Dear friends,

I hope you are all enjoying your September. The nights encroach our daylight sooner, there is a chill in the early morning and evening air. Bummer. Wish it could stay summertime forever.

This weekend, Ana is backpacking in Tahoe with friends and my dad. I think it was too much, but she said it was good for her mental health to get away from the stress of preparing for our trip.  Because I have a torn tendon,  I’m staying in Soda Springs at my friend’s condo, with my mother, practicing broken Japanese non-stop. My poor mom finally said, “I gotta take a nap.” So here I am writing my blog.

Last weekend, everyday, Ana and I sat together preparing our Japanese powerpoint talk for about 10-12 hours a day. It was non stop back and forth like this:

“We don’t need that.”

“Yes, we do. You’re the one who said we need to explain brain death.”

“We did that! It’s here.”

“But this has more detail. We need to tell the American perspective.”

“Enough already! It’s preachy. We need to cut. Iranai (we don’t need it.)”

“God, you’re so controlling. Don’t you notice how demanding you are? Annoying as hell.”

“You are. You just made me cut all the psychosocial slides. Now let’s focus. Practice.”

“Zoki teikyo to ishoku enno kanshinwo takameteimasu…”

“No you did that wrong. It’s zoki teikyo to ishoku e no…”

“I said that.”

“No you didn’t, you said enno. You told me I sounded bad, so I’ve been practicing, and you clearly haven’t. You really need to gaman (do your best)…”

“You’re rude! I’m doing the best I can!”

And so we continued. In unison, we recite: “Shousuu no shiryobukate, no, chiryobukakite, no, shiryobukite, no, shiryobukakute…” What the fuck are we saying?!?!

We pause, throw our heads back with laughter, and giggle non stop. 

We look at each other, saying, ”I love Mah(my Ana)” and “I love Mah(my Isa).

 ….. and so on and so forth, went our conversation, for hours at a time….It was exhausting. Our poor partners- left the room or put on their ipods, real loud. Our dog Rupie, pranced around the room squeaking and whining, for attention.

Seriously, though, we are doing the best we can to prepare and recite speeches in a language that is exceedingly difficult to understand, and we barely speak it.

We got really overwhelmed last weekend, because we have approached these speeches in a disorganized, overly zealous, inefficient manner. Oh! What is wrong with us!? First, we had our translator translate a speech (Google talk on Youtube) that ended up being way too long.  Then we didn’t say what we really needed to say, so we created more slides. I was “in charge” of the CF/illness section, Ana was “in charge” of the transplant talk. We both created 50 slides for this, and there is NO WAY we can give a talk that long in our horrible Japanese. All the audience will end up brain dead.

So we panicked and realized we have to cut, cut, cut. We have to be culturally sensitive and not preach, or act like we are neurologists (note to Ana). We have to prepare speeches for medical audiences but also liberal arts college audiences. Some speeches will be 5 minutes, most are 40, some 90 minutes.

For all the speeches, we need an interpreter for the Q & A.

It’s fun, though, to learn what can be said and not said in Japanese. God, I love English. We can express whatever we want to with this language.

Anyway, the title of this email is “It takes a nakama”- that’s the word for community. This entire project of a result of many, many people who’ve come on board to support our trip to Japan.

I want to thank all of you, with all my heart and lungs, for your kind emails of support and kind donations to our documentary film project. We truly appreciate that you care enough to explore our new website and show your support for this nonprofit film. There are over a dozen guys working on the website/film, at least a dozen people in Japan working very, very, very hard to prepare events for us- out of their own goodwill. And then there’s my childhood friend Naomi, who is the Japanese-English go-between for all of this, helping us understand what in the world is going on. This has taken off to a pace we just can’t do ourselves. Of course Andrew and Marc Smolowitz, our producer, are doing a great deal to solicit community partners. It’s amazing what kind of mobilization happens when some Y chromosomes enter the picture.

And, I have to say our speech preparation has been the effort of many people. THANK YOU! Our friends Mari, Taka, Masako, Chie have all contributed to translating our speeches for us. My mother and our paid interpreter Hiroki have also translated our slides. Chie and Hiroki have recited some of the speeches onto tapes, and we’re playing those over and over again to listen to the proper hatsuon (pronunciation). Our friend Robin and Stacey have helped to put our speeches onto notecards, which we’ll carry when we are on stage. There’s no other way. And, then there’s mom, who has listened to me for 8 hours so far, (and many more by phone) straining to understand what I’m trying say.

Many of our friends have kindly offered help to the CF families in Japan who have very little treatment. We are grateful for your compassion.

Well, I am deeply humbled. I am still little ol’ me, the sick twin who got better, and did her best, and wrote about it, and became public. Then this happened. When I was a kid I always wanted to be a CF poster child, but knew they wouldn’t take me because I was Asian. Not quite representative… well, now I am part of this. While I still don’t love to soak in the attention, I am willing to be this public to help other families gain hope, and for more attention to be given to organ donation and cystic fibrosis.

Okay, well, back to my notecards. I’m wearing a tshirt that says, “How do you get to Carnegie Hall?” On the back it says, “Practice, practice, practice.” So, how do we go to Japan and become advocates for organ donation? Renshu, renshu, renshu…guess what that means.

It’s all fun, we have to remember, and we can’t stress out too much.

Thanks for reading our post. I truly admire many of you who have shared your personal blogs with me as well. Keep on writing! It’s good for the soul…

Hugs, Isa

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