind of vertigo, and there is nothing so quiet as keeping your mother alive and not being certain that you should. When her veins were finally bound and there seemed to be a cessation of rushing, both of fluid and breath, I finally looked at her face. The paramedics had obscured her mouth and nose with a dome of plastic and whatever color was left clinging to her skin seemed temporal and cheap. The sheets on her bed were beautiful, and watching her blood deploy itself over the quiet sheen of the cotton was a betrayal of sorts. I imagined she would wake at any moment; her mouth opening in an impossible “O,” and hordes of butterflies would emerge and become her hair.

First published in the author’s full-length poetry collection, Otherwise, Soft White Ash, 2012. 59

POETRY

E. Louise Beach

Least Needs
Mother is all transition now: rain to sleet, river to trickle, canter to halting walk. She no longer soars but hovers, fragile as lacewings or snappish wasps. Since I last saw her, her sky has clouded, and I try to gauge the lessening light, the gravity of her case. At night I find her wandering, wondering where my father’s gone, how long it’s been since he has taken her hand, whether Belle, his mare, has been corralled, fed, and accounted for. Least Needs is part of a song cycle entitled, The Edith Poems.

Jennifer Ruth Jackson

Plenty
Rumbling miniature avalanches Tumble in tiny tummies Bloat abdomens like balloons As though they are blessed with Abundance, not famine Words, air, and murky water Pass through desperate mouths Only thought to be somewhere Far away In the land of one dollar cheeseburgers Children starve as we tell ourselves It doesn’t happen in our Land of plenty

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Margaret Bobalek King

Maybe Suicide? A Bipolar Patient to Her Doctor
In the night, in the dark, I wake at four a.m. to see the streetlight’s web of yellow encircling it like a gauze wrapping placed there by the hand of God, the street-smart butcher of our souls. That shroud around that lamp could be for me if I do not watch my back in this black pit of silence and sad, old women weeping because their sons have gone to war or worse, returned with one limb gone, their heads bereft of sight, their senses failing. I ,too, fail to see or hear in the dark, in the night, or smell or taste the goodness of life. I long for a great God, a Yaweh, who will judge the promised ones and cut evil like a knife; or a modern savior Jesus, who will come down from his cross and put the world aright. But I rock and hug my knees, loving death as an end to my plight—like Sexton, like Plath, poets who knew; like Brutus who fell on his sword a suicide, when the noble Roman state was conquered. It was all that remained for him to do. Me too. It’s a strikingly original transaction after all, to give the devil his due, end it all, turn belly-up, give up the family pew; and yet, what makes me wait here in the dark, in the night of my own heart is the hope that somewhere another person understands my shrinking self is like a flower in heavy dew, that with the dawn a new self will emerge to burst forth on the plain of recognition and renew my faith in the order of things to make all this world new—a bright star of burning light, a precious person.

61

POETRY

Doris Radin

The Salt of the Earth
The gentle women the gentle women with strong hands ample bodies dark skinned women with accents from Jamaica, Dominica who found their calling caring for the sick women practiced in patience wise in the every day women who came to me stayed who bathed and dressed lifted and fed him spoke to him joked with him sang to him I forgive them their touching his body their handling his hidden parts I forgive them gentle with their strong hands they raised up the shovel spread earth on his coffin and back in my house of loss they enveloped me salt of their tears drying on my lips

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biographical notes

Jim Pascual Agustin lives and writes in Cape Town, South Africa. He graduated from Ateneo de Manila University in 1990. His poetry has appeared in the anthology A Habit of Shores: Fliipino Poetry and Verse from English, ’60s to the ’90s, and the journals RHINO and MPT (Modern Poetry in Translation). In addition, he has written four books of his own poetry Beneath an Angry Star (1992); Salimbayan (1994); Baha-bahagdang Karupukan (2011); Alien to Any Skin (2011), and has two books forthcoming in 2013, Kalmot ng Pusa sa Tagiliran and Sound Before Water. Kelli Allen is an award-winning poet and scholar. Her work has appeared in The Blue Sofa Review, WomenArts Quarterly, Bad Shoe, It Has Come to This: Poets of the Great Mother Conference, Foliate Oak, Greatest Lakes Review, Lugh Review, and elsewhere. She is the author of two chapbooks, Applied Cryptography and Picturing What Breaks, and her full-length collection, Otherwise, Soft White Ash, 2012. Allen says, “As the survivor of a childhood spent under the veil of a mother with a mental illness and now the parent of a child with bipolar disorder, my poetry has taken on a much more narrative shell.” E. Louise Beach is a poet, critic, translator, and librettist. Ophelia’s Flowers was performed at the Women in Music Festival at the Eastman School of Music; Elegy was presented at Pennsylvania’s Dickinson College; three songs from her song cycle, The Edith Poems, have been performed at Carnegie Hall and will be performed on August 31, 2013, at the University of Montevallo in Alabama. Debra Beauchamp from Caledonia, Ontario, Canada, wrote a collection of poems entitled A Stroke of Lightning which chronicles her husband’s stroke at the age of 51 and its aftermath. Beauchamp says, “My spouse has been disabled for more than ten years, and these poems reflect our journey through some difficult days and our renewed hope for better days ahead.” Ann Laurella DiFrangia is a doctor of osteopathic medicine from Akron, Ohio. Her work has appeared in Ohio Writer Magazine (2007), Out of Our literary magazine (2010), and the anthology Vending Machine: Poetry for Change (2010). DiFrangia was awarded first place in the Twinsburg Public Library Poetry Competition (2011) and honorable mention for a short story in the Marlene Stottsberry Writing Competition (2009) sponsored by the Greater Canton Writers’ Guild. Gary Doherty is a social worker living in Illinois. His works of short fiction have appeared in the journals Community Concierge (2010), Dew on the Kudzu (2011), and Tom’s Voice (2010). Doherty says he enjoys stories with the theme of “down and out persons living out their simple lives.”

Paul Alan Fahey is a writer and editor. His short fiction, “The Monarch Across the Street,” appeared in African American Review (2011). He wrote a WWII LGBT novella entitled “Bomber’s Moon” (January, 2013). He also edited an anthology of personal essays entitled The Other Man: 21 Writers Speak Candidly About Sex, Love, Infidelity & Moving On. His short fiction was published as e-books in 2012 and 2013. Fahey’s disabilities are psychological in nature. He says, “I’m a retired educator who had the great good fortune to gain the skills and experience necessary to write as honestly as I can about the world I know and about my lifestyle as a gay man…” JoeAnn Hart has written and published two novels, Float (Ashland Creek Press 2013) and Addled (Little, Brown 2007). She has won three major awards for her fiction—NE PEN Discovery Award (2004), James Knudsen Editor’s Prize (2010), and the Doug Fir Award for Environmental Fiction. Jennifer Ruth Jackson is a writer of poems and short stories from Antigo, Wisconsin. She has published poems in Falling Star Magazine (2012) and Star*Line Magazine (2012) and an aphorism published in Paper Nautilus, the 2012 edition. Jackson has cerebral palsy and says, “There is no rushing when you’re disabled, even when you are in a hurry. The extra time things take makes you aware of some of the small things easily missed by those who pass through life in a blur.” Dr. Kathryn Jacobs is a professor at Texas A&M University. She is also the editor of The Road Not Taken:A Journal of Formal Poetry. Her poem “Seventeen” was written about her son, Ray, who had cerebral palsy, Tourette’s syndrome, and central sleep apnea which took his life in 2005 at the age of 18. Her writing credits include an anthology of her poems, In Transit (2011) and three chapbooks. Predominately a metrical poet, her work has been published in many journals including Xavier, Whiskey Island, The New Formalist, Light Quarterly, Deronda Review, Wordgathering and Ibbetson Magazine. Margaret Bobalek King is a freelance writer and poet. Her poetry has appeared in The Poets’ Touchstone, Avocet: A Journal of Nature Poetry, Angel Face: A Journal of Sacred Poetry and The Northwoods Review. Her short stories and other works have appeared in The Dan River Anthology, The Northwoods Anthology and The Northwoods Journal, etc. King taught early childhood education for ten years and published a book, Tadpole Tales: Teaching Children Reading and Journal Writing, which she illustrated. Tim Kutscheid has studied at Graceland University, Ball State University, and Indiana University. His poems have appeared in St. Anthony Messenger, Mountain Living, and Asian Journal of Martial Arts. Kutscheid is currently incarcerated in Indiana. 63

Zoe Karakikla-Mitsakou is from the United Kingdom and has only recently begun writing. Her nonfiction, fiction, and flash fiction have appeared in Midwest Literary Magazine, several of the Static Movement anthologies, The Fringe Magazine, and 52/250 A Year of Flash (online), all in 2011. Karakikla-Mitsakou has two different autoimmune disorders and epilepsy, and she feels that these conditions lead her to explore some of the darker aspects of herself and of life, directly affecting her writing. Ellyn Laub is a writer from Coconut Creek, Florida. She writes poetry, fiction, and essays, and currently writes a humor column for the Jewish Journal and a monthly section of the Fort Lauderdale Sun-Sentinel. Her chapbook titled Imperfect Circles was published online through Trestle Press in 2011. Chris MacGilvray lives in Belfast, Maine, and is currently retired. She contributed to an anthology of poetry, titled Twilight Musings, published in 2005 by the International Library of Poetry. MacGilvray says, “I write poetry on all phases of life…You can let your mind soar when you write poetry….” John Mahoney is a lawyer and public defender for Hennepin County, Minnesota. His work appeared in four literary publications in 2012, impress Issue #3, Garbanzo Literary Journal, Northwind Magazine, and Petricor Review. Mahoney has systemic sclerosis. He says that this rare, incurable disease and its effects (e.g. pain) have added autobiographical elements to his poems. MaryAnn L. Miller’s work has appeared or is forthcoming in Fox Chase Review (2013), Musehouse Journal (2013), and the Philadelphia Poets Anthology (2011, 2013). Her book of poems, Locus Mentis, was published in 2012. She has a new collection, as yet unpublished, titled Tell. She says, “I believe the arts are the avenue to a productive and peaceful existence without subterfuge. A creative life… leads one to realize that everyone has a story worthy of respect.” Bob Nicolescu earned an M.S. from the University of Illinois in 2013. The author says, “I don’t think anyone can call themselves an artist, because there’s no guarantee they can create again. At one point, I might have been one….” Sandy Palmer studied graphic design at The University of Akron and is a freelance artist who works with colored pencil, markers, and pen and ink. She contributes to Kaleidoscope as a writer of visual artist profiles and an illustrator, having joined the staff as art coordinator in 2002.

William D. Perry was a freelance writer who retired from government work as a technical writer. He began writing during his service in World War II, which left him injured and using a wheelchair. He wrote in various genres throughout his life, contributing to numerous literary journals. In his later years he wrote a monthly column for an Illinois newspaper, Rock Island Argus Dispatch, entitled “Golden Oldies” in which Perry examined significant moments in history and popular culture. “Visiting with Alzheimer’s,” is based upon his experience with his wife who suffered from dementia. William Perry submitted this story in 2011 but sadly, passed away in December 2012. Doris Radin began writing poetry in response to an emotional crisis that occurred many years ago. She says, “Writing was therapy. (I did not choose the form, it chose me.) I leaned on it so hard that eventually I became a poet.” Her poems have appeared in many periodicals, among them, The Nation, Prairie Schooner, The Massachusetts Review and New Letters. Her book of poems There Are Talismans was published by Saturday Press. Judie Rae is a freelance writer and poet whose work has appeared in Tahoe Quarterly, Sierra Heritage, Sacramento Magazine, Nimrod, and Canary Online Literary Magazine, among others. She lives in the foothills of the Sierra, where she teaches English for Sierra College. Alexander Tan Jr., M.D., is a practicing physician and physical therapist who lives and writes in Mandaluyong City, Philippines. He was a fellow at the 36th Dumaguete National Summer Writers’ Workshop (1977). His short stories and poems have been published in several literary journals throughout the Philippines and the United States. He is a member of Mensa Philippines. Gabriel Valjan is a registered nurse living in Massachusetts. He attended the University of Leeds in the United Kingdom. He has written three novels produced by Winter Goose Publishing in 2012 and 2013. He has also contributed to The Doctor T.J. Eckelburg Review (2011), Kill Author, an online journal (2012), and to the Asbury Pulp Press with a short story titled “The Man” (2013). Valjan has a bilateral hearing loss due to nerve damage, and says, “Not hearing well has made me aware and sensitive to body language, to what people say and don’t say in speech and with their movements.” Gail Willmott received a B.A. in English and a M.Ed. in education, both from the University of Illinois. A Kaleidoscope staff member since 1982, Willmott became editor-inchief in July 2003. She says, “I am passionate, some would say obsessive, about my work with Kaleidoscope, and I enjoy the arts in nearly every form.”

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