—10/4/09
Actually, I don’t even know what day it is. All I know is what event I have planned today and where I have to be and when. I am floating like in a dream, here in Japan, half bewildered and half on cloud 9. It is wonderful to be here, although I am also experiencing that “lost” feeling that is common when one is illiterate and can only communicate at 50% capacity.
The last two days have been remarkable. On Sunday, we attended the annual Green Ribbon Festival, a running event to raise awareness about organ donation. There were 3000 attendees who had the option of running a 10K, 3K or 1K relay. Isa and I were placed in a team of four transplant recipients, us and two kidney recipients, including Mr.Ohkubo, the head of the Japan Transplant Network. The race began at 1pm, in scalding heat as the rain subsided and the blazing sun came through the moist air. The event was organized by the small transplant community. There were speeches promoting transplant and we were requested to address the crowd for 3 minutes. Then, in order to honor the donor families, 3000 red, white and green eco-friendly biodegradable balloons were released in the air. It was a beautiful scene, although I hadvisions of some poor fish choking on a balloon in the ocean. Not very environmentally friendly in my opinion, but… it was gorgeous and reminded me of childhood days at Marquez elementary school in 1977 when we had “Balloon Day.”
The most poignant part of the event for me was meeting donor families. About 5 families were present. Some broke down in tears when they met us. It was an emotional experience, and although our communication abilities were somewhat limited, there was an unspoken gratitude and sorrow that was exchanged. After the balloons were released, five recipients , including us, presented these donor families with a bouquet of flowers. There were many tears and a lot of bowing and apologies. One of the families had lost their daughter in America,and she donated her organs in Boston. It is an extremely rare event for cadaveric donation to happen in Japan. In fact the consent rate for organ donation for brain death patients is less than 10%. When it does happen the media gets a hold of the news and it is hard for these families to maintain their privacy. Many are stigmatized rather than respected for their gift. It is truly hard for us as Americans to understand that. Even the recipients can be stigmatized and ostracized for “taking organs” and going against nature to survive.
Another wonderful part about our day was meeting my uncle Yuzo and his wife Kiyoko. They greeted us at the Japan National Stadium where the event occurred and Yuzo ran the relay with us. He is an avid runner who has completed marathons. As I struggled along in my 1K, breathing heavily and sweating like a dog in the blazing heat, he ran next to me, encouraging me with “gambare” which means “do your best, perservere.” It was so wonderful to have the encouragement of relatives I rarely see.
Outside the stadium, the Dream Team members set up a wonderful booth display including our book, banner, fliers, posters, and music to promote our story. There were other booths also, including of course information on organ donation, bone marrow donation as well as a photo wall of Japanese transplant recipients . Their efforts were similar to the efforts of the American Transplant but in a much smaller scale with only a few dozen very active volunteers whose lives were touched either professionally or personally by transplantation. Some of them stood amongst the crowd handing out fliers about organ donation and our book. Their determination and efforts were humbling to watch as some people just walked by not interested in such fliers.
At the end of the 10K, awards were presented to the winners of the run. Then the three transplant relay teams consisting of recipients and transplant physicians were presented with rewards as well. I was surprised that we were presented with a cash award, even if we really were not fast. It was wonderful to meet several transplant physicians from renowned Tokyo hospitals. Most of them performed living donor kidney transplants, but their hearts were in the cause.
I left the day with gratitude that I could run, and a high from meeting so many people. The transplant recipients were not ill looking or disenfranchised like I was led to believe, but they were working, athletic, active people just like many of our American transplant recipients.
I couldn’t help but feel some disappointment in my own performance in our 3 minute speech. There was a terrible echo in the microphone, and it was difficult for me to read my notes, so I stumbled upon my words much more than I would have liked. With that, I was uncertain how much the audience of 3000 could really understand our message. I was told it was fine but I am my own worst critic. That aside, it was a wonderful day. The film crew shot some great footage of the well attended and organized event. They captured so much of the Japanese culture, including a group warm up session led by the celebrity athlete host.
Although the night was young, we left the stadium and headed back to the hotel. Robin, Isa, Andrew and I went out to dinner ourselves at a local Yakiniku, or grilled meat, restaurant where you cook your meat on the table. The portions were so tiny that we laughed, and Robin commented, “How can someone with CF live here?” We are truly fortunate in America to eat so much!
It was a wonderful day of emotion, exercise, and cultural observations.
Ana
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