The Taste of Air Read online

  My head swiveled from doctor to nurses. Pam and I had been looking forward so much to seeing Karyn breathing on room air. A searing pain clawed through me. This was a Disney movie gone haywire. Pam and I trudged back to Karyn’s cubicle. That day, those steps became the longest forty feet a man walks in such a short time.

  Karyn was working to focus on us; a deer in the headlights had more expression. My wife looked powerless and scared, so confused, and I felt my heart somersault in my chest. Her eyes would widen suddenly, then droop down, then widen suddenly and dart around the room, a haunted look. She was swimming through cloudy water, not able to see clearly. Her head turning like an antenna trying to find a signal. Sadly, someone had hit the dimmer switch and turned down her whole being.

  Mostly, I remember her eyes, unusually wide open and intense and staring hard, directly at me, and yet seemingly without comprehension. Her eyes sunk deep into their darkened sockets, like a prisoner of war, a prisoner of her own war. Her wonderful grin began to look pasted on her face; she had become her own shadow.

  Pam stood sentinel on the right side of the bed, and I took my wife’s left hand into my hand. I was holding her hand but she did not realize it. I grasped her hand, and held it next to our bodies, a bridge between her heart and my heart. Her hand and arm were limp. I held her hand for I feared if I let go, she would drift away. I felt her drifting away, like ice on a sea. I just wanted Karyn to come back to me. Karyn tried to send a message to her left arm, but her brain sent it back: return to sender, sorry no such address.

  I swallowed the lump in my throat and tried to sound normal. “Hi,” and Karyn responded back with a puzzled, “Hi”. She stared blankly out, no expressions of sadness or worry or surprise. Pain leaked out through the cracks in my voice. My jaw trembled and I asked, “How are you?” and Karyn replied with a one word answer, “Okay.” Her eyes blinking, struggling to focus. My voice quavered and I cleared my throat. I asked Karyn what my name was, and Karyn could not answer. Karyn did not know my name. My wife could not tell me who I was. I swallowed hard blinking back tears. Words became my tears. Stick and stones and disease can break bones, but words kill. Me. Without.

  My heart froze and a lump of coal formed in my throat. I looked down at my hands, my brow furrowed; I am struggling with how to say something. The lumps are choking off my throat. I could not draw enough breath to make a sound. There are so many words, but no words for what I am seeing, for what I am feeling.

  Finally words spill out of me that I manage to squeeze through the narrow opening in my airways, “Karyn, who am I? And Karyn did not know I was her husband. She did not know my name. I pretended I did not feel like my heart was breaking. I shut my eyes for a moment, willing it away. Time slowed, something shifted in the room. I swallowed an anguished scream. The words burned leaving my mouth, “What do you see when you look at me?” “Butterflies,” was the one-word reply. I felt my soul slipping away and I had to take deep breaths and put my hand over my mouth. I could feel all the steel come out of my shoulders. The air felt so heavy, my throat felt like it was closing. The air tasted so heavy and thick, I could hardly take it in.

  Vast gaps between her tiny islands of memory, and an emptiness. Her memory gone, evaporated, as if it had never existed. I felt my wife, my life, being erased. Her memories swimming like little fish that she snatches at, and they wriggle out of her grasp.

  An earthquake cry shuddered my entire body. I gripped fistfuls of sheet fabric to keep from falling off the edge of the earth. My body quaked for what seemed like an eternity. Tears welled in my eyes, and hot tears burned my cheeks. My eyes squeezed shut, my knuckles white. I bit my bottom lip so hard I thought it would bleed. Things are coming apart inside me, tearing loose from their foundations and scraping my innards as they fall. I was using every muscle to hide my heart break. My heart had broken, had broken for my wife.

  I was falling fast without a parachute, so quickly no one could catch me. It was horrible asking these questions. Worse than horrible. I felt like I was chewing nails with each question, and more nails were being forced into my mouth.

  Her face, a confused choppy mass of half-remembered feelings, insubstantial and slippery, gone before she could even attempt to name them. Her mind trying to reach her memories, but it flutters away, like ashes caught in a breeze.

  Her face and eyes roaming the room, looking for a signal, like trying to find CNN in rural Albania. Why can’t the doctors just transplant her memories back in her head? Don’t we have neat index cards for our brain? Karyn, the love of my life, don’t you know I am your husband? I am falling, and there is no bottom.

  I shook and shook. Am I moving or has the entire hospital come unhinged? Struggling to regain my composure, I grasped to be strong and calm for Karyn. No questions came from my wife, my love, my cubby. Karyn only responded with one word answers to my questions. Karyn cried out in pain, “I want my mommy,” who had passed away more than thirty years ago.

  Waves of hurt crashed into me again and again. Karyn was not the only one that had been run over by a freight train. Make that two trains. I felt a thousand eyes on me. New lungs abound in the ICU cubicles around me, but no one is breathing.

  The ICU visiting hours end at 9, and as we were leaving for the evening, I asked Karyn. “Who she wanted to send her kisses to?” Avah, our grand daughter, almost 1 1/2, was her one word answer. “Who else Karyn besides Avah? Devon” (our son)? Carly (our daughter)?” “Just Avah” her pointed reply dripped venom. Her words sharp as razor wire. A bite to her tone. Karyn sent me a chilly glare that could end global warming. Does she not know our children? More waves crash into me and I am drowning. I can’t catch my breath like I am being held underwater. The only memory to float to the surface of her mind was Avah.

  No one has said any of the usual things: She’ll be just fine or Don’t worry or She’ll be better soon. Tidal waves of dread pound me. My face grows hot as the knowledge explodes inside of me like dynamite. Devastated. I said “Goodbye and I love you.” I hugged her good-bye as if I was leaving for a two year stint in Afghanistan. As I turned to leave, I saw tears in the eyes of one of the nurses.

  How do people breathe in these situations? Passing a mirror, I looked like I had been hit by a wrecking ball. I want to hurl a building at God. I take a breath and exhale with enough force to blow the paint off the walls. How do people function when they feel like this? My stomach is churning, roiling. I took a deep breath and another deep breath and exhaled a tornado.

  I drove home feeling strange, like I’d somehow lost part of myself, like somehow part of me was still with her. My thoughts are steering me right into the mental breakdown lane. I felt weak and shaky as if I had just stepped off a roller coaster.

  That evening was the longest of my life. The sky drew a black curtain, the moon hanging silver in the sky. Like Pig Pen from the Charlie Brown comic strip, my cloud hovered over me, dark and daunting, and devoid of any silver lining.

  I was foolish to try to sleep. I tossed and turned and turned and tossed. My brain raced madly changing gears so rapidly that I could not hold onto a thought long enough to examine it. I breathed deeply, taking in great gulps of air, to get enough oxygen to my brain, to fend off paralyzing images. The taste was bitter. Thoughts kept swirling in my mind, faster and faster. I want to stop them but I cannot.

  Magic Eight Ball, will it ever get better? I guess that for today, the answer is still No, Not yet. Magic Eight Ball says, answer hazy, ask again later.

  Will it ever get better? It better.

  My wife did not know who I was. My wife’s life was being erased. My wife did not know she had had a lung transplant and that she could breathe on room air. A miracle had happened, and Karyn could not appreciate that after nine years living with the aid of supplemental oxygen, she could once again breathe. I am so very, very sad.

  Feelings were deep and clear. Sorrow. Regr
et. Blame. Anger. Helplessness. All taking their separate turns to advance and retreat and then advance again, holding hands in varying combinations, but the most powerful feeling of all was one without a name and therefore unspeakable, a recognition of having lost forever someone singular and irreplaceable and beyond valuation.

  The pain in my head was crippling. I fought with myself the entire night. Karyn could breathe but I could not catch my breath. Her name pulses in my head like a heartbeat.

  All my thoughts were having their own conversations. What would I do? How can I get through the rehabilitation process when Karyn has suffered a stroke? Karyn, oh Karyn, what can I do? What should I do? Like dominoes, one thought triggered one into another and into another and another. How will I handle work? How can we get through this? Can we? How can I build a bridge to where she went?

  Grief rose and spilled. Sobs jolted my frame. Crocodile, hot tears burned my cheeks. A fire blazed in my stomach, a pit in my stomach a mile deep. I sat up in bed and hugged myself, and the pillows were wet with tears. I would give anything to have her dry my tears. Forever I will share my thoughts and feelings with her. Forever, except for right now, and right now, I really need her.

  Karyn is everywhere with me, yet she is not. I burrowed around in the sheets until I became wrapped up like a mummy.

  My heart aches for both of us. If only I could just put a bucket of water on the episode, like on the Wicked Witch of the West. I now understood what it meant to have a broken heart, because mine hurt, and it was hard for me to breathe feeling I was suffocating.

  I picture everything I love melting away. I am tethered to Karyn and the weight of hurt is beyond unbearable. When you have everything, sadly you have everything to lose, Everything. Without Karyn, the world is smaller; without Karyn, I am smaller.

  They said fifteen minutes. In 15 minutes I will see my wife breathing on room air, but everything can just change in an unnoticed moment, the blink of an eye, the remembering of times long ago, the taking of one breath. I walked around in a mirage of certainty but everything is uncertain, and fleeting and fragile. My own breath catches for a second, and I swear my heart stalls.

  In so many ways, everything about life has overwhelmingly changed, but in other ways, life is exactly the same. Karyn is alive. Karyn can breathe on room oxygen. This I can handle. I stay in the dark quiet, getting my breathing under control, my life under control. The waves have stopped, the pounding is receding. This I soak in.

  When life sucked in the past, Karyn was my lifeline. Karyn is the glue that holds me together. So many thoughts in the ocean of my mind, the dam breaking. So many things I’d assumed I would revisit, oblivious to the hot breath of time on the back of my neck. If only.

  Why isn’t there a manual to consult? Oh yeah, I remember my mother’s words—there is no manual to consult, this is just life.

  I finally fall asleep for an hour around 5:00 AM. I am reminded when I awake, my eyes are not just red, but puffed out, swollen, like I am back in my childhood bedroom, waking up from a nightmare, or after seeing Old Yeller. But, there is no nightmare; it is my life, our life. The spill of morning sunlight through the cracked opening of the curtains shone on the mirror, and I looked like I had been in a nuclear blast. My eyes looked like I had mistaken cranberry juice for Visine.

  Was God listening to my prayers? Maybe the answer isn’t to ask for reasons why. Maybe I shouldn’t be praying for all my problems to go away, but for strength and wisdom and faith to face those problems. Listen to my heart, that’s God talking to me. Pray for God to guide me, and keep looking and asking questions until I know I have the answer. Finally, God answered the phone, which I reminded myself is never busy, and finally a wave of peace settled over me.

  A strange calmness hugged me. I feel the tiniest of tiny things spark inside me, a little flame at the very bottom of my stomach that made me unafraid.

  Time divided. The tiny space between then and now, between before and after. One of those moments like This Side and The Other Side I will remember forevermore. In that moment, I knew I could handle whatever I had to deal with. Karyn had suffered a stroke, and I would be there. By her side. By my wife’s side. We would work through it. Move together as always, like a puzzle piece that fits, hand in glove, key in lock, arm in arm. There’s that fit, a feeling of rightness.

  Feeling afraid was awful but feeling helpless was even worse. I still felt hollow, shell-shocked, but I knew then that I could get through this no matter what. I can do this, one step at a time, one breath at a time. Things aren’t as bad as they seem; the only thing I know is that they aren’t as good as they should be.

  I just needed to get through this day without crumbling. Better to face the scary things than run away from them. I knew that the sheer act of survival was going to take every ounce of strength I had.

  Nothing else matters, but the things that truly matter, and Karyn matters most. I took a deep breath and tried to relax. I tried to dive down to calmer water. I am about to dive in, and God only knows how deep the water is.

  Mary Had a Little Lamb,

  My Lam Not So Little

  This Side

  Dear Diary,

  Looking back in time today and remembering high school, where l ran track like a gazelle, and held my breath effortlessly on a synchronized swimming team. Looking back to our honeymoon in 1971, and hiking Zion and Bryce National Park, up over 10,000 feet, and it was my husband, Richard, who could not keep up with me. I romp up the trails and I am looking back. He is gasping, holding his knees. Dancing disco every Friday night in the late 70’s, dance after dance after dance, and my husband could not keep up with me. He must sit one out; even his sweat is sweating. Now I cannot even keep up with me.

  Remembering, that it all started with two collapsed lungs, one in 1980 and one in 1981. The second collapse, ah that horrifying pop, and that familiar crushing sensation like a boulder on my chest. On the second pneumo, the physician smiled and said “We have good news and bad news—the good news, you are pregnant.” The bad news? Your lung has collapsed.”

  Both pneumos were treated but the significance of each one was entirely overlooked. The real bad news splashing across my front pages would wait. I recovered from the collapses, unaware they were a symptom of something more serious.

  I busted my butt exercising regularly, but still I complained to my doctor that I could not breathe when I worked out. The harder I worked out, the further I got behind. I was diagnosed with exercise-induced asthma and prescribed inhalers to keep down inflammation in my lungs. Despite the use of my inhalers, my symptoms gradually worsened until even walking caused me to feel out of breath and my heart beat ever-so-quickly.

  My doctor performed a stress test on my heart, which showed my heart functioning well, but the pulse-oxygen monitor revealed the levels of oxygen in my blood were abnormally low. The medical staff decided the monitor must be malfunctioning. The doctors could not put two and two together.

  I remember when the bottom fell out. It was 1999, and on a mountain trip with friends, I could not walk from the car to their home. What is wrong with me? Why can’t I breathe? Am I broken? My doctor sent me to a pulmonologist, who ordered one CT scan, and then another CT scan. The tests showed a honeycomb of cysts where there should have been healthy lung tissue. The doctor checked my medical records and discovered the lung collapses, and an earlier surgery to remove a tumor on my kidney. Two and two was being added—4 ME.

  It was a late Friday afternoon in June, when I was diagnosed. Life changed in the blink of an eye. Everything is fine until it isn’t. There should have been a warning flare of danger. The doctor, rolled his stool closer to us, his face wrinkled and spasmed, as if he had just been bitten by a mosquito, and said to me, “Karyn, do you know what LAM is?” And I responded with a look, only I own, “If I say no, can I have something else?” The doctor kept talking, “I have hear
d about LAM. I have only read about LAM but I have never met a woman who has LAM.”

  My future was folding in on itself. We are not meant to be able to see into our future. I had been feeling breathless for a while. But it was only after many years, that I sought out doctor after doctor. I had felt a little breathless, especially going uphill and climbing stairs, and riding a bicycle, but I thought that was normal. A person can lose up to 50 per cent of lung capacity without noticing much change. I think my active life masked my breathlessness, as my muscles were efficient and I was not overweight. The more I tried, there just was no improvement.

  We never see the ambush coming, do we? That “You have LAM,” “You have a lung disease” moment that pops the bubble. “You have LAM.” Words that can change a world.

  The doctor had me at “Dying.” I wept, feeling all my rage, confusion and grief pour out of me in one mighty rush. I could have drowned in my tears. Hurt was stamped on my face. The doctor left Richard and me in the room alone, and each time he returned I was crying. My thoughts roamed to my mother, who had died of a brain tumor, of cancer, at age 52. I had always feared I would die at the same age.

  The doctor put a period at the end of a sentence that wasn’t supposed to have ended yet. That Friday I was told I had ten years to live, and that there was no treatment. My heart pounded; my brain screamed out in disbelief. I went from thinking there was something a little wrong with my lungs to thinking I am going to die within the next 10 years.

  There was no cure. LAM. I spat the words out of my mouth like poison. My only hope was a lung transplant. The doctor’s words ached like a sucker punch. Maybe it’s more of a stab. Whatever it is, it hurts. Whoosh, I felt the air go out of my stomach and the room. Whoosh. I can feel something inside of me unraveling, like the release of a helium-filled balloon. Can’t someone fix it? Can’t someone make it go away?