It’s been a while since I’ve blogged. As the film crew has been working around the clock trying to finish “The Power of Two” film, I sit on the sidelines, admitting that I am having a more quiet fall, with less travel and less on my STD list (shit-to-do list). October was the first month since February where I did not travel by plane, and I’m actually enjoying a little bit of down time, focusing more on exercising, Trent, the house….and yes, even some heavy duty couch potatoeing. Of course, knowing me I still find other things to do, like planning our honeymoon, organizing photos from previous trips, and spending time with friends. We’ve started a weekly “transplant boot camp” for interested transplant folks to meet at Stanford track for exercise. It’s great comraderie and a wonderful motivation to exercise with others who have similar muscular challenges being on prednisone.
Two weeks ago, we had a very successful private screening of “The Power of Two” in San Francisco’s Japan town. Over 140 of our friends, community partners and transplant /CF community members joined in this delightful evening of great food (sushi and manju- my favs!), auction items and best of all, the private debut of the work-in-progress of the film. Some guests came from as far as Hawaii and Florida to watch the screening. After an exhausting and ambitious film editing marathon, our producer Marc Smolowitz and his team of editors and associate producers created a moving and well received real movie. It was gratifying, yet daunting, embarrassing and humbling to see myself on the big screen and to somehow have our life be so interesting to so many people all of the sudden. I am so grateful to everyone who attended and who contributed generously to help support the final stages of the film production. It was truly humbling to be a feature character of the film, to be a part of this huge endeavor and to watch as communities and individuals have come together to promote organ donation and CF awareness through the film. Thank you to all of our supporters!
I left the film feeling some survivor guilt, knowing that in the audience were parents of friends who died waiting for new lungs, or people with transplant whose transplant journey has been a lot more challenging than my own. I don’t understand why some are lucky with transplant and others are not. Honestly, I’ve been a bit blue lately as I’m witnessing several of my dear lung transplant friends facing life threatening complications of their transplants, like cancer and rejection. It’s as if I spent the first half of my life watching my CF friends die, and now the second half of my life watching my transplant friends die. It feels so helpless to witness this; all I can do is be a friend, while sitting back and trusting that the doctors are doing their best, even as hope dwindles. And when the docs have nothing more to offer, I am left to have conversations with God- why is life so unfair? I am totally convinced that when transplant goes well, it is the best thing in the world; but, when it doesn’t go well, it can suck. The only consolation I have is the strong friendships we’ve made, and the “we’re in this together” feeling that we share.
How can I not feel bad when our film portrays such a positive side of transplant, almost ideal and “happy go lucky”, yet a portion of lung transplant patients face so many complications and don’t live as well and as long as Isa and me? What is it like for these friends to watch this film? I can only imagine that envy and resentment would naturally creep up.
I had to kick myself the other week when I was stressing about our honeymoon plans to cruise to Central America in December while I have friends on hospice or in ICU. It puts everything in perspective and I feel so privileged that I can put energy into yet another trip, while some people can’t even fathom traveling. I’m convinced that my compulsive living is because of a sense of urgency, the need to do everything I want while I can, because someday (hopefully not for a long time) I will be in the same shoes as my friends.
I’ve expressed my survivor guilt to a few, and they tell me “not to feel bad” as each person has their own story, and it’s not like I have any control over the lives of others anyway. But I just can’t help feel bad- this is the Japanese in me… The other option is to be mad at God , but how can I be?
The only thing I can do is pray- pray for the comfort of my friends who are suffering, whether it be while they wait for new lungs, or while they wait to transition to a new world free of pain and medical crap. I humbly ask you to join me in praying for these amazing people – AM. , AD., MM., MM. and PR. May they have strength and courage like no other.
Thank you for listening to my stream of consciousness in these “short and sweet” ramblings,