Sunday, August 25, 2013

The Path to Healing for Organ Donor Families

My mom asked me, no scratch that, INFORMED me a few weeks ago that I would be speaking with her at a Lifeline of Ohio (Donate Life) event held at the Ohio State University student union.  I was less than enthusiastic, as I am deathly afraid of public speaking.  Seriously.  I am not a fan.

Regardless, I agreed to it because for starters it was with Donate Life and second because my own mother asked me to.  So I had a close friend who I have a tremendous amount of respect for if she would help me by proof reading my speech.  She (thankfully) was able to squeeze it into her busy schedule and here is the outcome:

"Hello.  I am elated you could be here today.  And getting “here” wasn’t easy by any stretch of the imagination and I suspect it was a little more difficult than you realize.  In fact, in order for you to be here today, you had to be the beneficiary of an extraordinary string of luck or fate.  It’s interesting to note that in this kind of journey that has brought us all together, even though we may begin at different times and different places, our paths cross so that we may share our compassion, love, and appreciation in this excursion we call “life”. 

My personal journey with organ donation began the day I decided to register as an organ donor when I turned 16 and received my driver’s license.  At that point, I was just a junior in high school, who hoped to one day play volleyball in college and become a veterinarian.  I loved science, biology specifically, and it just seemed selfish and, more importantly, wasteful, to not donate my organs if anything were ever to happen to me.  From my point of view, I felt that if I passed away, and wherever I would be going, I wasn’t going to be able to take my organs with me. 

As all 16 yr olds are, I was unaware that I had committed to something that would later impact my life, my parents’ lives and the individuals who received the gift of life from my only sibling.  It was February 2004, and I distinctly remember sitting at my mother’s feet on the blue-grey carpet of the hospital waiting room as her friends comforted her on both sides, while anxiously anticipating my brother’s prognosis at St Ann’s.  I remember how I suddenly became keenly aware of how my eyelids felt when I blinked as I stared up at my mom, hoping…hoping more than anything, that this was all just a bad dream.  She asked me, in a shaky voice, if she and my father should sign the organ donation papers.  I said, “Yes.  We have to give someone else a chance if we aren’t given one ourselves.”  Please do not misunderstand her hesitation, as I knew that she was going to sign those papers anyway, but by asking for my opinion, it was as if she was delaying the acknowledgement of the harsh reality that Paul might not be coming home with us.

Fortunately, for our family, my brother’s liver recipient reached out to us.  Joseph became like a  relative to my family.  Words cannot even begin to describe how my parents enjoyed reading his correspondence.  The letters he sent showed signs of being opened and folded a multitude of times, and I am sure it was because it provided my parents with evidence.  Evidence that the decision they made was the right one.  Confirmation that Paul’s gift was significant and meaningful.  Proof that Paul’s selfless decision was life changing to others.  Verification that Paul was still impacting others long after he had been gone.  

I am not sure if recipients realize the power and impact they have on donor families.  Psychologist William James said that “The deepest principle of human nature is a craving to be appreciated.”  And I believe that this is true.  If we are truly honest with ourselves, we all want and need to feel valued for who we are, and we need to be recognized for our contributions and accomplishments. Therefore, it’s important for us to know that we have made a difference in someone’s life.  And I’m not just saying this because I come from a long line of teachers, as we are known to be an altruistic and giving group of people.  I’m telling you this because this is true for all mankind.  If a person takes the time to express their heart-felt appreciation for something we have done, it boosts our spirit, passion, and purpose.  It builds our self-confidence, self-esteem and our entire self-image. It gives us energy and motivation to continue on.

And trust me, there were times in dealing with the loss of my brother, when simply continuing on was a struggle.

As recipients, you have the ability to help a donor family feel significant and to realize that their loved one gave a gift that continues to live on long after they are gone.  As a recipient, you have the chance to help a donor family feel appreciated and valued.  In other words, you have the potential to help others see light when they are surrounded by darkness.

Most importantly, you have the opportunity to help a donor family heal.  Your communication and the acknowledgement of their decision to donate is a vital component of the healing process.   

Whatever pleasure each of us derives from our existence in the cosmos, there may be nothing more precious than the feeling that we truly matter — that we contribute unique value to the present and the people we share our lives with.  For some, the simple act of recognition is sufficient enough.  So as difficult as it may be for you as a recipient to reach out to donor families, dig deep and try your best to establish a connection.  Donor families need to hear from you because they want reassurance that the people their son/daughter/mother/father/brother/sister helped with the gift of life, is living a full life, complete with love, and dreams, and goals and first time experiences.  We want to hear about how our loved one’s selfless gift allowed you to graduate from college, to get married to the one you love, to have children who you will watch grow.  We want to hear about how your life has changed for the better, because, at least then, then—there is some good that came out of our loss.

You have been chosen, by fate or providence, or whatever you wish to call it and, as far as we can tell, to be living in the greatest time period of modern medicine.  Organ donation isn’t just something that we do, it’s something that we all become.  We are all members of an elite club of support and hope that we will forever be a part.   So I leave you today with one request: acknowledge what others have done for you to be here today, because as we all know too well, life can change in an instant and today may be all that you have. 

Thank you for your valuable time and attention, and I wish everyone the best of luck as you continue on your journey of success, memories, and life long friendships."

After croaking my way through the words I had toiled over, wiping my nose and my eyes a multitude of times, I turned and walked with my mother off of the stage.  The CEO of Lifeline hugged me and said, "Turn and look.  You've got a standing ovation."  Sure enough, 700 people were standing up, applauding my mother's and I's message.  It was overwhelming.

Later, we received a text from one of the Lifeline big-wigs, congratulating us on our message and acknowledging that they had LOTS of  recipients approach them with requests on how to contact their donor families.  A certain man in particular had received his heart 22 yrs ago, and although embarrassed it had taken this long, he had decided it was time to express his gratitude.

That text message alone made it all worth it for me.