8/27/09 End of summer Recap
August 28th, 2009Dear Friends,
I really appreciate after our months of absence. Yes, it has been a busy summer, but last year was busier, and we still wrote! Honestly, as a twin, I have to confess. Ana said I wrote to much, so it was her turn. So she said she wanted to write about our trip to North Carolina in early June… so I waited… and waited… and waited… But the poor thing is just too busy to write.
Now, as September is upon us, I realize I have to write after 3 months. What a summer it has been. Thankfully, we’ve both been healthy in the lung region, which is all we can ask. Ana continues to endure serious pancreatic problems and tries endless new tactics to help her absorb her food. Lots of flushing going on here… I’m well, but have torn a tendon in my left food (in February) and finally got it checked, and am now wearing a boot and am on crutches. After snowshoeing in Colorado, hiking in Santa Fe, surfing in Santa Cruz, walking around and jogging here and there, handgliding in Outer Banks, riding 30 miles at the Bike for Breath in July, I finally decided the pain is just getting worse. I felt silly going to the doctor for a little foot pain. It’s not life threatening, after all.
Well, I guess since late May, the fastest and easiest thing to do it offer a recap of our last 3 months.
1) In early June Ana and I went to Raleigh North Carolina, to speak at Duke. We then joined our dear friend Tiffany Christensen (of www.sickgirlspeaks.com) and had a girlfriends’ getaway to the Outer Banks. We pranced in the sea, we ran off sandy cliffs with handglides, got sunburned, and we gabbed and ate great seafood. God, it’s good to be alive long enough to find a soulmate.
2) I went to Los Angeles for a physician talk. I combined the event with driving down with Andrew, surfing in Newport Beach with CF Surf Camp (www.maoliola.org). I went to the Donate Life Hollywood Donate Life Film Festival, and saw great clips on upcoming TV series documentaries about organ donation. I even shed tears (I have thick skin) with the reality and truth of the acting of the donor experiences on screen. You have to check out CBS’s THREE RIVERS, starting Oct 4 2009, a series dedicated to the drama of transplantation. To top off my CF talk,I met my long lost CF friend Jessica M. from my childhood days at Kaiser. She hasn’t changed a bit- same laugh, same expressions. She has been holding off a transplant and I truly admire her determination. She is beautiful and the only one who truly understands the challenges of growing up with CF in a nonCF Center.
3) In late June I gave a talk at the US Women’s EXPO, which was my book career’s all-time disappointment. I spent 40+ hours preparing for what I thought were two pretty good inspirational talks on “The Reluctant Student: Wisdom Illness Teaches” and “The Heroine’s Journey: Lessons Learned from Illness” to a tiny audience of CFRI staff. It was the most poorly organized, poorly managed, low quality event I’ve ever seen. I don’t care if I’m making this public. Plus I gave up my 11 year annivesary weekend for it… no grudges. A great lesson in needing to say no.
4) Andrew and I managed to paint the inside of our home and add/change our windows. So the home is better for working conditions. No more dungeon feel in the office. How privileged. The other outcome was I caught aspergillus from the construction and had to start a new anti-fungal.
5) I biked 30 miles with my friends for Team Second Wind on Bay Area’s Bike for Breath sponsored by Breathe California. It was a gorgeous ride through our hills and baylands. The ride for me was bittersweet. The key co-rider and team chair, Marilyn, lie on a ventilator for 4 weeks with end-stage rejection, after 8 years of transplantation. I missed her and felt fear for her, and selfishly fear for me, for Ana, for Lara, Tom, Pat and all my other close friends with transplant. Marilyn was such a cheerleader and mentor for me, and her end had come. Surely, two weeks later, our lung transplant peers went to her bedside to say goodbye before they withdrew support. I don’t know if she could hear us, all wired up and covered in tubes, but the nurse said she could hear us. All she did was mouth ‘free’ ’free’ ’free’. Oh God, let her be free. I still feel numb over losing her.
6) Mid July, I hosted a 16 year old son of a friend on mine in Colorado. We toured around, and delivered him to Stanford soccer camp. For a moment I had my maternal urges fulfilled, as I carried his bags to the front door and asked, “Are you sure you don’t need a towel? Do you need anything? Call me if you do!” After his camp, we went to Santa Cruz to meet the soccer coach, and then went on wild rides at the boardwalk. It was awesome to scream my head off upside down on a twisty ride dozens of feet above the ground. We spun on twisty rides until we were both nauseated. I felt young again. Then my cousin joined with her 3 and 5 year old girls, and we went to the beach and just enjoyed the presence of these young children. I was awoken one morning with a 3 year old at my bedside saying, “Isa, ya know what? I have something to tell you.” She crawled into bed and we just cuddled and talked about lord knows what. It was precious. Most parents have this moment often; to me it was another miraculous gift of being alive.
7) Late July was spent busy busy busy preparing for CFRI Conference and Retreat. I chaired it and helped with the speakers, orientation, memorial service, support groups and other details. I led a bereavement group and loved it. I feel nicely useful there. I’m with “my own kind” and totally feel confident, skilled, knowledgeable, unique, and I feel a sense of ownership of this event. I don’t have the chance to feel this way in any other area of my life. At retreat, I co-lead some support groups, which are always difficult. You have people with very mild disease, those with severe disease, those in between with other losses (family members, jobs, etc), parents, health care providers and you have people who just lost their life partner to CF. It is such a contrast, and difficult to please everyone. I learned a lot about myself just by being with so many different people. I need to relax. To laugh more. Even if I feel like I need to be in charge. Anyway, I left the 10 days exhausted.
Ana and I went to Kansas City, Missouri in mid-August for a CF education day. Mercy Children’s Hospital was gorgeous. The pharma reps were so friendly and generous. We thought we didn’t know anyone there, but we shared three meals with dear friends! Great to be near Paul F., our publisher and friends, and new friends too. We had BBQ 3 times and Ana’s GI actually survived!
Okay, the last few months have been especially busy for the BIG NEWs…
A wonderful documentary film producer, Marc Smolowitz (Academy Award nominated for ‘Tremblng Under God’ and ‘Weather Underground’) has taken an extreme interest in our story, and together with my husband, has jumped on board to create a film about our trip to Japan coming up in 5 weeks. The film aims to raise awareness of CF and lung transplant internationally, and is inspired by our book. I am a bit hesitant to receive more attention, and be on the spotlight, but if this can help others, then I’m all for it.
We’ve been busy preparing for our one month trip to Japan in October. We’ll be speaking in 10 cities, and have about 20 speeches in 24 days! Maybe I’m a bit ambitious, but I’m writing speeches, having them translated and trying to memorize/familiarize myself with the Japanese vocabulary. I normally speak like a first grader. This is all very challenging with a Prograf brain! Ana and I are so indebted to a handful of passionate organ donation supporters in Japan, including our publisher who have organized this speaking tour. It is a very controversial topic- akin to abortion in America. There are beliefs that mind, spirit and body are not separate like in Western thought. There are beliefs that the body should remain whole for reincarnation. There is no sense of helping others, unconditionally. Gifts are given for reciprocity instead. There is a sense that death is a process not an event, so taking organs out of someone interrupts that process. Overall, there seems to be distrust that brain death can be accurately diagnosed by physicians. All the reading I’m doing is fascinating and very educational. Sadly, there are extremists in every culture who are strongly opposed to transplantation, using words like ‘living cadaver,’ ’unnatural’, ’selfish’, and ‘thieves’ to describe organ recipients. One mother of a child who received a transplant in the US and died, in her grief-stricken state, came home to receive death threats from transplant opponents. How sad. I am being tested to be ‘culturally tolerant’. Overall, it seems there is underlying resistant to the ‘West’ telling the ‘East’ what to do. So that is not our intention. We will simply go and tell our story, tell our donor families’ stories, and share our emotions and thoughts about our personal experience.
We will go to the Japan Transplant Games (Oct 10-12) in Fukuoka. We will have a CF benefit concert in Sendai to raise funds for a committee to advocate for permission to import CF drugs for the 40 or so CF families who are desperately ill in Japan. We will be visiting Astellas, the makers of Prograf! We will be meeting our old doctor from 1994… in Okinawa! We will have many wonderful chances to meet and greet people. I am so excited!
But we are nervous as hell, too, because we HAVE TO STAY healthy. I pray for some control, as we enter swine flu territory.
Anyway, I have given you the recap of what’s going on. Stay tuned in the next two weeks, as our website and blog will be totally revamped thanks to the “THE POWER OF TWO” Project spearheaded by Marc Smolowitz and Andrew Byrnes.
Check out this youtube video for a preview of what’s to come:
http://www.youtube.com/watch?v=I1Ki02Xc5bU
Overall, I remain awed that just by breathing, so many opportunities come up. Such a combination of grace and love have allowed these things to transpire.
Still, though in this extreme busy-ness, I miss my quieter moments, being in the moment rather than planning and planning for the future. I have been insulated from the real world for so long. Now I’m deep in it, full swing. It’s great but I miss something.
Anyway, thanks for reading my ramblings. They really are ramblings. No time to edit… that will have to come in the future.
Thank you for your precious friendship, especially P.R. I hope you all have had a great summer, filled with health and opportunity for connection and growth. Hugs to you all,
Isa