Dear friends,

Thanks for reading this blog. Time has flown by and October is already half over. So much has happened in the last weeks and I just haven’t made the time to write. I hope you all have found yourselves breathing deeply and making meaning with your time.

My last post shared my ending of September with my trip to West Virginia. One week later, I welcomed October by heading to Jacksonville, Florida to speak for the Jacksonville Adult CF Center Education Day. My dear friend Ronni, the Center Nurse Coordinator, hosted me so generously. It was warm, sunny, and a trip I was looking forward to for a very long time. Ronni has had 2 brothers with CF, and her family’s blood samples helped to identify the CF gene in 1989. She was so impacted by her brothers’ struggles that she became a CF nurse! She really truly ‘gets it’, and gives to her CF patients and families in more ways than any care provider I’ve ever met. Ronni single-handedly organized this ambitious CF Education Day with dozens of families and several dozen health care providers.

The day prior to the CF Education day, Ronni brought me to her office, the Pulmonary and Care Associates of Jacksonville, where I spoke briefly for her staff. Then we head to Mayo Clinic where I gave a lecture to the Lung Transplant medical team and other staff, rather impromptu.  I met another young girl who had just received a lung transplant for CF. We sat and talked about what her goals were- finishing school, having a career, travelling- things I once dreamed of. Together we went to the pulmonary rehabilitation clinic where this young woman was going to exercise to get her lungs open and body stronger. I peered at all the people on oxygen, huffing and puffing just moving in slow-motion. Trying so hard to walk on the treadmill, to lift weights, to breathe. And their eyes. Full of desperation, hope, fear. Most were actively listed for transplant. But they have been waiting for 12, 18 months. The waits in Jacksonville are so long… compared to Northern California where NO ONE waits 18 months for lungs anymore. I felt so lucky, to live where I live. And I felt sad for the inequity of access to organs, even in a wealthycommunity like Jacksonville.

Like a dream, Ronni and I spent the afternoon enjoying  a late lunch and just chatting, giggling like young girls, learning about each other and loving each other as if we have known each other for a very long time. Ronni reminds me that CF cultivates the best in people, and that I’m really damn lucky that this disease has introduced me to genuinely good, high quality human beings.

The following day was full and long with the CF education day. I was blessed to have a grant to support my travels, and to give books for all families with CF. I gave my newer talk addressed to adults, called “Finding the Power to Fight CF.”  People seemed to listen intently despite my long-winded ramblings. Most of the CF patients were young men, and I was nervous if what I had to say could resonate. Afterwards, I was pleased that a very quiet withdrawn adult male with CF told Ronni, “She was right on.” I was glad I could connect to him.

I was very moved by the dozens of health care providers who dedicate themselves to fully to help people with CF live good lives. The pharmaceutical and biomedical device companies offer the most compassionate and caring sales reps who travel and work long hours for their business but mostly to help people. Again, I’m reminded of the gift it is to witness this component of the business world that really wants to do good despite the profits their companies make.

I left Jacksonville earlier than Ronni and I wanted; because visiting Amelia Island was my great temptation, along with taking a good swim with Ronni, who also loves swimming and lives in a luxurious condo complex. Instead, I awoke very early, and flew to Dallas, on the way home to SFO. I stopped to see my friend Judy W., whose daughter Hayley was my friend at Stanford and who also had CF. I’ve known Judy longer than I’ve known Hayley, since her passing 12 years ago. Judy has shared stories about Hayley, who had two transplants but it wasn’t meant to be, that has kept her alive inside and I love spending time with her. Together we were possessed women on a mission to shop til we dropped. We went to the Dallas Gem and Jewelry Show and I spent away most of my speaking honorarium on jewelry! Woops. Christmas presents, I swear! Judy is an artist and appreciates fine things. We shopped til we were dizzy and our feet were numb and finally Judy said, “You’ve got to start making decisions.” which is a nice way of saying what a terrible shopper I was. We also went to the famous Sam Moons’- the best and cheapest jewelry story in the country. This was Hayley’s favorite place to shop. Suddenly I was possessed again and became a girly girl, trying to look more mature with nicer looking but damn cheap jewelry. Suddenly my values to reduce environmental impact by not buying cheap shit that is made with and by toxins in the environment went out the window. Those earrings were lovely and I wanted to wear them! 

I flew home exhausted but so grateful. I did no site-seeing, I wasn’t wth Ana, I did no exercise, but my personal relationships with two remarkable women were solidified. I felt inspired by these women who are older than me but have much to teach me, and only me, and I relished the attention all by myself.

Fortunately the day after I came home from my travels, I went to Transplant Clinic and was given a clean bill of health. I don’t know why I’m so lucky, living such a normal free life, and just amazed, everyday, amazed.

Now, the last weeks have been calmer but somehow busy. I struggle to motivate to exercise. I keep myself ‘too busy’ but actually there’s a team of nearly a dozen people working non-stop on our final film production. I have helped with projects here and there, but have relinquished control and trust Director Marc Smolowitz and the film editors to create a cohesive powerful story. I’ve kept myself busy with CF volunteering, and that has filled my days nicely.

Yesterday was our work-in-progress screening for our film which is 80% finished. I’ll let Ana blog about that.

I wish you a wonderful October. May you get your flu-shot and stay healthy this season.

Thank you for your interest in our story. Hugs, Isa

Related posts:

• AUM: October update and more belated DC screening stories… 10-16-11Dear Readers: Thank you again for reading this blog. It’s almost time to embark on my busiest month yet—so I...