What a Whirlwind! (And it all started here) :-)

[Eldonna Edwards]

It's been a while since I've posted here but with good reason. In 2007 I became involved in an award-winning documentary about organ donation titled "Perfect Strangers". (You can view the trailer here: http://vimeo.com/76729574). My non-directed donation occurred in 2010. The film made the US festival circuit in 2013 and I attended several screenings to be available for Q&A's. What I learned from these audiences is that it's really difficult to answer questions about the motivation, the donation process and the blessings of being a donor in a few short sentences. So I took a year off to write and earlier this year published "Lost in Transplantation: Memoir of an Unconventional Organ Donor" in hopes of answering those difficult questions and hopefully inspiring others.

As others have mentioned here, I initially struggled with the idea of "going public" with my donation because I was uncomfortable with the hero label and pedestal propping. Seeing all those people on dialysis year after year, waiting for a kidney that might never come...THOSE are the real heroes. Eventually I realized that people had so little information about living donation and that my discomfort was no excuse to let a huge opportunity to educate and inspire others slip by. So I made a 180 degree turn and now you can't shut me up about it.  In addition to writing the book I now devote a lot of time speaking to groups about conscious kindness and advocating for living (and deceased) donation. I cannot begin to explain what a joy it is to help people understand that making someone else's life easier or better will give them deeper meaning in their lives. Nearly every donor I've met understands the bliss that comes from this greater sense of purpose.

I'm active in several facebook forums for kidney patients and potential donors but LDO was where it all started and I wanted to take a moment today to say thank you to Fr. Pat and all the folks who supported me when I started out on this journey. And what an incredible journey it has been and continues to be! Love to all of you on all your varied paths. <3

Eldonna Edwards
www.eldonnaedwards.com

[Fr Pat]

Dear Eldonna,
      Hi. Someone kindly gave me a DVD of your movie "Perfect Strangers" at the Houston "Transplant Games" and I have enjoyed watching and sharing it. I quite agree with you on the value of giving up some privacy in order to share our stories. Despite all the progress and education about living donation I am often surprised by how LITTLE even rather well-educated people know about it. So it is worth getting the word out. And those who learn more about it but decide not to become living donors are very much more likely to sign up as after-death donors thanks to their greater understanding of the need.
     I have mentioned it before, but another good tool for education about living donation is the book "Flesh of Her Flesh" by Slavenka Drakulic. After having received a kidney donation from a stranger (and being a widely published author of novels and of political studies of East European Communism) she decided to meet her donor and as many other non-directed donors as possible in order to interview them and try to understand their decisions. The book is very useful because it includes the stories of non-directed donors of so many different backgrounds, religions, personalities, etc. Although it has been printed in several European languages it unfortunately only available in English as an e-book, but can be purchased at Amazon.com or other outlets. Organ donation to a stranger may not seem quite so strange if people read about a variety of different donors.
    best wises,
        Fr. Pat

[Waiting2donate]

Ellie!!! My favorite movie star! I didn’t know you were on this site.  Sorry, but this is going to be fan mail. I’m a week post-op as a non-directed donor and was so glad to have found your documentary a couple of months ago. Wish I’d found it a year ago when I started. Actually seeing it unfold validated my expectations and helped others in my life to understand (or maybe not). For some reason, the Q&A was my favorite part. I recommend everyone connected to donation watch it, even the conservatives (joking). Like many others, I’m uncomfortable with the hero label and don’t even like the term altruistic, I use “non-directed” with the few people who know (my co-workers think I’m on vacation). Thought I was going to die of embarrassment when the transplant staff presented me with a book entitled “Hero”, although I certainly appreciated the thought. Thank you for putting aside your discomfort and sharing your experience with so many of us. You’re absolutely right that we get so much when we give. Even without knowing the outcome I’ve gotten so much out of donation that it feels like I’ve done something selfish. I’m torn about possibly meeting the recipient in the future because it feels like it would change the balance of my action. Hope that makes sense, not sure I understand it myself.

I also want to acknowledge your patience in enduring the wait for 4 years. Patience is something we definitely do not have in common. My original plan was start to finish in 3 months and the transplant staff was not always happy to hear from me. It’s impossible for me to imagine being seriously ill and enduring year after year.

Coincidentally, Jan Krawitz lives close to my family in No Cal and I occasionally drive through SLO on the way to visit. I just ordered your book and expect an autograph the next time I come through town!

Thanks again for putting aside your discomfort and allowing us in to a very personal experience. You’re my hero (sorry)!

Also, I second your thanks to the site for giving donors a forum. I don't know anyone with Kidney disease, much less anyone who has donated, so it's nice to have a place to share.

[Eldonna Edwards]

Thank you Fr. Pat for the book suggestion. My partner and I pulled it up on amazon and read the intro. Looks like a really great read so I'll download it. I was in Houston for the games and attended a Q&A after the VIP screening but had to leave before the Monday general screening. It would have been great to meet you but I'm glad you were given a DVD. I completely agree that donation to a stranger needs to become more mainstream than "What??? Who does that???" TO my mind, what you give to one you give to the world. Seems pretty simple but I think some of us are just wired differently.

[Eldonna Edwards]

"Waiting to Donate" I totally get what you mean about feeling selfish. In my talks I refer to this as "enlightened self interest" rather than altruism. ;-) Funny how you have the connection to Jan Krawitz. Where did you see the film? Thanks for purchasing the book. I'm screening Perfect Strangers in Avila Beach on Oct 15 at Sukha Wellness Center and will be signing books afterward if you happen to be driving through.  I also speak at United Church of Christ in SLO on Oct 19th.

Congrats on your recent donation. Hopefully you're starting to feel back to normal. :-)