Day-to-day life 4/7/09

Dear Friends,

Thanks to one friend in particular, who asked, “Are you no longer writing your blog!?!”, I’m writing again after a good hiatus. Ana is simply too busy to write, but luckily she is healthy and engaged(ask her how literally) in a very rich, connected, happy life. I have more time to muse about the last few weeks. I’ve been busy with normal day to day life: loads of laundry, home improvement, walking the dog, emailing, bagpiping, reading, exercising, keeping in touch with friends, finally spending time with Andrew. The ordinary is precious and I wouldn’t change a thing! But the extraordinary part of life includes ongoing book-related connections with people all over the world touched by CF and transplant. All over the country people waiting for transplants have emailed us, sharing their narratives and reaching out for help. It is amazing how much life repeats. If CF is such a rare disease, think of the parallel lives in the cancer, AIDS, or heart disease communities. So much suffering, but by connecting, it need not be in silence.

Ana and I have been discovered by a group of passionate Japanese strangers-turned-friends, who are on a mission to plan a book tour extraordinaire for Ana and me in October, when our Japanese translation comes out. They are eager to have shameless, happy, active and proud transplant recipients share their stories and mobilize the public about organ donation in Japan. I am absolutely blown away by the energy offered to us, with such generosity and grace. I feel like the luckiest person in the world. Gosh, if only my Japanese didn’t sound like a first grader.

In March, I gave two successful talks at Seattle Children’s Hospital, and spent a few days with my two cousins and their girls. It was my cousins’ mutual birthdays (they are born two years apart on the same day), and it was so special to be all together, with Ana, to share this celebration for the first time in our lives. One cousin is living in India and is visiting just for a month. As they blew out their candles, I noticed some grey hairs and a few lines around our eyes as we laughed. The Stenzel women are all getting old together… Even more fun included going to my cousins’ kids preschools and playing bagpipe on St. Patrick’s Day. Ana warned me about going into a germ den, but I chose to take my precautions and go anyway. With a crowd of 5 year olds gathered around me on the floor, I talked a bit about the history of bagpipes (I’m such the expert…) and then the kids each got a green ribbon. We went outside and I taught the 5 year olds to march with arms swinging high, and they marched with me playing around the school. The next day I returned with a teddy transplant bear and I explained why bagpiping was so special for me. I found it challenging to talk about organ donation (the death part) with five year olds, but the explanation was simple enough and death means little at this age… wish it could stay so! Then with a few eager volunteers, we gave the teddy bear a transplant. We put a mask on him (and on everyone helping- how I could feel safe), we put a fake IV in (I used my water bottle), and unzipped his chest, replacing the dirty felt lungs with pink felt lungs.  Then I gave away Donate Life freebies. That was my most enjoyable transplant public speaking opportunity! Whether they got it or not, I planted the seeds. The kids were so innocent and asked so many questions openly. Even if I risked my health a small bit, I felt like I was truly alive in the presence of children.

I spent a few more days visiting Seattle with my two closest friends from high school. We went to Whidbey Island and did what girls do- we shopped, ate cheese, chocolate and high-end food, talked endlessly, walked not enough, and drank wine, bickered, laughed and cried and gabbed til 5am. We opened up our hearts and souls with nonjudgmentalism, acceptance, listening and nurturing. We gave and asked for advice. And, yes, we talked about men…everything. It is such a gift to get older with our childhood friends! In one store we met a group of ladies who were celebrating the 20th year of getting together as friends; Ana and I are proud to have shared 5 years of reunions with Nancy and Sally… and we aim for many more. These are the gifts that donor families have no idea they are giving… a continuation of love that extends beyond the recipients’ survival and family.

Last week, Ana and I spoke at Google for Authors@Google, thanks to a friend named Aly who works there and collaborated with CF Foundation. We gave a well-received talk to an intimate crowd. It will be on youtube soon. We had a fabulous buffet (free) lunch on campus. If I worked there, I’d gain many, many pounds!

On Saturday, I went to the California Transplant Donor Network Annual Donor Ceremony with my bagpiping band. We played two tunes in the processional. I was very nervous, but it was such a tremendous privilege of me to play in front of 1200 donor families. I attended this event in 2004, two months after my transplant, and saw another band perform here. I was so inspired and mesmerized by the bagpipes, I called the CTDN organizer and asked for the contact. Through that connection, I found a teacher and then joined the San Francisco Stewart Tartan Pipes and Drums! Thus the dream began. As usual, I was deeply touched by the large number of Hispanic donor families. There were only 5 people of Asian descent in the 1200 donor family members. How sad is that!

Ana has been busy working on a project for lung transplant recipients. She organized a big meeting and this weekend we hosted two of the visiting recipients at her house, who happened to have CF. Melissa is 11 years post-tx, and Chris is 3 years post-tx. We are all in our mid-30’s. We had a great feast Saturday night, and the four of us CFers competed on who could eat the most. I think we ate for 8! On Sunday, we all went to the redwoods and took a nice hike through the forest. It was warm and the ground was fresh with green carpet. New blossoms were coming out, and all of us are so ecstatic, we noticed everything.  We talked about the amazement of being alive, how transplantation changes everything, our goals and dreams, our eagerness to live hard and try everything… when these friends talked I felt like I was talking!

Our tour took us to the town of Pescadero, where we bought the Stenzel favorite, artichoke bread, and drove down to the beach. We climbed down some pretty cliffs to sit on the sand and tear apart the bread, savoring each bite. We shared enzymes and hand gel, laughing like this was just like CF camp. Our mid-continent friends waded in the ice-cold ocean and got excited over the seals basking in the sun on the islands nearby.  We absorbed the sun, the salt, the mussels, the clear and foamy water, the anemones, the glorious life all around us. One friend nearly died in ICU last year while Ana and I competed in the Transplant Games, missing her as our greatest competitor.  As we screamed together on the beach with our toes immersed in the ice water, she reminded me that miracles do happen, that positivity can literally keep a person alive. The four of us, for one poetic day, stopped time and relished a moment we wanted never to end.

As I reflect on the last few months, I have been trying to adjust to a calmer life than the last year. I think I developed an addiction to email because of the constant unexpected, exciting email ‘hits’ that would offer the next event, talk, trip, or opportunity. I got caught up in the excitement of being so public and I’m not sure why. This blog is public and I am slowly stepping away from that life. I think the validation for overcoming the challenges of CF has been gratifying to the ego. But I don’t do it for ego. I like to be needed and wanted, and I love to connect to families who are seeking some hope, some solace from their fears of the future with CF. Today, for example, I got an email from a stranger with CF who had a dry run for transplant and was feeling pretty depressed and sick following anesthesia for nothing. I was entranced by his blog and found myself getting sucked into someone else’s crisis. In an email response, it helped to offer a tiny bit of solace through openness and sharing of our mutual stories. But I also feel like I’m doing what I love- social work or counseling- because I have the time. I think it’s time for me to get a real job.

Anyway, this blog entry ended up to be pretty long. I have no wise words to share, just a pleasant rehashing of a good, content life. I know many people who are pretty miserable these days and my heart goes out to them. I hope by reading this you’ve been distracted briefly. That’s all I can offer to you besides my prayers.

 May you be blessed with routine life, good friends, sunshine, warmth, and nature. Thank you for your loyalty to our blog.

Love, Isa

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