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 had 3 speeches on Oct 3rd and now for some ungodly reason I can’t sleep. WTF. For some reason I am completely immune to Ambien despite taking multiple pills.
My brain is buzzing like a beehive with reflections of the day. I am consumed in awe and love. The small yet powerful transplant community here in Japanese welcomed us with open arms and created such a fan fare that I am deeply moved and humbled.
Our day started with early breakfast in our western style hotel in downtown Tokyo called “Hotel Villa Fontaine.” The menu included Caesar salad, macaroni salad, bread and chicken broth, not quite the traditional American or Japanese breakfast. But I was happy to have some fresh greens so I couldn’t complain. To prepare my gut for the long airplane ride (10+ hours) I drank a gallon of Golyetly laxatives three hours before my flight, so I was now empty and ravenously hungry.
Naomi, our bilingual childhood friend whose help we elicited for our Japan book tour, greeted us at the hotel. When she agreed to help in June, she had no idea what was to come. Before she knew it, she became the manager of our entire itinerary. Since we are illiterate in Japan, she escorted us to our first event- the 5th Annual Regenerative Medicine and Transplantation Nurses Conference at renowned Keio University. Although exhausted, the anticipation and adrenaline energized me. We met Ms. Etsuko Soeda, who is the most famous transplant coordinator in Japan. She sacrificed 10 minutes of her speech to give us an opportunity to share our story to the audience in an otherwise packed agenda. After a few minutes of flustering and nervous shakes, our voices calmed and the Japanese flowed out of our mouths in a somewhat decent manner. The speech and PowerPoint presentation seemed to be well received and Ms. Soeda seemed to be moved to tears. There were about 80 people in the audience, a testament to the scarcity of transplant nurses in Japan. None of them had ever met a lung recipient. According to a graph Ms. Soeda shared during her speech, Japan ranks last in the world in quantity of transplants done annually in developed countries. Spain is #1 and America ranks about 5th. Also, Japan supposedly did no living donor transplants in 2008, according to one graph. I felt a sense of desperation among the audience, for the desire and need for transplants but a lack of support from the larger society.
Our next event was the most stressful- a press conference. We rushed away from Keio University at about 10 am and headed toward the main downtown Tokyo train Station. It was pouring rain, but a warm humid rain. I soaked in the nostalgic views of Japan- people on bicycles, vending machines on every corner selling an array of drinks, people bustling about in and out of the train station, the food vendors selling mochi dango and bento. There was a familiarity that was so calming yet an unfamiliarity that made me occasionally look around to make sure I was still with our group and not lost.
Our press conference, arranged by the leader of the Japan Tranplant Network, Mr. Ohkubo, was set for 2 pm. In the last year, a number of key players in the small transplant community stepped forward to help organize our book tour. This group of dedicated volunteers were led by Taka, an energetic, passionate, wonderful woman who promoted our story in larger ways that we ever would be able to. We met Taka at the USA Transplant Games in Pittsburgh in 2008. It was one of those magically friendships where things just unfold. The group of dedicated volunteers were named the “Dream Team” by Taka and they greeted us for a pre-press conference lunch at an Italian restaurant that served corn and tuna spaghetti. Our editor from the publishing company, Iwanami Shoten, was present. She is a small petite woman whose grace and quiet affect hides the determination and dedication that she has put into make our book successful. Iwanami apparently publishes 600 books per year, mostly academic. They do not normally market or promote any of them, so our book received considerable special treatment, thanks to the energy of Taka and Ohkubo-san. Two members of the Dream Team were parents of children who had transplants in the USA. One of them, Ms. Yuko Kakuma, just published her book, “Mama Arigato” (“Mama, thank you”), two weeks earlier. Her son, Satoro, received a bowel, liver, pancreas and kidney transplant in 2006 in New York, but unfortunately he passed away at the age of 8 with graft-versus-host disease. Her book tells the story of her efforts to fundraise for his transplant abroad and her experiences in the United States. My mother read Ms. Kakuma’s book and raved about its heartwarming and deep message.
Two other members of the Dream Team were transplant professionals and the rest were friends and family of recipients. Ohkubo-san, who had received a kidney transplant 25 years ago, was the only other recipient besides us. Of course, our sleep deprived handsome film crew was also with us.
When we arrived at the press conference, many members of the Dream Team were bustling about, helping set up the room to welcome members of the media. There were posters, fliers, t-shirts, and a huge 10-foot by 3 foot banner with our faces, book cover and message reading “the Miracle twins are coming to Japan!” hung on the wall.
Our book was sitting on a table. It is small, colorful, paperback, and the cover has the same photo of us blowing bubbles like our American “Power of Two” book. I am humbled, and in awe to hold a copy in my hands. It came out at an opportune time- October is organ donation month in Japan. Transplantation is a hot social topic now, with recent legislation passed in July 2009 legalizing transplantation and donation in children.
Jet lag really set in about 2 o’clock, just as the press conference started. We were in a high rise building looking out at the vast metropolitan of Tokyo- tall modern skyscrapers, long endless railroad tracks, small narrow streets with taxis packed side by side. It was like a miniature version of New York City. The rain was pouring down and the sky was unusually dark.
The press conference consisted of about 7-10 medial representatives from major Japanese newspapers. We started our speeches with our flashcards in a nervous fashion, but after a few minutes my legs stopped shaking and I was already. During my speech there were moments of disbelief, “What the hell am I doing giving a speech in a foreign language in Tokyo?” After months of preparation and more twin fighting that I would ever wish for, it was finally happening. The sentences were translated, the flash cards were made, the content was revised, revised and revised. Ten hours of practice on an airplane put the finishing touches on my preparation and I was ready.
We spoke for 50 minutes. Despite a few blips in language and some elbow nudging between us up there on the podium to discretely correct each other, it went well. If I were to grade myself I’d give myself a B. We were told that it was clear and understandable. I hope so. Did you know that one of the Japanese cultural characteristics is to be indirect? So who knows if they really did understand us or if they were just saying that to be nice? I can only hope. We did use a very nice interpreter for some of the harder concepts where we tried to convey the American perspective on transplant and some of the cultural differences. We were quite philosophical, speaking about how transplant invites us to explore our h humanity and forces us to ask difficult questions: Are we capable as humans to give unconditionally? Are we capable of questioning traditional beliefs about life and death as modern medicine changes? Needless to say, our translator was quite challenged.
There were several other speeches after ours, including a synopsis of our book tour by Naomi, a summary of events leading to publication by our publisher, Mrs. Oyama, and some discussion of the status of organ donation in Japan by Mr. Ohkubo. According to him, the Japanese law passed in July 2009 to allow transplantation and donation in children will not go into effect for one year. That law also states that brain death is defined as death only if a person is a registered organ donor and his/her family agrees to donation. This is in contrast to many other countries where brain death is universality accepted as death, and an individual cannot chose when or how they want to be declared dead.
We ended our speech with a plea to the media- to please portray organ transplantation in a fair and balanced manner with both the donor and recipient’s perspectives. They have such power to set the stage in the public’s perception and historically, the media has had some negative portrayals of this cause.
Our press conference ended with a feeling of satisfaction despite lower than expected attendance. Those who did attend seemed sincerely interested. We were surrounded by reporters afterwards for over an hour for one-on-one interviews. Apparently, most Japanese people are shy about asking questions publicly during the Q and A, but have no problem coming up to us afterwards. One reporter asked, “How was it to share such personal information in your book?” This is truly not Japanese, where privacy and shame of body are so important. What was Isa’s answer? We are all human and we have nothing to be ashamed about. I wonder if they get that.
Robin Modlin, our dear friend and the mother of a CF adult, joined us on our journey for the first 10 days. She, Andrew and some of the film crew sat quietly trying to absorb the conversation despite not understanding a word of Japanese. At the end, in reflection, we shared how so much of how we communicate as humans is not purely language, but rather based on emotion, feeling, and intonation. So amazingly, she “understood” some of what was said and was just as moved by the experience as we were.
After a big event, we headed to a nearby Chinese restaurant for our book tour Dream Team kick off party. In a small private room, we had 20 of the most dedicated transplant community people in Japan. Some came from Osaka and Shizuoka, far distances to support our press conference. We gave another speech thanking them for all their hard work to promote our tour and book. We shared our gratitude for this cause, for life, for breathing, for friendship and for the dedication that arises when people just want one thing: to live. Several were moved to tears. We passed out small soap bubbles that we blew in honor of our donors. The room was dark, and outside there was a full moon, overlooking the Tokyo cityscape. There was dim light and the soap bubbles of 20 people blowing them filled the room in a shiny glow of clear iridescent floating pearls.
We asked everyone to sing a song about soap bubbles we learned in second grade when we lived in Japan: “Shabon dama koreta, yane made koreta, yane made korete, kowarete kiyeta.” In English, it says: “The soap bubble floated up, up to the roof, and then it popped.” Ms. Kakuma, who lost her son post-transplant, and several of the other Dream team members were moved to tears. I learned that a parent who lost their child wrote the song; the soap bubble symbolizes short-lived beauty that vanishes in the air. I had no idea and when I saw Ms.Kakuma cry I felt her grief. We gathered around comforting her and consoling her loss, only one year ago. This is what transplant is about. It is about hope, life but also unfairness. Unfairness when people die waiting and unfairness when people die from complications. We were all in this together, like so many of our transplant friends. Across cultures and language barriers, we feel the same things. It was a beautiful moment with those tears of friendship in dimly lit room made magic by floating bubbles.
It was late and the day was long. My ankles were swollen from too much salty food and I was ready to try to sleep.
My head hit the pillow with a sense of calm and a wave of fatigue that could finally break, at least for a while.
What a wonderful start to our book tour. Tomorrow we head to the Japanese National Stadium for the annual Green Ribbon Festival, which is the main organ donation event in Tokyo. There will be 3000 runners doing a 10K, 5K, 3K or 1K. I will be running in a relay, God willing. It is hot and extremely muggy (by California standards) so I hope my bowels and I can survive.
For the last month, Isa has those accompanying us to Japan, a Japanese word of the day to learn.
Today, the word of the day is : tsukareta. This means tired. I guess I’ll try get some sleep now.
Thank you for your interest in my long blog post.
ANA STENZEL
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