Writing Bob’s Story – How one joyful quadriplegic taught me happiness
A writer’s heart should be open to the story already written, which is tricky because sometimes my heart isn’t prepared for what it’s about to experience. I’ve written many profiles without incidence, but this one questioned my integrity. It demanded an examination of my own disabled soul.
Bob Lujano and I first met in Moraga, California in January 2007. He was there to give a talk at St. Mary’s College, and this would be my introduction into his life. What I saw in his face and heard in his words was victory and gratitude. He is a quad amputee. I did not trust his grateful, joyful disposition.
Bob’s interview began with a verbal resume’ like all the others. On a snowy Kansas morning in January of 1979, 9-year-old Bob was rushed to the hospital with fever and purple fusions all over his body. He went into septic shock, his organs threatening to shut down. The diagnosis was meningococcemia, a rare infiltration of bacteria into the bloodstream that kills within 24 hours. He was given a 3 percent chance to live. All four limbs had to be amputated to save his life. His story caught national headlines, and various news outlets followed him for more than a decade through the completion of his master’s degree in Recreation/Sports Management from the University of Tennessee.
His elite athleticism earned him a spot on the United States Quad Rugby team (a full-contact wheelchair sport), as well as a co-starring role in the Academy nominated documentary, Murderball, which chronicles the team’s journey to the bronze medal at the 2004 Paralympics in Athens, Greece. Soon after, he and four teammates were guests on Larry King Live. He works full time at the National Center for Health, Physical Ability and Disability (NCHPAD) at The Lakeshore Foundation in Birmingham, Alabama as an advocate for Inclusion in Sport for the disabled. He is also a Sport Laureus Ambassador.
Up until his recent marriage this past January, Bob lived and traveled independently – no caretakers. He uses his elbows to drive, cook, clean, type, play sports, use his cellphone – I once caught him texting while driving. Pretty much whatever you can do, he can do.
The first version of his book read like a giant thank you card. I didn’t get it. I needed context to his gratitude. Was it just a coping mechanism? Was he hiding something? Over the next seven years I sought answers. There were topics he avoided. I couldn’t figure out where the joy was coming from. I sent him questions, and he responded verbally via cassette tapes.
It took a few years for him to reveal the legacy of abuse. The cassette tape just showed up in my mailbox, unsolicited. I hadn’t asked anymore questions. As I listened one rainy afternoon, my mouth dropped. His dad ruled with a belt. His mom walked out on them when he was 5 and his sister, Lisa, was 7, so they were sent to live with their grandparents. His grandfather didn’t want them there. Bob described in detail the day his grandfather beat his grandmother. On another day, in the kitchen, his grandfather turned his fist on Bob and then Lisa. Then Bob got sick and laid at death’s door. And yet, this tape was like all the other tapes; he kept using that pesky word: grateful. He was so grateful for all of it!
At this juncture, my heart was agitated. I couldn’t – or wouldn’t – hear what it wanted to say. The story lay on my desk in a pile of words, waiting for me to let it breath its own oxygen. I went back to the beginning, re-reading the interviews, re-listening to Bob’s words on the tapes, re-reading what I’d already written in the manuscript. And there it was, tucked away in the corner of an early chapter: Bob’s soul.
I remember vividly that conversation with Jesus, even though I was comatose at the time. He stood at the end of my bed and gave me a choice.
“Do you want to stay and live, or would you rather come home with me?”
“I want to live. I have things to do,” I told him.
Dying in surgery or asleep in ICU would have been the perfect way to go. Just slip into paradise away from all the tragedy I had experienced in my nine years on earth and not have to deal with a battered body the rest of my life … I did not have clarity that day about the things I had to do, but God in his goodness put a yearning in me toward the hope that life might be more than what I had experienced so far.
That was the seed of his gratitude. At the opportunity to be relieved of emotional and physical pain, his soul chose to endure it in the hope it would be redeemed. Complaining over circumstances would dishonor his decision to live. Bitterness and hope cannot coexist. Bob chooses life — gratitude and forgiveness — every single day, which brings genuine joy, peace and redemption.
I didn’t want that to be the answer, and I had fought it. My own soul played the victim from past hurts. It wasn’t truly living. Remaining angry somehow felt validating, like I was giving worth to the pain. In reality, I was bringing deceit and shame into the present. Bob’s choice opened my heart to write a new reality. Forgiveness and gratitude aren’t cop-outs. They are the life-giving blood in our veins.
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