Christy Setzke is a donor sister from Wisconsin. Her brother, Todd, was an organ donor after his passing. Christy now advocates on behalf of organ & tissue donation. Most recently, she hosted a Donor Dudes event at Ashland High School in which she spoke to 11th and 12th-grade Medical Science classes about the importance of organ donation.
Fifteen years ago, organ donation was not on my mind; furthermore, I would have never entertained the idea of writing about it. I have since learned—even with my personality of always trying to be in control of things—life is full of curves, twists, bumps, hills, and mountains. My journey to learning about organ donation began with a huge mountain on my life path: the loss of my only sibling, my big brother, Todd.
According to the Collins Dictionary, the “circle of life” is nature’s way of taking and giving back life to Earth. It symbolizes the infinite nature of energy, meaning, if something dies, it gives new life to another. This is the best way to sum up what organ donation means to me because it defines so much of Todd’s personality as well.
I never fully realized how much of an impact my brother had on my life until he was not there anymore. Yes, I always appreciated him (most of the time—maybe not when I was stuck in a car after school with his high school buddies), I was thankful for him, and loved him. In the back of my mind, I just thought he would always be there—that is, until May 29, 2001.
Todd and I were polar opposites: he was athletic, I was the scholar; I was notorious for my Type-A personality, he was more carefree; I loved Shakespeare, he had no use for that sort of thing; Todd was popular, me…not so much. Yet, we were also similar in many ways. We were raised in a close family and both sets of grandparents were huge influences on our young lives. From a very young age, we were taught that giving back was always the right thing to do. It didn’t have to be tangible—simply helping with a chore, doing the shopping for a grandparent, and spending time with family was enough.
Our maternal grandfather suffered from Alzheimer’s disease and, honestly, I don’t think he ever truly knew who I was. Our grandmother took care of him until the very end, but it was always Todd who would spend hours at his side, holding his hand, watching TV, and carrying on a seemingly one-sided conversation.
This gentle side of Todd’s also showed with our late cousin, Kevin. Todd and Kevin were close in age and more like brothers than cousins. They were always causing mischief and having fun. When Kevin was diagnosed with Duchenne muscular dystrophy, a genetic disorder in which muscles progressively degenerate over time, Todd attached a wagon to his bike so that Kevin could ride along.
Julie, an ex-girlfriend of Todd’s and someone he remained close to, frequently mentioned to me how Todd was one of the few guys she dated who paid any attention to her developmentally challenged brother, Joey. In fact, Todd and Joey became best friends and shared a love for anything that had an engine and wheels. There were times when Julie wondered whether Todd had stopped by to see her or Joey because he would always spend so much time with him.
Todd could get along with anyone and would try to help out in any way possible. In his mind, being an organ donor was just another way for him to give back and help other people in need. That was how he tried to convince me to register as an organ donor, when he went to renew his driver’s license on his 34th birthday, on May 10, 2001. At the time, my mind was focused more on living than dying and I assured him that we were still young—we had time. Donating our organs wasn’t something we needed to think about any time soon.
I wish I could take back those words and turn back the hands of time. Todd’s accident happened just 19 days after that conversation—just 19 days after his 34th birthday. Seeing my tall, blond, athletic brother on mechanical life support was like a bad dream. While the world moved in regular time, it seemed as though I was moving in extremely slow motion, trying to comprehend and make sense of what had happened. I spent every waking moment in Todd’s hospital room, holding his hand and trying to soak up as many memories that we shared as I could. While he was on life support, we were asked if we knew about his status as an organ donor—my mother and I were both able to confirm that he was. At one point, someone tried to tell me that this was all “part of God’s plan…”“
And never have I known
Anything so hard to understand
And never have I questioned more
The wisdom of God’s plan
But through the cloud of tears
I see the Father’s smile and say well done
‘Cause now you’re home
And now you’re free.
– Steven Curtis Chapman’s “With Hope”
This particular verse was one I listened to a great deal. Did I question God? Was I angry? My emotions were all over the place and trying to make sense of Todd’s death was impossible. I knew others were getting second chances at life from Todd’s organ and tissue donations, but all I wanted was to turn back time—back to when Todd was alive, smiling, and being the person he was meant to be.
The concept of organ donation did not enter my mind until that September—September 11, 2001, to be exact. All day, I sat crying as I watched the horrific events of that day unfold in real time on TV. At one point, a news reporter commented that it would be difficult to find the remains of the deceased in all of the rubble. At that moment, I was never so thankful that we had those last moments with Todd. I realized then that I could best honor his memory by learning about and raising awareness for organ donation. I became a registered donor the very next day.
Since then, our family has met the recipient who received half of Todd’s liver: a teenage boy named Ryan. Meeting him, his mother, and his sister…words cannot describe the emotions. They have become a part of our family. Ryan is living proof of what organ donation can do: giving someone a second chance—more time to live, laugh, love, play, and enjoy life.
I understand now why organ donation meant so much to my brother. Todd loved nature. He loved the seasons and how spring brought the world back to life each year. Organ donation is part of that circle. It has taken time, but I can finally say that I am at peace with his death.
While digging through some old boxes, I found the memorial that Todd had written for the local newspaper after Kevin passed away: “In memory of my cousin, Kevin, who entered Heaven on November 10, 1984. Remembering all the fun we had as kids brings tears to my eyes. Recalling how courageous and unselfish you were when your time came gives me the strength to go on living. I thank you, Kevin, for opening my eyes to things we take for granted. Always remembered and loved by Todd.”
Kevin did open my eyes to many things, but Todd reminded me just how precious life is, how one second can change everything, how worrying about things only wastes the valuable time you have with your loved ones. Todd taught me how to savor life and not be so afraid of taking chances.
I thank you, big brother, for opening my eyes to the things we so often take for granted, for reminding me of what is truly important, and for teaching me to take every opportunity to say “I love you” to family and friends.
I will always treasure and remember the times we had (even if you never did teach me how to drive a stick shift). I know we will meet again someday. For now, I can rest easy knowing you are together with Kevin again and I am happy.
Chapman, Steven Curtis. “With Hope.” By Steven Curtis Chapman. Brown Bannister and Steven Curtis Chapman, 1999. CD. From the CD “Speechless With Hope,” which was written for a family, the Mullicans (friends of the Chapmans), who lost a child. It was later sung in honor of the victims of the shooting at Heath High School in Paducah, Kentucky (Chapman’s alma mater).
Written by Christy Setzke, donor sister. Edited by CC Cunningham, CKF Program Manager.