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.

reactions

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!

hello, julia... how's my kidney?

After pondering for several days and memorizing my internal script, I decided to call my recipient on Christmas Eve 2010. I felt this would be the best time to reach out to her. Three months had passed, we were both most likely feeling pretty good, and it was Christmas and I get a little melancholy at that time of the year. She included a phone number in her 'reach-out' letter to me after her transplant, and my mentor (Cara), suggested that she wouldn't have included it if she wouldn't welcome a call from me. I thought everything through, including the exact time of day that I felt would be the most convenient for her to receive a call from her donor. The last thing I wanted was for her to be in the middle of wrapping gifts, boozin' it up with eggnogg, entertaining friends and family, or at a church service. I wanted it to be just right. I wanted my palms to stop sweating and my voice to stop shaking.

Julia's beautiful letter written to me. I just had to frame it.

Making that exciting phone call after a first date never came close to the anxiety I felt before dialing. I had gone over, again and again, what I was going to say. I coached myself to not talk too long, not too short, don't be shy but don't be too animated, don't drop the "f-bomb", etc. Was it appropriate to ask her about her medical condition that led her to the transplant list? Was it ok for me to ask for visitation rights? Was it too intrusive to inquire about her family, lifestyle, recovery, etc. So, I said, "Hello, Julia... how's my kidney?" Nothing like puttin' myself out there, eh? I mean, what could she say, "Who is this?" Who else would it be?

We've all had those moments in life where we finally get to speak to someone that we have seen in photos and anticipated how they might sound, and how we can feel their personality come through the phone. I was dead on, when I heard her voice - kind, articulate, very feminine, compassionate, grateful and enthusiastic. And I'm sure she thought I sounded like a truck stop waitress that inhaled 2 packs of Kools a day. I was pleasantly surprised as to how comfortable our conversation flowed. I had a list of questions, but knew that I would edit them as the conversation progressed. It was like we were old friends making that 'catch up' phone call on the holiday after not speaking for a year. We gabbed like I used to gab when I was 18, spending hours on the phone with my BFF. My heart was filled with so much love when I talked to her. There are very few people in my life that I feel really do listen when I speak and I could tell that she listened with her heart. Aw, a warm and fuzzy moment.

I did ask her, with her permission, to share with me her medical condition that would eventually lead me to be a part of her life. When Julia got married, she and her husband decided to have a child immediately. During her ultrasound, the doctor found that she only had one kidney. It's rare, but it does happen, to about 1 in 750 people. As the months passed, she began to get sick, and her kidney was failing. They had to induce labor very early in her pregnancy, at about 6 months. The baby was fine, but Julia was not. She went into a coma and suffered a stroke. She recovered but the condition of her kidney worsened, and was not going to get any better. The doctors told her that when her kidney was diminished to functioning at only 13%, she could be put on the transplant list. She was able to run dialysis in the evenings, which allowed her to continue to work, but her lifestyle suffered physical limitations.

Ding, ding, ding.... enter, me! :-)  So then I yank my kidney out, toss it in a cooler and ship it to her FedEx so she can borrow it for a while. Julia's doctor gave her permission to go back to work on January 10th. She said she feels fantastic, and that my kidney is doing a fine job. Phew. The thought did cross my mind before I called her that my kidney may not be fairing as well as she and I anticipated. Then what do I do? Send her a Starbucks gift card and a letter of apology?

I'm not exactly one to get too excited about Christmas, but I can honestly say that this phone call was the best gift anyone could have given me. I can't think of a better recipient that I have been blessed with to receive my kidney. I know that there are altruistic donors out there that never have contact with their recipients, and I understand that sometimes it's the wish of the donor and sometimes the wish of the recipient. Not knowing my recipient after the surgery never would have altered my decision to become a non-directed donor, but I feel so lucky to have such a special connection now to someone that will forever be a part of my life.

Until next time... I'm counting the days til Spring!!

new year. new you.

I made plans for New Year's Eve - something I haven't done in about four years. I was never really one to do much for this annual night of celebration. It's typically very cold here in Albany and I would much prefer to stay in with a good flick, some yummy take-out and a bottle of bubby I can hog to myself. This year I decided to do something very different.

About a month ago, I had this spontaneous idea to fly to Chicago to meet two very special ladies... my donor mentors. I couldn't think of a better way to ring in the new year, than to celebrate it with two women that have made such an impact in my life. Both of these women reside in Chicago and it just seemed so perfect for me to take advantage of their proximity to one another. I called Cara Yesawich and asked her what she thought. Kinda weird calling someone you've never met and basically inviting yourself to stay with them for a few days to celebrate New Year's Eve. Just as I expected, she was more than happy to have me and I immediately contacted my other mentor, Robyn Wheatley, to let her know of my plans, hoping she would be just as receptive. She was.  I bought my tickets the next day and since then, it was almost all I could think about.

The opportunity to meet these women was something I never really thought would ever happen. I decided that I need to begin making these important moments in my life start happening.  I have a habit of saying "I'm gonna do this, I'm gonna do that..." and I never do any of it. It's all well thought out, but it never really happens. Shame on me. Life is too short and I have decided that when something means that much to me, I need to do everything possible to bring it to fruition. I was scheduled to depart Albany on Thursday afternoon, and then return on Sunday afternoon. A nice long weekend with two very beautiful women and an opportunity to tear up the Windy City into 2011, together - the three' kidney sisters.'

My trip never happened. Cara called several days ago to tell me that she was needed to care for a dear friend who had become ill. I could hear it in her voice how hesitant she was to tell me, for fear of disappointing me and ruining our New Year's Eve plans. She was right, I was disappointed. I was disappointed that I would not be able to see her and Robyn. But, I was relieved and not all that surprised that she didn't hesitate to come to the need of her friend. Cara is one of the most selfless people I know. Of course I would understand and quite honestly, I wouldn't have it any other way.  She needs to be with her friend, and canceling my flight took all of 3 minutes. No big deal. I will reschedule for a trip in Spring and explore the city with them when we can wear our flip-flops instead of our snowsuits.

Friday afternoon I decided I would spend my New Year's attending a performance by Savion Glover performing locally here at  The Egg . Three years ago I had tickets to see him and became violently ill at a pre-performance dinner with a friend and had to eat the tickets. I should have eaten the tickets, literally, then I wouldn't have barfed all over the place. So, when I saw he was going to be here on the 31st, I jumped at this opportunity to finally see him. What a phenomenal show! I find his talent fascinating to watch and the energy he exudes is amazing. Anyhow, I ended up having a wonderful evening, despite not being able to be with my friends.

I share this story with you because I think it's important to remind ourselves sometimes that life is full of disappointments. We can't always have things the way we want them, or when we want them, or even with whom we want them to be with. Sometimes we just get dealt the crappy hand. I decided to take advantage of my free night and spend it doing something that I knew would make me smile. And it did!

2011 is here now, and this new year once again brings some new opportunities to all of us.  Take it one day at a time, and never forget that there is no dress rehearsal in life. I'm going to try my best to make some pretty damn good lemonade with the lemons life hands me.

2011

New challenges.

New beginnings.

New goals.

New heartaches.

New love.

New laughter. 

New you.

• Have no regrets. The tragedy and triumph is what 

   makes us who we are.

• Read one news item a day that you have no interest in. 

   You'll learn something new.

• Be playful. It will give you a renewed sense of energy.

• Maintain balance, but never give up your indulgences. 

   Practice everything in moderation.

• Surround yourself with positive, open-minded people.

• Laugh. Laugh hard and loud.

• You can't take care of anyone else, unless you first 

   take care of yourself.

• Ignore your telephone, your cable and your email one day a month.

• Money will not buy happiness. 

   Some of the best memories in life will not cost you a dime.

• 'Please' and 'thank you' will go a long way... a very long way.

• We all have shortcomings. Pick one and commit to self-improvement.

• Work hard but play harder, and don't forget to rest.

• Brush your teeth three times a day... and smile.

• Start your day with a good stretch, a glass of water and 

   some humorous talk radio.

• Challenge and move your body, every day.

• Want less, accept more, and give the most.

• Maintaining your identity is the key to happiness. 

   Don't ever let anyone rob you of that.

• Celebrate without reasons.

• Pray. To whom or what is irrelevant.

• Take a vacation, by yourself.

• There is no excuse to be bored.

• Pay someone a compliment, with no expectation of gratitude.

• Listen to your heart, it can take you on some of 

   the most unforgettable journeys.

• Forget the ex-flames, and look forward to a new one... 

   yes, it will happen.

• Say 'no' to jealousy, it can suck the life right out of you.

• Discuss ideas and concepts, not people.

• Try something new that scares the hell out of you.

• Cherish your health - never take it for granted.

• Relationships come and go, but nothing will ever separate 

   the bond of a close friend.

• Love, love and love some more.

Happy New Year!

Until next time... embrace the challenges in 2011, be lucky you're alive to do so.

presence - 2011

This is my post from 2010. I told myself when I started this blog that I would not re-post. Guess rules were meant to be broken.  This is one of my favorite posts, and I feel that it's worthy of round two. Have a wonderful holiday everyone...

My memories of Christmas as a child are probably some of the fondest. I love my family and I thank God that I have the most caring, supportive and loving parents anyone could ask for. I can now recognize as an adult just how much effort, love, time and care they put into making Christmas truly special for me, and my siblings (but I know they love me most!) In my opinion, Christmas is for children. It's that one day of the year that is truly magical. Sorry, Disney, but I got one on ya!

I'm an adult now (biologically anyway) and Christmas just isn't the same. The magic is lost. The lights, the music and the spirit is still lingering, but the essence of what it always was as a child is now over. That's ok, and I don't mean that in a 'Debbie Downer' kind of way. I just think that being all grown up changes the perspective and the mystery is now diminished. Unfortunately, it seems that consumerism and a society that thrives on self-entitlement has stolen that beauty of what once was such a meaningful time. I often wonder if the 7-year-olds of today are as mesmerized by the simplicity of a homemade Christmas cookie as much as I was at that age, or those exciting trips to have breakfast with Santa.  Their focus has gone from the wonderment of crafted creations in the kitchen to the possibilities from a click of a button on an electronic device. There is no nostalgia in that, and I believe there never will be. I remember so fondly being at Grandma's house and the ribbon candy and white porcelain Christmas tree that lit up when you plugged it in. That's what sticks to your ribs and becomes a part of who you are. I know I enjoyed the presents, but my memories are more of the presence... of my family.

Christmas now is spent with my immediate family only, and while that has changed over the years, the time sharing laughter, food, drinks and love is still the same as it was when I was five. Sure, the cast is a little different, a bit smaller, a lot older, and much wiser, but the love is still there. My expectations year after year are minimal, but are always met because the most important gift of this holiday is the interaction among my family. Now that, is magical.

I hope that everyone is blessed with the opportunity to share time tomorrow with someone they love. Let's not forget what the day is really about, and how we can continue to give gifts throughout the year that don't come in wrapped packages. Gifts of support, time, care, knowledge, humor, kindness and love. I really have only one wish on my Christmas list - I wish that I might inspire someone to give the gift of life by becoming a living kidney donor. Ok, I lied, I have two wishes and the other one wears a pin-stripe uniform, swings a bat and has a really cute butt. Make the new year for you, the possibility of another year of life for someone else. Donating your kidney might not be for you, but what about donating your tissue and organs when you're deceased?

Create memorable moments tomorrow with the ones you love and enjoy the spirit of what the day is really about... booze! Kidding.

Until next time... Happy Festivus, everyone!