10/26/09
As I write this, I am sitting in an airplane heading back to the United States. A range of emotions engulfs me. I have been delinquent to blog daily, as the days are too full and the nights too short to spend time writing. For you faithful followers, I apologize.
I end my trip to Japanese with immense gratitude and hope. The progress towards CF treatment and organ donation awareness is slow and just blooming, but I have hope that things are moving forward with the efforts of a few dedicated people who truly believe transplantation is a good thing. I leave Japan with some promise of returning, and a renewed commitment to improving my language abilities and continuing to be a bridge between both transplant and CF communities.
I am immensely grateful that I survived 24 days of rigor, of 12 hours days and long travels on bus, taxi and train among millions of germs without getting sick (knock on wood, I’m still on the plane). I walked more in the last 24 days than I have walked all year. The way the Japanese walk puts our sendentary American lifestyle to shame. No wonder the Japanese can eat so much rice, noodles, sweet bean, mochi cakes without gaining weight. Our speeches were well received and the audiences were interested, stimulated and moved by our speeches. We were even invited back again so that is a good sign. I am leaving Japan with a great sense of satisfaction and gratitude, and a feeling that this is not over, but , on the contrary , the beginning of something yet to come. I was surrounded by love this trip- by people who welcomed us, by the Dream Team supporters of our efforts, by my mom, Robin, Trent, Andrew and Isa’s presence, and by the grace God gave me to survive this demanding schedule and the cerebral exhaustion of giving our speeches in a different language. Contrary to what we were told, there was no harassment or interruption of our speeches by anti-transplant groups.
I was so moved by the desperation of the Japanese people, by the frustrating stories I heard, by the small few who are trying to make a difference in a “shimaguni” (island country) that has its own isolated thinking, its system of doing things and its own timeline for change.
Most of all, after our farewell dinner with our film crew last night, I am most grateful for Andrew and Marc for dreaming up the idea of a documentary film addressing healthcare issues including chronic illness and transplantation in Japan. It was a once-in-a-lifetime experience to travel around Japan with a film crew. Having five handsome guys from California experience Japan for the first time, and to watch them love it, and maneuver through train stations, taxi stands, buses with 20 pieces of luggage, mostly film large film equipment, was bonding at its best. These young men inspired me to live for a passion, that some extra effort for a larger goal can open up new doors of discovery and opportunity. The film crew added so much to my experience. Their laughter, youthful energy, adventurous spirits, dedication to the cause of patient issues and transplant, and their talents and skills in capturing the essence of Japan and our mission , were truly inspirational. I , like many, anticipate with great hope and faith, the final product of this documentary film. Because of this film project, we were able to have opportunities we would never have had such as meeting famous transplant surgeons or politicians.
On Oct. 22, we had the most unique experience of visiting the Japanese Parliament, called the DIET, in downtown Tokyo. We met politicians, Kono Taro, who is a living liver lobe donor to his father, and is one of the only public figures courageous enough to stand up for the cause of organ donation. We also met another politician , Mr. Yamauchi. Both voted in favor of last July’s organ donation reform law that fortunately passed and will allow children to donate and receive organs. Although this is a huge step forward, it doesn’t go into effect for one year, and it will only make the current waiting list longer. Not much will be done to improve the actual availability of organs, I am told. If anything, all the press coverage about this law will hopefully increase awareness within Japan about the topic. Mr. Taro and Mr. Yamauchi graciously agreed to be interviewed by our film producer, Marc Smolowitz. During the interview, we had a tour of the parliament. It was a European style building that resembled the State capitol but without a dome. There was a large ornate semi-circular room where the Lower house voted for the organ donation law last July. Apparently there is no lobbying by patient groups. Only 2-3 transplant advocates could meet each politician individually to discuss their cause. This took hundreds of hours. Mr. Ohkubo, one of our Dream team members, said he met with over 700 people and worked tirelessly for months to help pass this law.
That same day, we were able to go to the American Embassy in downtown Tokyo to talk to two diplomats working for the Health and Environment section of the Embassy. What an honor and rare opportunity to go within the Embassy grounds for reasons other than a missing passport! And even better, how refreshing it was to walk into the lobby (after many security checks of course), to see Obama, Biden and Hillary’s large portraits on the wall. We met with Americans Bart Cobbs and his colleague whose name escapes my cluttered brain, to inquire what role, if any, the US Embassy can play in encouraging Japan to permit CF medications into the country so that CF patients in Japan can have the same health opportunities we can. We also of course touched on the topic of organ donation and highlighted the situation in Japan. Although they are limited in how much they can actually do, at the very least, we networked and will be able to reach out to some contacts on a higher level in Washington for further dialogue. It was truly a humbling and amazing afternoon.
On Oct 23, we had an early morning for a 1.5 hour train ride to who-knows-where ( I just followed Ashley, our bilingual film crew person/manager) to lecture at Oberlin University. This is an American University based in Ohio that has had a college in Japan for the last 130 years. We were invited to speak to their students in the social welfare/psychology departments. Our childhood friend, Naomi Takeuchi, is an alum at Oberlin, and helped arrange the talk. Several of the staff members spoke English. Over 100 students were in the audience. When we arrived, we were welcomed with an amazing bento box lunch with fish, rice, chicken and shrimp – the most protein in a bento box we had ever seen.
As we spoke from 1-3pm, sadly, it was right after lunch so over 20 kids fell asleep. They were college kids attending yet another class, so probably many of them were not there by choice. Nonetheless, we tried gearing our speech to a young lay audience with specific messages of cherishing your health, aspiring to make a difference, and living life fully. I felt good about our speech even though we had some freak powerpoint accidents where several of the slides “disappeared.” As I spoke, Isa fixed the issue. It’s very strange to work with powerpoint / Microsoft and not be able to read anything on the screen because it’s all in Japanese.
After the lecture, we were invited for a wonderful tea session with the most ornate Japanese cakes consisting of a brownie, pound cake and fruit cake, arranged on a plate. Our hosts from the International student department, were incredibly hospitable and friendly. They shared about their extensive exchange program and diverse international student body. I was very impressed to see two disabled students. Perhaps Japan is making progress in equal educational opportunities.
We left Oberlin Univesity (in Japanese it is “obirin”) by 3:30pm and headed back to Tokyo. On the outskirts of Tokyo, as the train zipped by, we caught glimpses of rice patties, small vegetable gardens, traditional homes, traditional cemeteries sandwiched between buildings, larger modern apartment buildings, and one-acre golf courses which are nothing more than a space of astroturf with a large net around it. We saw a few rivers with concrete embankments, large factories with recognizable logos such as Lotte (makers of chocolate) or Sapporo (beer makers), and small narrow streets with toy-like cars and bicyclists on them.
By darkness , we arrived at our next lecture at Hosei University. This is one of Tokyo’s great six universities. There are over 30,000 students in attendance. We were requested to speak to students studying public health and psychology. The host was Mr. Onazaki san. Also in attendance was Yuko Kakumu and Mr.Aihara, two members of our Dream team who were parents of children who had transplants in the USA. Ms. Kakumu recently published a book entitled “ Thank you , Mama” which tells the story of her 8 year old son who went to New York to have a multi-organ bowel and liver transplant. Unfortunately, he passed away from graft-versus-host disease. Her book which is of course in Japanese, was read by my mother and is extremely well written, chronically her experiences in the United States and all the support she received and lessons learned. Mr. Aihara’s daughter had a heart transplant in Little Rock , Arkansas several years ago. She is doing well back in Tokyo.
After our usual speech, we sat in a panel with Ms. Kakumu, and were intereviewed by the moderator, who was Mr. Aihara. My mother was invited onto stage and reluctantly answered some questions in a very meaningful and eloquent way. The students, despite attending class at 7:00pm at night, were wide eyed and engrossed in the lecture. One student asked how we would envision our lives if we had been born in Japan. Frankly, I answered that we would have been dead a long time ago. Ms. Kakumu shared a poignant story about how she struggled to send her son to school. Her son was wheelchair bound , and no school would accept him. She visited many school districts to plea her case, and finally found one school that would accept him for only one day a week. When she came to the USA to await a transplant, she enrolled him without any issues. She asked to the audience of students “what kind of society do we live in that we can’t even send children in wheelchairs to school?”. Japan has made some progress in disability access and equity, but it has a long way to go. After the lecture, students gathered around us, some just to stare in awe at us, and some to ask, shyly and reluctantly , their questions. One student stated that he really thought hard about our words, that he really is going to question his purpose now since he realized that he, too , has one life and has to make the most of it (one of our lecture messages). Another girl spoke to isa, and basically broke down in heavy sobs . She stated that she lost her sister in childhood, and could never share this with anyone. She carried a heavy feeling of loss in her heart, but our words triggered something inside her and she let loose. In a culture where verbal or emotion expression is suppressed, I can’t image the pain of holding in such pain for so long. Ultimately it comes out. I couldn’t help but wonder- Japan has some of the highest suicide rates in the world- over 30,000 per year- does that have something to do with living in a culture where sharing one’s emotions or pain is not permitted?
It was wonderful to speak to these students and to meet so many people. The best friend of the CF mother we met in Fukuoka came to watch our lecture and she broke down in tears too. They were so worried about Kentaro, the little CF baby, and received so much hope by listening to us talk.
It was after 9:00 pm when we left. With the film crew, we headed to Shibuya, one of the most bustling parts of Tokyo. It was Friday night and the crowds were out . Shibuya is famous for a specific intersection that connects the train station exit with a bustling dining/shopping/business/entertainment neighborhood. That intersection is featured in the media a lot as a prototype for downtown Tokyo. When the crosswalk says “walk” a sea of black heads moves forward, covering the entire intersection like busy ants trying to march to their food source. In the darkness of Friday night, we saw neon lights, loud music blasting from stores, bright lights, trails of taxi cabs, and many,many people dressed in all kinds of modern clothing that imitated the fashions of American celebs.
We went up to the 8th floor of a building as a group of 10 to go to karaoke. Yes, that’s right. This was our goal before we headed back to the USA. It was a dine in karaoke place so we ate as we sang. With a few beers and the last lecture done, we partied hard and sang our lungs out. It was absolutely joyous to watch everyone come out of their shell and sing to their hearts content. Fortunately, there were lots of English songs to chose from, so we sang to 80’s rock songs, Bob Dylan, Red Hot Chili Peppers and more. My mother , who stayed up way passed her bedtime, joined, sharing her love of singing with the group as she sang several Japanese songs for us.
I’ve always defined happiness as “not wanting a moment to end,” and this certainly was one of those moments. Despite the long day, I was energized and felt more alive than ever. Isa and I sang the song “Turning Japanese, I think I’m turning Japanese, I really think so “ with such energy and passion, that I’m sure I’ll look ridiculous on camera. But what the hell, we had fun!
We topped the evening off with an amazing Japanese desert- a sundae made of red bean, mochi, shaved ice with green tea syrup and ice cream. Was I in heaven or what? I had the lungs to sing, I was among people I loved, bonded by music and I adored the food. Could life be any better?
By midnight we left, but the film crew continued exploring this section of Tokyo that never sleeps. Even at midnight, it looked like Times Square in NYC.
The following morning , 10/24/09 we had a free morning so we headed to Ueno, in northeastern Tokyo, with Taka, a member of our Dream Team, to shop. Coincidentally, our dear friend, Steven Shak (inventor of Pulmozyme, a CF drug) was in Tokyo for a meeting and we had agreed to meet at the Ueno train station. It took a bit of cell phone usage to fine each other, since Ueno Station has over 10 exits. Finally, we met from opposite sides of a large intersection, rushing towards eachother and hugging eachother in the middle of the intersection with a typical American exhuberant, loud, emotional OMG greeting. We spent less than an hour walking around the outdoor open marketplaces of Ueno, down two narrow streets that sold dried squid, fish eggs, seaweed, pigs feet, and other oddities. There were countless Chinese and Southeast Asian merchants too selling knock off bags, clothes, shoes in the outdoor marketplace too.
It was wonderful to see Dr. Shak and his wife Gail, in a short frenzy of shopping and conversation before they had to depart to the airport for their flight home. We continued to shop with Taka until we had to head to another section of Tokyo for an interview for a Tokyo based magazine called Metropolis, a English magazine for ex-patriots and other foreigners. Over lunch, we were interviewed for over 2 hours.
After that it was another quick dash to Asakusa for more souvenir shopping. In the dark rain, we dashed about in an open marketplace that sold authentic Japanese goods. At the end of the marketplace was Sendoji Temple, a Buddhist temple that somehow preserved its presence in the midst of this modern concrete jungle of Tokyo. We didn’t even walk all the way to see the Temple ( I had gone with Robin anyway earlier in my trip), because we had to rush back to central Tokyo for our family dinner.
My mother has three brothers. Two live in Japan and one lives in Seattle/Hawaii. It is rare that the family gets together so we made arrangements to invite them for dinner. My uncles and their wives, and my cousin , Yuki, and her kids , joined. We sat on the floor of a tatami room, with a long low table in a private room with paper thin walls, for a dinner of multiple small dishes. Each dish was brought within 5-10 minutes of each other so there was always more to eat. We had sashimi, squid (no thanks), beef, salad, edamame, egg, inari, some fried thing, and some other things I couldn’t recognize. Most of my relatives had read our book in Japanese and asked many questions. Since we lived in different countries , they never really knew how we lived or what our lives were really like. To them, from across the Pacific, they heard about us attending college, having boyfriends, etc and never really knew what that entailed. It was a way of finally opening our life experience to them. With limited vocabulary we spoke candidly and reflected on our lives. Of course a little sake and beer helped open up the dialogue too. I’ve always felt distant from my Japanese family, due to geography, language barriers and cultural differences, but this was the closest I’ve felt to them, despite being together for only 2 hours over dinner. Apparently, many Japanese restaurants kick you out after 2.5 hours so our dinner had a forced ending and we departed around 9 pm.
Our last full day in Japan was Oct 25. We woke early and went on a long train ride to Yokohama, one of the port cities south of Tokyo, where we were scheduled to attend the annual Transplant Support Organization’s meeting. The meeting featured Dr., Tomoaki Kato, a renowned Japanese gastrointestinal surgeon who works at Columbia University Hospital in New York City. He is a strong advocate of transplantation in Japan and has performed dozens of kidney, liver and bowel transplants on Japanese patients who fundraise to obtain transplants in the United States . He is a hero among many in the transplant community. We recently became huge fans of him, since he wrote an epilogue for our Japanese book, “Miracle Twins.” Dr. Kato gave a keynote address that was all in Japanese. I picked up about 65% of it. He spoke about Japan’s need to improve their organ donation system and shared statistics and survey results on Japanese attitudes. Apparently, in a survey that asked “would you be willing to have a transplant if you faced organ failure?” many Japanese said yes. However, when asked “ would you be willing to donate organs if you become brain dead?” many Japanese said no. So the irony here is the willingness to accept organs but the lack of willingness to give them. In a conversation with Dr. Kato afterwards, much of this stems from a lack of trust in the concept of brain death, and difficulty to give to people who one does not know, and the belief in the importance of being buried whole.
The auditorium was full of organ donation supporters, recipients and donor families, as well as some healthcare providers. Isa and I were escorted onto the stage with about 10 other recipients to say “thank you” and share our American perspective. The primary role of the Transplant Support Organization is to fundraise for patients to go abroad to self-pay for transplants. So all the other recipients on stage had their transplants in the USA or Australia. There is a lack of funds to actually educate and promote organ donation awareness within Japan, and cultural constraints that prevent recipients from being actively engaged in the awareness process (unlike the USA) because all the funds are used for paying for patients to go abroad. In my opinion, this perpetuates of cycle of Japan’s inability to become self sufficient in transplantation. WTF.
Following the speeches, awards were presented to those volunteers who played key roles in fundraising. Then there were a few moments for Q and A. One gentleman stood up and stated that he was a donor dad whose son was a foreign exchange student in America and died. He chose to donate his organs in America. The father said that the American doctors explained brain death to the parents, and showed him his son’s brain death tests to confirm; then he had trust that it was the right thing to do. The father said that if his son became brain dead in Japan, he would not have donated the organs. He seemed to be grateful about how things were handled in America, and I am proud to be from a country that gives so much care and attention to the donation process, for all involved. During our speech we shared about our gratitude for donor families, and how we honor and respect them in the USA. As with other speeches, there were comments about how novel this seems to be in Japan. My impressions are that everyone is so ashamed and hush-hush about receiving transplants AND donating organs due to the stigma, that few people come forward to talk about, show thanks, or go public.
One of the most touching parts of the evening was that my friend, Saeko,whom I had met 15 years ago in Takamatsu, took the bullet train for 4 hours to come and see me. It was wonderful to see her again and I was so touched that she made the effort to come hear us speak and learn about organ donation. To me, she represents the general population, people who aren’t personally connected with organ donation but are willing and interested in learning about it and considering it.
The day was full. Unfortunately, the hosts of the event were not the friendliest and our film crew faced some resistance. Of all the events we have attended and filmed it was our first less-than-perfect welcome. Some feathers were ruffled, but we survived. We left Yokohama in the rain and headed back to Tokyo for our farewell dinner.
In a small ramen store by the train station, the 10 of us – five film crew, mom, Isa, Andrew, myself , and our volunteer Japanese film intern from Tokyo- took over the entire restaurant and slurped our authentic ramen noodles. One by one, we reflected on the trip. Kind words were exchanged, and tears were shared. It was one of the bonding trips of my life. I have grown to love the film crew, and respect and admire each of them for their love of the arts, the cause, the adventures and their own desires to grow in their careers and lives. With little pay and long hours they abandoned their American lives for 3 ½ weeks to work for a cause that they had previously not know about, and have sat through countless dinner conversations and lectures in a foreign language while we talked about organ donation.
I have hope and anticipation for the creative genius of Marc and Andrew as we watch over 250 hours of interviews and event footage in Japan unfold into a dramatic , insightful, socially invigorating and stimulating documentary film. As the rain poured over the dark streets outside and we turned warm inside from the ramen broth, we shared our best memories of the trip and our gratitude for each other. Best moments for me? Not getting sick. Feeling healthy enough to run up those flights of stairs at the train station to catch the train. No but seriously, my fav moments were for sure : the Sendai Concert and meeting CF families for the first time, dancing in the rock garden with the medical staff from Ryukyu University in Okinawa, swimming in the ocean in Okinawa, karaoke with the team, being with people I loved and cared about who are here in Japan at what could be the launch of a social revolution in how this society thinks about patient care, how this society treats disabled people, and how this society views organ donation and transplantation.
We awoke for our last morning in Tokyo by finishing last minute packing before heading to Iwanami Shoten Publishers where we wanted to meet some more staff members of the publishing company that accepted our book. We met some staff members, were interviewed by a book reviewer and saw the office of Oyama-san, our greatest advocate and editor at Iwanami. In the pouring rain, we said our farewells, and started the two hour trial of getting 9 people and 20+ pieces of luggage to Narita Airport via taxi and bus.
Our bags were exploding at the seams, due to a combination of Japanese gift giving customs, and our own shopping and love for red bean cakes.
I still don’t know why my bag weighs so much!
Truthfully, as stated above, I think this trip was more about networking and making connections, and those connections with lead to more work in the future. I am excited to see what comes next and what new opportunities arise.
I have probably written more than anyone cares to read, but truthfully this blog is more for my own purposes of recording the memories and events that transpired before my prograffed brain loses them (our anti-rejection medication, prograf, can cause memory loss).
Thank you for taking the time to read this blog. For those who supported our trip and sent well wishes and helped us in our preparation, we truly, truly thank you. It truly was the trip of a lifetime, better than any tourism trip I’ve ever taken. I truly could connect with the Japanese in a way I never have before.
May you all breathe deeply and grab onto life’s adventures!
ANA STENZEL 10/26/09
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