I draw from your strength Karyn and I am here to help with the heavy lifting. We all need help at one time or another and this was your time.
It took some time to realize I had to learn to receive. I was very comfortable with giving—giving made me feel good—giving led me to a sense of pride. Giving was my legacy and made me happy; taking made me feel bad and it was not me; I somehow felt smaller. But then over time, I realized that I was actually giving while I was receiving—that nice warm feeling I felt when I was the giver was the very thing I was giving to someone else when I was able to graciously receive their help. When I no longer did anything, I extended grace to another person, and we both received a gift.
Sharing is a big part of why we are put on this planet. The ability to accept the caring of others gracefully and gratefully is a mark of personal growth. Humility is the last lesson on the road of life we have to learn, as it leaves us vulnerable. Being able to receive humbly is a greater gift than giving. We have been told that “It is better to give than receive,” but I believe that receiving is a greater gift, to receive is to give.
Allowing others to help you is a way to let people share their gifts with you; holding your hand and helping steady you is a gift. Others want to help you because they care about you. If you are too proud to accept the gift, you are hurting two people. Be ever so patient with yourself, as I know LAM and Lung Disease is not easy.
Being healthy it is sobering to me that one day, if I live long enough, the legs which have been on thousands of hikes and walks will no longer get me out of a chair or across a room without assistance. Hopefully, there will be loving, caring arms to lift me, and hands to hold me, and I will know, like Karyn, that I am receiving the love back I gave to others. Giving is a kind of feedback loop with no beginning and no end.
My wish to all of you caring people in our lives is to help us when we are in need, and the opportunity to help others with a glad heart.
Thursday, June 11th
Cliches
The Other Side
Dear Donor,
As a LAMMIE, you avoid soy. Setting up the feed tube last night, the ISO source is high in soy. Just because you have a transplant, you carry in the back of your mind that LAM is still there, and LAM can migrate from other parts of your body to your lungs. Even when IT’S not there, IT’s there.
So today, let’s draw a line in the sand. Show those LAM cysts who’s in control. Take control of all this. Are there any clichés I’ve missed?
LAMMIES, let’s take the day off! Let’s show the LAM cells they don’t have power over our lives. Let’s not talk about LAM. I’m not going to write about LAM. Let’s make those cysts wonder what’s going on. Let’s show them that they don’t have all the power over our lives.
Beware LAM. No L word today.
Sh!
Richard
Friday, June 12, 2009
The Lung Badge of Courage
Both Sides
Dear Donor,
This morning in Durham there was a sunrise made to order, an awakening in a sky that was flecked with pinks and golds and wisps of clouds backlit by the rising sun. Hopeful signs. Did you send them to me, Donor? The fourth day of rehab in the bag. On the way to the magical 23. Who knew 23 was lucky?
There are no rehab sessions on the weekends. I wish there were, as does Karyn, but I know she does need a break, and healing also takes time, not just the 23 days at rehab.
I so hope your family is healing.
I asked Karyn if facing a lung transplant and the recovery and always knowing that she must protect your lungs, made her courageous. Lung transplant surgery is like being run over by a Mack truck, and like no other transplant, is always exposed. Every time you take a breath, Karyn exposes your lungs. Karyn, of course, said off-handedly, “No.”
I found Karyn a year or so before her transplant on the floor of our upstairs bedroom closet, unable to catch her breath after simply trying to dress herself. How do you manage a simple smile when you cannot get enough breath to dress yourself and all you want to do is curl up in a corner and cry? Sobs came, heavier now, racking my body, slicing through me like hot blades. To breathe or not to breathe, that is the question. Such an easy thing to do, but for me it was almost impossible. I never imagined the big achievement of my day would be getting off the floor.
Life had become a mortal struggle, the tank by her side and the cannula in her nose; they were both her friends and her enemies.
Courage, I have learned, comes in many forms. There is courage on the battlefields of Afghanistan and Iraq, courage to speak out, courage to stand up for what you believe. All of those are very real. But I am talking about a very different kind of courage I think Karyn and the LAMMIES and the Lungies have and show each and every single day. Sometimes just getting off a closet floor, just taking the next step on a long journey, putting one foot in front of the other is an act of true courage. Sometimes it takes courage just to get through the moment and face another test in the next moment.
Karyn stared down LAM, the schoolyard bully. Lung disease is a bully with such a bad reputation that they no longer have to fight. Just the mere thought of it can send people running away. But all it takes are the Karyns to stand up to the bully, to diminish their reputation. That’s what Karyn did; she stared down the bully. Anyone can give up—it’s the easiest thing in the world to do. But to hold it together when everyone else would understand if you fell apart, that’s true courage.
To me, a coward is someone who runs away, who fails to act out of fear. For many lungies, fear takes up residence in their brains; a most unwelcome guest. No LAMMIE patient is a coward, no lung patient is a coward for one very simple reason. They are not allowed to be. How many LAMMIES or Lungies would love to run away from their disease? From the treatments, the pokings in every orifice, the ABG’s, the medications, the side effects, the discomfort, the pain? I believe at some point, all have felt that. Agreed? But it’s just not an option. They cannot run away. You cannot run away. So they are left with one and only one choice. Stand and face it.
Most people are never tested, never ever having to reach down inside themselves to find courage to do the simplest things. Those who are tested in ways they never expected, find something within themselves that they did not know was there. Their bravery takes my breath away.
The courage of Karyn and others faced with LAM and the untold myriad of lung disease; is not the kind of courage that is ever recognized. There are no medals, no parades, no invites to the White House, and rarely does anyone around them, stop to think about it.
Guess I have gotten used to feeling bad. I am not feeling sorry for myself, but you just get used to your new realities, good or bad—and it is always amazing what you can get used to—that’s when you find out how strong you are, not when you are going through a crisis, but when you have to keep going through it, day after day after day. When no matter how tough the previous day was, you have to get up and do it all over again—that’s when courage comes in—so maybe one day I will wake up and feel better. I do not count on it; I just hope each day that things will not get worse and I tell myself that no matter how hard, I can do it. This does mean it will be easy, but I hope there won’t be any surprises. I could use a no surprise day.
Every step I take is a mountain I conquer. I can do this, one step at a time, one breath at a time. Just give me a minute to catch my breath.
Courage of the donor’s family. Courage, when confronted with challenge, courage in the face of fear; to live the day, not the LAM. Inner courage is a powerful thing to witness. All I can say is Phew. Double Phew.
You can be brave, but that does not mean you do not get scared. Sure LAM scared Karyn. Sure the lung transplant scared Karyn. LAM scared her pretty much on a daily basis. But made Karyn a coward? Never.
Karyn and I do not know what the next moment will br
ing. It could bring defeat. LAM and the multiplicities of lung diseases, make us more aware of how fragile our lives truly are, and why we need to use our time ever so wisely; nothing cowardly about facing that.
Though we may feel like cowards, we are strong, but LAM and lung diseases, if anything make us stronger. We are all like the cowardly lion in the Wizard of Oz—all we want is courage and then we find we had it.
The sheer act of being here today, Karyn’s grace in how she accepts this reality, that truly defines her character. Karyn and your lungs had already won so much more than a medal.
When I help Karyn in the shower this morning, I see her main incision line, which swings horizontally across her chest, under her breasts, a clam-shell opening. The cut is fairly discrete preserving her bikini line (like she is ever going to wear a bikini again), and designed so the surgeon could lift her rib cage up, to access the lungs. There are slashes where the chest tubes were inserted to support your lungs, while they expanded to occupy the new space. Small nicks from venous lines inserted at various points, bruises from needle encounters, Karyn does look battered as if she survived a shark attack. I will always see these scars as badges of her courage, of your courage.
Maybe her scars are like a tattoo Karyn can look at and say there is a history there, a story to be told. Maybe her scars are tattoos with better stories to tell.
All our scars are earned and paid for, I suppose.
May I be as brave as you and your family,
Richard
Monday June 15, 2009
IT TAKES A LOT OF PATIENCE
TO LEARN PATIENCE
The Other Side
Dear Donor,
We walked ½ mile early on Sunday morning and were planning on a much longer walk in the evening, but we had received a call from the post-transplant coordinator regarding a bronch scheduled for tomorrow afternoon, so the feeding start had to be moved up, eliminating our nighttime stroll. Flexiblity is the watchword in the post-transplant world. Patience for all the changes.
Karyn is still stuck at four days of rehab. This Monday morning back at the hospital for a bronch, she was put under into dreamland. She also had her lungs tapped, with some fluids removed. The doctor proclaimed, “The lungs look good.” Thank you, thank you, thank you. “You should not operate heavy machinery, drink alcohol, swim, skateboard, or use roller blades.” Karyn giggled to me, “That just means I will have to return the front loader to John Deere.”
Karyn’s silver choker trach was removed and covered with a gauze bandage. The hole in her neck will take two to three weeks to heal over.
Tomorrow morning we meet with the speech therapist and more swallowing tests. Hopefully, Karyn will do well and get an up-grade in her diet. Last night, due to the scheduled bronch and no “food” after midnight, we started the GJ feed tube earlier, so Karyn could sleep without being umbiloco’d to the IV tower. Another giggle from Karyn, “Yippee, what a treat, I can actually turn over in my sleep.”
Patience is so very hard when you can see the light at the end of the tunnel, and being able to go home. But we do know if we are always taking our temperature to see if we are happy, we won’t be happy. I guess it’s like watching the clock; nothing can happen if all I am doing is watching the seconds tick off.
I remember on weekends, when I was young, I would walk with my cousin, Ron, to the local corner store, Akins Grocery, and spend pennies on an all-day sucker. It would not have lasted all day, but it could last a long while. The trick was to resist the temptation to bite into it, learn to savor rather than to crunch and chew. Stretch out the sweetness. I am a biter, and sometimes I just wanted to bite.
Without patience, we learn less in life, we feel less. Ironically wanting to rush and bite usually means less. Patience is bitter, but its cherry fruit is oh so sweet.
The problem with becoming patient is that you cannot practice it without being put in a situation that requires it. I am not a patient patient. We in Lung Land face the unexpected delay, the wait for lungs, the time in the hospital, the days of rehab. But then we fall totally under the domination of time, allowing the calendar to drive us, rather than calmly living in the richness of the moment.
To those waiting at rehab, you will have new lungs from someone as kind as our donor: and to those who have been transplanted, you have new lungs, and you can breathe. (Insert deep breaths here).
Karyn and I look to Patience as a guide, a time to heal, a time to form strong bonds, moments that take our breath away, Breaths of life.
Listening yesterday to my car radio and Symphony Pops and John Williams, and Star Wars, life cannot all be kettle drums and crashing cymbals. Living cannot all be crescendo. If only it could, but there must be violins, and flutes, a balancing counter-point.
There is a message in the lollypop for me to grow and to perfect myself. Thanks to you, Donor, Karyn and I can lick all things together.
I hear my grandmother’s words that patience is to be treasured, that patience carries a lot of wait. We feel the wait. I need to be patient and that may be one of the biggest challenges yet.
We are trying to be patient. Lord, please give me patience, but can you hurry it up? Both of us want to bite into the lollypop.
With ever-growing love and deep admiration,
Richard
Tuesday, June 16th
So What’s Chew
The Other Side
Dear Donor,
Karyn and I drove in early this morning to the DUKE South Clinic for her up-dated swallow tests. This time we were prepared for the green yuck and brought toothpaste and a toothbrush. You know what Kermit said, “It’s not easy being green.” A camera is inserted down Karyn’s nose to the vocal cords, and she is given different items to swallow in different ways other than a brief pause on the tip of the tongue, probably caused by the brain telling Karyn how to swallow correctly. Karyn passed with flying green colors. I am sure Kermit is very proud.
The clinician will up-date Karyn’s records and recommend full diet other than hard breads, and crackers. We see the doctor late tomorrow at clinic, and I presume Karyn will be on a full-food diet at that time. I am not sure how this works with the feedings at night. Karyn just loves her feedings at night. (Yeah, right). The GJ is very uncomfortable, knotting in her stomach and forcing her to eat even smaller portions of currently-allowed foods.
We will also be at clinic early tomorrow morning so she can do the litany of tests, including the ABG, blood draws, chest x-ray, and PFTs. Tomorrow, we will get the results of the biopsy of her lungs taken yesterday during the bronch. The test determines what, if any, rejection is occurring.
Last night, we walked ¾ of a mile, the greatest distance Karyn has walked. I am a harsh taskmaster and this is not hard to swallow.
Clouds have gathered beneath a bruised and purpled sky, much like Karyn after the surgery. In the growing darkness now, the sky is the color of charcoal and the air thick with the possibility of summer rain. A fine silver rain, like cobwebs falling. Thousands of hands began tapping on the roofs. Large droplets spattered the window, hung for a bit, and then joined by others, slid down the window pane. The rain and sky rumble away, like the growls of a predator stalking its prey. The rain has subsided to a soft mist that seems to dance in the early summer twilight. A light mist broke through the gray sky, unleashing streams of pure sunshine, like our own personal sunbeam. The rhythm of the wind blends with the rain. We take a deep breath and the cool dampness of the nearby trees fills our lungs.
Every breath we take,
Love, Richard
The Other Side
Dear Donor,
Wednesday June 17th
Karyn walked one mile in 20 minutes at rehab. Her PFTs were significantly up. The bronch did not show any signs of rejection. No bronch needed until two months from now. A great early father’s day present
!. Thank you Donor.
Karyn is off the feed tube and has an open diet. Off for a burger and fries for the young lady.
Thursday Karyn walked one and one/third mile in 30 minutes and without realizing or exerting herself, walked a mile Friday. At rehab, she also worked the weights, the Nu-bike stair-stepper and floor exercises.
Two weeks out from the hospital and the Karyn of new is becoming more and more the Karyn of old.
Parking in regular spaces at the mall. Walking throughout the mall. No more handicap parking. The malls are alive celebrating your lungs in Karyn.
Tell God I love you,
Richard
“Take Your Best Shot”
On Both Sides
Friday June 19, 2009
When I was home for a week in May, I ended up downstairs in storage looking for a book, and instead came across an old box of even older photographs of Karyn when she was a child. One faded shot popped back into my mind yesterday: It was one of Karyn, age 6 or 7, cradling under her arm one of those inflatable punching bags. Remember those inflatable punching bags we had as kids? You’d hit one as hard as you could, it would fall back, and then pop right up to take another shot. I had a bag like that also; most of those bags had clown images on them, although I don’t know why someone thought it was a good idea to teach us kids to beat up clowns.
But that’s sort of what it’s like to be a LAM, or lung patient. You get kicked in the gut, fall down, and then pop up again, ready for the next shot. At least you try to be ready. You take your bronch and hopefully in the next few days, the findings show there are no signs of rejection. You go active on the list and wait and wait and wait like our good friend, Gene, has done for over 50 days. You fight through three weeks of ICU like John is doing. You battle through “stroke like symptoms” as Karyn did. You go back on oxygen after your transplant like Robert is doing—fall back like the clown to bounce back to go forward.
The Taste of Air Page 11