My Inflatable Heart
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My Inflatable Heart, by John Koehler, is a collection of short stories about life and the pursuit of happiness. Many but not all of the stories tell of the author’s work with disabled kids as the director of Young Life Capernaum in Hampton Roads, Virginia. Through this work, Koehler learned things about himself and the people that God called him to serve, as well as the “normal” people of the world. These stories will challenge the reader to think beyond the typical boundaries of religion and spirituality. Koehler questions everything and wonders about things that are mysterious or right next to you. He attempts to cross the divide between the world we live in and the place we call Heaven.
How is it possible for God to use ordinary people to do extraordinary things? Can disabled people become God’s disciples? These questions and many more are grappled with by Koehler, aided by a heart that expands and contracts like a hot air balloon.
In The Beginning
Go out quickly into the streets and alleys
of the town and bring in the poor,
the crippled, the blind and the lame.
In the beginning was Allen. God brought us together as brothers of different mothers and there was no mistaking it. We were as different as peas and carrots yet, as Forrest Gump points out, we’re both vegetables.
God brings us together in spite of our differences and similarities. In spite of the physical, emotional, mental and spiritual comparisons we make about each other, we are called to find the very things that draw us together and unite us in the midst of the vast fields of separation in our lives.
I met Allen way back in 2003, in the atrium of Spring Branch Community Church. I was coming out of church after the service and noticed a big dude in a wheelchair just outside the doors, over near the windows. He was talking to a lady and I got in line to talk to him.
Why did I get in line, you ask? Well, I don’t rightly know, truth be told. It just seemed natural. I wanted to know who he was and why he was there. I was simply curious and being a gregarious sort, I just got in line to fulfill the destiny of our meeting. The meeting that God had arranged and setup with a twinkle and a smile.
I looked at him as he continued to converse with the lady. He was one sorry looking sucker, I can tell you that! Now before you turn me into the police, or call the National Guard, you need to understand one thing: this book will be about honesty and telling the truth, no matter how much it might hurt your feelings or seem as if it hurt someone else’s feelings. I am a truth teller, and while I do not go around trying to incite riots or upset folks, sometimes I do.
There is absolutely no question that I would be much better off by shutting my big pie hole and NOT sharing the words that just materialized in my brain a nanosecond before unleashing them on the world. Perhaps I would be better served if I ran the words through the filter of my heart.
But here’s the deal. My heart is a cauldron, and the truth is that my SOUL lives in my brain. So all that I think and feel is mixed up in one place. All the good that God gives me, all the great stuff I read and hear and see is mixed in with all that is wrong with me.
All of my bad behaviors compete with my good and I don’t always know which side is going to win out when I open the trap door to the dungeons that hold my treasure and my garbage. The trap door otherwise known as my mouth. Or, in this case, the fingers that are flying across the keyboards as these words spill out of me and across time for you to see.
Telling the truth about how someone looks or acts when I am good friends or family with them is not mean in my world. It is just accurate, and if I am to tell you the truth and invite you in to the world of Capernaum, you must hear everything. The good, the bad, the ugly and the beautiful. Remember: God made it all!
Back to Allen.
Allen Nebrich was one gnarly looking dude! If you could pull his big white butt out of his wheelchair (and I did many times) and unbend his crooked sinews and bones and muscles, he would stand about 6’4” or maybe an inch or two taller. He weighed about 175 lbs. soakin’ wet and felt like a hippo when you were tired.
Now from a weight standpoint, that is not the largest man on the planet. But from the standpoint of having to carry him or lift him from his wheelchair or bed or a chair or even a zip line lift, Allen was a huge man and one sure to test the limits of your endurance if you aimed to care for him as I did in my complete stupidity and ignorance.
Allen was born with Cerebral Palsy. This is a condition that occurs at birth and usually affects the body and mind in some way. In Allen’s case, by the time he was 20, he could not walk on his own and spent a good deal of time in a wheelchair.
His legs were pencil thing, his atrophied muscles fairly useless and under used due to the mixed signals between his brain and his lower limbs. He could move his legs some, as I quickly found out when after I had busted him for something stupid he had done, he kicked me. So much for the pity party!
His arms were also scarecrow thin. His right arm we affectionately named “the claw,” because it was permanently bent backwards, stiffly reaching behind him like a huge cat’s whisker. Quite useless to him and prone to bump up against doorways.
His left arm was his hero, and it gave Allen the freedom he needed to connect with the world, travel on his own and even shake hands. Allen would lean forward in his chair, reach across his lap and man the joystick and buttons of his wheelchair controller. This plus the weak muscles of his abdomen and back caused him to stay in a perpetual forward lean.
When he looked at you from this leaning position it was as if he could barely stand to look at you from the corner of his eyes. Allen would have preferred nothing more than to stand together with you and look you in the eye while you talked and laughed without a care or thought about your bipedal balance.
Allen wore glasses, held on by a strap that slipped and came undone. He couldn’t adjust this himself and relied on the kindness and care of others to help him with that and many other adjustments in his life.
His wheelchair was his chariot, capable of going on road or off, as I came to realize later. Battery powered, it could attain speeds of 8 mph, twice as fast as a strong walker. Often Allen attached a fiberglass rod to the back of his wheelchair with an orange safety flag at the top.
I remember seeing him zipping along Great Neck Road or First Colonial on his way back home or perhaps to the video store. If cars were in the way of my sight, all I would see was his flag resolutely rolling forward, announcing to the world to watch out for the
charioteer that was in their midst, fearless and strange.
At last the lady was done and I stepped up and announced, “Hey dude, my name’s John. What’s your name?” That is pretty much exactly how I would introduce myself to anyone. Since I’m from the oceanfront, “dude” is synonymous with man, and “chick” for woman. I called everyone dude. I call the highest ranking and most influential people I know dude.
And they like it!
So did Allen. He body started pulsing back and forth as he fought to answer me with his stuttering, popping and explosive method of speaking. This is from the palsy (Cerebral PALSY) that constantly washed over him in waves. From his difficulty breathing and speaking at the same time, and from weak facial muscles that just didn’t connect to the nerves that waited on his cranial orders.
“Muh, muh, muh, my nuh nuh nuh namesallen.”
I caught his name in the rush of the run on sentence and put out my hand to shake his. At first I thought he was trying to bring up his right hand, since that is the typical way guys shake, but instead he gave me his left hand, with its permanently bent fingers and wrist.
I asked him why he was in a wheelchair and over the next several minutes he told me about his CP (Cerebral Palsy). I asked him about his body parts because I wanted to know what worked and what did not work. I wasn’t trying to queer or fresh, I just really wanted to know.
Here was a crippled man that was obviously capable of coming to church, carrying on a conversation and having rational thought. I was simply curious to know how he did it and how he overcame his ill-mannered and obviously deformed body.
My mother had always told my brothers and sisters as we were growing up, “If you are ever with someone that has something unusually or strange about them or on them, just ask them about it.” Be nice about it but ask them. So I did.
Allen told me about being born and the problems involved. He told me about growing up and how he could walk with some help until he was a teenager. How he was main streamed into classes because, while his body was crippled, his mind was not. This was of course not always the case, and Allen was on the cusp of a national sea change in thinking about how to serve people with disabilities.
He told me about his Mom, his advocate and provider. The woman who was always there for him, to care for him and provide for him. Lynda was a Mom that fought for her son, because if she didn’t fight, he would be forgotten in a system and world that still wanted to put him away where we didn’t have to deal with his kind. The kind of people we’d just as soon not have to look at and surely not have to treat like “normal” folks.
He told me that his Dad was a, “Duh duh deadbeat Dad.”
So often in marriages that have a child with disabilities, the emotional, physical and financial strain of caring for the child is simply too much. More often than not, it is the father that leaves, leaving the mother to be the sole provider and defender of the realm that is their child’s.
In the case of Lynda, her compassion and love for her son was balanced by her ferocity and sheer force to overcome and break through the old school mind-set of that time. In the case of Allen, that time started in 1974, when most folks thought of integration and civil rights as only something for black folks to fight for.
But as far as Lynda was concerned, Allen might as well have been black. I have noticed over the years the ferocity and tenacity of black mommas for their kids. Partly because in many cases the Dad’s are deadbeat like Allen’s was. Partly because they can see both the latent beauty and perfection in their child and the fact that society sees neither.
If I was a child put down by the world, I’d love to have a black Mom loving me and fighting for me. Or Lynda Nebrich, or any of the Capernaum Mom’s I’ve come to adore over the past few years.
If you value your life, don’t mess with the Moms!
John Koehler - Owner & Publisher is a multi-talented, award-winning designer, entrepreneur, ministry volunteer, and author of three books. A 1980 graduate from Virginia Commonwealth University with a BFA in Communications Arts and Design, John went on to graduate studies at George Washington University, in Washington, DC.
After stints as Art Director at several DC area ad agencies, John started Koehler Studios Inc. in 1993. Since then, Kim Nelson joined the team as the Creative Director, and in 2010 bought the studio and re-christened it as Red Chalk Studios. John is a past president of the local Ad Club and is a member of The Noblemen, a fundraising group for kids.
John has also served with Young Life Capernaum in Hampton Roads, a ministry that serves kids with disabilities. Perhaps his best known accomplishment was winning the 1991 Boomerang World Championship in Perth, Australia. He was also a member of the Foster’s Boomerang 2000 Team, a touring demo team that taught the NFL, MLB and others the gospel of boomerangs. In 2005, John published his first book, Bipolar by Koehler, about living with bipolar syndrome. Since then, he has given many talks around the state and in schools to help people better understand how to survive brain illness and avoid suicide. In 2007, Koehler published Benjamin: the Road to Capernaum, a novel based on a crippled man in the Bible who was healed by a certain Jewish rabbi. His latest book is My Inflatable Heart, a series of short stories about Capernaum and life recollections.
Married since 1982 to his college sweetheart, Patty, an art teacher at Old Donation Center for the Gifted and Talented, John is the proud father of Kimmi and Danielle and grandfather to Lilli and Eli. John lives and works in Virginia Beach, Virginia.