Written by Diane Lightbody
I’ve been an organ donor for years, but it wasn’t a decision I made early in life. When I was first asked if I wanted to be listed as a donor, I declined. I was a teen getting my driver’s license. At that time in my life the thought of organ donation, quite frankly, freaked me out. I had horrible images and thoughts that would pop in my head about donation – and I did not want any part of it. (Did I mention I can’t watch horror movies – even now?) Yep. I am a bonafide, card-carrying wimp when it comes to anything remotely horror-ish, and, at that time, organ donation was squarely in that compartment in my brain. As I gained more life experience I began to see that my fears about donation were completely unfounded. (If you have any fears, doubts, or questions, I highly recommend researching on TaylorsGift.org, or donatelife.net, both of which debunk common misconceptions and provide information about organ donation.)
One day, while renewing my license I changed my status to “donor.” I actually didn’t think too much about it at the time. It was a whim. I didn’t think about it after either. It was an added mark on my license, nothing more. The truth is that I didn’t want to think about it, as it meant facing my own mortality, which is uncomfortable and upsetting. It was for this same reason I had not yet created a will, despite clearly having advanced (at least according to my age) into the “grown-up” category. It was the four-year-old “inner child” still inside me sticking her fingers in her ears and shouting “NA, NA, NA, NA, NA, I CAN’T HEAR YOU, NA, NA, NA, NA, NA,” believing that ignoring the situation would make it go away.
Time continued to pass on my journey, and I fell in love and married an amazing man. A few years later, we brought a beautiful baby boy into the world. Suddenly the landscape looks completely different as this tiny human drastically changes your lives. You put their needs ahead of your own. You start to worry about being around for them as they grow up, and how to help them achieve everything they dream of. Then, in my case, the doctors tell you the reason your beautiful, happy three year old doesn’t say “mama” yet, is because he has apraxia of speech. And when hours of speech therapy starts to pay off and he calls you “mama” for the first time, you cry tears of joy, not taking a single syllable for granted because you know the effort it took to get to that point. A few short years later, you listen, somewhat numb, as the doctor diagnoses him with autism spectrum disorder, and another year or so after that he is identified as suffering from attention deficit disorder. His path in life is suddenly vague, but there is no avoiding the fact that he is on a different road from others his age. A road you couldn’t even imagine as you sang to him and rocked him to sleep as an infant.
As you gain life experience, your perspective shifts. You age, and you notice your body doesn’t act (or react) the same as it once did. You see family and friends battle serious illness. You see high school classmates – the classmates who each possessed, as you did, the power of invincibility – pass away, the circumstances varied, but always occurring far too soon.
You begin to comprehend the absolute fragility, instability, and insanity of life. All of these experiences – mine, yours, each of our experiences – form a filter through which we each view the world. Ideas about your purpose in this world and your connection to others shift as your experiences provide you with more input. For me, the most significant filter to date, and the one that fortified my commitment to organ donation, and that changed me from “closet” donor/introvert, to stepping out of my comfort zone and trying to bring awareness to the need for registered organ donors, came only recently, on the heels of a family crisis that began three years ago.
October 4, 2013, in a split second, my family’s path was altered. While on an “adventure” with our son in the woods behind our house, my husband fell over 10 feet when the branch of a tree he was climbing snapped under his weight. He was scraped up over several large areas of his body, with a couple of broken ribs for good measure. It wasn’t until 18 hours or so after the fall that Doug suffered a stroke, right before my eyes, and I was helpless to stop it.
I stared as he suddenly struggled to speak, the words coming out as gibberish, and watched as one side of his face slid down as if it were a wax figure, melting from the heat. Two brain scans did not yield answers, and his condition continued to deteriorate. He was catatonic by the time the cause was discovered during a scan of his neck, just below where the previous scans had reached. What we hadn’t realized until then was that fall had torn his carotid artery. The clot, the body’s own self-healing method, had blocked off the flow of blood to his brain. TPA, the “clot busting” medicine you hear so much about (and which has, undoubtedly, saved many lives and mitigated the damage from many strokes), was contraindicated in this instance.
Because of his broken ribs, Doug would have bled out if TPA had been administered. Instead, he was rushed from the satellite hospital to the main campus of the Cleveland Clinic, the only local location in the Clinic’s system with the doctors and facilities capable of performing the mechanical removal of the clot and restore blood flow. To make a long story short, Doug survived, thanks to the grace of God, and the expertise and heroic efforts of a multitude of dedicated and talented doctors, nurses, and other hospital and medical personnel. After the procedure he had full functionality on his left side, but suffered hemiparesis of the right side. In the three years that have passed, he has continued to improve.
He is walking under his own power, without any assistive device, he can lift his arm above his head, and is now gaining some mobility in his fingers. His recovery is a testament to intense physical therapy and his hard-headed nature (which I swore I would never complain about again). He still suffers from significant aphasia; however there has been some improvement in that area as well. There isn’t a day that goes by that I am not grateful that he is alive. That he continues to gain function and re-learn lost skills three years after his stroke is an unexpected marvel. The outpouring of help from friends and family that I received immediately after Doug’s stroke, and in the months beyond, was nothing short of humbling, particularly for a person who prides herself on autonomy. At a time when there was nothing I could do to help my husband (or my son, or myself for that matter), others stepped up to carry us all through the tough times. Of course no one could reverse the effects of the stroke, but they did help us keep fighting. They helped us keep our strength up, and our spirits high, celebrating and praising God for every microscopic milestone.
While Doug remembers little about the events and early months of recovery, my experiences and feelings during that time are burned into my memory. The feeling of helplessness and despair as I sat by my husband’s hospital bed – unable to do anything to help – nearly crushed me.
Through all these life experiences, particularly my husband’s accident, I began to fully realize and appreciate the fragile nature of life itself. I try to remember that every moment on this earth is a gift, and every day is a blessing, despite the challenges we all face and overcome. It was through this personal calamity I gained a deeper understanding of the helplessness that patients and families awaiting organ transplants must experience. The sad reality, though, is that not all transplant patients get the “Disney-worthy” ending. There are simply not enough organ donations to fill the needs of people on the transplant waiting list, and eventually time runs out.
Did you ever think about the fact that, despite the amazing medical advances that have taken place over your lifetime – the miraculous things that can be performed, prevented, or cured in today’s world, things that were the equivalent of a death sentence one hundred years ago – there is still only one solution for fixing a failing organ? The organ must be exchanged with another, compatible, human organ. Even the mechanical heart, by far the closest to attaining the label of “solution,” is only viewed as temporary, providing an extension of time in hopes that the patient can find a donor match. The miracle of life, at least as it exists in the complexity and function of a human organ, cannot be re-created by human beings. It can only be given by one human being to another - human beings helping other human beings in a very personal, spiritual, and meaningful act of compassion and kindness.
Humans need companionship, love, support, acceptance, and understanding in order to thrive. All these things and more can, and should, be given freely by all of us to each other while we travel on our respective paths through life. We need to work together, a society of persons all performing different roles that intertwine and provide for us all. But the most profound thing you can give to your fellow human beings is the gift of life. We need to help each other in order to survive. Register as an organ donor. Discuss your decision with your loved ones. Make sure they are clear about your wishes to be a donor. It will spare them considerable anguish during a difficult and emotional time. Urge your friends and family to do the same. Imagine the difference it will make, and the number of people your kindness will touch. Your legacy will survive in many, many lives in the coming years. Outlive Yourself.
“We are each of us angels with only one wing,
and we can only fly by embracing one another.”
~ Luciano De Crescenzo