The Taste of Air Read online

  The Taste

  Of

  Air

  LAM: A Love Story

  Richard Schad

  iUniverse, Inc.

  Bloomington

  THE TASTE OF AIR

  LAM: A LOVE STORY

  Copyright © 2012 by Richard Schad.

  All rights reserved. No part of this book may be used or reproduced by any means, graphic, electronic, or mechanical, including photocopying, recording, taping or by any information storage retrieval system without the written permission of the publisher except in the case of brief quotations embodied in critical articles and reviews.

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  Any people depicted in stock imagery provided by Thinkstock are models, and such images are being used for illustrative purposes only.

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  ISBN: 978-1-4759-6023-5 (sc)

  ISBN: 978-1-4759-6024-2 (ebk)

  Library of Congress Control Number: 2012921586

  Printed in the United States of America

  iUniverse rev. date: 11/26/2012

  Contents

  Preface

  Acknowledgments

  The Day My World Divided

  Mary Had a Little Lamb,

  My Lam Not So Little

  LAM—A Breath-Taking Challenge

  Am I My Genes? LAM Came Uninvited, Unwanted

  BUT YOU LOOK SO GOOD

  Nails On The Chalkboard

  Of My Soul

  ICU—Intensive Care for

  Those of Us Waiting

  Daze Becomes Days

  INTO THE SECOND WEEK

  DUKE and EVALUATIONS

  COMING TO DUKE

  We Are All In This Together and We Are Here To Do Our Best

  On The Other Side

  Leaving Hospital,

  Friday June 5th – Tag You’re It

  Friday June 5th – D Day,

  The Longest Day, A Day Later

  Rehab – First Session

  I Am a Glass Half-Full

  Rehab – Center for Living

  Bags. No Baggage

  Uh Oh, PFTs Down

  Caregivers, I Am Her Lifeline

  and She is Mine

  Help Wanted: Inquire Within

  Cliches

  The Lung Badge of Courage

  IT TAKES A LOT OF PATIENCE

  TO LEARN PATIENCE

  So What’s Chew

  “Take Your Best Shot”

  A Survivor By Any Other

  Name, So Far

  Survivor’s Guilt

  Miracle of Miracles – 2 Lungs, 1der of Wonders

  Thank God for A Coincidence

  The Fire Within Karyn

  The Other Side

  Airhead, Things

  Better Left Unsaid

  There’s No Place Like Hope

  Heroes No Longer Fly

  Through the Air

  With All My Breath

  The Center for Living, Last Days

  This Ain’t Baseball

  A Negative is a Positive—On Borrowed Time, On the Clock

  The Abbreviation of

  Genuine is Gene

  There are Some Battles

  Perchance to Dream

  My Birthday

  The Other Side

  Roller Coaster

  A Hearse Never Comes With Luggage Racks

  A Life Lost, A Life Given Back

  All author proceeds from the sale of The Taste of Air go to the LAM Foundation

  For further information on LAM or to make a donation, contact

  www.thelamfoundation.org

  For Karyn, my bashert

  Preface

  I fought with my demons to relive the painful parts of my wife’s chronic and potentially life-threatening lung disease. There are so many memories, some ugly, some sweet, and so many bittersweet and all subject to some secret whim when they surface. The past is always your past, yours, even when you try to forget it, the past remembers you. So I take pen to paper to honor the memories, and hope to let them go. It’s all I can do.

  My hope is that the family of a transplant donor will read this book and find it in their heart of hearts to contact the recipient of their loved one’s gift of life, to feel the breathing of their loved one’s lungs.

  I wish is that a wife suffering from LAM or another suffering from lung disease or cancer will give this book to her husband. She will say, “Honey I think you need to read this book.” He will take the book and read it, and after reading the Taste of Air will tell her that the book helped him and he discovered much about himself. I know I did.

  Every husband should write the story of his wife. From writing, I appreciate so much more about my wife, and my respect and love have increased tenfold. My wife suffered nearly a total eclipse of her air, but she is here and I am here, and today is much to celebrate. Today, my wife’s arms wrap around me like a promise, and that despite everything, all will be well.

  May this book in some ways be like when I was little and my mom would rub my back in slow strong circles, and say it would all be okay.

  The journey of a chronic disease can be a very dark place, and both caregiver and patient need a candle sometimes. I hope you find yours.

  To all who suffer, peace.

  Acknowledgments

  To Saul Skolnick and Alice Rydeen, both of blessed memory, teachers at Lynwood High School who turned on the switch

  To Sue Byrnes, and Fran Byrnes, he of Blessed Memory, founders of the LAM Foundation, who provided the searchlight at the beginning of the Tunnel, cutting through the fog of LAM

  To all the surgeons and doctors and nurses and staff at DUKE Medical Center and the DUKE Center for Living. In the beginning there was darkness and you separated the dark from the light and brought unto us the Lamp of Life

  To Charlie Levi, who lighted my load, and corrected my multiple errors of tenses, commas, and pronouns. Any errors remaining are the author’s own

  To Jake, my special Delta Pet Partner therapy dog, of Blessed Memory, whose warm glow brought forth the light of the Sun to all he graced

  To our Donor, of Blessed Memory, who brought forth light unto all the nations of our souls. We shall meet when our lives are complete.

  The Day My World Divided

  Both Sides

  I am sitting in the ICU but I cannot see you. Sitting in the waiting room, I straighten my back, and thrust out my chest. I am the bold knight just returned from the Crusades to rescue his fair maiden in ‘oft yonder ICU.

  A nurse came through the gates of the Castle Keep, the closed double doors of the Intensive Care lung unit at Duke Medical Center, and jubilantly told my sister, Pam, and me, that my wife, Karyn, would be removed from her ventilator shortly, and that she would be back to get both of us in 15 minutes. The nurse would lead us oft to Camelot, to rescue my fair maiden from the tower.

  Co
uld it only have been less than two days ago, that my wife received the miracle of life, a double lung transplant from a perfect stranger? What could be more perfect than a person giving you your second chance at life? Like a newborn baby, my wife had received the breath of life, and was newly born.

  Fifteen minutes. A moment in time, one of those moments, like JFK or 9/11, I will always remember where I was.

  And I am glad I am here. Yesterday I was home in Colorado, taking my first break as primary caregiver, taking care of the house and work. Last night, Karyn was called to the hospital as the primary recipient. I gathered our family at home as we all waited and waited and waited. After twelve hours, my sister Pam, my back-up caregiver, called and said the lungs were “no-good,” a “dry-run” and they were going back to the Residence Inn for some much-needed sleep. Early in the morning, before the sun could yawn, the phone rang, and Karyn said she was being called back again to the hospital, but this time Karyn was the secondary back-up. “Don’t call the family, I am just the back-up so it probably won’t happen.” At around 9:00 AM Colorado time, my cell-phone rang, and I answered it, saying, “You and Pam are going back to the hotel to lounge around the pool?” “No, a-jumping-out-of-the-phone, Karyn giggled, “They’re wheeling me into surgery right now, it’s a go.” I could feel her smile in my heart.

  I ran around chasing my tail, shaved, showered, packed, and within two hours, I was on a Delta plane heading back to the Promised Land.

  The miracle of Karyn, breathing on her own, on room air. Karyn, my wife of 37 years, the love of my life, enjoying her new lungs. Has it been 9 years on supplemental oxygen? Three years waiting for a transplant? I can wait fifteen minutes.

  Karyn had been through a nine-hour cakewalk surgery. I almost made it to North Carolina before she was out of surgery. A cakewalk? More like getting run over by a freight train. Make that two freight trains. The nurse had said, “No complications, all signs good.” What must it feel like to take a breath, to really breathe, and feel the warmth of your own breath? No tubes in the nose. No cords to get tangled in. No more tanks to fill, and lug around. No more dry nose. I could not wait. God, hurry up those 15 minutes. Your crusader has been waiting for this day for so many years.

  I looked over at the wall separating the waiting room from the cubicles of ICU, and imagined I could see through the walls like a super hero, see Karyn on the other side of the wall, and then through her, through her skin, her new lungs, and into my heart. God, I love her more than oxygen. ICU when I breathe. ICU wherever I go. I want to see you. Fifteen minutes.

  I slouch back in my seat, and closed my eyes to linger better in my memories and I am instantly transported to that first time I laid my eyes on Karyn. I am amazed that sometimes my vision gets better when I close my eyes. I remember Karyn from that very first moment at a summer camp, some forty-four years ago. You were with one of my friends and he introduced you to me. I do not remember any other part of that camp or any other person’s face other than yours. I can’t picture my friend, can’t see any other place or person at that encampment, but I can see you clearly sitting on that paint-chipped wooden bench.

  Reconstructing Karyn’s face on the canvas of my mind takes absolutely no effort. I see your tanned face, your browned legs, your white-pink neon lip gloss glistening on your lips, and even your pimply face. I look into your brown eyes, and was charmed instantly by your smile, and I am captured at that moment. I am smitten and I feel a little star struck.

  But you were with my friend, which meant you were off-limits, still I remember that scene as if it had happened yesterday. I conjured up another early memory and am transported months later and am at a youth group dance, and I watch this girl dance after dance after dance, as I stand off to the side. I am again mesmerized.

  The pull of Karyn Schwartz dancing is almost gravitational. I cannot move from this one spot the entire evening. I stare at her longer than an art history major might look lovingly at the Mona Lisa. There’s something beyond beauty in her face, something warm and smart and sensual and inviting and in the six seconds I look at her I actually fall in love, and in those moments, I can actually taste her kiss, the feel of her skin against mine, the sound of her laugh, and how she will look at me and make me whole. I remembered I wasn’t flighty or giddy, but grounded as if I had arrived home after a very long travel. As the dance ends, I am standing outside the steps of the dance hall with my friends, and as you leave you turn to us and ask, “Do you know Eric?” We said yes—how do you know him? With that amazing magnetic smile, you tell us to come to your dance the following week, and I am drawn, and I did and we do.

  I know I have met someone I will know for the rest of my life. The door to my heart had opened. Sigh. I C U. I still see that little girl with lips of white pink gloss. The pimples are long gone. I knew then, that I have a heart so I can give it to you alone. There really was no getting around her beauty. It was like a warm liquid spreading through my insides, and my perception is nine tenths of the law. I chuckled to myself as I know you do not consider yourself beautiful, but to me you not being perfect is my perfect. God, it is so true that big sweet memories come from such little moments.

  They say you never love anyone like the way you love your high school sweetheart. Maybe when an emotion is new, it’s like I’m testing it, checking it, to see what the boundaries of it are, and later I feel it even more, even better, even stronger. Maybe not as fresh now but it is ever bit as intense.

  At the dance, we shared the same air. The taste is fresh and sweet in my mouth. May I have this dance and the next dance, and then the one after that? I am in love with these moments and I just want to hug them and freeze them in time. Oh how I smile now as I remember the first time I was really in love. It was like waking up, like part of me had been asleep until that moment, like somehow I’d been waiting for something I hadn’t even known about. Remembering the past is surely God’s present. All of this seems as if it were yesterday, or forever ago, in that crevasse between time and space, and I remember it all because I remember it all.

  I woke up and rubbed my eyes. The mist of memories evaporated, and I looked up at the clock. Fifteen minutes had long passed. Flashing back to two weeks ago, and Karyn feeling so very sick and so darn exhausted. The pulmonologist prescribed antibiotics and bed rest. Karyn’s oxygen capacity was down to 8%, a mere 8% out of 100. I asked the doctor “How much of a window does Karyn have?” The doctor replying, “Karyn has no window.”

  Where the heck was that nurse? One hour. Two hours. Two and a half hours. Minutes passed so slowly they seemed sliced out of time. What is the delay? No one came to get my sister and me. I again buzzed to go back and visit. How many times was this? The ICU protocol is you pick up the phone by the old metal desk, and buzz to the main ICU charge desk, and they contact nursing. They announce your name when you are allowed to enter the ICU. Three hours. Four hours. Every minute seemed like an hour. How many times have I looked at the clock on the wall? I am back at school and see the sign by the clock in the front of the room, Time Passes Will you? Will I pass? Four hours. Seems more like four years.

  The wait was excruciating. Waiting for someone does that. Minutes turned to hours to a lifetime. Time, there is a weight to it, and right now I can feel it heavy over me. I paced back and forth and looked like a man whose wife was having her first baby. And I was. My wife was being reborn. What is going on? I want to see you.

  Finally, one of the nurses came out and said there had been an episode. Her tone was as delicate as a bubble of dish soap, thin, shiny and ready to pop. An “episode”. “What do you mean, an episode?” My heart sped up; I could feel it knocking against my chest and hear the blood pumping in my ears. Staff were unsure if Karyn had suffered a stroke, a seizure or something else. “An episode.” Her words moved through me, like fast moving thunderhead clouds transforming my landscape. Her words falling like a hard rain to the ground. Time expand
s when something terrible happens. Time no longer moved.

  The resident doctor-in-charge, with both hands in the pockets of his long white coat came out, and looked through the door of the waiting room. “Mr. Schad, can you come out here?” The doctor corralled us and spoke to Pam and me in his calming voice. He paused, seeming to choose his words. He looked like he had just eaten something that disagreed with him. I braced myself for the smack of the newspaper. Bad news has always been like being thumped on the head by something heavy. It comes all at once, without shades or degrees. The world goes from white to black in an instant. The world divides.

  One corner of his mouth curled up, as if he’d just stepped into something disgusting, “There has been an episode.” If this had been a movie, this is where the needle on the record player would screech off its track. I glanced up and found his eyes full of sympathy and it was almost overwhelming. A noticeable beat before he spoke again, as if he had lost the thread of his speech. The next few moments were brittle. “We’re not sure what happened but we are running tests. Karyn cannot move her entire left side. She cannot move her left arm, her left hand or her left leg. She may be placed back on the ventilator this evening.” I winced like the doctor had punched me in the stomach. Fear began to avalanche inside me, gaining speed, and mass. My face is a riot of fear. Every nerve in my body is crackling and my chest will not be quiet. A scorching ache bubbled back up inside of me, pain searing my chest. I have a million questions I want to ask. I have a million worries caught inside me.

  We think and hope that doctors “know” everything, but actually doctors are people like us. Many, many things we want them to know, just because we want them to know. It does not happen; it does not work that way. Doctors are not as powerful as we wish them to be. We wish them to be almighty because our life depends on them. Please doctors help my wife to be my wife.