Dear Friends,

Thanks for reading this blog! We are home from Japan! God bless America! We arrived late Monday evening, after only 8 hours in the plane and many more hours traveling from downtown Tokyo  to Narita airport.  I have been sleeping in my bed for the last 5 nights, and it has been wonderful! Lethargic, catatonic, depleted, zombie-like, are just a few words to describe my state in the last week. (but it’s a good exhaustion, not a sickness exhaustion- praise God!) I keep sleeping and sleeping- til 11 or 12pm. Andrew said to me, “I’ve checked on you many times before when you were sleeping to make sure you’re not dead, and this time I wasn’t so sure!”

The past 6 days have been the most unproductive days of my life. I went to the grocery store. I did laundry. I was present yet absent at a CFRI meeting, and I went to a CFF fundraiser. I washed my wonderful dog, whom I missed dearly. Thank you to her Godparents, the Robinsons, for loving and caring for Rupie! One day I walked Rupie at my local Red Morton Community Park, and drank in the sights of kids skateboarding at the park, playing football, practicing cheerleading.  This is the America I missed.

I walk around in a daze, thinking where am I? Where was I? What time and day is it? I can read everything and understand the radio and TV…. it’s miraculous! I left in the summer, and now it’s cold… fall has arrived. At night the moon is full, and I can’t help but think that’s the same moon I saw in Tokyo. Such a small world.

My mind is still in Japan.  There is so much I want to capture in writing before I get caught up in normal life.  I’ll continue my last Japan blog post and share what we did the last two days in Tokyo. On Sunday, October 25, the film crew, Ana and I headed to Yokohama by train. Yokohama is about 40 minutes from Tokyo, and is well known for its industry. Sadly, we didn’t get to see much of Yokohama because we walked from the train station to the Japan Transplant Support Association(JTSA) meeting in a nearly building. This organization called “ishokushien” is devoted to helping Japanese people raise money to come to America for transplants. The crew and Ana and I were led into a small ‘green’ room with dresser lights behind the stage. We were left to our own devices to figure out what the format was and when we’d be speaking, which was the first time in our trip where the hosting hospitality wasn’t top notch.  Nonetheless, Ana and I scrambled to pull out 5 minutes worth of Japanese phrases from our stack of notecards(cue cards). We had little direction from the hosts about what we were supposed to do, but created our own 10 minute speech. During the event, all the recipients were called up front and there were about 15 recipients, age 5-70. Most of the recipients received living donation or went to America for their transplants. I thought each recipient was supposed to share their story, but that didn’t happen. Upon cue from the MC, Ana and I stood out from the line and rapidly spilled out 5 minute speech each without any idea if this was the right thing to do!

After the recipients returned to their seats, the MC made a pitch for one family,whose child needed a heart transplant in America. Both parents stood up- they were young and gorgeous, but had a terror written on their faces. What courage it takes them to ask/beg for money so their child could be saved? Why does it come down to this, in Japan?  They were collecting donations in the lobby. In this cash-based society, the idea of online fundraising or writing checks and mailing them seem quite foreign. How much cash can one really collect?

Thankfully, my mom and her friends, my uncle Juichi and his cousin Kazuyuki and wife attended.  This was yet another one of those Japanese events that seemed to combine education, speeches, and music, because once again, after an hour of transplant awareness pitching, there was a beautiful concert – with a flutist and various singers. The MC of this event was James Haven, a half Japanese half American man who had the great skill of making a serious heavy subject something lighter. He spoke perfect Japanese, and pitched organ donation in such a skillful way. He also wrote and sang a beautiful song about the gift of life. He liked to talk ALOT, so I made fun of him during my speech.

The greatest opportunity we had was to meet Dr Tomoaki Kato, the world-renowned gastrointestinal transplant surgeon who lives and works in NYC but is a strong advocate for organ donation in Japan. Dr Kato gave a compelling speech about the transplant situation in Japan, with interspersed photos of his patients in America. I could only understand about 60% of his speech, but the photos told a thousand words. He really cares about his patients. He really believes organ donation is the right thing to do.  Some of the statistics he shared were that the vast majority of Japanese are willing to accept an organ if they needed a transplant, and yet the vast majority are not willing to donate their organs. The double standard is glaring.

 Dr Kato is such a sweet, gentle yet powerful man who has written two books pushing for transplantation in Japan. He has saved countless lives- a true hero and advocate. He also wrote the forward of our Japanese book, which was extra work for him.  Our film crew interviewed him after the concert. That made for a productive event.

After the concert Ana and I were surrounded by Japanese people. Some were friends we had met at the Japan Transplant Games, or at the Green Ribbon Festival, or other prior events. Others were new people who just wanted to talk. I wanted to go give a donation to the family that was fundraising for their child’s transplant, but somehow I got so distracted. One of Ana’s former English students came all the way from Takamatsu (5 hours by shinkansen) to attend this event, so we were focused on her. Then our time was cut short as the host was angry at the film team for taking so long to interview Dr Kato. We left at 6pm, tired, thirsty, hungry and abit disheartened at our last event. A few of the guys slept in the train.

Our evening was redeemed when we returned to Otemachi, picked up Andrew who was sick and working all day in the hotel room, and went out to ramen. I ordered two orders, and the waiter had to make sure I really could eat two bowls of ramen. And I could! No problem. I’ve had to order two entrees several times, and I’ve still lost weight!

The dinner ended up being a rap session where each participant shared their reflections about the trip. Tears were shared. Glasses were raised. Words of love and gratitude poured from everyone. I am so grateful this project and trip were meaningful to the film crew. This project is a small chapter in each of these young men’s lives, yet it seemed to make a real impact.  Even my mother said she was so glad she came. She was hesitant to join our Japan book tour. In classic Japanese way, she feels guilty that why are we the ones still alive? She has met so many parents who have lost their kids to CF, and while we are still alive, why do we receive so many blessings like publishing a book in Japan? She was overwhelmed.  Also, my mom said she has never engaged with Japanese people at a deeper, heart connection way, and this visit let her see another side of Japanese people. I hope it helped her to find peace with her own culture and people.

It has been insightful, traveling with mom. She is so American in Japan, and so Japanese in America. We’ll be practicing our speeches and asking, “Mama, how do you say ‘informed consent’?”" and she’ll say, “In fo-mu-du kon-sen-tu”. “How do you say “purpose”? She’ll say, “Pa-po-su”. After a few weeks we realized her Japanese vocabulary is not as strong as her American, so she’d make up Japanese pronunciation for English words! My mother is also very direct, American style. Her first dinner in Osaka, Mama asked the waitress, “Can you hurry and bring the food, we’ve been waiting for so long and the children are hungry.” In many taxi rides, mom asked the cab driver, “Excuse me, are you familiar with organ transplant? Are you supportive or against it?” With her charm, she could engage in any conversation.

We thanked Marc Smolowitz, who spearheaded this project, and believes so deeply that this story must be told. Marc has the best ideas and attitude of anyone I’ve met. I am especially grateful for Andrew, who managed to work but not work while he was in Japan for 26 days.  He is my tireless advocate when I don’t think I’m anything but a CF patient who was graced with getting better through transplant. He pushes me to believe that there is something valuable in telling my story. He is my confidante, my best friend, my life. Ana and I held hands and let out an exasperated, “We survived!” So much fighting, arguing, bickering about our speeches, overwhelmed by the pressure to perform and creating very high standards to learn a language in 3 months to give educated speeches. I couldn’t have done it without Ana’s help, nor she without mine. We are a great tag team, blessed with each other through all of these adventures.  Thank God, we were both healthy. Despite pandemic H1N1 flu, we were okay. We are shocked we didn’t need to use our medical evacuation insurance! I don’t know how we did it. We kept saying it’s not us, it’s something much greater than the two of us that is carrying us along.

The last day, October 26,  I somehow managed to pack a large amount of gifts and clothings into two bags. It was pouring rain, but I ran to the 7-11 across the street and used up my coins buying the best chocolate-filled marshmallows and other sweets. Then Ana, my mom, Andrew and I went to Iwanami Shoten, our publisher, which was about 10 minutes by taxi from our hotel. We met Oyama-san, who has been our fearless supporter. We took photos of the book in the hall exhibit case and learned this publisher started in 1913 as a book store. They publish 600 books a year… and I think Oyama-san has never spent as much time on any other book as she spent on ours! We were pleased to hear Iwanami has already sold 1600 copies- half of the first printing. Thank goodness! I think the Japanese are open to learning about transplant. We were led to a room, and met the head of Iwanami. Then suddenly a reporter came from Asahi Shinbum. He wanted to do a book review. So we did an interview in broken Japanese. Thankfully, mom was there to back us up.  Afterwards, in the pouring rain, we went to lunch with Oyama-san. Mom left to visit her friend, because she was staying an extra day. It was nice to have quiet one-on-one time with Oyama-san, to ask about the book. Her English is excellent so Andrew didn’t feel left out. After all-you-can-eat lunch, we head out to the airport with the guys, spent the rest of our small bills on gifts, exchanged the rest of the yen for good ol’ dollars.

I’m glad to be home, but I miss Japan. I miss the food, the polite people, the activity. But our pace was not sustainable as evident by my sleep schedule lately. I’m happy to be home where I can say exactly what I want to say, and I don’t have to wear makeup and pantyhose.  I miss the film crew- who became like family over the course of 26 days together. It will take a while for me to re-enter society. With organizing my gifts, reviewing and uploading photos, then writing thank yous, my head is still in Japan.

But my head is also in present day. I now need to find a job, organize my neglected office and garage, and start exercising again. It’s exciting to know what’s ahead.

Thanks for reading this very very long blog post. I wish you all health as flu season comes full force.

With love and gratitude,
Isa

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