10-12-09

Where does the time go? It’s hard to believe our trip has almost reached the half way point.

We have spent the last few days in Fukuoka, a city on Kyushu, one of the southern most islands of Japan. With Robin departed back to America, we welcomed Tom Martin, our other CF/Double lung transplant friend to our team. Our entire crew of 10 got a kick out of Fukuoka’s airport code, FUK. Not to mention we took All Nippon Airways, or ANA, to come to Fukuoka, so the luggage tags read “ANA FUK.” 

Anyway, we were invited to attend the 18^th Annual Japan Transplant Games. Mr. Michiko Ohkubo, who is basically the leader of the transplant community in Japan, invited us to join. Fukuoka is similar to the city of Takamatsu that we lived in back in 1995. It is a coastal city, populated but not as crazy as Tokyo by any means. There are open parks, tree lined streets, and even forested hills in the background. The main downtown train station, Hakata Station, is surrounded by taxi stands, high rise hotels and neon signs, just like any downtown, even in a “small “ town.

 

Mr. Ohkubo graciously reserved rooms for us at the Hotel Clio Court. However, upon arrival, it was the smokiest hotel we have ever been at, since it was attached to a Pachinko casino and all the smoke from the casino floated up to the lobby. To make matters worse, we were all given smoking rooms, with no non-smoking rooms available. Not to be fussy, demanding Americans, but we then continued on a 2 hour wild goose chase going from hotel to hotel looking for six nonsmoking rooms. Finally, we found 6 non-smoking rooms at the Green Hotel which was a block from Hakata Station. So our so-called day off ended at 4 pm when we finally settled into the hotel.

 

The next day we arrived at the opening ceremonies of the Japan Transplant Games, held at the Fukuoka Community Sports Center, which was about 20 minutes away by train. Volunteers for the event graciously met us at our hotel to escort us there. The athletes marched in by region, and then by country. There were small groups from the USA (Isa, Tom and I) and also from New Zealand, Thailand and Vietnam. Most of the athletes were children. Almost everyone who had a transplant in Japan had a liver or kidney from a living relative donor, with a few exceptions. We met a 22 year old man who had a small bowel transplant 9 months ago. We met two double lung recipients and one heart lung recipient who had their transplants in Osaka and Kyoto. One of them, Itadaki-san, was a dynamic, friendly energetic dynamo whose smile lit up the room. He was the first ever double lung recipient in Japan, so his anonyminity was blown and he was some sort of celebrity. He had his transplant 7 years ago due to pulmonary hypertension and was in his thirties. 

 

The rest of the athletes had their transplants abroad, mostly in America.  Most countries have closed their doors to foreign recipients, but America continues, for now, to reserve  approximately 5% of organs for foreigners for humanitarian reasons. I feel proud to live in such a generous and compassionate country.   Personally, I can’t imagine the exhausting energy it would require to fundraise one million dollars, fly for 10 hours, relocate to a country where I was not familiar with the language or medical system, and then wait for a transplant- ALL WHILE HAVING END STAGE DISEASE. The people who do this are STRONG and have such a drive to survive.   With the inaccessibility of transplant in Japan, no wonder some people with end stage disease just resign to death. It seems so much easier than going abroad .

 

Anyway, all in all, the opening ceremonies included a procession of athletes, a welcoming of 20 donor family members, and several speeches. There was an athlete’s oath, and a statement made by Mr. Tanaka, a leader of Japan’s donor family network. This was followed by a warm up session led by a physical therapist in which all participants did stretches and various warm up movements in unison. There was no live  music, no emotional fan fare like the USA Transplant Games. There were about 90 people in a gymnasium and about 40 spectators in seats above. It was pitifully small compared to the USA Games. To me it was a visual representation of the limitations of access to transplant in Japan. Nonetheless, the celebratory aire of comraderie and a shared vision and appreciation of life was present.

 

The afternoon commenced with tennis, badminton, curling and bowling. We watched a few of the badminton competitions, and then got a glimpse of tennis before rushing off to the train station to go to bowling. Could you imagine the attendings of the USA Transplant Games getting around by train?? I think there would be revolt!

Anyway, we arrived at the bowling alley and registered to bowl just for fun. I suck. The last time I bowled was in 2002, and I remember falling flat on my face in the lane as the ball pulled me down with it . So embarrassing!
It was wonderful to see so many people enjoying a happy time. Doctors, donor families, recipients, supporters, were all present and we all bowled together. In the Japanese transplant games, anyone can participate. So family members , friends, donor families and doctors all bowled together. Humbly I confess by scores for two games were 73 and 63… didn’t I say I sucked? Well, I won’t tell you what Isa bowled!

I’m proud to say that Naomi won a bronze medal for bowling!! Apparently non-transplant recipients can win too!

 

At the bowling alley, there was an arcade of various coin operated games. There was a large photo booth that took fun, outrageous personalized pictures, and we shoved 10 of us into the booth and took photos. The machine was filled with loud music, flashing lights and instructions on the screen on how to select backgrounds for our photos. There were multiple shots and for each one there was a countdown till the camera went off, and 10 of us squeezed close to fit our faces into the screen. There was such laughter and togetherness in our group, that I new this was a trip of a lifetime for all of us, and that we picked the right people in our film crew. The most powerful dedicated people for the Japan book tour were in that photo- Taka, Naomi, Isa, me, Andrew , Marc and the entire film crew. Needless to say, when we exited the booth, we were all profusely sweating but giggling with fun.

 

The evening ended with a cocktail reception that served a light dinner, buffet style. There were no chairs and my feet were killing me. We cut the night short and retired in preparation for the events of the next day.

 

Sunday came quickly and before we knew it we were on a train again for the Fukuoka Community Sports Center. Isa and I were signed up for six swim events- the 50 m free, back and breast, and the 100m free , back and breast. Sadly, in our age group, there were only 2 other women signed up, one of whom was a blind kidney recipient. The indoor pool was 85+ degrees with the air above it close to that temperature, like a sauna. The spectators were fanning themselves and sweating profusely. Somehow I was nervous as always, stressing over my biggest competitor, Isa, who spent the morning moaning and groaning about how out of shape she was, and how she wouldn’t push herself and didn’t expect to do well. Well, of course she beat my sorry ass in four events. The water was so warm I couldn’t get enough air. I didn’t push myself to the point of losing my vision or all body burn , which is what I usually do, because I wanted to reserve my energy for six events. I save that agony for the USA Transplant Games.  The swimming officials were so cautious with us, that after each event they would call a 5-15 minute break to allow us to rest. With only four female competitors, the morning went fast. In the men’s section, there were about 4-5 athletes. Most of all there were children competing which was always a delight to see.

 

By the sixth event, my muscles were tired and I was in “fuck-it” mode, but since it was backstroke, which is my strength, I hauled ass and got the gold. Keep in mind it was only Isa, me and the blind lady in the pool.

After swimming we rested and had a wonderful bento lunch provided by the Games.

The box has a central section with white rice, and surrounding that are individual compartments filled with fish, egg, radish, spinach, fish cake, red bean cake , and other delights. It was as artistic as it was delicious.

After lunch, we headed toward the track and field and spent the afternoon watching various events like frisbee throw, ball throw, long jump, and the children’s 25 and 50 meter run. Most importantly, we spent time mingling and chatting with other recipients and donor families, hearing their stories, and realizing that even though transplant is rare in Japan, those who do receive the gift of life here, have similar experiences as we do. There is a universality in this experience that goes beyond language and culture.

 

We met people who were in relationships, who worked , who traveled. Prior to coming to Japan, I was led to believe that Japanese recipients were depressed and  inactive, and not allowed to have normal life privileges, but this was not what I was seeing first hand. Granted, this was probably a selected group of people who were more healthy and active enough to participate in sport.s. The other double lung recipient female that I did meet, however, did fit that role; she sat passively at the sidelines just watching, with a mask on. When we introduced ourselves with enthusiasm, she barely said a word, didn’t show any emotion about meeting another lung recipient, and frankly acted like she could care less. She had a mask on even outdoors so it was hard to say if she was even smiling.
So, the bottom line and lesson of the trip for me was, how people cope or live post-transplant is purely individual, and cannot be stated generally. The person who told me that Japanese transplant recipients are depressed and homebound, probably has her own perceptions and emotions tied to that assumption.

 

At 3pm, I ran a 100 meter dash. My competition included two other girls, aged 12 and 15 (may I remind you all that I am 37?!). So, no surprise, I came in last. But I ran it with no warm up whatsoever and a stomach full of bento. Since there were so few female athletes, the awards were given regardless of age, so I got a bronze. Woopee.

By the way, the 12 year old girl got “Athlete of the Year” for getting the most medals in her events.

The track and field events ended with a 3K walk/run, where we were able to walk the streets around sports complex and see some nice views of the mountains, parks and streets. We walked with a donor dad, Mr.Tanaka, who told us his story about how his 27 daughter died and had a donor card. He donated her organs. As is Japanese custom, her body was prepared for burial (did anyone see the Japanese movie-Departures?) but then brought home for display. He showed us photos of her laying in the coffin- beautiful, like a doll, not disfigured at all, like some organ donation opponents believe.

He received many , many bouquets of flowers from supporters of his decision, but because donation is so rare in Japan, the media got hold his story and hounded him and his family for months after the event. Their privacy was non-existent. He has received anonymous thank you letters from the 7 recipients of his daughters organs but Japanese law forbids any personal contact or interaction. He spoke about he yearned to meet the recipients, how he feels his daughter still lives within them, and that he cried and cried when so many people showed support and kindness to him . He did, however, also receive hate letters from organ donation opponents, but he said he didn’t open any of them because it would be too painful.

Today, Mr. Tanaka is one of the leading organ donation spokespeople in Japan. He gives talks at high schools and to medical professionals. He is a dynamic , passionate, fun loving and endearing older man. My heart felt for him.

We ended the long day feeling tired but full of life and love. At the brief closing ceremonies, a few words were spoken, congratulating athletes on their efforts and thanking all the volunteers. The most poignant experience was when all participants were asked to hold hands in a big circle right there on the track. Words of solidarity were spoken and then in a count down of ichi , ni , san (1,2,3), we all rushed forward holding hands, as the circle came together in cheers and clapping. It was so moving and so powerful. Then a few of the strong guys picked up Mr. Ohkubo and carried him like a hero. Without him, these Games may not happen. He really is the father of this cause in Japan.

There were a few hours before the dinner Gala party so we returned to our hotels for rest and showers. At 6:30 we headed back to the smoke infested Clio Court Hotel for the final Gala party.

There was a live Japanese band, and plenty of Kirin and Sapporo beer was poured. Then, the band started playing American rock n’roll from the 50’s and 60’s and people started to dance. And boy did they dance!! I have never seen the so-called reserved Japanese, explode into such festive comraderie and celebration. The whole room lit up with boundless energy even after a day of competition. Clearly, a little beer can go a long way.

Almost everyone, old men, old women, young children, donor families, living donors, recipients , danced in the most exotic and lively ways. It energized me and filled my heart with gratitude and awe. It was truly the most lively dance party I have ever attended. Did this have something to do with receiving the gift of life?  During some songs, people formed a line, putting their arms on the shoulders of the person in front of them, and a long caterpillar of people danced around the room. So much for cross infection. I hope I don’t get swine flu…

 

   It was an amazing experience to be among people with similar joys of life. One donor mom said she never had the strength to write the recipients. She said she never knew if she made the right decision. But when Isa and I made a short speech of gratitude during the dinner party, she felt she made the right decision and was inspired to write the recipients. Although our communication skills were limited, I am grateful that I can communicate enough to express gratitude and understanding to donor families.

After a festive evening, we retired, only to wake up early the next morning for a bus tour of Fukuoka. There were about 50 people on the tour. We drove for over an hour through the rural countryside of Kyushu, with rice patties, blue tiled rooftops, bamboo forested hills, and small narrow streets. It was a sight very reminiscent of our time in Takamastsu 15 years ago. It was the more rural, beautiful side of Japan to see. We arrived in the town of Yanegawa where we would take a boat ride on the Yanegawa river. It was gondola style, where twelve of us sat on the floor of a large wooden boat and a  boat master stood in the back of the boat on a platform with a large wooden staff which he would push into the shallow water to move the boat forward. We traveled 4 kilometers for a most relaxing boat tour in the delightful sunshine. We traveled the canals of the area, some next to fields, others through neighborhoods where we could see traditional old homes, including the home of the grandparents of Yoko Ono (as in John Lennon). There were statues and plaques written in Japanese dedicated to the famous poet of the area, Kitahara Hakushu. We also saw the remains of Yanegawa Castle, which was destroyed in the 1800’s by Emperor Meiji, who wanted to increase the Western influence on Japan by destroying cultural artifacts. The canal was lined with blooming flowers. Occasionally the small boat had to go under narrow bridges and the boatmaster would break out in song- traditional old regional folk songs in the most historical voice. Ironically, at one of these moments, he pulled out his cell phone! The past meets the present!

 

After a wonderful boat ride, we headed to the town for a few minutes of shopping. The region’s specialties included river eel, or unagi. A store sold dried eel backbone, which tasted like a salty cracker, and hija, the root of a water plant that one eats like a chestnut.

As we shopped, we heard in the distance drumming. Since Oct 12^th is a national holiday , Sports Day, there was a festival going on, which included men on a large platform on wheels performing traditional theatre acts with costumes, masks and loud drumming, flute and a gong. After the performance was over , about 20 men in traditional costume took the platform by its handle and pushed it in circles as they sang.

We continued on for an eel lunch by the river/canal with our tour group. We sat on the floor on a tatami (rice mat) as we ate delicious eel , rice, soup and Japanese pickles.

After lunch we continued for another hour to a famous shrine,Dazaifu Tenmangu, where people go to pray for success in academics. It is one of the most visited shrines in Japan for students. We walked up a long street lined with souvenir shops , and street vendors selling freshing baked mochi cakes, squid on a stick and rice crackers. As we approached the shrine, we went over koi carp ponds, arched bridges and under tori gates. There were bronze statues of cows everywhere but unfortunately we couldn’t read the significance of this. Prior to entering the shrine, there was a street performer with a pet monkey on a leash doing tricks like walking on stilts, doing summersaults or walking on its hands.

As we approached the Shinto shrine, there were Shinto priests selling charms and fortunes. Tourists buy the charms and write prayers on them, and then place them on stands near the shrine for wishes. For the fortunes, worshippers read them, and then tie them to poles near the koi pond. It was a delightfully classic representation of Japan.

We got a glimpse of a Shinto prayer ceremony and wedding in a distance building, where the bride and groom were dressed in fancy traditional kimono, and many of the female guests were in the most ornate and beautiful kimonos.

As we headed back, we enjoyed the delightful street vendors and enjoyed hot-off-the-grill mochi cakes filled with red bean.

It was a wonderful way to see the countryside of Kyushu and I was grateful that this tour was part of the Transplant Games experience.

Ana

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