The following is the personal account of my friend* Kurt Walker's lifelong journey with Eagle-Barrett Syndrome (more commonly known as Prune Belly Syndrome, or PBS). Kurt is a Pastor, teacher and preacher at Faith United Church of Christ in Indianapolis and, wow, does he make a difference to a lot of people:
"Tell me, what is it you plan to do
with your one wild and precious life?"
~excerpt from Mary Oliver's poem, "The Summer Day"
"I was born with a rare birth defect known as Prune Belly Syndrome (prunebelly.org). It occurs once in every 40,000 live births, with a 50% survival rate in utero and another 50% survival rate after 24 months of age. According to the latest genetics statistics, there are currently only 1,495 survivors living in the U.S.
"As my parents struggled to save my life as an infant they were told that, should I survive, I would not be able to walk, I would not be able to stand unless propped up by two walls, I would not be able to ride a bike, that I would never be able to have children, and that I would be one of only a few world-wide to have survived this disease. When you are born under those circumstances, you learn fairly quickly how much everything is a gift from God; a blessing, to be unwrapped daily, as our feet hit the floor to start each new day.
"As I went through the challenges of childhood, I was blessed to have parents who allowed me to
"When you are born with that kind of disease, and you are told from a very young age that you ought not to have survived; that you are a “miracle,” and when you have never met anyone else with your disease until you are in your mid-thirties, your perspective on life is a bit skewed. Honestly, I never thought I’d make it to thirty, never mind forty, and now I have met PBSers in their 70s. Still, the idea of my ever-impending demise, even though it apparently will not come anytime soon, with God’s grace, has left me a somewhat impatient man.
"Daily I asked myself: Am I doing enough for my family, my community, my neighborhood, and my God in a way that is pleasing to God and shows my thankfulness for the life that I have been given? Am I living my life in such a way that gives hope and inspiration to others with my disease or others who suffer all manner of physical or mental illness? God knows it is not always something that I do the best of modeling, it’s so much easier for us to count our failures rather than our perceived successes, yet, it is something that I strive for. So, I ask myself, am I striving deeply enough for or spreading widely enough to others, God’s good news message of abundant mercy, grace, joy and love to all “no matter who they are or where they are on life’s journey?” What is it I am doing to earn this “one wild and precious life” that I have been so freely given by God?
"This is a question that I think is worth asking within the context of a religious community. What if we were all told that we ought not to have lived and that our existence on this planet is a gift; a success story against all odds? How would we act differently if we knew that our lives, each and every one of us, were “wild and precious” in God’s sight; an unexpected opportunity to make a real difference for God will in the world as it already is in heaven? How would our lives change? How would our lives change for others? I wonder if we might act with a heightened sense of urgency this race that we are running.
"Our lives, as people of God, are a gift from God; a blessing, to be unwrapped daily, as our feet hit the floor to start each day. Let us be about the business of living out our wild and precious lives for God and all of Creation."
*[I used to sing in the Tanglewood Festival Chorus in Boston with my friends, Kurt and Jen Walker]