The Taste of Air

by Richard Schad

  I know now it is silly to compare or rank diseases. I would say that CF, LAM, COPD or PF, is neither the greater nor the lesser evil. After all how can any of us gauge another person’s suffering? There is no one-upmanship in suffering. When people suffer, and are afraid we say all kinds of insensitive things. At essence, we are all simple human beings who are hurt and scared.

  My Grandpa Harmon said it best; always walk a mile in someone else’s shoes before you wish to own them.

  July 2, 2009

  There’s No Place Like Hope

  The Other Side

  I am not surprised how well Karyn has done post-transplant. Maybe some of the evaluating DUKE psychologists are surprised, as prescribed Xanax use pre-transplant listing was a major issue. But Karyn was only on Xanax as prescribed by her local doctor to reduce the anxiety of not-being-able-to-breathe. Who would not be anxious when you cannot catch your breath? Anyone? Ever been in the ocean and forced under by one large wave after another and not able to catch your breath? It’s an awful, awful feeling. With LAM, you always have that fear; it is always with you, that you can’t get another breath and come up with air.

  The fear of some on the transplant team was that Karyn would wither under the pressures of post-rehab. Succumb to the anxiety and fall apart. A transplant wasted. Those on the team were in error; they simply did not know Karyn. I know Karyn and Karyn is Hope.

  Who knows what we are really capable of? Who knows what Karyn is really capable of? The Xanaxers were wrong. No one can teach you how to be you. No one can teach me how to be me. No one could tell Karyn how far she could go or not go. No one could tell Karyn how much she could take. No one could tell Karyn when enough was enough because no one really knew other than Karyn, and Karyn had to learn it herself.

  Before Karyn was diagnosed with LAM, I was sure there were certain problems that were just too big for her, or us. But now I know better. I know that each of us can alter virtually anything that comes our way. All of us are capable of amazing things if we just set our own compass to it.

  Karyn saw hope. Karyn saw the light in the darkness of the dark. She had strength even in her physical weakness. She found grace.

  Without hope, I could not find a foothold in life. There is nothing healthy that can live in this world without hope. Hope is all we have or need. Sometimes hope is all that keeps me going from one moment to the next. It’s okay to have doubts, even as I hope.

  LAM can’t kill my hope. There is not a surgeon alive who can cut it out. With hope, I can deal with incredible hardships and keep going. Hope always reminds me that my heart is eavesdropping on my brain, that my heart pumps for my mind to believe in healing, and then for my body to reach it. Hope came from my sister LAMMIES and the LAM Foundation—they were my big bouncy house. No matter how hard I hit the wall, they cushioned my falls.

  Hope is the thread that weaves its way through my body, that connects my heart to my brain. My body listens to the signals of my spirit. God gave me hope when God gave me life. When I was born, I hoped to be picked up, changed, fed and coddled. What I hope for will change a thousand times throughout my life, but with the very last breath I draw, I will be hoping. I have faith in faith and I have hope in hope itself.

  With Hope, I tap into a power beyond myself. Hope can change the way I see and hear. Hope is what pushes me to the next step. Hope is what keeps me moving forward. Hope is its own reward.

  I have little pet names for those in rehab with Karyn. There is Coach, Sarge, Deer-In-The-Headlights, The Little Engine that Could, the Professor, the Beacon and Ever-ready. Karyn, the Cheerleader, always with a smile, always bringing hope, and sharing hope. Hope and optimism waft off her like a strong scent. I see Karyn with her lung torch held high in the air, The Statue of Hope. Her LAM was never contagious, but her hope certainly is. Can you feel the heat from her torch?

  Hope is the small voice that God speaks to my heart, instead of my head. Hope is a well, which I always drink from and my well is very deep. Hope allowed me to drink from the well when my body was too weak and my breath too thin. Hope gave me that extra-added little ooomph to heal. Hope is breath for my soul.

  I remember when I was little reading and re-reading the Little Engine that Could. Even the little engine was allowed to say, I think I can, I think I can. It was Hope that can make it and hope keeps me chugging along. The Little Engine is the Center for Living exercise rehab for my body and Hope is exercise for my soul.

  I keep hope brightly lit so everyone else can see it.

  I remember when I was young, well maybe not that young and reading Emily Dickinson “Hope is the thing with feathers that perches in the soul, and sings the tune without the words and never stops at all.”

  The hope Karyn has and shares costs nothing. Maybe Karyn should charge a fee for hope so we would have a better sense of its value. Step right up, ladies and gentlemen, Hope for sale. The line forms to the right, no pushing. But of course no one could afford it, for the value of hope, like the taste of breath, is priceless.

  Dear Donor,

  Karyn will have her GJ tube removed on Thursday. It is an in-hospital procedure. She will not be sedated and when she awakens, the tube will be gone. A five minute procedure and the tube contorting Karyn’s stomach will be gone. The GJ tube would get mucked up, and a caffeinated beverage is used to clean it. I shall remember the time I used regular Coke, straight from the refrigerator and sent milk-shake headache shivers into Karyn and rocketed her diabetes numbers into the stratosphere. To clean the GJ tube, Coke, lukewarm and diet. Repeat after me, lukewarm and diet. Clinic day is tomorrow, and blood draws, chest x-rays, the evil ABG’s, PFT’s, and a meet with the doctor.

  Each and every day is a gift, and I am feeling today that some presents are just better than others.

  My heart goes out to you, and I hope your family is healing,

  Richard

  Dorothy, with apologies. Now I am going to click my heels together and say, “There’s no place like Hope. There’s no place like Hope. There’s no place like hope.”

  Things always change which, for me, means that there’s always hope and I breathe in hope, and take very deep breaths.

  No pushing. Stay in line. We’ll be handing out numbers. The line forms to the right. Hope. Catch it.

  Never stop hoping.

  Heroes No Longer Fly

  Through the Air

  The Other Side

  Monday July 6, 2009

  When I was a boy, I thought that strong meant having big muscles and great physical power. But the longer I live, the more I realize that real strength has much more to do with what is not seen, has more to do with one’s own inertia, with one’s will to come to terms with the unknown paths of LAM and of lung disease.

  Most of my childhood heroes wore capes, flew through the air, and picked up buildings with one arm. They were spectacular and got a lot of attention, but over time, my heroes changed, so that now I can honestly say that those who deal with LAM, with lung disease, with the gauntlet of transplant, are my real heroes.

  I think as Americans our hero stories are of individuals who overcome adversity. The determination and focus of the pilot who lands the plane without engines, or the hiker that survives a fall and hobbles out of the wilderness with a shattered leg is like a Lammie’s or Lungie’s journey through loss and transplant.

  You take it one step at a time, focus on just getting through the wilderness of the day, the week, the next set-back. But, for Karyn and the others transplanted, the story does not end there. They are never out of the woods. They are caught in a snare that they can’t extract themselves out of.

  I no longer believe that heroes are extraordinary people. I believe they are everyday people like Karyn, and others in her class at the Center for Living, Gene, John, and Paul. They are just ordinary people in extraordinary circumstances. These are my he
roes, for they have learned to love their journey through the wilderness, and not just the destination.

  Dear Donor,

  Having LAM and a lung transplant means that each day I live is a mini-survival story

  We walk a hard road. Every Lammie and Lungie clears the roads for each of us, and hopefully, relieving some of our own potholes. The clock never truly stops, even when things are going well. It’s always there ticking in the background. You have to have it in you to keep going, for however long, to whatever place, taking one step at a time. I live that life with joy; that is my victory and hopefully, that may very well be a gift to others.

  Each day I live, I honor you, donor, my special hero, who-has-no-name. You didn’t fly through the air, but you gave me air. You didn’t lift any building with one arm, but you lifted me up with your two lungs.

  You were only one person in the whole wide world, but to me, you are my whole world, who selflessly saved my life.

  The road ahead is not easy for any of us, but all of us ordinary people will live it to our best.

  Karyn

  July 6, 2009

  With All My Breath

  Both Sides

  Karyn’s lung collapsed the first time in 1980 and again with her pregnancy in 1981. Karyn had an angeiomyolopoma removed from her kidney in 1991. In 1999, diagnosed with LAM, and now sucking air, not able to catch her breath, and no longer even able to keep up with herself.

  I would watch Karyn breathe; looking like a fish out of water, not able to get enough air, even with supplemental oxygen. At night, while she slept, I would place both my hands on her back, wishing, praying, for my own lungs, my own oxygen, to somehow magically flow from my body into her lungs, and make her whole. Wishing that she could take the breath from my own lungs, and be able to hike, and dance, and play once again.

  This morning I pass so many people busy with the thoughts of the coming day, not aware of how wonderful it is just to breathe in and out. Most do not care enough for air. The average person inhales about 26,000 times a day, taking in about 14,000 liters, or about 150 bathtubs’ worth of air. After all, air is not diamonds or gold, fine wine or a new car, or fashionable attire or a painting, something you can admire and hang on the wall.

  When breathing for Karyn could no longer be taken for granted, when just walking across a room or up the dreaded stairs became a high act of determination, Karyn saw wonder in breathing, and caring for air; she came to care more for the things air has to do with. People and objects changed for her, came closer, became very dear. When she could no longer take in enough air, she became quietly more real to herself than in the Zion and Disco years, when the taking in of air, was a simple, hardly-to-be-thought-of-fact.

  Today, Karyn is breathing air right in front of my face. She sits still as her lung pressure brings air in, and it goes into her nostrils and mouth, the back of her throat and into her lungs and belly. The air she is breathing, I am breathing. We are breathing it together. We are sharing the same air. Those trees outside our room are also breathing, and making our breaths possible. Her breath is like a river of air, meandering in and out of her body, quenching my thirst for her.

  Dear Donor,

  It’s me Karyn. Or should I say, It’s you.

  I used to take some things for granted, like the love of my husband and my children, the sun rising tomorrow, and the breathing of fresh air from my lungs. But no more. I remember Richard trying so very hard at night while he thought I was sleeping, to pour his breath into me through his fingers. When something is taken from you, when I could no later count on my next breath, it makes me realize what the gift of your lungs granted me.

  Too many people take breaths but do not give breaths. God knows, I so feel your breath, donor, and am thoroughly impressed.

  On our walk tonight around the Residence Inn this evening, the air whispered and I looked skyward at the moon. It seemed so very far away and yet close enough for me to touch. Man in the moon, can you feel my breath?

  I took a deep breath as we strolled around the Residence Inn, enjoying the smell after rain; sometimes just a simple smell can make me happy. Did you like the smell of the world after a cleansing rain?

  Breathing the air you gave me is nothing less than a particle of grace.

  No longer taking things for granted.

  Thank you Donor, and thank you God.

  With you,

  Karyn

  Dear Donor,

  I remember when Karyn could not take in enough air, like her lungs had pinhole leaks. Last night, we walked our evening mosey around the parking lot of the Residence Inn, doing the loop again and again and again. Our hands come easily together and the stars seemed to pulse with brightening light, and I felt the slow breathing of the earth beneath us. Is that you?

  I inhale, exhale, look up at the sky seeing my lucky star, and at Karyn, who had once again handed me her heart.

  Karyn is now asleep and I stare. She draws in air, a long slow draft of it, and as she slowly releases it, her breathing falls into the easy rhythms of sleep. The breath that escapes from Karyn is dazzled, and I breathe it in, with a sigh. Donor, I can taste your breath and I am sighing.

  After all these years. Karyn still takes my breath away.

  The gift of breathing you granted us. I will pass it on,

  Richard

  Thursday July 2, 2009

  Dear Donor,

  The GJ tube is removed. Five minutes and the tube contorting Karyn’s stomach is gone. Clinic day is tomorrow. Karyn aced both her swallowing and reflux tests and the dreaded stomach wrap is not needed. I wonder had she failed the tests and if a wrap would have been needed. With Karyn not wanting the wrap, would the doctors have won that argument? This boxer in my string would have won this bout, “stomach down.” I bet all of the staff would have needed Xanax after that battle.

  Sunday July 10, 2009

  Our 38th anniversary and we celebrate with another couple, Gene and Malinda Holley, from our rehab class. Karyn bought a pedometer and set a goal of 10,000 steps in a day, about 5 miles. (On Wednesday, she reached her goal).

  As we walked around the Residence Inn this evening as the sun was slowly setting, and a welcome motion of air produced a slight cooling breeze whistling through the foliage of the nearby trees, a son of a fellow lung transplant said it best, Karyn looks vibrant.

  Karyn’s brown eyes twinkled and she gave me a sly smile. Her eyes were dreamy and the smile that slightly parted her lips was pure and sincere. Her breath so very warm in my ear. Pulsating with life, the word vibrant ringing in my head like a bell, shining and pure. I could hear it pealing with its true meaning, and I said, as if I had just realized it, that Karyn is vibrant.

  The next morning we visited a post-lung transplant and fellow rehabber who has been in the hospital over 6 weeks. Karyn’s grace and vibrancy touched him as well.

  Two more rehab sessions Monday and Tuesday and clinic on Wednesday.

  Donor, thanks for watching over us.

  Richard

  The Center for Living, Last Days

  The Other Side

  Monday July 13, 2009

  Dear Donor,

  Like High School’s finale before graduation, the last bells are tolling. Karyn grabs phone numbers, addresses, and e-mail addresses. The electronic ways replacing the yearbook. That same excitement of the final week before you make your own way in the world. Karyn is graduating DUKE.

  We will always remember the blessings that were bestowed. We will always remember that riches are not retained until returned.

  We’ve been through much and will go through much more. Traveling 2gether is more fun, whatever life and love may have in store; 2 is always preferable to one. Karyn’s graduation becomes my pleasure; her happiness is mine, a double treasure. No one could be more blessed than I with
her. When you have seen how fragile life truly is, you are indeed blessed.

  Love’s a very generous reward. One of us is the tune and one of us the chord. The music in my heart is very lovely as the melody plays on.

  For every ending there is a new beginning. For every memory, there is a dream ahead, whisking Karyn to the corners of her smiles.

  The harmonies of the song play, of pride and sadness, of those who are here and those no longer with us, the dawn and sunset of new and the old, the bittersweet goodbyes of looking forward.

  Dearest Karyn, I am so very proud because I am a part of everything you do. I want a bumper sticker on my car that reads, Proud husband of an honor student at the DUKE Center for Living.

  It is time to say how much in love I am with you. How many years ago did you write in my yearbook, and I in yours? The melody plays on. How sweet the rhythms have become.

  This morning Tracie, our post-transplant coordinator, told Karyn she is good to go after completing her final two sessions, today and tomorrow, and labs on Wednesday. Karyn will leave DUKE this Saturday as the journey moves back to Colorado.

  2 Good

  2 Be

  4 Gotten

  God, give me these moments, please, forever. Replicate it for me, on demand. The gift of memory; now that’s a true gift.

  With love,

  Richard

  Tuesday July 14, 2009

  Dear Donor,

  Karyn is at rehab now, her last day. The number is zero. Did I say zero has no meaning? There is much meaning in today.