Isa’s Post on NY & Portland: 11/12 to 11/17/11

It’s mid-December, and like you, I realize the days of 2011 are passing very quickly. I am on my last plane ride of 2011, returning from three full days in Boston, for the Special Screening of “The Power Of Two” with the Boston Asian American Film Festival. As I reflect on the past weeks, all my memories spin further and further away, as my daily focus is constantly on the future. What a privilege. So, I’ll squeeze these brain cells hard to recall the events of late November. (and by the way, my brain cells are so taxed I can’t remember my login, so I’m using Ana’s to enter this blog!)

In between two events, Red Rock Film Festival (11/9/11) and the Portland Screening (11/16/11) of “The Power Of Two,” I flew 3000 miles to Albany, NY, thanks to the invitation of the Northeast Kidney Foundation, and their special screening of our film for Donor Sabbath. (Donor Sabbath is a nationally recognized Sunday in November where places of worship are encouraged to discuss organ donation and it’s spiritual implications.). They put me up in the Desmond Inn, right by the airport, which is by far one of the best hotels I’ve ever stayed in (in par with the Ritz, but $79/night)! I have one friend in Albany, Kathe L., with whom I served on the Patient Advisory Committee at UNOS. Kathe is waiting for a kidney and does home dialysis. She invited me to join her Kidney Support Group, and I’m so glad that I did. Just as I’ve read that kidney disease is not an equal-opportunity illness, the room was filled with Caucasians, African-Americans, and Indians/Asians. I learned so much from listening to people with a different health challenge, discuss ways in which to maximize their quality of life. Kidney disease is hard! There are so many details and nuances to dialysis treatment, just as there are with CF. However, these patients must wait 5-7 years for a deceased donor!! Kathe was a very compassionate, skilled moderator, who shared her personal experience and knowledge while inviting others to share. She is an example of someone who has been given a health challenge but turned it into opportunity, as she works for the Renal Support Network, a non-profit dedicated to education and support of kidney disease patients.

The screening on November 13, Sunday evening, was a great success. I was grateful not to have to spend hours recruiting my contacts; but rather rely on the Northeast Kidney Foundation for their efforts. We had about 100-120 people join us in the GE Proctor’s Theater, a historic theater in downtown Albany. I was invited to give introductory remarks, and a Q&A afterwards. I met more patients, CF care providers, CF patients, and donor family members. It felt refreshing to be at such an organized event! And though it’s clear the film has impact on its own, I am grateful I was able to be there, to field questions and comments and engage with the audience.

My short 36 hour stay in Albany ended only after two warm meals with Kathe. She drove me all over the town, showing me the bare trees and grey/brown landscape that reminded me that winter had come. With such a short visit, we caught up and got to know each other even further, and I surely feel like she’s yet another blessing to me that I’ve been given because of my illness.

Off I went to Portland, which was by far colder and wetter than Utah or Albany. November 14-16 were cold, rainy, dark and stormy. Oy—how do Northwesterners do it!!? I felt so grateful to be invited by Donate Life Northwest to be keynote speakers for their Annual Fundraiser Breakfast, where I also played Amazing Grace on the bagpipes for the audience of 650! Despite a very early morning, our speech went well, and we crashed afterwards in the hotel before meeting my cousin Britta and her family for a late lunch. After a successful evening screening at the historic Hollywood Theater, with of about 200 people, we took photos outside by the marquee and poster- amidst howling wet wind. Incidentally, the night before, we had dinner with our friends Dolores and Peter C., whose son had a transplant at Stanford in 2000. We have become very dear friends over the years, and were blessed to enter their newly remodeled home (self-remodeled), and reflect on life, spirit and the things that bring us laughter (like our dogs.)

Since Portland, Ana and I have been home, relaxing and recovering. I was ready to be home, and spend time with Andrew and my dog Rupie, who is nearing the end of her life. She needs me. Yet my days were filled with bagpiping practice for my Christmas concerts, emails, housekeeping, and just lying next to Rupie. It feels good to just ‘be’ with her. Ana and I have tried to take her to the beach, to parks, to her favorite places she can enjoy. It’s very hard to see her suffering, and yet, I guess these are the natural events of life. We all get older, we all can get sick, and we all reach a point where there’s no medical intervention. I’m trying to stay in the moment and just focus on my love for her.

I’ll share more later. I’m trying not to post ten page blogs to spare you!
Thanks for all your interest and please enjoy a healthy holiday season.
xo Isa

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