August check-in 8-21-08
Dear Friends,
I can’t believe it has been 4 weeks since I’ve posted! Thanks for being persistent to follow up and see what is going on. I also appreciate all the kind comments and warm wishes for my recovery. Thank you for your prayers and support.
I left the hospital in late July, feeling exhausted and the not-so-fun side effects of high doses of steroids. Worst this time was severe arthritic pain everywhere. The day after I was discharged, I laid in bed, staring at the ceiling feeling so weak I could hardly move, and I wondered if I could ever compete in the Transplant Games again. That is life with transplant: going from extremes of strength/energy to extremes of weakness/fatigue! Thank God, with patience and rest, and a lot of perseverence to keep those muscles moving, I am feeling much stronger now. I still have hip pain so running is out of the question and I wonder how I managed the 800m dash!
Once I got the okay from my docs that I wasn’t contagious, I went from the hospital to a full weekend of CFRI events. First I served as Chair of the CFRI Educational(www.cfri.org) Conference Aug 1-3. The best part this year was hosting Tiffany Christensen, a phenomenally gifted patient advocate who has become a dear friend of mine. She gave a powerful performance about self-acceptance at the conference (DVDs available from CFRI!). The entire weekend was filled with inspirational speakers who discussed a diverse range of topics such as CF related diabetes, compliance, updates on research, alternative medicine and CF, among many other great speakers. There was so much hope for the future for those living with CF. I was in charge of the new attendee orientation, panel of parents who have CF, CF trivia, support groups and the memorial. Andrew was the humorous emcee again this year, and amazes me with his dedication. Ana was in charge of selling rose necklaces and selling our book. This is about my 16th year at a CFRI Conference, and when I go it feels like a big family reunion. I love getting updates about peoples’ kids and my friends’ lives. With this crowd, we only have one thing in common- cystic fibrosis- yet there is an immediate bond and an unusual amount of caring and compassion. At the end of the conference, we got many excellent reviews that this was the best conference ever, so I felt very satisfied.
I went straight to the CF Teen and Young Adult Retreat, another magical few days of closeness with old and new friends. I feel so lucky to have this disease! Who else can ‘escape’ from routine life to hang out with their friends, talk about the deepest hopes, fears and concerns, learn about how to take care of one’s health, eat as much food as one desires, and do fun activities like arts and crafts and sports!? I feel like I learn something every year about human nature. The retreat is truly a social experiment with 30 people of all different backgrounds and intellectual and emotional abilities who come together for one week because they have one thing in common: cystic fibrosis. I especially love witnessing the younger people evolve and grow with each passing year. As rap group facilitator, it is amazing to see how people support each other with comments and body language. With effective group exercises fostering trust and openness in sharing, a culture of compassion is born in these support groups. Many of these people have been going to CF camp and now retreat for more than a decade, so I believe these rap groups have fostered us to have tremendous communication skills that we wouldn’t have learned from just our families. There is an emotional transparency and intimacy among people with CF and their supporters that truly feels like this environment occurs no where else in the world. There is respeect, love, care, understanding, true listening, and truthfully, there is also self-absorption, distrust, judgment, resentment, anger– the full range of human emotions. One concrete example of the specialness of the retreat community was the day we were supposed to go swimming. The group felt it was too cold so on a whim we decided to go hiking. We had an old map to a local park. However, we had two people in wheelchairs so we made a change and decided to go to a park with pavement. Tom volunteered his truck to carry the chairs and we headed to the park. Halfway up the path the gate was locked, so the able-bodied people lifted the chairs over the gate! We were all together and made it all the way up the steep hill, with some of us pushing the wheelchair up in the heat and sun. It was such a joy to all stick together.
Since the CF retreat, I’ve spent my days recovering and reflecting (and catching up with emails). My life seems to be full of high action and exhaustion/rest. I also went to a Spanish CF education day in Oakland. I have been preparing to travel to Louisville tomorrow for another CF education day. Then I head to Denver with Andrew to enjoy the Democratic activities and finally hear Obama on Thursday, August 27. My dad is coming on Friday, August 28 so we can go backpacking in Rocky Mountain National Park! This will be another dream come true!
I will post again in a few weeks with more updates. I am writing in haste and wish I could be more reflective and insightful but for now this will have to do.
I hope you are all well and you can enjoy a close community bond of your own- whether it is CF, transplant, church, or another group. Have a beautiful August!
Love Isa