And I asked, “What’s the alternative if I do not get a transplant?”
The answer, “We all die.”
The most important lesson of all doctor, “We all die,” is the pain will pass. And almost all of the time, it’s worth it. It’s the price I pay to stay in the game.
Some days I play the LAM or Lung Transplant card. Some days I just keep it in my pocket. I carry the label, whether it be a designer label or one just off the rack. But I do not want to be remembered only for the LAM and the Lung Transplant. I was not that before and am more than that after. I keep thinking about it and thinking about it and I want to shout it out, but if I did, then I would be bringing up the LAM and transplant thing—I suspect I am still remembered as LAM girl, as Lung Transplant Lady. I just try to remind myself, to remember what I believe they would want to remember.
LAM and your transplant have given me time, time to love, time to laugh, time to feel the love around me, and tell them that I love them. As life will someday come to a close (Yes doctor, we all die) I can tell you all, that the time was well spent.
Hopeful for future bronchs being negative, which is positive.
Karyn
August 23, 2009
The Abbreviation of
Genuine is Gene
On Both Sides
Karyn and I had traveled the farthest distance to come to Duke, and thankfully, we met Gene and Malinda Holley the first week we were ensconced at the Residence Inn. The Lungies here and at DUKE became our family.
Gene Holley had been hospitalized in 1993 with an upper respiratory infection. Five years later, he came down with pneumonia and when he left the hospital he was on supplemental oxygen 24/7. Gene was diagnosed with COPD and his lung capacity was down to only 17%—the road from their home in Cashiers in the Blue Ridge to Durham in August of 2008 led Gene to run the gauntlet of tests at DUKE for admittance to the DUKE Lung Transplant Program.
Gene laughed, which he did a lot, about how he had been poked, prodded and violated in every orifice of his body. Before his next appointment three months later, He was given a laundry list of things to get done; the top of the list was to lose 25 to 30 pounds. Gene attacked the lost weight with the tenacity of a D-1 football coach running fall camp two-a-days. At the beginning of March, Gene was admitted to the rehab program, Karyn’s boot camp class at the DUKE Center for Living.
Gene always had a sparkle in his eye, a beaming smile on his face which, when you suck air like a beached trout on a river bank, while lugging an oxygen “golf cart” behind you, is anything but easy. Gene’s sparkling eyes were always so clear, so sincere. He was always encouraging me and everyone else, his eyes twinkling like the stars in the heavens and his smile brighter than the sun. “The more you do on this side, the easier it will be on the other side.” Gently prodding, never mad or tired, The Coach, coaxing everyone in our rehab program to do just a little bit more, and then to do some more. He was like my granddaughter, Avah, on the swings. “More.” “Higher.” “More.” The Coach made everyone feel better, more relaxed, and our spirits, both patient and care-giver, uplifted to the heavens. “Higher.” Gene brought air to the room. COPD surely is not infectious, but Gene’s spirit was contagious. Gene was a special person who radiated a natural magnetic field, who everyone is drawn to, who everyone is dazzled by.
We celebrated our anniversary with Gene and his wife, and a few weeks later at the end of July, Gene was transplanted, two months after Karyn. Gene is the only patient I know who walked under his own power from the surgery clean room to his cubicle in ICU. Four days out in step-down, and the physical therapist was telling him to slow down on his walks around the hallways, as what was called for was endurance not speed. Day four and he walked a mile. Discussion was underway to send Gene home. On Saturday, a week out, Gene called Malinda at 6 o’clock in the morning, asking when she was coming to take him home. He then walked the halls and very un-like Gene, prayed aloud with another man. The Coach magically and miraculously inspired all he met. The gift he had, he shared.
Two short hours later Gene went into full cardiac arrest, his brain oxygen-deprived. How could this have happened? The doctors hedged, used lots of big words, and after trying everything the end tolled on the 14th day.
Gene relished every breath he took for those seven days. He received the ultimate gift and was so very, very thankful for it. His new motto of “I serve an awesome God,” rings loud and clear. Gene was the Good Shepherd who tended his flock and brought us to good pastures.
How is that I and everyone else Gene met, were all touched to the core, like we had known him all the days of our life? I think I met Gene’s soul, cast in his beatific smile.
The easy side of God had shown Gene what lay ahead, that the seven days he could breathe would be his ultimate reward. And on the seventh day, God rested.
When I received the call that Gene had died, the weight of hurt was unbearable. Atlas could not carry it. A great mass of grief rose up in my throat at the unfairness of the world. Why? Why oh why? Malinda said this was just meant to be—the move, the weekend visits from family and friends, his new-found power to pray and best of all, the time she shared with Gene, one-on-one, for five months.
Melancholy rose up over me like a shroud. My throat was too tight to speak. The tears broke loose completely because I would never again hear his voice again, “The more you do on this side, the easier the other side will be.” Never again see him smile or watch as he walked with his family. Never again see that twinkle in his eye.
The ravage of raw grief was such a painful shock to my system. Grief is taking all the space. It overtakes every part of me. I was not ready for the sheer physicality of it, the lead-lined overcoat of pain. Pain radiates from my body in waves. My chest hurt, my stomach pounded harder than my heart, my tears burned. Never see him pour gravy over his waffles, his pancakes, and his pulled-pork sandwich. For Gene, gravy was a condiment. Chocolate a dessert? Not for Gene.
If I could just get through pain to sorrow, I thought I could do sorrow. But I found grief is such a slippery slope, and many times trying to climb through the pain to sorrow, I fell backwards. Gene’s death was a divorce no one asked for, and to live through it is to find a way to disengage from what I thought I could not stand to lose. Gene and I talked about how when this part of the journey was over he would buy a motor home and the four of us would vacation together. Never again see the four of us enjoying the fruits of the transplant. Never again see him fishing. Never. God I hate that word Never.
How do people survive? People die all the time, every hour, every day. Families all over the world staring at beds that are no longer slept in. Shoes that are no longer worn. Fishing poles sitting idly. Flannel jackets hanging on poles.
What do you remove? What do you clean? Trace after trace of Gene that will immutably erase. I want to put up stanchions and red velvet ropes in my mind, like they do in historical mansions. I tell Gene’s story to get him back, to capture the traces of his footfalls in the snow. My past is the last link to Gene, and as much as it hurts, I wrap it around myself like a blanket.
I wonder does time heal, and if so, does it mean I have accepted the world without him? Time does not heal; time merely passes. Time does not heal as much as it buries things in the undergrowth of your brain, where things lie in wait to ambush you when you least expect it. I am not ready for time to heal this wound, but I also know I am powerless to stop its passing. I do not need for you to tell me this will happen. It is inevitable. The real hell of all this is I am going to get through it. Too many good people do not make it. Too many. The sadness sometimes drowns me, and I cannot get enough air. The names who have not made it pinball around my brain. The pain most times is no longer there, the slope a little less slippery, but the fond memories will sometimes bring me to tears.
Lung transplant is without a doubt a risk, but dying is a certainty. I
know it’s not all sunshine and lollypops. I know, pun intended, that life is not all gravy. I try to understand why such a good person as Gene is no longer alive, try to understand his death, but for me, it is like trying to decipher the theory of relativity. I try to make sense of his loss, and the too many others, but I cannot. There is no sense to it.
God only gives me what I can bear, but I cannot bear this. How did I live life with my lung disease? How did I survive? Why? Tell me why.
Yea, I walk through the valley of the shadow of death, not around it, or over it, or beside it. Through it. I know that the smallest of things in the valley, a smile, a couple, a southern twang, can send me back there. My grief is never smooth and there are pockets when all the memories and nostalgia surface.
Gene, you made the world a better place for Richard and me. I see your wife, Malinda, my good friend, who sits in the peaceful center of the eye of grief. Only by going through the most turbulent part of the storm can you find that place; and I see her delight in the memories, blowing out the sadness like a candle. I do worry, how slippery is her slope?
Gene taught me the time we have is a gift. Thanking me for my friendship—appreciating life’s small things like his granddaughter’s high school graduation. Know your limits and respect them, rely on others, need other people to help you out. He taught me that both Life and Death are two hard things to do alone.
Grief is the very heavy price I pay for love. It’s a sadness that lodged itself in my throat like a pill that refuses to go down. A bitter pill to swallow. I know that sometimes I just have to soldier on in my own private, messy way. There is nothing like death to make you think about life.
Poet Robert Browning Hamilton rings true. “I walked a mile with Pleasure, she chattered all the way, but left me none the wiser, for all she had to say—I walked a mile with Sorrow, and ne’er a word said she, but, oh, the things I learned from her when Sorrow walked with me.”
People told me that once this happened, or this passed, everything would be better. There is no timetable for grief and no expiration date for love. Some people told me you can only grieve for a year, like grief is a straight line, like a story book that has a beginning, middle and an end. There is no plot line to grief—one day I am fine, and the next back into a hole of grief for Gene, Monica, Karen C. and the father I see in my dreams with his arms crossed looking at the hospital bed of our Donor, and all the others who did not make it.
Gene had dignity, gentleness, gratefulness and a good nature for all he had been through. A true Southern gentleman. Deep devotion was reflected in his steadfast eyes, trust unwavering, loyalty unbounded, and his companionship a treasured gift. In his presence, we who were patients, caregivers and friends, were uplifted, inspired to do more and be more. I believe what Gene shared was a touch of heaven, a ministry of presence. I know now what peace looks like, and his smile will always burn in my heart.
I know to live on in the hearts of those we love is not to die. Everyone who loved you Gene, will love you still. Everyone whose lives you touched will continue to feel their lives, my life, diminished by your passing. Gene’s legacy is his wife and children and grandchildren—this is his piece of the future and our piece of Gene.
God Bless you Gene. May the grace of God be with you Malinda. You have touched so many lives and made such a difference to so many.
I beg this day once more to push rewind, roll back this tide of history and travel back in time. Memories are the present he gave me, and I open them again and again. “You’re not really going to eat that sausage slathered in gravy?” Death can never ever take away from me what I held. I am glad I remember. I know forgetting is worse than remembering.
I shall always remember Gene and the too many others who did not make it to the other side of transplant. I will never forget Gene, because if I do, I shall forget who I am. It was a privilege to love him.
I allow myself quiet moments until once again your face shines in my memory, and maybe this time, I will ladle gravy on my waffles. Chocolate anyone?
I know God has found a special place for Gene along a rolling stream with fish biting endlessly. I wonder how trout tastes with gravy. Gene, can you see me scrunching my nose? Can you hear me say Yuck?
The most meaningful thing I can say, I miss him too. The most meaningful thing I can say, I miss him too.
Saying good-bye is the hardest thing we’re called upon to do in this world.
There are Some Battles
The other side
I stripped one of my friends of his stripes and reduced his rank to acquaintance, when he lobbed a grenade at my memories, saying Gene did not fight the good fight—he did not battle, for he only lived 7 days. I hear Malinda’s voice, that Gene relished every breath he took for those seven days. His granddaughter, Hailey, had asked her grandmother why the other people she met who had had a transplant had not died. Malinda honestly answered, that Poppa must have been sicker than we thought and how happy I was that those other people were enjoying God’s gift because I know how happy Gene was for seven wonderful days.
Did Gene die from COPD because he did not fight the disease hard enough? Did he die because he did not fight the good fight? No, no, no—a thousand nos. Of course not. I hear the well-intentioned but misguided words and phrases that have become ingrained in the lung disease lexicon. Lost a battle with; gave the fight everything he had, fought the good fight, never backed down from a fight, a warrior to the end. Common clichés. We have heard them all.
This was no fight for Gene. This man was faced with a rotten hand of cards. What matters is he gave meaning to his life, and to so many others. In the end Gene lost his battle to COPD, his heart, and the unknown. COPD never really wins. It thinks it does, but it died also.
Equating the disease to a war against the enemy, fighting an adversary, or suffering in order to survive diminishes our understanding of the challenges, and the complexities faced by Gene, other patients and their families. Each person is different. Every disease is different. Each person comes to transplant differently.
The idea that Gene was waging a battle which he lost demeans him. Gene did not lose to an adversary. Emphasizing a lung patient’s bravery and courage; that you are a warrior implies that if you can not conquer your disease, there is something wrong with you as a person, some weakness or flaw. If your lung disease progresses rapidly or you do not live to see the 8th day after transplant, it is your fault. Your willpower failed.
No one had a better attitude towards living. To say that Gene lost his fight implies that he had a say over his life. Gene did not choose any of that any more than I could have chosen the color of my eyes or hair. It is that arbitrary.
You have a choice, like Karyn or Gene, to play the cards dealt to you up or down, good or bad. This is what Karyn and Gene did. This is so much more empowering than the idea you can somehow control the ultimate outcome if you just fight hard enough.
You can bring yourself down and it can be the worst of the worst or you can be like Gene or Karyn and can carry on. I will deal with this on a daily basis. Know this my former friend without stripes, in this world there are simply wars that cannot be won, no matter how valiantly they are fought.
Perchance to Dream
No Sides
It is the year 2042, and my son’s yet-to-be born daughter is now 30, and she is at her new doctor’s office, answering intake questions.
Do you have any allergies?
Does anyone in the family have any history of blood pressure?
Does anyone in the family have any history of liver disease?
Does anyone in the family have any history of lung disease?
“Yes, my Grandma Karyn had LAM.”
The doctor pauses, looks up, and responds, “I have never met any woman who had LAM. I have only read about LAM.”
After all, it was cured back in
the 20’s.”
To dream.
August 28, 2009
My Birthday
The Other Side
Dear Donor,
I am remembering sadness. It makes me sad, not for now, but for what Karyn had been through. The stony weight of memories bear down on me. There are moments when I wish I could roll back the clock and take all the sadness away, but I know if I could, the joy would be gone as well. Someone told me recently that Karyn had been to hell and back and once I might have agreed but this journey on the bend in the road taken, so reluctantly, opened our eyes to scenery, the beauty of which we might otherwise have missed. It was a journey I would never replace with anything else. It taught me to love beyond myself, beyond anything and just love. It was beautiful and painful and precious and tender and generous and… it was our life and I am so lucky to say with tears welling, it is our life. I am living the life I want to live because I am living it with Karyn.
The past is always your past, yours. Even when you try to forget it, the past remembers you. I am glad that when we married almost forty years ago my life did not come with previews; otherwise, I might have thought it was too frightening to stay for the feature presentation and missed some really good parts. When I bought, I bought as-is, with no returns. All sales are final.
Karyn has been quite a read. Sometimes I had to fight to stay awake turning to the last pages of the book to find out how it ends. A book with suspense, unexpected turns, hope, and despair and heroic actions, a beautiful damsel in distress and snatches from the jaws of hell. Why couldn’t life be more routine than plot?
The Taste of Air Page 16