The Taste of Air Read online

  It’s a Once Upon a Time tale, framed within the magical thinking of a children’s tale, where the forests of DUKE are enchanted and the lung monsters vincible, where love and courage always trump danger.

  A wealth of emotions bubbling out and over. Donor, as you know, Karyn was snatched back from the foggy line where life rubs shoulders with death. A life lost, a life given back and my heart overflows. You can feel the good air in and around her.

  The beauty of Karyn’s message is that it is eternal. Karyn had hope in the beginning of her LAM struggle, and has it today. LAM exploded in her body, but it never ever touched her heart, and that’s where hope lives. I search my heart for some warm memories. Who says reruns are awful? I close my eyes and it is her I see. I think of love and it is her.

  Donor, there is an unbreakable bond between us,

  Karyn, I love you; three very tiny words, they take up so brief a space, but they fill up all the space in my heart,

  All my love,

  Richard

  Dear Donor,

  You are etched upon my heart forever.

  I have outlived my original expiration date, and each day is a gift to me that I seize. I walk my dog and not my second dog tank. This journey has been incredible. A reminder of how precious life is every day. If it was taken from me tomorrow, I would be okay because I have learned to forgive easily, to appreciate the sunrise and sunset, and to love with my whole heart.

  My steps are blended into Richard’s as we walk, our hands come easily together. The sky is clear and blue, and I see us talking, laughing, planning dinner, deciding what movie to see—I mean these are not life shattering moments I am talking about! They are just good days when we share our lives. I am struck by the simple truth that sometimes the most ordinary things can be made extraordinary simply by doing them with the right person. I inhale the moment often, every day.

  While every moment of my life is a “dream come true,” as my granddaughter says, I do have fears. Fears that I will have a rejection (don’t take it personally) that can’t be treated, fear of getting sick, or maybe my LAM will come back, but I try to put all that in the back of my mind. I try not to worry about life too much because I have read the last page of the Book and it turns out all right. I suppose we would all prefer our fairy tales to be simple, but they’re not. The future will reveal itself when it’s time. I can wait.

  We have to live our lives as best we can in the present, and living and loving as much as we can every day with no regrets. LAM, COPD, CF, automobile accidents, heart attacks. That darn bus. We just never know. Time has a way of zipping by, the mile markers racking up so fast, whole decades disappear from sight in the rearview mirror. Whoosh!

  Maybe some can afford to wait, maybe for them, there’s a tomorrow. Maybe for them, there’s one thousand tomorrows, or five thousand, or ten thousand. So much time they can bathe in it, roll around in it, let it slide like pennies through their fingers. So much time, they can waste it, but for some of us, there is only today and the truth is, you never know. As you and I know, Donor, every moment you have is precious.

  My air flows in and out of your lungs, taking sustenance into my body, and delivering my leftovers back to the world. The flow of my breath, from my first cry to my last exhale, is my basic function, connecting my heart and brain to life. You and I have become each other’s air. I can taste it.

  You and I Donor are destined to share our souls now and forever.

  If anyone asks about Richard and me, just tell them we are out on a long walk, with our dog, breathing in the sky and sunlight.

  Sometimes life may be hard, but it comes as natural as breathing.

  With all my breath,

  Karyn

  Dear Donor,

  Five years ago today, I adopted Willie and Jake from Colorado Sheltie rescue, they became my two Delta Pet Partner therapy dogs. I had lost my forever dog, Tyler, suddenly, and wanted an older dog to replace Ty Boy. Little Willie was 11 ½ when we adopted him, and he lived a few months past his 14 ½ year marker.

  It was my birthday, as it is today, and I whined and whined and begged and begged that it would be my best birthday present ever, if I could have both dogs. What I should have said to Karyn was that getting both dogs would be a very good present, but not my best, “Getting both dogs would be a very good present, but it cannot compare to all the other parties and gifts you have given me on my birthday in the past.” But I stuck to the “best” line. “This would be my best-ever birthday gift, if I could have both of them.” After an hour of intense whining, Karyn caved and Willie and his two year old “brother,” Jake, came into our household.

  Last night, as we were walking six miles, Karyn apologized to me that she had not bought me a birthday present. Yes she had. For my birthday this year, I got my wife back.

  Karyn is making up for lost past time, and future times that may be lost. Misplaced time. Found time. For as you can see, Donor, I am having an affair with my wife.

  This year, the best birthday present ever. Ever. “Richard, blow out the candles. Make a wish.”

  I already did.

  Karyn’s body may be pretty dinged up, but the inside is more beautiful than ever. You know what I love about you Karyn? “What?” And I answered “everything.” Karyn, keep breathing, just keep doing it, in and out, in and out. After all these years, you take my breath away. I am having an affair with my wife.

  I have been asked many times, would we go through this again? If we had known all the problems? In a breath. I suppose we would all prefer our fairy tales to be simple, but they’re not.

  The three of us lungketeers have become each other’s air. I can taste the sweetness. Memories have been hermetically sealed and perfectly preserved. It seems like yesterday; it seems like eternity. Sometimes remembering all that has happened is hard, but I remember it all because I remember it all. And somehow that comes as natural as breathing.

  I will always have one thing no matter what, one thing that time will never take from me, the story that happened here. The Story of Us.

  Donor, sometimes you think you are at the end of the book, but it’s only the end of a chapter.

  One for all,

  Richard

  May 2010

  The Other Side

  Good Friends Fill the Heart—an Ode to our Special Caregivers

  Twice during the six months at DUKE, I returned home to our children, grandchild, work and chores. Without the help of our alternate caregivers, I could not have balanced life. I was home briefly when my sister Pam called that Karyn had received the Gift of Life. I returned home for three weeks a month out, and Karyn’s good friends, Helene, who handed the baton to Randee, came after to Durham.

  To be a caregiver rightly requires a large gift of patience, grace and peace. It can be a wearying job, a full time job with little time for oneself. There is always supper to get or breakfast to be fetched, lunch to be made. There are dishes to be washed, clothes to be washed. Grocery lists to be made, groceries to be bought. Laying out the clothes and voila, you have become a valet. Above all, to differentiate what is important and what is not important.

  Trust me on this one, your loved one’s fears, anxieties and sense of dignity will correlate directly with your own. The biggest challenge of a caregiver is in your own attitudes, and our three caregivers staying with Karyn helped my wife dip her toes back into life, a little bit at a time.

  Our caregivers are my heroes. Just ordinary people who are confronted with an overwhelming situation, but rise above and do more than you would ever think possible with little regard for themselves. Just trying to be there and help Karyn is the focus.

  Helene related to me, “It’s something we don’t even think about, we just do. We move forward, we find a way to cope, and we do it all in honor of the person we love.”

  My si
ster said late one night, “To not give is like wrapping a present and not giving it. You just try to give away what you want yourself. It’s the only thing that makes you what you are.”

  At the one year anniversary, to honor our caregivers, Karyn brought all three to San Antonio to celebrate her Gift. At work, I celebrated by giving my two employees a bonus. How the two of them kept the ship afloat amazes me on the many days the phone never stops ringing.

  Each of our caregivers is different, each one with different gifts. Each one offers Karyn something uniquely their own. One listens, one offers advice, one makes you laugh, and one takes you shopping. They’re always near, a gentle touch, a helping hand. It’s good to be in safe hands. Each one of their gifts is a cherished treasure of a beautiful friendship, never judging Karyn, just loving her. How good it is to be loved. The caregiver’s presence; that you are simply there lets Karyn know that she is loved, respected, and not alone.

  Yes, they did find time to shop and buy stuff. But I’m here to tell you, better than any iPad or sweater, was their gift in Durham, of these special caregiver friends, including Lammie Susie, and their special presence.

  Too many people just passing by are led to buy things and fill their lives with stuff. But friends, true friends, don’t come with price tags and that is why they are truly wonderful gifts.

  Our three caregivers and Carolina Susie left footprints in my heart. A shared laugh, a tear, and a hug. You never said no, or you can’t. If you need me, I’ll be there for you. To know that someone cares, a kindness spread like sunshine. You chose to make a difference and lifted our burden and lightened our load. You knew what was important. I am so very grateful.

  I remember Helene’s words, “We can do just about anything to help our loved one get through. We know our days will change, our routines will be rewritten (Is there time to write all that needs to be done?).” Randee exclaimed, “But we do whatever it takes, because we would do anything, anything at all. We’re caregivers!”

  I am sure you’re familiar with the old saying, “You can’t take it with you.” They must have been talking about the blouses and the flat screens, because good friends, good caregivers, being there, fill the heart. And you can take that with you, anywhere you go. As Karyn said, “Friends are like good bras. They are supportive, hard to find, and close to the heart.”

  I hope all of you had a great time in San Antonio, and as Dr. Seuss said best, “Don’t cry because it is over. Smile because it happened.”

  Our life is given to us, and we earn it by giving it. To be able to touch someone’s life and to know in your heart of hearts that giving is true having.

  You caregivers are my forever heroes.

  Once a caregiver… .

  Love,

  Richard

  Roller Coaster

  Both Sides Now

  I feel like I am on a roller coaster. LAM and Lung Transplant have been like a roller coaster ride, one which has required every ounce of my willpower to stay on. Yes, having a double lung transplant and LAM is like being trapped on a roller coaster, a really good one with lots of twists and turns and huge drops. You know the kind that make your stomach turn over. Every once in a while, someone changes the ride: new drops, new twists, new fears. Don’t they have roller coasters that only go up?

  LAM in a way changed my calendar. We go by days. We take them one day at a time. I’ve gotten used to the roller coaster, at least as much as I can. It sure would be nice to get a nice level stretch for a while and let Richard and me catch our breath, settle our stomachs, and get ready for that next drop. But this isn’t that kind of ride, I guess. No slow spots, no timeouts. It’s full speed every day.

  Waiting for the check-ups of my FEV1 and the other tests at Duke and knowing, really knowing, that all is well. Those monthly blood draws to monitor my medications, and the waiting for results. The wait. That’s my ride. The ticket was bought, you take the ride. Couldn’t there have been a height requirement?

  Having acute rejection from aspergillis, from someone just mowing their lawn, getting a little sick and having pneumonia and being in the hospital, desaturating and watching my O2 drop into the low 80’s, watching my kidney scores go from bad to worse. Those are the little drops that make my stomach turn over.

  As much as the twists and turns of the ride affect me physically, the ups and downs also play havoc with my emotions. I look for hope where I find it. I yearn to return to Duke to learn there is no rejection and a clear bronch. I brace myself for bad news, and when it comes, acute rejection, aspergillis, it still hits harder than I was prepared for. I smile and reassure everyone around me that the ride isn’t too bad. Other times I can only admit that the last drop really got to me.

  After a while, I forget what it was like to not be on the ride. That life on solid ground is over, at least for now. My ticket is for a truly wild ride, and there’s really no way to get off. And no one else, not even my husband, as much as he wants to, as much as he needs to; no one else can really ride along with me. Rich can watch. Rich can be supportive but when I am up there on top of the ride, looking down on that huge drop in front of me, I am the only one in the car.

  Keep your hands up Karyn, and scream real loud. It’s really hard to catch your breath when you desaturate. Hold on tight, both to your seat, and to me. You’re about ten feet tall in my eyes. I wish that at the bottom of the hill, you’d get a giant wave of cold water in your face, and a hidden camera would snap your picture while some hairy character dances around, or maybe I’ve been to Disneyland too many times.

  But you are learning to throw your arms up in the air and scream like crazy. In fact, yell wheeeeeee, and you will feel better, and if you have faith that the car won’t jump the tracks, the view from the top can be truly amazing.

  I know that sometimes your stomach drops as if you’d just crested the tallest peak on the roller coaster and you are about to barrel down the other side, careening down at frightening speed. So all you can do is hold your hands up in the air, and yell as you ride down this transplant hill, knowing that on the other side, there will be a long climb upward to the top of the next hill. We just have to keep up with it. Actually, I’d better stay one step ahead.

  A roller coaster, a ride that can make you frightened, scared, sick, excited and so thrilled altogether. Often I feel like I am in line, knowing that the ride is scary but that you will walk off the ramp when it’s all over, when we no longer count the days or years post-. I know you will walk off, shaky legs perhaps, but still walking, with big smiles on your face and the faces of those of us who have watched, cheered and loved you.

  It hits me on the head, and I realize how much those of us living without LAM, or a double lung transplant, or a lung disease, take for granted our life on the ground.

  Hold fast and thanks for sharing your strength.

  I love you,

  Richard

  August 12, 2009

  A Hearse Never Comes With Luggage Racks

  Both Sides

  Dear Donor,

  Did LAM or the lung transplant make me a better person? I do not think so, just a different person. I know some things now that I wouldn’t have known otherwise, but who’s to say I wouldn’t have learned different things in that other life?

  My LAM surely has humbled me. My LAM surely gave me love of life. That does not mean that LAM is not what it is, hard and difficult, but we all have the opportunity to make what we can of what we are given. LAM on its own did not do this for me. LAM and transplant were merely the catalyst for it, and I snatched the opportunity.

  As a LAMMIE and a post-transplant, I am living and dying at the same time. If LAM comes back, it comes back. If there is chronic rejection, there is not a lot I can do about it. My life is in flux, unique to me, and shared by others. The living seems so intense, filled with exquisite beauty and wonder, the dying feels
like tearing away all the layers, seeing parts of me I did not know were there, and it hurts, but just a little.

  Knowing that there may be little time left, LAM and transplant caused me to speak more directly and honestly, since there is no time to beat around the bush. How a potential expiration date was liberating.

  I truly think of others and pray for them. I have such empathy that it hurts sometimes. I have learned that everyone suffers no more than the other. I never assume that my pain is greater merely because it is mine. My own adversity has enabled me to see clearly that I only have to look around to see the struggles of others, now through a different prism. I can now fully appreciate their struggle and the nobility that they demonstrate in the face of overwhelming adversity. I feel a sort of aching toward my fellow humans, all of us just stumbling along, doing the best we can.

  I am also learning to stretch my forgiveness muscles. I am learning gentleness and a lightness of being. To live large and travel light, trusting in the power of kindness and love to lead me where I need to go. My LAM and transplant taught me that getting old is worth fighting for, and that social status is not really important. I have learned there are a lot of people who really do care and are very kind, and my LAM and transplant truly brought out the very best in people.

  My LAM and transplant gave me love of life. I love more deeply and I give more readily. I love waking up every morning to be here, alive. I can remember the past and plan for the future, but I can only truly live right now. I do not look over my shoulder or try to see my future living for some other time. I live for the now. To love harder and deeper, and appreciate the absolute beauty in every day and its blessings because right now is all I’ve got. My happiness is deeper, my sadness is more profound, and my tolerance for the trivial is gone. I now see the sky bluer than ever before. The rain does not bother me. I see shapes in the clouds like when I was a kid. I am reborn.