Road Trip #1 2-27-08
Dear Friends,
It is time for another update on our lives. Thank you for your ongoing interest.
After a week of staying at home while my immune system recovered from heavy duty steroids, Ana and I went to a CF education day at California Pacific Medical Center in San Francisco on Saturday the 23rd. It was truly a trip down memory lane. We met Dr. Hardy, whom we hadn’t seen in nearly 15 years! We also saw a favorite nurse from LA Children’s Hospital, DJ, whose support group we used to attend as teenagers. DJ and Ana and I remembered a few precious friends who are long gone. I appreciated my new friend Rich coming to see us speak, and our connection is amazing. Ana and I spoke to a handful of families, and enjoyed to see two young teens meet and learn more about CF. Truly life is repeating; there are others fulfilling their lifestories now, learning, growing, becoming their own people while managing their CF.
Ana and I are privileged to both be healthy enough to have our first of three road trips the day after, on Sunday. We drove to Orange County; next week we head to Seattle, and we continue to plan our cross country book tour road trip in April-May!
The little Honda was packed to the rim for a 3 day road trip. The bickering has started already. On Sunday, after three hours of driving, we switched drivers, and an hour or so later, Ana yells, “Shit! The gas light is on!” We were on one of those remote areas of highway 5, and the accusations started: “You should’ve told me the gas was low!” “You’re the driver! It’s your responsibility to notice the gas level!” “You are too focused on talking on the phone!” “We should’ve gotten gas earlier!”
Then we burst out laughing.
This was 400 miles. What will 6000 miles be like?!?
Thankfully, after a few detours we found a gas station just in time.
Along the ride, Ana and I spoke to a few long lost friends. I called Denise, my former CF camp counselor, to invite her to our reunion. She couldn’t make it but we reveled in how long it has been. Denise was my age when she was a counselor for “The Famingos”, my cabin. She was thrilled to hear that we had made it, and I hope we can stay connected. Ana also learned that her camper from CF camp’s (who died in 2001) mother was engaged to a man who works with a friend, and learned about the book. Ana called this mother to reminisce about this camper. What miracles!
Six hours later, Ana and I spent an hour at home, visiting with Dad briefly. Dad happily reported about his jury duty experience last week. It was the first time he served on the jury, and he spoke with energy and enthusiasm that only a recently naturalized citizen could have! Meanwhile, my Mama was also called to jury duty and was just as passionate. “I hope they call me! I hope they call me!” she kept telling us. Oh, the pride of being American!
Then we head to Seal Beach for a precious “Cystic Fibrosis Summer Camp reunion”. We reconnected with some of the 50/60 year old-plus men who created and sustained our Heaven on earth when we were kids. Since 1968 or so, CF camp was the most sacred place to celebrate friendship, freedom, and life, and cultivate depth, trust, hope, and love while sharing a tragic illness. We saw a few friends we hadn’t seen since the camp closed in 1995. Our book has allowed us all to make that extra effort to reach out. We spent 5 hours eating and laughing and drinking beers, reminiscing about the old camp days and all the friends who came and went. It seems that 90% of those kids and young people, as far as we know, have died. There are so few survivors and I don’t know why we are so lucky. But I think our friends were happy to see us alive and well, along with Denise, who is 11 years post -transplant. These guys worked their butts off for 30 years to raise funds for camp and prepare to offer a free week of respite from disease that these kids so desperately needed. They spoke of the old CF- where kids died so young, when they suffered immensely from chronic diarrhea and coughing, when we didn’t know a thing about cross infection but only knew camp was the most healing environment these kids would ever get. Besides all the interesting characters who walked through that camp, we laughed about the ‘death hike’ and the skits and the behind the scenes insanity that would be impossible in today’s legal world. Most of all, we remembered my hero and role model Bob Flanagan, for who he was, not what he did. These friends talked about how, for many of these kids, CF was only one challenge in their lives, but they faced so many other social and personal problems. The one consistency in their lives was the loving care and dedication of the CF camp staff. These men gave blood, sweat, tears, and pure and utter exhaustion year after year to make sure the CF kids had one joyful week in their lives to live for. That night, my heart expanded to a whole new level as I finally realized how these men exhibited an immensely godly level of love for these kids. They made a difference. And we’re still here to tell them that. And we shared that with the world through our book.
The next day, we joyfully hung out with our cousin Britta’s inlaws, the Hirsches, in Seal Beach. We shared so many compatibilities and enjoyed the conversation so much, I felt like I was talking to lifelong friends! I took a jog to the beach, and struggled with my muscle weakness, but sprinted along the water! The air felt fresh, even in Long Beach. We shared a meal together and prepared for a book club gathering in the evening. Mrs. Hirsch has been a member of her book club for 20 years, and about 15 people came, most of whom had read the book. I was especially grateful that my other cousin Julia and my friends Sally and Ethan joined the event as well. I felt so grateful for the Hirsch’s hospitality, openness and generosity to host this event.
Ana and I spoke for about 25 minutes and then opened up the gathering to questions. Although I am getting very tired of talking about myself and my disease and my transplant and my life, I appreciated everyone’s interest and sincere questions about CF and transplantation, which is the reason we wrote the book- to educate! People also seemed interested in the characters in our book, and the family dynamics. Ana and I tried to split the discussion and talk as naturally as possible, which is always a challenge, but the comfort of the group made it easier. All of the friends were so loving and supportive, and seemed to genuinely like the book. I love how some people feel more comfortable talking about their health issues or family problems because our honesty in the book has given them permission to do so.
Late at night we drove to our parents’ home in Pacific Palisades to sleep. We woke early to spend some time with Mama before she rushed off to jury duty, and Dad to work. We shared the events of the weekend happily. Then Ana and I packed up and drove back north, passing green hills and fields, and the peach, plum, almond orchards of the Central Valley just started to burst with blossoms. The sky was blue and the sun was shining, we had plenty of gas in the car and we felt so uplifted by the love we had been part of with these very special people in our lives. How fortunate!
We truly recognize that the greatest gift of this book has been reconnecting us to all sorts of people from each day of our lives, creating a reason to reunite. We are all the same people as we were back in 1983 and 1990 and 1995 but just our outsides have changed, and now we have courage to talk to each other at a different maturity level. I feel we all have a deeper awareness of life that allows us to relate more authentically, without fear of judgment. It feels to great to grow older, and to learn where people have been in their ‘memoir’.
Ana and I drove home and went straight to the pool to swim. We swam together for the first time in over 13 months. It was amazing! Ana is just slightly slower than me, and I am blown away by the miracle of her recovery. It also means I have to train like hell because I have serious competition now. She coached me on butterfly and managed to swim 10 laps without stopping just shortly under my time. Amazing! What a celebration. I thank God, her donor, and the spirit of Ana!
I wish you all a beautiful week. Please take care and thank you again for all your support for our book, our blog, and our lives. May this spark an interest in you to reconnect with someone you miss… Yahoo People Search does wonders!
Isa