By Michele Deluca
Niagara Gazette
NIAGARA FALLS — My friend Jason needs a pair of lungs. And a liver.
He’s waiting for a transplant to be performed at Loyola University Hospital in Chicago. That means someone has to die for him to live. It’s an awful trade to hope for, but his life depends on it.
Jason, who lives just outside of Milwaukee near where I grew up, is my best friend’s nephew. He was born with Cystic Fibrosis, the same illness that killed his sister about seven years ago when she was just two years older than he is now. His dad died suddenly from a heart attack 18 months after his sister’s death. His dad’s organs were donated. So Jason and his mother understand the pain that another family will feel if he is fortunate enough to receive lungs and a liver; if he is fortunate enough to simply breathe again.
Cystic Fibrosis is a dastardly disease. It effects many organs: lungs, pancreas, liver, intestines ... It steals your body’s capacity to breathe but does so in a manner that sneaks up slowly over time, so you always think that you are the one that might beat it. And you might be. But, more often without organ transplant, you won’t.
I’ve known Jason for all of his 28 years of life, but recently saw him through a new lens after spending some time in conversation with him at the wedding of his cousin, my best friend’s son.
Jason is not doing great. He is slender and frail and dependent on an oxygen machine. But his blue eyes are clear and full of life, still emitting the powerful energy of his former hockey player self, and his very bright mind is still deeply engaged with the mysteries and challenges of life.
When we talked, it was about his writing a blog. He thought that if he wrote about the challenges he faced, the multitude of doctors visits, the pharmacy of drugs he relies upon, the emotional struggles he must wrestle to the ground each day, it would to give a very human face to his illness. He could give and receive support among those who face the same battle, and maybe even encourage people to consider what they might do to join him and others as they fight for their lives.
We were discussing the kinds of things he should write about. I told him he could start by writing about his sister, a golden haired, angel of a young woman who was funny and irreverent and engaged to be married before the illness stole her last breath. I was also thinking he should write a blog entry titled: “Thinking about texting while driving or riding without a helmet? Save your lungs for me,” where imagined he could use the energy of his sharp wit to make a satirical point about the sacred blessing of good health. But, he’s really in the thick of his battle for survival, and I believe he needs to preserve his strength to stay alive and fight the good fight. So, I've created a blog in support of Jason called "Standing Beside Jason," and I'm writing this column for him to share some of his story in the hope that more people will understand their power to change the fate of people like Jason.
I don’t understand why some people get ill and others don’t. Whatever we learn throughout the course of our lives, most of us understand that life is neither fair nor sensible. That’s actually how we can pinpoint the finest among us: They’re the ones who face whatever is dropped upon them with courage, kindness, and a heart full of love despite the insanity of the test.
My friend Jason has raged at this illness with the courage of a gladiator while living and loving with a wisdom usually reserved for those who have had the good fortune of living life to an old age. Jason reveres life. But now he needs lungs and a liver to remain alive. And while even though many of us understand that generosity of spirit is one of those traits that mark the finest among us, will we be taking our vital, healthy, re-useable organs to our graves?
As I write this, my driver license remains unchecked in the area that marks me as an organ donor. I just turned it over and realized that if something were to happen to me, I would be deprived of the ultimate service by not sharing what I no longer need. I am checking it now and signing my name. I’m asking you to do the same.
None of us know when death or illness is going to strike or whom among us will fall victim. We do know that eventually all of us will face those twin challenges. At such times, I suppose it won’t matter to our bodies if we have lived in a loving, courageous and generous manner. Nevertheless, I’m fairly certain it will have mattered to the loved ones we leave behind. But it is without question, that our courageous and generous actions to donate our organs will matter to those who are waiting for the gift of life. Just ask Jason.
(To contact Jason visit the blog I've created for him called "Standing Beside Jason" at: thejkblog.wordpress.com)
