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Wednesday, August 22, 2012

Another Choice


I've been a little slow in posting here for a few reasons. The first is that this summer has been very busy! I was involved with the CanadianTransplant Games (more to come on that in possible future posts). I also took a trip to Ontario to see the family and some friends. For many of them, it was their first time seeing me since my donation in June of 2011. While they all knew I was fine, I think it helps some people to physically see you to believe it. (Yes, a few did want to see the scars!).

The other reason I’ve stayed away from the blog I guess is what you could call a crisis of faith (of sorts) about what role promoting organ donation should have in my life. I’ve done a fair bit of thinking about it but still haven’t come to a place where I am totally comfortable.

This is the situation. There are a few people in my universe who would like me to stop talking about organ donation (and for that matter, marching for kidneys, encouraging blood donation etc). They don’t understand why I care so deeply about it, or why I want to spend my time talking about it, sharing success stories and educating people about its many facets. Sure I’ve explained it but the message isn’t being received. Now some people would say to just ignore them, who cares what they think and so forth. But it is hard when they are close to you and you value their opinion on things in general. It’s not that they don’t support organ donation – they’d donate on death if that was an option - they just don’t think I should be actively promoting it. And they are vocal about it, frequently telling me to stop and on occasion mocking it by calling me things like “organ girl” or implying  that’s the only thing I ever talk about.

I‘ve tried to get to the root of “why” they feel this way. There are several  different reasons I was given although two common ones seemed to stand out. The first is that they think it is weird to talk about things associated with body parts/death/illness. The second is reason is being as I/my family/friends have never needed an organ, I’m creeping on a cause that I have no business being involved in.

It’s tough. I’m not sure what to do to be honest. Yes, when you talk about organ donation, you do talk about body parts/death/illness. But you also get to meet and learn from some pretty interesting, inspiring people. That’s what I like about it. I’ve learned so much about science and the medical world – which is very cool to me. I love reading medical journals and websites and then taking that info and being able to make it relevant to the everyday conversation. On the flipside, I’ve also had a chance to learn so much about the human spirit and the strength people can find in themselves to carry on. That intrigues me as well and really puts life in perspective.

Yes, no one in my family has ever needed an organ – it’s true. Does that make me some kind of fraud, speaking about things I shouldn’t have an interest in? Some would argue my being a kidney donor makes me part of the transplant community. I think for others though, the fact I donated to a complete stranger should have been enough (and was weird enough all on its own). My involvement in the transplant world should have ended when I left the hospital. All the stuff that has come after it (the blogging, social media promotion, media stories, volunteering) is overdoing it, taking things too far. Is it?

Here is what I do know. In September of 2010, I suddenly had a strong feeling of something big being around the corner for me, something that would deeply impact my life and “make everything make sense” if you will. As flakey (and not me) as that sounds, the “kidney thing” was the start of that. The idea came to me (to look into living donation) and it totally made sense. I started writing about it, which again, totally made sense to me. I felt like I had found a purpose, something I could do to help other people. And it has continued. The funny part is, I’ve never been that person who really wanted to help other people. Not that I was a Scroogey Grinch;  I’d just never really volunteered for anything, I hadn’t really been involved with any kind of fundraising and I didn’t really have any “causes” I actively cared about. Donating a kidney changed everything for me. Two of my best  friends have both independently said that I seem to have found my calling. I’d never use those words but there is some truth to that. I love being involved in the transplant  and kidney communities, talking about it and sharing stories with people to raise awareness. Learning about the medical processes intrigues me. I get excited whenever I sit down to write a blog post or attend an event. Despite being shy in new social settings, I have loved meeting people involved in the transplant world and hearing their stories, asking them things I’ve wondered about transplant patients. I’ve met patient and donor families as well as some pretty amazing medical staff and I’ve learned a lot from all of them.

One of the people I met during the Canadian Transplant Games had an interesting comment about my involvement that has stuck with me. She said that in my situation, I probably have some advantages over people in the transplant community when it comes to raising awareness. She said that because I am not sick myself, didn’t receive an organ, nor am I worried about saving  a sick family member, people outside the transplant community might listen to me first.  She said “They might perceive you to be more unbiased - someone they can better relate to. Just like the kidney donation, you don’t have a specific person or reason you are doing it for. You aren’t getting anything out of it.”

Other than of course, the fact that I like to help and I have a passion for it. Despite that though, I've found myself lately quite hesitant to share organ donation news articles via Twitter or Facebook or even talk much in person about people or things I experienced at the transplant games. I know I’ve definitely had a case of writer’s block too despite having a lot of topics and stories to write about. I don’t want to stop what I’ve been doing the last year and a half (because I love it and think its important) but at the same time I don’t want to alienate people who are close to me either (because I love them and think they are important). I am hoping to find some kind of middle ground but so far, it hasn't happened.

4 comments:

  1. Do not let people's lack of understanding get in the way of following your passion. I was told by my BFF of 10 years about a year after R's heart transplant that I needed to shut up and get over it. She couldn't understand that it would be forever part of my life. Just as your sacrifice and physical scars have made transplant forever part of yours. If they are true friends and supporters, they will accept that you have found your calling and not put you in the position of alienating them. When you go through a life changing event, you can choose to ignore it or you can choose to embrace it and let it change you and how you look at life for the better. If you embrace it, you hope that those around you can do the same. But if they can't, maybe they were never on the same page as you to begin with.

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    1. Thanks for sharing your experience about your friend - it was helpful!

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  2. First of all - you don't just talk about organ donation! You took action and saved a life by being a living donor. That's a REALLY BIG DEAL in my view. Do we have to own a pet before we fight against animal cruelty? Do we have to see a family member die of starvation before we donate to a food bank? Does a friend have to experience a tsunami before we support sending aid to another country?
    I am not a kidney patient, but my daughter is. I hope that somewhere out there is a person like you who will be willing to take a risk to undergo surgery, to walk through pain and recovery, with no fanfare or personal gain. I see the difference in makes in the lives of recipients. And I see the 114,000 Americans who are still waiting for organ transplants. And over 3,000 in Canada. Jeeez, the Kardashians get more attention than the 17 people who die everyday, because the transplant didn't come in time.
    Thank you for what you have done, and what you continue to do. It's important, and if people you know don't appreciate that, well, then i pray they never need a transplant.
    Best wishes to you! Keep on marching!
    Karol
    https://www.facebook.com/pages/Wanted-Kidney-donor/246787398756603

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  3. Thanks Karol. Excellent points and thanks for your support!

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