The Taste of Air Page 12
You’re out of breath. You’re on the vent. You’re put on the trach. You have to take your medications and nutrition through the GJ tube. You’re back on the vent. You go to clinic and then go home to take your meds and shots, and then you come back for rehab, and then you drive to clinic to meet the doctor. You go for more shots and meds and the feed bag. You’re like Barbara who spent a month in the hospital, out for two weeks, and then back to the hospital with an infection. No matter how you are feeling, you just learn to take the next punch.
I sit watching from my perch nearby the Duke Center For Living, the home of good ’ol fashioned barbecued rehab, those men and women, who struggle up the walks to the entrance, many of their frames bent and battered. There should be a statue out front of the CFL proclaiming, “Give me your poor of oxygen, your huddled masses with walkers, yearning to breathe free.”
I am the boxing trainer, standing off to the corner of the Living Center ring, watching, cringing, imagining that I can feel the pain of the huddled masses fighting the good fight. In a weak moment today, I look away as one gentleman takes 10 minutes to walk 10 feet; it looks so brutally hard. Even Bill Clinton drawls, “I feel your pain”. But then I realize what that means—that I do not believe in my fighter; that I may not be sure that this fighter in my string can take so many hits. It means I might have doubt. It means admitting just how hard it is for me to helplessly watch. So I regain my composure and once again begin to root my fighters on. You can do it, take that rehab, give them the ’ol one-two. Take that LAM. Take that Pulmonary Fibrosis; an uppercut to CF. Hit them in the ’ol COPD.
Then comes those quick, highly stressful moments in between rounds when I have the privilege, the responsibility, to look into the eyes of my fighters. To wipe their sweat, blood and tears. To be in their corner when their temperature goes up, when their PFTs go down, when infection or rejection may be appearing, when the GJ tube contorts their stomach, when the lightning jabs of pain strike. I tell my boxer how strong she looks, how she is bigger and better than the opponent, and will without a doubt emerge victorious. And then, when my fighter and the other fighters in my string go back in for yet another round, and the noise of the crowd in my head is so freaking loud, I hope that no one can see my agony, my tears, but it is seen.
I so want to walk with them, but it is their journey, their fight. Actually, I think I want to carry them all. The worst part for me, is the person I want to support; she is the person who has a much bigger fight to fight.
I am exhausted watching each one of them stride up to the Living Center, each step of the struggle, but they do, step after step, step after step, and all with an easy and amiable smile. Each one of them, like the punching bag, keeps popping back up punch after punch. Each one with the smile of that clown.
Whatever issues they have, they sure as hell aren’t going to make it easy for the diseases or the post-transplant regimen to get them down. I remember that after enough punches and kicks, those inflatable clowns usually sprung a leak, and deflated for good. Down for the count. It ain’t how many times you’re knocked down, it’s how many times you get up. Clown, stay down. Fighters, get up.
As Karyn fights through the knock-downs, and gets up each morning, it is indeed an honor, a privilege to work her corner through each round. To give her water, a pep talk between rounds, to soothe her wounds.
Dear Donor,
Rehab three hours. 6th day of rehab (But who’s counting?). Karyn came out of the PFT lab this morning with a smile shinier than Ali, a smile as wide as the Grand Canyon. PFTs were the best yet, FVC was 1.92, .61 per cent of predicted, a big jump over .50 last week. FEV1 was at 1.51, her best score yet. This means as your lungs expand, that Karyn’s oxygen capacity will grow and grow (this process can take up to a year). All three judges ringside on their cards declare her the undisputed champion. Her arms go straight up in the air she is breathing, declaring a unanimous victory today. Take that clown.
Love,
Richard
Monday June 22, 2009
A Survivor By Any Other
Name, So Far
Both Sides
Dear Donor,
Is survivor the right word? The right name? I have “survived” and lived life so far, but when I think of survivor, I think of someone who has been through it, and has gotten past it, once and for all. It seems the words, “so far” should always be tacked onto the word Survivor. I have LAM still, and I take serious anti-rejection drugs, so am I a survivor? I take tons of pills and medications and shots for diabetes. None of us can ever really know what the cells of our body may be doing.
LAMMIES, and all those with a chronic disease, every day after your diagnosis that you continue to live and breathe and love, you are survivors. Today you got up, you are a survivor. If you are reading this in bed, then today you woke up and that makes you a survivor. Sometimes, not too long ago, staying in bed is all that I could do—sometimes I couldn’t do more than just sit in a chair and read a book, watch TV, or just sit. Those are tough days.
When I talk about living life, it does not mean that you always have to be at your best, that you’re the life of the party. It does not mean you’re out climbing Mt. Everest or learning to play Mozart concertos on the piano or biking the Appalachians—that’s not it at all. I think that the best that any of us can do is appreciate each day that we have, even the bad ones. You may be overwhelmed by the pain or the hurt, or the taking away of what you once could do, but do the best you can and get through the day in the hopes that tomorrow may be better.
LAM and lung disease are relentless. LAM and lung disease do not lose a battle here and there and then give up though I wish they did. I wish all you had to do was kill a LAM cell or two, and then the LAM would throw up its hands and say okay, you win, but we all know better. LAM never gives up. Now that does not mean we give up either. I think it means at some point the LAM may win or the rejection of the transplant may win. Until a Cure is found.
LAM and lung disease do not have a brain or a heart or a spirit. LAM cannot plan or be cunning. LAM does not have a heart that causes it to fight or a spirit that gives it the heart to fight. We who have the brain, the ability to strategize; we have the soul and the heart to fight.
I wear my survivorship as a badge of honor for all to see, so others will not be afraid to fight the bully of LAM or lung disease.
If survivor is not the best word, what about victim? That’s probably closer to the mark. I did not do anything to get this disease: Just happened to my body, besieged by LAM or a lung disease. LAM took from me like a thief, robbing me of so many things—running, dancing, stealing my breath away. But when I say victim, that does not mean LAMMIES are weak or passive, that LAMMIES just sit by and let this happen. Everyone I know who has LAM does not go quietly into the night; they are not weak or passive. They are not giving into the disease and victim does not mean helpless.
I think victim is old terminology. I don’t care much for the word, because it makes one sound passive and well, like a victim. Victims do not have a say in their fates and are doomed in stories. I know victim is a loaded word. I am not a victim; I am one of a number of strong women who have LAM.
Is “LAM patient” a better choice? It is accurate in a bland sort of way. It really does not get across what’s it’s like to have LAM, what we all go through. It makes it sound too easy, too clean. Patient is an apt description as we have to be very patient. Wait for the results of tests. Wait to catch our breath. Wait to see how the disease progresses. Wait.
Maybe seizer is a better word. A seizer is pretty busy, yet anyone at any stage of LAM or lung disease can seize. I seize moments in the day, along with new and old relationships. I seize new treatments, new clinical trials, new protocols. I seize all hopes and dreams. I have seized on nature on walks. I have seized on my family and friendships. I have seized on the moment.
I know
the truth is I am not surviving a darn thing, because I along with you will one day, die. But, today, I seize, therefore I am.
I am a person who has LAM, ready to seize everything. I can seize before LAM, or whatever else seizes life from me. Hail Seizer.
Then again, maybe coper is a better term. I’m not sure that’s a real word. I cope with stuff. I cope with things that I never thought I’d be able to. I cope with things that I wouldn’t wish on my worst enemy. I get through it. I am a coper.
I wish for a survivor’s miracle, but in lieu of that, may you cope well with your LAM, or your lung disease, and that which you seize can be miraculous.
I think that’s what our future is, and the future for all of us. We’re going to cope with whatever hurdles the lungs put in front of us. We’ll get through it. And if the future isn’t exactly what we had planned, if it’s not what we daydreamed about, well, we can cope with that also. Copers, we are. As Richard’s Grandma Sarah use to tell me, it isn’t the load that breaks us down, it’s the way we carry it.
Does it really matter what term we use? I guess how we define ourselves says a lot about how we face this disease, but in the end, I think we are all just people who happen to have gotten a disease. What more do I need to say?
LAM shows us that living is a verb. LAM is an action word. Surviving, seizing. coping, seeing, doing, feeling, saying, touching, smelling, tasting. It is climbing and occasionally falling. LAM and lung disease is not a waiting word. Do not wait to live. Starting right now, seize every minute out of each and every day. Copers, we are.
If you do, you’ll realize the way I live; that each and every day well-seized is a miniature lifetime.
I know that there’s no such thing as a bad survivor or coper or seizer or patient. All of us—that’s all of us—are just muddling through this, so even on bad days, when you can’t catch your breath, doing the best you can, and saying that you’re going to try again tomorrow, that’s a triumph. Savor it.
Ultimately, the perfect survivor is you, simply, because you have survived. So far.
To tomorrow,
Karyn
August 28, 2009
Survivor’s Guilt
The Other Side
When two transplanted lung patients or two LAMMIES meet, a momentary flicker passes between their eyes as if to say, “I know, I’ve been there, and I have come out The Other Side.”
It is like watching my father who was a hero in World War II at Normandy and the Bulge, greeting another Purple Heart or Silver Star. It is said that old soldiers never die nor ever tire of reliving the glories of their battles or of the loyalties of their comrades, both the fallen and the survivors.
As the women against the battle of LAM and those transplanted, and those with a lung disease, this is a battle that you will always be proud to have fought. To have shared with those who fought with you, those both living and fallen, for you have learned as every soldier does, that it is not necessarily the outcome that matters, it is having risen to the fight that counts.
On The battlefield of DUKE, the rush after the shots and the episode stopped, and the guns silent, and I felt more alive than I have ever been before. It’s the sheer joy of seeing my wife survive. My sensations are sharper, and the air is crystalline clear. It’s only afterwards that it sinks in that not everyone makes it, not everyone survives. That’s where survivor’s guilt comes in.
When someone is diagnosed with LAM or another lung disease, one of the first questions wrestled with is “Why me?” “Why was I singled out?” “Why am I sick when others are not?” But it’s not very long before we realize that this is the wrong question. Why not me is just as fair. There really are no answers to either question. Why is not the question. We have LAM. We have lung disease. We have to deal with it. We have to look ahead.
Why was Karyn so lucky? Why has Karyn gotten a break when so many others have not? Why can’t we all survive?
I guess I have some guilt, though it’s not really guilt, it’s more a feeling of profound deep sadness, not for myself but for all of you who have not gotten good news, who are not going to beat this, even for a little while. There was not an answer to why me in the beginning and there is no answer now.
Don’t get me wrong. I am thrilled that I am here today and Karyn is alive. I do not know what is in the future. None of us does. But through this ordeal we have all been walking the same road, shoulder to shoulder. We all faced the same fears, the same challenges, the same heartbreak and we all learned lessons we could not have learned any other way.
This is probably going to sound a little silly, but I feel guilty about being here. I know how truly lucky I am, not just to be here with my wife, but to be here at all. But as I sit here writing, it’s hard for me to stop thinking about all of you who are having a tough day, sitting in the waiting room, or at home, which in spite of the familiar comforts, can seem so darn lonely sometimes. I know what you are going through and yet I’m not going through it, and that feels strange to me.
I feel like I have stepped at least partway out of the LAM and lung world. My guilt is like a virus and it’s always on my mind. Friends bump into Karyn, “It’s great to see you here.” Of course, that sentence can be read in a couple of different ways and they mean them all.
So what am I feeling? Survivors guilt? That’s part of it certainly.
Why me? I am no more worthy. I wish I could bring you all to where I am today.
Survivor’s guilt. There should be no such thing. Instead there should be survivor’s anger.
We’re mad as hell we have not all made it. Yet.
Miracle of Miracles – 2 Lungs, 1der of Wonders
On Both Sides
Tuesday June 23, 2009
Dear Donor,
Albert Einstein, who knew everything was relative, believed that there were two ways to live—nothing is a miracle and everything is a miracle.
Thank you donor, for the gift of breath, for the gift of life, for the gift of every moment. To be able to breathe again, to taste the air throughout my body after so many years is a miracle. I devour life, savoring every bite. I know that every miracle you get to keep becomes normal, but I still feel a magnificent sense of wonder that I can breathe.
The feeling I get when I go to sleep, and when I wake up in the morning that everything is all right in the world, that amazing feeling that I am whole, that I have got everything I want, and that I am not missing anything. I know tomorrow will be an unforgettable day.
I believe in a lot of unbelievable stuff. How can I pick and choose which miracles make sense and which do not? Miracles may not make sense and sometimes miracles do not look like you’d think they would. Sometimes we might not even recognize them.
Sitting in my wheelchair with my trusty IV tower by my side, in the DUKE Alcove garden, the first time “outside” after my transplant I hear the song of the Cardinal. The song of the birds, the smell of the flowers, the outside, has not made the discomfort and pain go away, (that would be a miracle), but it’s a reminder that no matter what’s going on with me, life goes on. I hear the chirping of the birds and for a couple of minutes it made me smile, and on a day like this that’s invaluable.
Miracles come in all shapes and sizes. When I hear the birds sing, it always makes me smile. These birds have been singing since the beginning of time, for centuries and centuries, through war and peace and everything in between. They are a blessed constant and I am reminded that someone is watching over them and me, through all times.
Words move through me, but they do not come from me. Not a voice, not a burning bush, just a sense, a hint of presence, that all will be okay and that I am not alone. Faith in miracles. Faith just isn’t faith until it’s all you are holding onto.
I am outside, breathing without supplemental oxygen, and have just received the miracle of life, the miracle o
f your double lung transplant. Many people still are astounded, “They can do that?” “They can give you new lungs?” The way I see it the impossible happens all the time, but we are so good at taking it for granted, we forget it was once impossible.
I do believe miracles happen every day. I think people often forget the miracle of life and for me, the second chance of life. I work hard not to be overwhelmed with every mundane task, and responsibilities, and just remember the true blessing of the Life that you gave to me.
Life is about living, gratitude, joy, passion, happiness, excitement, joyful expectations, hope, and satisfactions. Sure there are ups and downs in life, but this is my life and my second chance at a healthy, happy, and loving life.
You know what’s best of all? Your lungs.
A miracle says I am worth a miracle.
In between breaths,
Karyn
When something is taken from you, you realize what a gift of giving it was, and so sometimes, many times, I just watch Karyn breathing. One breath at a time, and another, and another, until she catches me staring. Oops, caught again.
Wednesday June 24, 2009
Thank God for A Coincidence
Both Sides
Dear Donor,
Do you believe in destiny, or fate or divine providence? Being at the right place at the right time, something random, or God’s plan?