Sunday, July 27, 2008

Re-Entering the Atmosphere

Anyone who knows me knows that I am addicted to two things, coffee and television. If you read this blog, you will know, I have recently weaned myself off of coffee. And if you live with me (hmp, hubby) you know I cheat sometimes. But I drink waaay less than I used to.

BUT! Unlike coffee, television is not something I have any interest in giving up. Some people drink a beer at the end of the day to relax. Some people take a walk to wind down. Some people cook a big meal to chill out after work. I watch TV. If I'm sad, if I'm bored, if I want to relax or get out of my head, I turn to my old pal, the TV.

I was reminded this weekend of the time immediately after transplant (both of them) when I turned my television off. I would try to watch it but it was unbearable. The silly banter, the mindless "probing hot topics," the unfunny jokes and the actors taking themselves way too seriously...I just couldn't stand it. TV ceased to be entertaining, instead it was maddening.

There is a time after a major medical trauma (or other life event) in which the way we live our lives suddenly seems very superficial. There is a need to express and discuss a deeper reality of life--the realities that come when you face death and are trying to re-acclimate to life on earth. The world has changed colors, and as our rocketship barrels towards the earth's surface our life is unrecognizable. To not discuss the descent to earth would be like not aknowledging a stick in the eye.

Our society is not very good at accommodating those who are trying to re-enter the atmosphere. I remember the December after my first transplant, I accompanied a friend to a work Christmas party. The usual "What do you do?" and "Where are you from" and "How do you know so-and-so" ensued. I just couldn't play the game. As much as I wanted to be superficial, I just couldn't and I would answer the questions honestly. "I am not working right now, I am recovering from a lung transplant" was the beginning of the end of my new conversation. The party-goers were clearly not expecting that response and they compensated for my uncomfortable honesty with an even broader, faker smile. They did the best they could to bypass any more transplant conversation and made excuses to leave me standing alone with my eggnog.

I'm not bashing people. I understand this was not normal party conversation and why they would want to exit stage left. We just aren't trained for this type of honesty in our culture.

What I do want people to understand, though, is the dilemma that faces those of us who are attempting atmosphere re-entry after a major medical intervention. We have two choices: watch TV or turn it off. Grin and grit our teeth through what feels like an unbearably phony conversation or keep it real. For me, the choice was simple. I had to speak my truth--not out of some superiority or judgement--but because it was all that seemed to matter at that time. Not talking about my transplant would make me disapear.

So, if you find yourself at a party and you spot someone alone with thier eggnog, take a moment to pause. Perhaps you have spotted someone who is attempting to re-enter the atmosphere after a medical problem, divorce, death of a loved one or any other life event that is too real to ignore. If you're brave, maybe you can walk up to them and ask "What do you do?" and expect to hear the truth as it sounds when someone has turned off the TV.

Saturday, July 26, 2008

Thank You

I have received many very warm and very celebratory emails and comments regarding my 35th birthday. Because my mother's "write a thank you note" lessons did not stick, I tend to be very slow and disorganized about responding to such wonderful well wishes.

I want to sincerely thank, from the bottom of my being, everyone who sent me Happy Birthday wishes. It is the people in my life that make 35 so amazing (that and the not being dead part). So, thank you thank you thank you for being a part of my life and for being kind enough to care that this old gal just racked up another year of living.

I have added the picture of the Butterfly Girl because it couldn't express how I feel more if I had drawn it myself. (I bought it off of cool site) Butterflies are the symbol of lung transplant for a good reason--we spend years locked inside our illness cocoons, waiting for the day we can fly. When the donor lungs come along, we begin the slow process of breaking through that cocoon and, when we do, we have emerged transformed. For the first time in my life, I could really fly. Today, I am the Butterfly Girl with arms extended to the heavens with gratitude and overwhelming joy. I am flying freely and often now and I am so happy you are with me on this leg of the journey.

With all my love and gratitude...

Opinions, please!

Hi all!

Boy, things are buzzing here. Busy busy busy. I am so excited about the work I've been doing and equally excited about some ideas I have for the future. They are top secret but, hopefully, I can tell you by the end of the year. Oooooo. Aren't I so mysterious? :)

So, I got a spur of the moment yearning to change my website. I'd love your feedback. It is very different than before. What do you think? Help!

Sadly, that's all I have in my blogging bag of big ideas for now. I know I have been slacking again. Sometimes, I just don't have much to say!

Hope you're having a happy weekend!

Wednesday, July 16, 2008

35: A perfectly imperfect life.

Tomorrow I will be 35. I never thought I would make it to 35. I almost didn't. I am so grateful I tear up every time I think about it.

26 years with CF lungs. They were difficult but they got me through the hardest part of life--adolescence.

4 years with my first set of donor lungs. They may have failed me eventually but they also taught me the greatest lessons of my life--The Divine Healing of Dying, That Which Is Important and acceptance in the truest meaning of the word.

4 + years with my beautiful, healthy second set of donor lungs. Since March 2004, my life has blossomed in a way I never could have imagined. My sweet husband, my exciting new career, my amazing experiences of living with a healthy body and love. Lots of love from old friends, family and my new friends I have met in this latest leg of the journey. I am truly the most lucky human ever to walk the earth.

Even if tomorrow was my last day here on earth, these 35 years have been so full and intense and breathtaking, I could never cry a tear for my departure. I have lived. I will continue to live as long as these lungs and this body will allow. I am profoundly and completely grateful.

Some people feel sad for the days they grow one year older. I rejoice. 35. 35 feels like such an accomplishment. Such a gift. A gift I never thought I would ever open and one that took great effort on the part of so many people.

Thank you first, to my family who have traveled with me on this journey to 35 since July 17, 1973.
Thank you to my doctors, surgeons and nurses (Becky in particular) who have kept me well and saved my life...many times.
Thank you to my donor families for making the choice to let another live even during the time of great loss and grief.
Thank you to my husband for being so kind and making my life complete.
Thank you to my dear friends for holding my hand when I have felt weak and running with me when I was strong.
Thank you to my therapist who has kept me sane when life got insane.
Thank you to James for taking a chance on me, providing big opportunities and becoming my creative soul mate.
Thank you to everyone who has made my life richer, bolder, sweeter, funnier, happier and more meaningful.

I truly have so much to be thankful for. 35. What a wonderful age. What a wonderful year this has been. What amazing goals and plans I have on the horizon. What a perfectly imperfect life.

35. So sweet.

Friday, July 11, 2008

A Convention Center Filled with Gratitude

As I went rushing out the door from my office, I felt the familiar wave of dread--I was running late for a very important meeting.

It had been one of those days--every traffic light turned red just in time for me, the printer jammed every time I needed something quickly, the internet went down and I had no access to emails...yea, one of those days.

When I got to the hospital parking lot, I had made up just enough time that if I found a quick parking spot, I might make it right on the nose. Well, since it was one of those days, the hospital was having a parade for the children and the only parking left in the deck was on the top two levels. Making my way up was slow, to say the least. Happy parade attendees meandered in front of my car and the line of cars in front of me happily stopped to talk to people walking by. By the time I got to the top, I was banging the steering wheel in frustration.

I unloaded my stuff and ran for the elevators. You guessed it, they were very slow.
When I was finally delivered to the hospital hallway, I made a dash for it. My calves were killing me--those high heels are not meant for standing much less running.

As I cursed the heels, the lights and the slow parking brigade, I was suddenly struck so hard that I nearly fell down. I was running to my meeting. Running to my meeting. In heels. My calves were the problem, not my lungs. My lungs barely noticed the pace. I was running to my meeting and I was humbled. I was grateful. I was fully aware that if I was late to the "very important meeting" that was really ok.

These moments of gratitude in the midst of the rat race are so profound and beautiful. I feel like the luckiest human being on earth.

Today, I am going to the Transplant Olympic Games and I will share a booth with Ana and Isa. I will be surrounded by those touched by transplant--recipients and donor families. I am so honored to be surrounded by these special people. I look forward to a convention center filled with gratitude. I can't imagine anything more powerful than that. Can you?

Saturday, July 5, 2008

Children of Dying

As I find my way down this path of public speaking, my opinions, my topics and my style continues to evolve. The truth is, I am happy with the work I am doing but I feel that it has not yet reached the potential of where it needs to all aspects.

Specifically regarding the content, though, I feel a deep rumbling inside me (and it's not my lunch) of ideas that are forming, attitudes that are sprouting, a message that is waiting to be heard. I feel in my guts that I am on the beginning of this journey and there is so much more to say that I don't even know how to put into words yet.

I was meditating the other day (yes, I am doing my homework and "finding the way back to me") and I think I heard a few whispers of that which is bubbling inside.

I have many interests, many things I believe in. All of those things are important. I can not deny, however, that the thing I find most compelling to ponder and to talk about is dying. Because of my experiences, it saddens me that we live in a culture where death is so hated and feared. It saddens me that we live lives of complete denial and only wrestle with the hate and fear when there is nowhere else to run.

If you had a child who was born with a condition that you knew would take their life, would you talk with them about it as soon as they were old enough to understand? Would you do your best to help them live a happy and fulfilled life in the time they had here on earth? Would you teach them about That Which is Important and place value on different things than the rest of our society? Would you do what you could to help them come to terms with and even accept their own mortality?

If you answered 'yes' to any of these questions, I have news for you.

We all have this condition. It's called the human condition. All of us will cease to exist some day, all of us live lives of uncertainty. All of us have the opportunity to use death's approach as motivation to shift our focus onto That Which is Important, to live fulfilled lives in the time we have here on earth and to come to terms, maybe even accept, maybe even embrace, our own mortality.

But what do we do instead? We buy into the hype. We believe our parents or our friends or our culture when it tells us that death is the worst case scenario. We deny death's presence until it overwhelms us with the pain and confusion of a great loss or our own impending end. We do not take time to make peace with death until we are in a death crisis. A death crisis is not a time to understand what death has to offer and this approach will only reinforce our culture's attitude of death as enemy. We wait to long to process the pain and grace of dying and so we never have a chance to take a more balanced view.

I find this sad. I find it silly. For those with the human condition to pretend that death is not real, to not teach our children about death's touch, to only see its presence as horrific, all of this I see as a counter-productive approach to life. There is an elephant in the room of each of our lives. Shouldn't we see what happens if we stop ignoring it?

So this is what I am beginning to understand. There are people who will read this blog post and find me to be morose, macabre, dark, sick, dramatic, rude, uncouth...I'm sure the list goes on. Those are not the people that are my audience.

What I know now is that, part of my work here, is to talk to The Children of Dying. The Children of Dying are people who, either by circumstance or curiosity, are ready and eager to learn the lessons death has to teach us, to speak of the elephant in the room and to make peace with the grief and the grace of death.

This might not be much to go on, but for now, this is all the rumblings will tell me.