Posted in: Ana & Isa's Blog, Journal On The Road, On The Road | By Isa

Dear friends,

Thanks for reading this blog. I have a half-unfinished blog to post, but I am compelled to share the events of yesterday. Perhaps Ana beat me to it, but the magnitude of the day warrants two entries, by two twins.

Yesterday morning, 10-8-09, the group of ten of us, and ten times more luggage, left rainy stormy Tokyo and boarded the Shinkansen Bullet Train for Sendai. A serious typhoon was hitting the island, and only the Shinkansen and one other line was running. All night long we heard howling winds and rains outside our Tokyo hotel.

We have a motley crew, carrying oversized American style suitcases, several medal cases of camera equipment, and a body-bag sized case of lighting equipment. We all follow Naomi, Ashley and Yasu, the fluent Japanese members of our Dream Team. We apologize profusely and used the “we’re American” excuse to get through the normally prohibited baggage limits, to board our train to Sendai.

For two hours, Ana and I rehearsed our speak, while Robin blogged(and enjoyed a 300yen -$3.50 cup of tea!!!), the guys gazed out the window.   Finally we left the concrete jungle of Tokyo, but still, for miles, met skyscrapers and high apartment buildings of the dense wider Tokyo metropolitan area. We passed rice fields and rivers and kawara roof tile homes. Finally, we saw green-GREEN, sigh….- and hillsides of Japan.

The Shinkansen stopped for 40 minutes to wait out the roughest of the typhoon, while we prayed we could arrive in time at Sendai.

We arrived at the Sendai Station, to see a meek beige-suited man smiling behind the turnstyle gate. It was Mr Adachi, or Dr Adachi, a child psychology professor at Miyagi Gakuin Women’s College in Sendai. We greeted with smiles and bows, and he escorted our motley crew down the escalators, (with several trips), and then up to the Sendai Metropolitan Hotel.  We piled probably 400 pounds of baggage in the corner of the check in, and then went to a Chinese restaurant for lunch. Dr Adachi mysteriously disappeared to return to work. It always takes a while for the camera crew to figure out where they are going and we slowly entered a private room of this Chinese restaurant.

Then, we saw them. Two beautifully manicured, middle aged Japanese women. Ms Rumiko Aoyama, the mother of 18 year old CF patient Yoko, who sadly died 5 years ago, and Mrs. Adachi, mother of Akihiro, a 21 year old CF patient in Japan. I sized them up with awe. They were just like my mother, but younger, petite, more made up properly according to Japanese norms, without the worn out look of a Japanese who has adapted with difficulty to America. I have never met another Japanese CF mom! It was amazing.  They bowed, and vocalized “Waaaahhhh, ni su to meet to yuu!!! I felt like crying but held back, not wanting to make a scene. Inappropriately, perhaps, but I embraced these women like my own aunts. Robin was introduced, and then, I had the strange feeling, that the mothers of all CF patients were present in this room.

Over lunch, Ana and I talked alot, and so did Robin, about life with CF in America. We asked alot- and learned there are 6 active CF families, and one is in charge of the CF Japanese website. Mrs Aoyama started up this group, with help from Kathy Russell(USACFA) in America.  We learned there are 36 families in Japan according to public records. Many don’t know about the website, and doctors don’t know either. Slowly, but with determination and kind assistance of Naomi’s translation, Mrs. Adachi started to ask about CF treatments- what to look for, what about enzyme and antibiotic doses, all the normal stuff we yearn to know from people who’ve been there. Robin, who shined with maternal beauty that draws me to her as a surrogate daughter, shed tears, sharing how hard it is to worry, and fear for her daughter’s life. Soon, all of us let go, tearfully sharing this common struggle. Mrs. Aoyama, remained amazingly posed. She is the only one in this room who has lived with loss, the end of CF, and yet somehow maintained an accepting , quiet stance. Perhaps inside of her, things were different. I don’t know.

We learned that both CF children stopped going to school after middle school, due to CF complications and doctors warning them “to stay away from infection.” Both did home IVs, and we were glad. They suffered so much.  Yoko chose not to have a transplant. Akihiro has been on the lung transplant list for 1 year, and the wait is usually 3 years in Japan….. (please pray!) there have only been 5 brain dead donors this year, 66 cardiac death donors this year where many times the lungs cannot be recovered… The struggle Akihiro goes through to use enzymes! It is a complex system where he is part of a never ending “clinical trial” which allows the family to use imported meds. After his transplant he won’t qualify for this “clinical trial” anymore—- even though he needs enzymes!!! I don’t understand this cruel system. There was so much more we wanted to know- and they asked about sinus disease, diabetes, inhaled medications, so much in so little time. They were hungry, like we were so hungry once, for  CF information.

We exchanged gifts, and then rushed to taxis to the Miyaki Gaguen College. Sadly Mrs Adachi left to “take care of her son”, who was too ill to attend the concert… we were sad we could not meet him. But we remembered when it was such a big strain to leave the house.

Everything was so nicely organized and escorted; we felt like movie stars. We arrived at the school, only to be surrounded by a group of gleeming young volunteers and “stage managers”. We were quickly seated and shown the plan for the evening. We met the famous Mitsukosh Ambe, a very talented kind musician who volunteered his time to perform in a concert with us. He was 40 something, very sincere, with a twinkle in his eyes. I melted.

I tuned my pipes, the film crew interviewed people, and we nervously met and greeted many. A half dozen students wore “The Power of Two Project” t-shirts, and manned a table in front of a large auditorium. One table sold handmade Japanese crafts, and portions of the proceeds went to the “Committee to Enable CF Treatment.” Another table sold all kinds of CF goods Ana and I sent to Japan in advance… I guess to also raise money for CF. The volunteers were so amazingly gracious. They insisted, “we would like to know what do you prefer, western room or “tatami (Japanese) style room”- where we could rest”. They ordered Western style sandwiches  for the crew and us (while all the Japanese volunteers and chorus had Japanese bento boxes.. oshiina… in english: doh…).

I tuned my pipes and we were through a very professional concert. This was indeed going to be very different from last Sunday’s concert. For the rehearsal, Ana and I practiced our speech, trying to perfect our Japanese, and Ambe -san started to sing. Then Ana and I started crying. His song was so touching. We could partly understand the words- about feeling lonely, feeling sad… The Japanese are so reserved, so emotionally private, but through music, all the emotion poured out.

After the rehearsal, I had a lot of time before the start of the concert to eat sandwiches:),  fix our messed up powerpoint, get interviewed by several Japanese film crews, and meet and greet. We met Mr Tazawa, a physician who is chairman of the Committee to Enable CF Treatment. He gave me a children’s book he wrote called, “When Will I Get Better?” It is about a child with serious incurable fatal disease…. obviously CF was on his mind. We met many other eager, complementing, kind Japanese people, all of who practiced their English with us and showed only grace, kindess, and cheerfulness. I had a low blood sugar and drank my favorite “Cal Pis” aka “Cow Pis”, a Japanese sugary drink, and said how much I loved it. Next thing I know there is a bottle of CalPis in our room. Same with bananas. We were so grateful!

When the concert started (very promptly, Japanese style), Mr Adachi gave a heart wrenching speech about the CF situation in Japan, with videos of his son coming to Children’s Hospital L.A. many years ago to learn chest percussion therapy. One video showed the four year old child breathing a Pari nebulizer-just like me!- but then reluctantly turning off the machine and staring at the camera with a frustrated look on his face, then dropping his head into his arm… been there, done that! It pained me to see a children so young breathing so heavy.God, this disease really sucks.

It takes so much courage for this family to speak out in a culture where asking for help and being open about disease- especially genetic disease- is so discouraged. The dedication was amazing.  Mr Ambe really cared and asked such good questions. The audience were students from the college, fans of Mr Ambe, and those interested in charity and social consciousness. Then Ana and I were introduced, and Mr Ambe asked us simple questions in Japanese. We answered them as best we could, trying to be light and humorous- like what Japanese foods we liked, what is our daily life like, etc. Then it was time for our speech.

To me, this was the most important speech for our entire Japan trip. In Japanese, using notes, for 20 minutes we talked about our lives, how the CF community (CFF and CFRI) started, how American charity works, how we feel an illness community is so important, and finally, messages we learned from living with CF and transplant.

Afterwards, Andrew brought my bagpipes on stage and I played “Highland Cathedral.” I think it went well. It sure was loud!

We were then escorted to the back of the stage and then to the front to sit down. Ambe san started to sing a few songs, and a chorus of girls from the school sang a beautiful song about a boy who writes a letter to himself when he is 15, about all the goals in life he has and what he wants to do. Of course, I cried. Then Ambe san read the book in Japanese,” When Will I Get Better?” He did such a  fine reading, with background guitar. 

The book was about a 10 year old Japanese boy with a serious disease who goes in and out of the hospital and cannot go to school, who finally one day asks his parents this question. They say they can’t answer him, and he should ask his nurse. His nurse says only the doctor knows. And so the boy asks the doctor the same question. The doctor bows his head and says, “I can’t answer that.” Time passes and one day the boy finds a letter on his hospital bed. It is from the doctor. The doctor writes to him, saying he asked when he will get better, but the doctor cannot directly answer the question. He says the boy is walking down a path, and far down the path is the answer, but he must just keep walking now, on the path he sees in front of him, and keep going. I’m not giving justice to the poetic and beautiful words of the Japanese language, but nonetheless, I cried and so did Ana and Naomi and Robin. Only Mrs Aoyama sat without tears. I normally am composed, but the music and words, were powerful. All this child wanted, and all we want as humans-Americans, Japanese, any culture- is information.

All of a sudden I remembered what it was like for me, age 10, 13, 16, to know I had this terrible disease and a dreadful future ahead, only ending in death. There was a time when lung transplant was NEVER in the picture, and how scary it was for me as a child. And honestly, that’s how it is for many, many CF children around the world.

My head gets so caught up in transplant, but in fact, some CF peers chose not to have transplant, some will never get a transplant. The experience of CF alone is so real and full; it conveys all that it is to be human- love, breath, connection, community, zest for life, goals and making the most of one’s life, fighting and acceptance. As Ms Aoyama says about Yoko,  ”in short time, such a good life.”

After our speech, we introduced Robin, who presented about 25 prayer flags made by CF family members and CFRI staff/friends. It was a touching metaphor that all CF parents share the same hopes for their kids, all across the globe. I think the audience enjoyed to see the many colors strewn out across the stage. I think Mrs Aoyama and Adachisan were pleased, but it’s always hard to really know in such a reserved culture. 

Ambe continued to sing, with and without the chorus, and then I played Amazing Grace with my pipes, along with the synthesizer (cool!), and then Ambe san sang his last song, “Kizuna”. This song means “bond” and he wrote it just for tonight. It represents the bonds people have intimately, in communities, and as humans. It was so beautifully written, though I could only understand about 70% of the words. Again, I was very emotional. We all were.

The concert, the staff, the professionalism, the passion of the CF families and supporters, simply blew me away. So, so, so, so much effort went into one concert, and I was humbled to be part of this. This was yet a small but forceful community and I felt so happy to belong. On the cab ride back to the hotel, Mrs Aoyama said she was from Fukui- that’s where my grandfather’s family is from…. are we related? Could that explain the kizuna? She said this evening was beyond her words, and she remained quiet and reserved. We talked about Yoko. I don’t know what’s culturally appropriate, or what she wanted, but I can only hope she enjoyed sharing memories.

We had a late night and left exhausted but totally high. This post is getting too long so I’ll stop going on and on. I of course have more to say.

We flew to Fukuoka today, 10-9-09. The film crew took pictures of our luggage tags destined for FUK. Robin left today, after an eventful week. It was such a blessing to have this loving woman join such an intimate week of events.

At the airport, we arrived early because of the luggage we have. We sat around eating beef tongue (famous in Sendai), and then Naomi got a call on her cell. The Adachi family came to the airport!!! We walked to security, and they weren’t there. Then next to security was a large glass wall. There they were! Akihiro was in a wheelchair, with a mask on, with his parents each holding signs, “Thank you from Japanese CF families” and “Sendai… Send AI (ai means love)…. Send Love to you!” Mrs Adachi wore the Stanford t shirt I gave them and a 65 roses necklace. Ana and I started crying again. We put our hands against the glass wall to wave. There was a phone in the middle of the glass, and we talked to each other. Akihiro has a sweet but weak voice.  It was like a jail two way call. But perfect for cross infection concerns!!! We wished him good luck, best wishes for transplant, and Ana and I fought for the phone. I talked to him about baseball… he was wearing the SF Giants shirt I gave him! He smiled wonderfully. Akihiro was very handsome but his body was thin and breathing was so heavy. It was amazing to meet him, even through the glass. Okay, that’s my last story. But the all time best to me.

I’ve had many amazing days- graduations, my wedding day, transplant day, Rose Parade float ride, Donate Life hot air balloon ride, but this day ranks as one of the best in my life.

Okay, now I’ll really sign off. Tom Martin arrives within an hour, and we are in a hotel in Fukuoka. Our room is the size of a closet, and we feel like we’re in an RV for a few days.

Thanks for your interest. I hope you are all well and enjoying your kizuna’s.

Love, Isa