Ana & Isa’s Blog
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Monday, 26 April 2010
Reflections
Posted by Ana
Reflections -
It’s hard to believe April is almost over. I went on a short easy bike ride yesterday on a sunny Sunday, enjoying the beautiful spring flowers and smelling the warmth of the air. We headed to an annual CF benefit concert in Palo Alto where we met friends from Cystic Fibrosis Research Inc. community who put on a “backyard jam” in their own residence to raise money for CF. As always, I am blown away by the passion, commitment and dedication of so many to raise awareness and research dollars for CF. The live music, social atmosphere and the smell of barbeque made for a lovely afternoon.
Just the previous day, we were at the California Transplant Donor Network’s annual donor recognition ceremony in Hayward where over 1000 donor family members from Northern and Central California are honored for giving the gift of life. This annual event always humbles me, reminding me of the enormous grief that lies behind the gift of life. As I look into the faces of the families- brothers, sisters, mothers, fathers, grandparents, and friends- of those who have died, it gives me moments to pause- why do some people survive and others don’t? Why do some parents raise their children and give them all their love and attention, only to lose them in a car accident at the age of 18? Life can be so unfair. There is a painful but beautiful awareness that shines on that ceremony, that out of loss comes life, that out of tragedy comes the gift of remembrance, legacy, renewed life and gratitude, and a binding of humanity because we are all strangers but we are connected and forever grateful. At the donor ceremony, I met a man with CF whose brother died and became a donor. I met a donor family member who he himself received a lung transplant. We are all connected!
Isa and I were honored to be invited to give a 5 minute speech to address the donor families. How can we possibly share all that we have to say in 5 minutes?! I mean , these are DONOR families we are talking to! No words can really capture my awe and gratitude to them. The room was filled with people of all ages and multiple languages. At the end of the ceremony, there is a slide show showing photos of the donors, submitted by their families. The majority of donors were Hispanic; the majority were men in general. Beautiful, young faces full of potential lost in tragedy. It is always a Kleenex moment to watch that.
I was so touched by the presence of so many Latino families, yet so disheartened that there were less than a handful Asian families in the room of 1200. It was very, very evident that the Asian community is underrepresented in the donor pool and that the work we are doing to increase organ donation awareness in the Japanese community is so critical. I realize that culture, religion and social attitudes are not easy to change as they are deeply ingrained in each person, but whatever we can do to spread the message of the gift of life among Asian communities is better than doing nothing.
As Donate Life month comes to a close, I reflect on a busy month for thousands of volunteers all over the country who are dedicated to this cause. From displays in local libraries to lectures to the public, to standing at booths at hospitals and health fairs, this busy month is culminated in the donor recognition ceremony where it all comes full circle for me. I am so fortunate to live in a country that, in general, supports organ donation and helps promote an infrastructure to make it happen. A few weeks ago I volunteered at a Donate Life booth in front of Stanford Hospital cafeteria. Stanford, California Pacific Medical Center and UC San Francisco Medical Center are having a contest during April to see which hospital can sign up the most donors on the California online donor registry, www.donatelifecalifornia.org. Just the fact that the hospital let the donor network have a booth there represents its support of the cause. I can’t imagine a Japanese hospital allowing a booth in front of its cafeteria to sign up donors. I can’t imagine the local library in Japan allowing a display case of organ donation propaganda to be displayed. I hope I am wrong.
It takes a village and we are lucky to live in this one. At Stanford Hospital, we had dozens of hospital staff and visitors crowd around our booth during those few hours, eager to learn about organ donation. Over 50 people signed up on the day I was there alone! Naturally, there were several people who saw our booth and made an unpleasant face and backed away, but that is par for the course, as I recognize organ donation and the meer thought of one’s own death is not for everyone. But the majority of visitors to our booth were positive, interested, and supportive of our presence. Health care providers are awesome people! I always tell people “I hope you are never a donor” because I do not want anyone to die a tragic death. But many people recognize that if something does happen to them , they can leave a legacy by helping others live.
On Thursday, we took our message to the nursing school students at the University of San Francisco school of nursing. We spoke about life with CF and the gift of organ donation (do we ever talk about anything else?!) and had a wonderful response. These students were beautiful young men and women eager to become the nurses that made our lives so much more bearable in the hospital. It is a gift to be a part of the teaching experience for these soon-to-be healthcare professionals.
Soon it will be May, which is designated as Cystic Fibrosis Awareness month. I encourage anyone in San Mateo County who rides the Caltrain or SamTrans buses to look up in the train and bus to see CFRI’s CF awareness posters. They will be in all buses and trains throughout May. We hope that it increases the public’s awareness of what CF is and that anyone can be a carrier of the CF gene without knowing it.
On Thursday, Isa and I are headed to Salt Lake City CF education day for a quick 48 hour trip to speak to families. I am blessed to be well enough to do this, even though the hit on my lungs from last winter’s CMV infection makes me well aware of being on an airplane. I pray my lungs don’t talk to me in the high elevation of Salt Lake City.
We will return on Saturday to attend Great Strides, the CF Foundation’s largest national fundraiser to raise money for CF research. This is a 2-3 mile walk and our event will be in San Francisco at the Presidio. Again, it is an opportunity for the community to come together, to meet, greet, and show our support for the cause of finding a control for CF. (notice I don’t use the word “cure”- you’ll have to read our book to find out why).
I love being part of these causes and feeling the energy, passion and vibrancy of the CF and transplant communities. It fuels me and gives me purpose so that when I face my own health challenges,I can bargain with God and say “ I don’t have time to be sick!”
Thank you for all the volunteers who make Donate Life month and CF Awareness month a successful reality!
Fondly,
ANA STENZEL -
Thursday, 22 April 2010
4/22/10 Happy Earth Day
Posted by Isa
Dear friends,
Thank you so much for reading our blog, for supporting our project, and for caring about CF, lung health and transplantation.
I hope you this entry finds you in good health. It’s Earth Day today, and...
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Monday, 19 April 2010
4/17/10 A Brief Post about Organ Donation Month
Posted by Isa
Dear friends,
I hope this note finds you healthy and enjoying the beautiful sunshine , at least here in California, combined with the wildflowers and green hills. Like my CF friends in Japan have said, we feel...
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Friday, 26 March 2010
3-23-10 Godspeed to Obachan, my remarkable Japanese grandmother
Posted by Isa
Blog 3/17/10
Greetings from Kona, Hawaii. My uncle, his wife Yoko and my grandmother have lived here on the Big Island for over 10 years. I had planned to visit my 93 year old grandmother, (known in...
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Wednesday, 10 March 2010
3/10/10 March Update
Posted by Isa
Dear friends,
It has been a while since Ana or I have posted on our blog, and I am finally back. Life has been “slow” but also busy in its own way. No trips at least, til...
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Thursday, 18 February 2010
Do you believe in Angels?
Posted by Ana
Do you believe in angels? I do. I believe that God sends signals to us all the time and if we are receptive to them, we can read His messages. Well, last Saturday, a week after...