Journal On The Road
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Saturday, 03 October 2009
Robin’s Trip Diary- Reflections of a CF Mom “1″
Posted by Robin
(I am Robin Modlin, a friend of Ana, Isa and Andrew for almost 20 years. I was invited to go on this trip to Japan to support my friends in their endeavor to raise awareness about organ donation, transplant and cystic fibrosis. I am also mother of another friend of theirs, 28 year old, Anna, who lives with cystic fibrosis and the hope of one day having a successful lung transplant.)
The Power of Two – A Trip to Japan: A Diary — Day 1
I am sitting in my window seat flying to Japan with Ana, Isa, Andrew, Marc, Nickolas, Matt, Ashley, Yasu. Marc, the director of the documentary, said at the airport that he feels magic connected to this project. Well, of course, this is about miracles, life resulting from death, compassion and the ultimate gift. What could offer more magic, spirit and hope?
I brought small gifts for each of us. In envelopes with a small note I offered a thin long silver token marked with a word for each of us to contemplate. Marc and Matt received the word courage, Nickolas and Ashley strength, Yasu soar (to fly), Andrew life, Isa, transformation and love, and Ana transformation and life. My word turned out to be love. I have come on this trip to learn more about love.
What a fullness I feel in my heart. I have the opportunity to reach out to people of another culture who know the suffering of chronic disease. My 28 years of being a parent to a child with cystic fibrosis has lead me to this journey. I carry with me the sorrows, the challenges, the hopes and the dreams of a young mother when told the life threatening diagnosis of her child. I carry with me the strength I have gained, the insight into life, the deep and meaningful connections I have made because of CF. Many times I have hated this disease, I have struggled with the pain of watching my child and family suffer and I have wanted it to simply go away.
On this trip I carry it all with the hope my daughter, Anna pushes transplant as far into the future as she can fighting the ravages of CF lung disease. But when she can fight no longer, I carry the hope that she will be blessed as Ana and Isa with a successful lung transplant.. That is why I am on this trip. I am fighting for her in the spirit of fighting for all in need to be able to receive the miracles of modern medicine’s gift of transplantation.
This trip is dedicated to the benefit of all. Anyone of us may fall to a serious illness that could lead to organ transplant. And on the other hand, most organ donation requires that someone must give up their life. What a tragedy. But, the chance to turn a tragedy into an offer of the ultimate gift, creating a miracle of life for another, is so profound. On both ends there is a miracle.
Robin
Day 2
Breakfast buffet offered a green salad with Italian or Japanese dressing, macaroni salad heavy with mayo dressing, bread, toast or roll with jam, orange juice, a cup of soup broth, hardboiled egg, coffee or tea. This hotel reminds me of the one where I stayed in Venice, Italy last year. European in feel but here Japanese in influence. The room is comfortable with free Internet access, modern Euro style furniture and powdered green tea for self serve. The bed is extra, extra firm reminding me of a futon and the curtains are long dark and decorated with western style trumpets, the musical instrument. The bathroom has a toilet with a warm seat and a deep tub with soda tablets for soaking.
After starting our day with green salad we left the Villa Fontaine in Tokyo with blue sky to head for the subway system. Ana and Isa were to give a talk at a local university where there was a conference for transplant nurses. Our guide, Naomi, their dear childhood friend from L.A. who is Japanese living now in Tokyo pointed the way. After leaving the subway station the sky was full of rain and our umbrellas covered us as we walked. Upon arriving we met Uko. This was a touching meeting. Uko also has written a book in Japan that was just recently published about her son who needed multiple organ transplants including the bowel. This is a very serious and dangerous transplant and rarely successful. Her son of 8 years old did not survive. Uko’s story is about how she had to go to America to receive care for her son and to have the transplant. It is a story to appeal to the Japanese hearts and minds to open to the need for more awareness and compassion for organ donation in this country.
Uko was so happy to meet us. The warmth and love that comes from common challenges and sorrows shared is very genuine and has no barriers. I do not speak the language but I know the longing in my heart for my child with chronic illness to have a chance to survive beyond the odds. Our eyes met with tears.
The talk was well received and the day continued with a lunch in an Italian restaurant offering spaghetti noodles with Tuna and Japanese sauce…….hmmm, thought I would pass that one up. Next, we prepared for the press conference announcing Ana and Isa’s arrival in Japan and the publication of their book translated into Japanese. Andrew and I sat at the front looking as though they had a contingent from America. The speech was all in Japanese that was practiced for 6 months. All went well. There was one reporter that we all liked. He was warm and animated and said he was reading the book. He wondered how they could reveal so much personal detail. The answer was that they were Americans and this was part of our culture. The honesty and freshness of their story will be very revealing to the Japanese who are so very private and do not want to stand out with their own personal history and opinions. It will be very interesting to see if the book catches on.
Dinner for the Japanese “dream team” of people who helped to make this tour possible was held in a Chinese restaurant across the street. One of the first courses was an appetizer, jellyfish. Well that is something I have never had especially in a Chinese restaurant. It tasted like soyu flavored chewy, chewy strips. Another dish was a large plate of scrambled egg with a tomato sauce and shrimp. This was Chinese? Oh yes they said. And where is the rice? Oh, that is served after as a rice porridge, very Chinese. A few good tastes were had, the jellyfish was not bad but, I think I prefer Chinese food in America. I am looking forward to some Japanese, Japanese food soon.
At the dinner I met another woman whose heart was opened to the problem of the lack of organ donation in Japan. She was instrumental to raise 1.5 million dollars to pay for a heart transplant for a small Japanese child to be done in America. The child is well now and going to school in Japan. She said she was highly criticized by the press and many Japanese people for this effort. She is determined to open their hearts and change minds, another deep and compassionate soul.
Tomorrow is the green ribbon festival for transplant awareness and foot races. I will wear my running shoes. A typhoon is not far away in the Pacific but tomorrow is supposed to be mostly sunny. We will see.
Robin
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Saturday, 03 October 2009
Reflections on Day 1: Japan Book Tour
Posted by Ana
Reflections on Day 1:
It is 5 Am on Oct 4th. I have jet lag and haven’t been able to sleep since 4. My body amazes me. I was awake for 22 hours on Oct 2 and...
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Saturday, 03 October 2009
Photos from the 10/3 Press Conference near Tokyo Station
Posted by Ashley
Have a look at some of our photos from our first event in Japan! We started the day off in a Starbucks, had an Italian lunch, met the press, then had a nice Chinese dinner. The...
- Thursday, 01 October 2009 Episode 2: Director Marc Smolowitz Posted by The Power Of Two Japan Tour Podcast Our 2nd and final episode before we take off to Tokyo. Academy Award nominated director Marc Smolowitz shares some of his thoughts on the project prior to departure....
- Wednesday, 23 September 2009 Episode 1: Getting Ready for Japan Posted by The Power Of Two Japan Tour Podcast Our first episode. The Power Of Two crew gets ready for Japan, and Ana and Isa Stenzel share their thoughts on the upcoming journey....
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Sunday, 16 August 2009
Japan, here we come! Departure – Oct. 1st, 2009
Posted by Marc Smolowitz
In fall 2009, the Japanese version of the twins’ memoir will be published as “Mirakuru Tsuinz!: Nanbyou wo norikoeta Futago no Kizuna” (“Miracle Twins! Twins Overcoming Illness Together”) by Iwanami Shoten Publishing. To support the Japanese...