On The Road
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Thursday, 22 October 2009
Adventures in japan 10/13- 10/23/09
Posted by Ana
10-23-09
Shame on me for not writing in so long. I have been delinquent because life has been too exciting to sit in front of a computer. It’s hard to believe how time flies by and we will leave in four days.
We were in Osaka for several days. My mother and Trent arrived on Oct 13, and we had two days free for sightseeing in Nara and Kyoto, two historical cities that were at one point in history, capitols of Japan. The oldest, most preserved Shinto shrines, castles and Buddhist temples are located there, so it was wonderful that our free days coincided with our vicinity to such major tourist attractions. Perhaps we wore Trent, Tom and Mom down with 12 hour days of train rides and sight seeing. I believe the Japanese people have stronger legs and feet that we Americans, because boy, did we walk! Our high school penpal, Yumi, with whom we reunited with a few years ago, was our tour guide in Kyoto.
We visited one Buddhist temple, called Sanjusangendo, which had over 100 Buddhist statues lined up. Each statue was from the year 1200 and was painted in gold. It was truly a mind-boggling and spiritual awe-inspiring sight to see. Fortunately, Kyoto and Nara were spared from World War II bombings so these national treasures were preserved. Kyoto and Nara are famous for classic small, wooden Japanese homes and narrow streets with geishas that show the culture, history and most ancient images of Japan.On Oct 16th, we were invited to Kobe to tour a biomedical research facility called RIKEN, located on an island off Kobe that was created out of landfill. The entire island is dedicated to the development of biomedical research facilities. We were invited originally to give a speech there about transplantation, but that was cancelled in the last minute. Instead we were offered a tour of their facility where we learned about their progress in stem cell research and novel biotechnology such as imaging techniques.
After that, we headed to Kobe University Medical School where we gave a speech to medical students. Our Japanese skills have been improving and the response was positive. The students crowded around us after the speech to ask questions, since they are , in general , too shy to ask questions in front of the entire audience during the Q and A session. Most of the medical students were women, even though the school was co-ed, which showed to me, the promising improvement in career opportunities for women.
One medical student (who was in his sixth and last year) said he had never heard a patient speak before and our talk was very enlightening. Amazing that hearing a patient’s perspective is so very novel in their medical education! Another student commented, “ I can understand how anyone could give organs to people they don’t know. In Japan , we only take care of our family, not strangers.” These were thought provoking indeed. Our cultures are so very different. One woman shared that she had a personal health problem, and her mother helped save her life. She asked how could we ever pay back our mother for what she’s done for us? I explained nothing can ever repay what my mother has done for us. The only thing we can do is love her, care for her if need be, and honor her by sharing with the world in our book how wonderful she is. She explained that her way of giving back for her mother’s care is to become a physician so she can help others too.
On Oct 18, we gave a talk at Kyoto University’s Nursing school. This is the largest nursing school in the country. The students were predominantly young women. We were welcomed by a crowd of bowing women and men in white uniforms wearing red round sponge circles on their noses, like the clown nose used by Robin Williams in the movie, Patch Adams. They were so kind and friendly, gushing with enthusiasm and showering us with Japanese snacks, tea and lunch. Interestingly, one of the hosts was wearing a t-shirt that had the English words inscribed “ Too drunk to fuck.” I don’t think she had any clue what her shirt said. Japan seems to have a fascination with anything American or anything written in English, so it is more fashionable to put English print on t-shirts than Japanese, even if the words are inappropriate or, in some cases, grammatically incorrect. Amazingly, this t-shirt was worn by an innocent staff member at a prestigious nursing conference.
Our lecture lasted about 45 minutes and our language skills were bearable. Afterwards, we were again approached by a crowd of eager students with questions. One woman broke down in tears as she commented how touched she was by our talk, and how we said things that she never thought about before, and how much hope she had from our talk. The interactions with these young, bright and enthusiastic students were magical. Despite my limited Japanese, I was grateful that I speak enough to have this kind of exchange.Trent was in Japan only for 4 days so we said our goodbyes on Oct 17th. Tom also departed that day. Although our time together was brief, I think Trent enjoyed his first time in Asia. I can’t say I could spend quality time with him , with 10 other people in our group and a hectic tour schedule. Plus, we have very different travel styles so I am always about 50 paces ahead of him. However, I did enjoy sharing a few sites and some unique foods with him.
On Oct 18, after the Kyoto event, we headed south to Okinawa via airplane. It is always such a production to get 10 people with 20+ pieces of luggage on a train and then on a plane. It was a sight to see and a whole lot of noise.
We made it to Okinawa late at night and were greeted by our hosts, two vertically-challenged employees of the Okinawa Kidney Bank, who wore Hawaiian type shirts. They drove us in two cars (plus the film crew rented a rental car) to the southern most tip of the island. In the darkness, we passed sugar cane and small buildings and streets. The train stations, freeways, crowds and high rises of Tokyo and Osaka were absent. We were driven to a remote resort hotel called the Southern Lynx. Although it was dark we could tell we were in the middle of nowhere. In fact, we could not even get cell phone reception and our hotel had no internet. OMG, how will we ever survive?!
We checked into the resort hotel to discover that our rooms were huge, about three times the size of the typical Tokyo/Osaka hotel. We had a balcony that opened up to a lanai, with a view overlooking a swimming pool, golf course and, in the distance, the ocean. This was the Hawaii of Japan. It was hard to believe that just a few hours earlier were were in the crowded, bustling streets of Osaka, with neon lights, high rises and a million people, taxis , shops. From our Okinawa resort hotel balcony, I could look up and see the stars for the first time in all my trips to Japan. It was glorious. The film crew and us giggled from our adjoining balconies in disbelief. Some of the film crew guys jumped into the pool immediately, in the darkness. It was paradise.
Unfortunately, upon awaking the next morning, we could only enjoy the hotel for about 2 hours before we had to leave. We had a nice swim and enjoyed a traditional Japanese buffet breakfast- rice, miso soup, natto (fermented soybeans), pickled veggies, seaweed, egg, and a bunch of unrecognizable foods that I can’t describe in English. I ate till my gut hated me.
We took taxis to our lecture event, which was the 18th annual Okinawa Transplant symposium. During the long ride there, we enjoyed views of the ocean, sugar cane, smaller traditional homes, and busy streets filled with cars. There are 1 million people living in Okinawa. It used to be its own country , called Ryukyu Dynasty, over 100 years ago. Then Japan took it over, but lost it to America after Word War II. In the 1970’s America gave it back to Japan, but retained a military base there. There are now over 50,000 American military personnel living there, as it is the largest military base in the Pacific. Therefore, there was a strong American influence- fast food, English street signs, America stores and restaurants, military surplus stores, and lots of handsome young American men with shaved heads. Not a bad place to be stationed in my opinion. Better than Iraq or Afghanistan for sure!
There was an eerie feeling on Okinawa for me. It was the site of some of the bloodiest battles during World War II and there were plenty of monuments to signify it. There were random graves here and there, in neighborhoods, on the beach, and even in business areas. I couldn’t read any of the grave signage as it was in Japanese, but the taxi driver said that many civilians hid near the graves during the war, for shelter. Thousands of civilians lost their lives when America invaded Okinawa.
We arrived at our event, welcomed by many enthusiastic hosts, including people from the local transplant community (only 3-4 people), an Okinawa politician, musician, and several medical professionals. We were provided with tea and bento lunches made of more rice, fish and unidentifiable pickled items.
We spoke for about an hour to an audience of about 160, made up of primarily the general public. Okinawa has had an annual transplantation symposium for the last 18 years to help raise awareness about organ donation. They publicized the event in the media and by displaying artistic fliers. It was truly humbling. We were interviewed by a few newspapers after the concert and met a few kidney recipients.
We ended the day by changing hotels and checking into a closer hotel on the Westside of the island, the Laguna Garden Hotel. We were greeted by the friendliest hotel doorman (woman) I have ever met. She met us with a loud “irashaimasen!” (Welcome!) and a contagious grin that engulfed her entire face and squeezed her eyes shut while wrinkling her nose. Her smile and extreme enthusiastic welcome was theatrical and highly exaggerated, yet so sincerely and natural. I think Okinawans are some of the friendliest people I’ve met as our taxi drivers were equally gregarious and sociable.
Our gigantic room (by Japan standards) was on the eighth floor and had a balcony that would cause great anxiety to anyone with a fear of heights. To the east was the city of Naha, capital of Okinawa. To the west was the ocean (and farther out, Taiwan). The hotel had a gorgeous swimming pool below and an indoor onsen (Japanese hot spring) and Jacuzzi. The hotel was adjacent to a convention center and baseball field. In the distance we could see a harbor and an industrial port. Not exactly a natural setting like the prior hotel, but it was much more centrally located.The next morning we enjoyed another Japanese style breakfast buffet, primarily including Okinawan specialties. Did you know that Okinawans are the oldest living human beings on Earth? The secret is the diet and the philosophy of eating only until one is 80% full. Their diet includes a lot of fish and specialty vegetables and teas, and a healthy physical lifestyle. We enjoyed regional specialties such as grape seaweed, peanut tofu, fish, Okinawan soba, pineapple and sweet potatoes. There were also the usual Japanese breakfast foods such as half-boiled eggs, rice, miso soup, fish, pickled vegetables and burdock root. Again, I ate until my intestines screamed.
We had a few hours to frolic in the water at a local beach before preparing for our evening talk at the Ryukyu University Medical Center. The beach was a classic white sanded, aqua blue paradise. However, the swimming section was roped off with buoys and a net prevented any fish from getting in. So we didn’t have any abilities to view fish by snorkeling. Isa tried to swim outside of the netted area and was quickly reprimanded by a lifeguard. We later learned why- there were signs in Japanese across the way stating, “Do not swim. Poisonous jellyfish warning.” Literacy matters!!! I am humbled to now realize what illiterate people go through. It can be life threatening to not be able to read!
Our so-called morning of relaxation was filled with walking up and down the beach, swimming and just enjoying this paradise. Unfortunately, we had to head back to prepare for our next speech.
We were escorted by taxi to Ryukyu University Hospital, where we met our host, Dr. Jiro Fujita. He was our doctor in Takamatsu when we lived there in 1995. Those of you who have read our book may remember reading about our doctor who took care of us in Japan who was so fascinated by CF and took pictures of our clubbed fingers and asked for samples of American “pseudomonas.” Well, he became a professor at Ryukyu University and invited us to speak, with all travel expenses paid. It was truly an honor.
There were about 180 people in attendance, our largest event so far. The audience included medical students and medical professionals. It was truly our opportunity to share our perspective as American patients and medical professionals. We shared about CF so that they may become more aware and perhaps consider diagnosing suspicious cases. We shared our plea for organ donation and how medical personnel have a vital role in discussing this with their patients as a treatment option. The talk was extremely well received. Dr. Fujita gave a brief introduction about how he met us, and what his impressions were of us back in 1995. He presented a powerpoint of our old medical records including our x-rays. I have to admit it was bittersweet to see my old CF lungs up there on that screen, now so long gone. It was a dream to see Dr. Fujita again. Back in 1995, he prescribed clarithromycin (related drug to zithromax) for us because he believed in its anti-inflammatory properties. Now, as many know, zithromax is standard care for CF. He was ahead of his time, so he was so honored we wrote about that in our book.
After the talk, Dr. Fujita and six of his colleagues invited us to authentic Okinawan cuisine. The restaurant was located at the bottom of a narrow street .At the top of the street, was Shinjo (sp?) castle, one of Ryuku dynasty’s main castles. It glowed in the night light and was a piece of history. The restaurant itself was in an old classic building with low ceilings, rice paper windows, wooden beamed ceilings and walkways that encircled a classic Japanese garden with pine trees, a raked pebble garden, and small pond. We sat in a private room on tatami mats, eating off a low table. The meal consisted of aomori (Okinawan sake), peanut tofu, sashimi, raw beef , mushroom soup, seaweed products, fish eggs, fish, sea snail (not my fav), and fried rice. With a little bit of beer and sake, the medical staff became relaxed and gregarious. One of the doctors started to sing traditional Okinawan songs. We clapped along. Then Andrew expressed interest in learning the song and we all started to sing together in festive togetherness. Any barriers were let down with music and sake. The restaurant owner heard the festivities and joined us, demonstrating his skills playing a traditional wooden Okinawan instrument, which resembles a wooden ukelele and sounds like a banjo. The restaurant’s gardner joined too and started to dance. He motioned for us to join, and before we knew it, the group of 19 people were standing on the tatami floor dancing and singing to the music. It was truly remarkable to see this transformation from stiff, formal, polite professionalism, to happy-go-lucky laughter, singing and togetherness. The gardener motioned for us to step outside and soon our group was standing in the pebble garden surrounded by Japanese pine, under the star lit moonlight, dancing and singing. I couldn’t tell if people were drunk or just happy. Dr. Fujita motioned for other restaurant guests to join and soon more strangers were dancing with us. We shared that we were transplant recipients. Many of the staff were wearing our book tour t-shirts which stated, “The Power of Two Japan Tour” so it was a perfect chance to dialogue with strangers and spread the word about organ donation. This evening was one of the most enjoyable dinner parties in my entire trip. It was like a dream to be in Okinawa. I never imagined I would be there. Everyone was extremely friendly, kind and hospitable. There’s so much more to Okinawa than karate.
The next morning we took a taxi to a more remote beach, Toguchi beach. It was natural and did not have a netted area or lifeguard. There was a small island about 100 feet from the shore that had another grave on it. There was a beautiful coral reef and white sand under the clear blue water. Isa and I swam a bit while mom and Andrew sat on the sand. Weary of jellyfish, I did not venture far and swam with caution. I kept thinking of the movie “Seven Pounds” and kept freaking myself out. The mind is powerful indeed, especially in open water.
After a brief swim, we had to head back to the airport for our flight back to Tokyo. It was painful to leave this paradise especially after not having ample time to sightsee. Our taxi driver did take us by the American military base, which left me with a bittersweet feeling. What right do we have to be there? Is it an imposition or a blessing? We also drove through the downtown shopping district. There was clearly a post-war influence. Okinawa’s famous handicraft is colorful blown glass, a craft that started after the war when American military folks would leave their glass beer bottles. The Japanese learned how to recycle and create art from it. There are other Okinawan favorite goodies- pinapple candies and cookies, textiles, ceramics and laquered wood. It was a shopper’s paradise, but we just didn’t have the time.
On Oct 20th we landed back in Tokyo . It was quite a shock going from the paradise of Okinawa to the craziness of Tokyo. It’s like going from Hawaii to Manhattan, really.
After a night’s rest we awoke at 6:30 AM and headed to our first event of the day- speaking at my mother’s alma mater private Christian high school, Friends School , in Tokyo. This is an American influenced high school started in Pennsylvania by the Quakers, a Christian group. There are Friends Schools all over the world. My mother graduated in 1958. She barely recognized the school grounds as all the buildings were remodeled. Every morning the student body has a 30 minute assembly including a reading of a Bible verse, a hymn, and a speech. Due to the pandemic swine flu concern, the students were kept in their classes and we gave our lecture via loud speaker/intercom. A few of my mother’s classmates attended to greet mom and hear our words. It was the first time she had this mini-class reunion, and it was wonderful to see her interact with friends she hasn’t seen in decades. How time flies and how precious it is to grow old with friends from the past. As we spoke into the intercom, we geared our talk to a younger high school aged audience, with a Christian influence. How would a talk about chronic illness and transplant relate to them? We tried to discuss general messages like “ we will all face illness or challenge at some point” or how we shouldn’t be ashamed about illness since its no one’s fault, and how to find support during challenge. We also discussed concepts like unconditional giving or God’s fate. Some of the school staff members and my mother’s classmates sat in the audience, wiping away tears at some point. After the talk, some of the feedback we received was how touching our talk was, how some people have never heard such concepts being discussed, how thought provoking it was. I was very moved and humbled to have such an opportunity to talk to such a young audience about such a deep topic.
We rushed off for a mid-day radio interview for a radio show called TOKYO DIARY. When I was in 3rd grade at Marquez Elementary school in Los Angeles, we had a visiting student from Japan who I was forced to sit next to so I could help translate for her . Well, her younger sister was now a radio personality and invited us to her show. I was nervous at this opportunity to have a radio interview in Japanese! Fortunately, it was not live, but would be edited into a radio show that would be broadcast in November. We laid all our notes out in front of us, and started the interview. Fortunately, the host was fabulous. Plus she was bilingual, so that was a great safety net. We were careful with our words and stumbled with a few, but we made it through the 35 minute impromptu recorded conversation, with only sweaty armpits. For a second , my mind wandered in disbelief, “what the hell am I doing on the radio speaking in Japanese?!” I can’t believe I’m here, doing this. WTF happened? What started as a hobby of recording our life on paper, ended up in this??!!!
We finished with many thanks, and bows of goodbye , and headed to our next event- speaking at Tokyo Women’s Medical College Genetic Counseling Graduate School Program. Tokyo Women’s Medical College is one of Japan’s leading medical schools and it was truly an honor to be invited by Dr. Kayoko Saito whom I had known from the small genetics community. She and her psychologist colleague, Johanna Sumi, visited Stanford 10 years ago to learn about our genetic counseling clinic because at the time , they were aspiring to create a genetic counseling clinic at TWMC. I had communicated with them, provided them some information and now, ten years later, they had a genetics clinic, a molecular and cytogenetics laboratory and two genetic counselors, at TWMC. It was wonderful to see them again. Ms. Sumi is now 82 years old, with hearing loss and a hip replacement, but she is still just as enthusiastic about genetic counseling as before. It was a pleasurable reunion indeed.
At Dr. Saito’s request , I spoke about genetic counseling in the United States- who we are, what we do, what guidelines and policies we abide by, and some of the common tests we offer our patients. Then we spoke about 30 minutes about CF and transplant. There were about 70 people in attendance- medical students, genetic counseling students, lab personnel and other medical professionals. My poor mother, who had been following us around since 6:30 AM, promptly fell asleep in the front row. That’s reassuring, huh?
The talk seemed to be well received, but as usual, there were no questions since attendees are so shy.
After the talk we had a wonderful dinner party, with a table filled with gorgeous hors doevres foods, including salad, fruit, sushi, noodles, meat, cold cuts, octopus (no thanks), unidentifiable finger foods, chicken, cakes and sandwiches with the crust cut off. We mixed and mingled. I struggled to understand some conversation, not only because of language limits but because some students were so shy and timid, they spoke so softly and I think I’m losing my hearing in my old age! The idea of being confident, bold, or showing that you have a backbone, doesn’t seem to be the norm, especially among females. Of course, there are exceptions. I learned that in Japan, genetic counseling students get no patient contact or counseling experience until after they pass their board exams, which is about a year after graduation. I can’t imagine not having any patient counseling experience during graduate school, and having to be thrown into a counseling job without any background! Yikes! Moreover, one student said she graduated, but couldn’t find a job as a genetic counselor, so she returned to school for a PhD in genetic counseling. They mentioned that the salary for genetic counseling is very low and the profession is not yet well recognized. There are only about 40 genetic counselors in all of Japan, compared to over 2000 in America.
There is much progress to be made here as well .
I was so grateful for the warm welcome, generous hospitality and enthusiasm of the genetics team. It was wonderful to exchange experiences and learn how things are different in each country. I enjoyed touring their clinic and seeing how the counseling room, the exam room, the lab and physician’s offices are all adjacent to each other. How convenient!!
We ended the long day with more gratitude and awe at the warmth of the Japanese people. After such a long day, I looked forward to some sleep, in preparation for another busy day. Today, 10/22/09, we visited the Japanese Parliament and US Embassy to share our story and wishes for better CF care and organ donation policies on a government level. On 10/23/09, I have two lectures to give at universities so I better go to bed. I will write about our adventures with the politicians on a separate blog post. Thank you for your interest in our travels and for reading this very , very long and overdue blog post!!
Breathe well! I’m certainly enjoying to do so!Hugs,
ANA STENZEL 10/23/09. -
Thursday, 22 October 2009
Pics from Todaiji in Nara, Japan
Posted by Ashley
We took a day to visit the ancient capital of Japan, Nara. There we went to Todaiji, an beautiful old temple housing the famous giant Buddha statue ‘Daibutsu.’ The temple also happens to be home to...
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Thursday, 22 October 2009
Tedako Hall, Urasoe City, Okinawa
Posted by Ashley
We all went to Okinawa to talk about transplants with people who coordinate and educate on the island. Our first stop was Tedako hall in Urasoe City. Our kind hosts drove us all over the island...
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Thursday, 22 October 2009
Pics from Kyoto Nursing School
Posted by Ashley
We paid a visit to Kyoto Nursing School during their culture festival. Ana and Isa gave a speech to a room of future nurses, while downstairs people were playing games, eating festival foods… and having a...
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Thursday, 22 October 2009
Pics from Osaka City
Posted by Ashley
We had a busy week in the Kansai region, which includes the cities of Osaka, Kobe, and Kyoto. We arrived by bullet train and stayed near Shin-Osaka station. Ana, Isa, and Marc’s film crew paid a...
- Tuesday, 20 October 2009 Episode 6: The Transplant Sports Games in Fukuoka Posted by The Power Of Two Japan Tour Podcast Ana and Isa took part in the 18th Annual Transplant Sports Games in Fukuoka, Japan. It's a small community of people, but all attending are very active and involved in the cause. Participants included transplant recipients,...