Sunday, February 27, 2011

my body, my mind... take it all

my body, my mind... take it all
I received some great news on Friday... Somebody actually wants me for my mind instead of my body. Shocking, I know.

Georgetown University researchers in the Laboratory of Social and Affective Neuroscience are seeking adults that have volunteered to donate a kidney, and I am the chosen one (of many).  I have no idea what those smartie-pants people do, but I do know that I volunteered to donate a kidney, so sign me up. I love to have my brain picked. It was such a memorable experience to have my internal goodies poked at, I can only imagine how exciting it will be to have them study my gray matter. Boy, are they in for a disappointment surprise.

I've been told that my participation may involve behavioral observation, brain imaging (MRI scans), and psychological interviews. As long as they're not observing me on a Saturday night in mid-August at a bar in Saratoga, I think they will be satisfied with their subject. Or bored out of their minds.

Anyhow, I'm excited. Very excited. I participated in the initial online testing about 3 weeks ago. They warned the participants that the test would take about 90 minutes and fortunately I was allowed to stop periodically so I could pick it up again if I was interrupted. Thank goodness because you know how Derek is such an attention whore and can't possibly be without my presence for more than 15 minutes... ugh, so needy. The test was divided into several sections, covering everything from image perception to ethics. I love this stuff. I find human behavior to be so intriguing, and am fascinated at the statistics that doctors and scientists are able to collect just by asking questions.

I passed the online test and qualified for more. So much so, that they need me to travel to D.C. to spend a weekend with them. Apparently I have fans all over. They're footin' the bill, so away I will go. The dates have not yet been confirmed, but I'm looking forward to this and I feel good knowing that in some small way, I'm helping the living kidney donor community.

Since my surgery, I have tried my best to keep current with all the news and information in the living donor community. I have set up feeds on my email to alert me with stories, news and medical breakthroughs that continue to grow. This is good thing. It's also a bad thing, at times. Sometimes I think  I read too much. I see tragic stories daily, of patients living with kidney disease that can't find a donor, or the transplant was not successful and their donated kidney was rejected. This is why I didn't hesitate to participate in this study. My presence in the donor community did not end the day I gave my kidney to my recipient, if anything, I feel as though it's stronger. Because I want it to be.

I have also been invited to attend a conference May 2-3,1011, with the National Kidney Registry. Details are still not solid yet, but I know that this opportunity is not to be missed. I will continue to embrace any chance I have to better myself as a mentor for other living donors. As I've mentioned in past posts, this is a huge part of my life and I'm lucky to be there for others that are beginning their journey. With time, patience and education, I know I can provide the proper support to other donors - much like the support that was given to me.

Until next time... this thing called snow - I'm done with it.

Tuesday, February 15, 2011


It's closely approaching the 5 month mark from my date of surgery. Seems like so long ago really, but oddly enough, I think of it every day. It's all good, even the not-so-comfortable memories of the pain, fatigue and a wacky digestive system that took weeks to regulate itself once again. Thanks for the prunes, Mom! The surgery was a priority in my life for many months leading up to the day, and now that the months have passed since then, donating my kidney is still a priority in my life. Sounds weird, I know, but, this experience is a very big part of who I am and nobody can rob me of that. That's what makes it special. It's between me and one other person... my recipient. It's similar to someone that has a career that consumes so much of their life, or a child that reminds you daily of your purpose in life. It's part of who you are, at least that's how I feel. I don't know, maybe it's because I don't have a child (although I was married to one), a spouse, or a career that my life revolves around.

Since this is such a special part of who I am, I feel like it's a bullet item on my 'resume of life'. Ya know, you have your list of achievements, heartaches, challenges and tragedies and somewhere, this fits in. It does in my resume, but I have a problem because I'm finding it difficult to share this with many people that are not already aware of it. I hesitate to bring it up and I'll tell you why. People do not know how to react to this.

I remember being out at a restaurant about 2 weeks prior to my surgery. I was alone and dined at the bar. I had great conversation that evening with a man sitting next to me. Ironically, he happened to bring up the topic of organ donation. So, I went with it. I told him that in 2 weeks, I was going to be donating my kidney. What was up until that point a very stimulating and interesting conversation between two people suddenly turned into a very uncomfortable and awkward moment for me. He freaked out. Really. I had barely gotten the words out of my mouth and the guy did a 360 on me and told me that we couldn't talk about it because it 'grossed him out'. Those were his exact words.

"You're doing what with your kidney?" Oh, the horror!!

So, I poured my drink on his lap and made a quick exit. Kidding. That's what I wanted to do. What I really wanted to do was ask him, "Why?" I mean, I'm not going to bring up a topic like cock-fighting with a complete stranger if I know I'm going to be turned off by the elements in the conversation. It was an unexpected and uncomfortable moment for me, but it was also just one of many that would come in the future.

Of course most people that I meet through friends and family who become aware of my experience, are curious and typically very gracious with their kind words. This is all nice and I enjoy chatting with them and answering their questions about "Why did you do this?" and "Weren't you afraid?", etc. But there are also those that just give you this blank stare. You can just read what they're thinking by the freaky expression on their face. I've had some that don't even blink an eye and quickly change the topic to something so banal and generic that it screams of "Oh my God I don't know what to say so I'm not going to say anything at all." Ok, fine. Seriously, it's ok, but as someone that has lived through such a wonderful and fulfilling experience, it's a slap in the face to ignore it. I move on and I truly won't hold it personally against them, but it does make me wonder... What are they fearing in this?

So, my brilliant mind is telling me that what they are fearing is what they don't know. I don't want to sound all Dr. Phil here, but c'mon, wouldn't you all agree? Back me up on this one, will ya? It's very difficult for some (I've been told by dear Mom) to understand why someone would want to electively do what I did. Hey, I get it, I do. Maybe it's just my ever-inquisitive mind, but, if someone told me something that I knew nothing about, I would go out of my way to get as much information from them as I could. Isn't that how we learn and grow? I realize that we're not talking about something as common as car repair, but it's got to be even moderately interesting to know something about organ donation, right? You don't think I'm sounding biased, do you?

Sure, maybe I'm a teensy-weensy biased, but this is precisely how I made the decision to become a donor. I was having a conversation with a co-worker. He brings it up and I ask away. I was so damn curious that I went straight home after work that evening and spent hours researching it online. How are we as living donors expected to raise awareness and spread the word about living kidney donation if we can't find willing listeners? I always said that I would listen to anyone discuss anything as long as they were educated and passionate about their topic. You're not going to find someone more passionate about it, and I'm continually educating myself daily so that I can fill in the blanks to curious listeners.

I would be interested to know, from other donors reading this, what kinds of reactions they have received when the topic is brought up with strangers. Maybe it's just me? I would also like to know how other donors go about bringing this up in conversation. I can assure you that it's not something I feel is appropriate for every situation, but once you get involved in conversation with someone, do you sometimes feel it's something better left unsaid? Blogging about my journey has been my outlet, for the most part. I could never imagine trying to share all the information I've shared here with people I meet on a daily basis. I guess I just want to be able to continue to comfortably do so, but face to face. I'm living proof that people don't have to feat this opportunity. As I've mentioned here in the past, I know that this is not something for everyone, but please embrace the opportunity to learn more about it. Donating the gift of life to a stranger should never be a topic that is dismissed by others. It's my pleasure to try my hardest to make it a topic that we can all embrace.

Until next time... I miss my strappy heels and my summer dresses... bring on summer!