Joel Sonnenberg's Journey through Life

    Everywhere Joel Sonnenberg goes, people stare at him. Some gasp or even cringe as if he is an inanimate object and cannot see their contempt.

    One day he went to a restaurant with two of his friends. The waitress approached their table with three menus, handed each of his friends one, looked at him, then walked away with the third menu tucked neatly under her arm.

    He tells me of his journey as we settle into a Vietnamese food café called Mikino's Diner. It's a "hole in the wall" situated in a fairly dilapidated strip mall near his home in South Carolina. They serve an afternoon special: J-6, Teriyaki Chicken for only $3.99.

    Before arranging the interview, I read extensively about his life—how he was burned nearly to death just two months before his second birthday. A semi-truck rammed into his parents' Chevy, which exploded into flames as he sat strapped in his car seat. When a stranger pulled the smoldering seat from the wreckage, little Joel was unrecognizably burned, like a melted marshmallow, his aunt said.

    Joel's own mother wouldn't have known him, but for the baby shoes still tied to his tiny feet. Beleaguered by shock, she poured water over her screaming child to squelch the heat and the plume of smoke that rose out of his body and nearly choked her. That week in the hospital, when she dutifully changed his sheets, she found his fingers and toes one by one as they dropped off. At first she kept them in a petri dish, but later conceded to throw them away.

    Joel lost both hands and the better part of his feet, ears, nose, lips, and hair to the accident. Now, 24 years later, he is quite possibly one of the most beautiful people I have ever met.

    When I pull into the parking lot, I sit in my car a moment before heading inside. Truthfully, I don't know how I will react to Joel.

    I walk inside. His back is turned toward the door, but I identify him immediately by the blue baseball cap he wears. He turns, catches my eye, rises from his chair and bounds toward me thrusting forward his uninhibited disfigured hand. I join him and a friend, Jacob, at the table.

    They eat at Mikino's at least once a week, Joel says, because "it's totally weird and you never know what to expect." Addressing the waitress by name, he orders his favorite, J-6. I do the same. A grin spreads across his face. "You're brave," he laughs. A pretty girl named Jen makes her way across the room and joins us. She's taking a break from her dictation work in a local law firm.

    Joel met Jen several months ago when she waited tables at Charleston Crab House. The two had an instant rapport. "He came in like six times," she says. "We just sat there and talked forever. But . . . he would ask all these questions. And I was like, 'Why don't I get to ask any questions?'"

    I tell Joel that listening is a gift, but he brushes away the compliment. "People think I have all these great abilities, but I don't," he says. "They're the same abilities as everybody else; it just looks different on me. For instance, everybody can listen. . ." "No, they can't," I tell him. "In fact, there are very few people who listen."

    I ask him where he gets his hope. "Absolutely from Jesus Christ," he says. Joel appropriated his faith when he was five years old—a fairly mature thing for a kindergartener, but by that age he had endured more than 30 surgeries. He was used to pain, used to being alone, and used to making tough decisions.

    He was traveling to the hospital for a routine operation and he knew what to expect. Still, dread wrapped itself around his heart. "There's strange people around you, poking needles in you," he recalls, "so I reached out to the only thing that I could and I was like, 'Mom, I know about Jesus Christ from preschool and Sunday school, but how do I go to heaven? How does that happen?' She went through the whole sinner's prayer with me on the interstate as we were driving. Even though I was born in a Christian family, that's where my faith became my own, or started to."

    When the man responsible for Joel's handicap was finally brought to justice, he was sentenced to three years in prison, a decision Joel's mother still carries with great effort. Joel has forgiven the man, but memories continue to haunt him. An old videotape of a customary, but horrific changing of his head dressing reminds him of the maddening sense of helplessness he felt as a child. Because he was unable to articulate his anguish in any other way, screams became his language of lament. He writes: "Those recorded screams were not so much a response to the pain as they were my only means of expressing myself . . . deep within my soul was triggered an intensity of feeling—anger, helplessness, and frustration. That's why I screamed. That's what I remember."*

    Joel never really blamed his circumstances on one person because that wasn't how he was raised. "Why" is not a question he asks. The challenge for him is his daily encounters with new places and new faces. He has to maintain his focus to navigate such unpredictable terrain.

    When he was a young boy, people would literally walk up to him, touch his face, and recoil in disgust. As an adult, he finds people generally try to mask their reactions, but he almost always sees through the façade. "I think anytime anyone is confronted with differences, there's an inherent fear that they're somehow gonna mess up the situation or make matters worse," he says, adding wryly, "I'm not pointing fingers . . . because I don't have any." Joel insists that the rejection he gets rarely permeates his thick skin: "I laugh because it tells me more about them than it does about me."

    But I understand these awful reactions. I, too, stare and gawk at the unusual. Sitting across from Joel, I am struck by the magnitude of my own mortality, the incredible limits of life, its brevity and fragility. I have to let go of the notion that somehow I am superior or impervious when I'm faced with a fellow human being who says, "No, you're not." At any moment, I could be Joel. I am one car accident away from the life he lives, should I have the strength to endure it so gracefully.

    Like a larva that strikes some as unlovely, Joel is in the process of becoming a butterfly. It's just that, since his cocoon has been stripped away, we get to see the splendor of God's handiwork. And the work of our Father is not always what we expect it to be; it is divine and shocking and strange.

    When newspapers picked up Joel's story, people began calling him a "miracle." Does he share this optimism? "Well, yes and no," he says. "Was it a miracle that I survived? I would say that I don't have any proof. A miracle is usually an instance where God reverses the normal: gravitation, fire turning to ice, whatever. I don't have any evidence of that in my life. I think the miracle is that He's able to renew me inside day by day. Though hourly we are being wasted away, we are being renewed day by day. That's the real miracle. And I think the miracle is within all of us. That's Jesus' message."

    Joel once told an Asheville newspaper, "God gave me a blessing instead of a shortcoming." He establishes deep relationships very quickly. "I mean, like within a day or two," attests Jacob, who has learned from his friend a passion to delight in people who are different. "You can see there's so much triumph over hurting and deep issues that you want to get to know him. Before you know it, you have this real intense relationship."

    Joel tries to be the person who, for no ulterior reason, loves and serves others—that is his ministry. "I'd like to see more people with disabilities in church. You know they're out there," he says. "What are we doing within the church to reach out to those people? Do we understand people who are different?" For his part, Joel is speaking to people across the country with the message that through our difficulties, we can find ultimate joy and contentment in Christ. "Jesus uses what we have, not what we don't have," he says—a salient message for a society obsessed with reaching higher and acquiring more.

    His disfigurement is a reminder of God's purpose in his life, and for Joel, that's a good thing. He could alter his appearance with the help of a cosmetic surgery, but he actually likes the way he looks. When he was just five, Joel began making decisions about his treatment. He decided early on that if a surgery wouldn't enable him to function more effectively, he didn't want it. His older sister Sommer once caught him evaluating his asymmetrical face in a mirror. "You look different in a mirror," she said, "your reflection just doesn't look like you. You look better in person."

    She is right. Joel doesn't concern himself with other people's view of him. He knows that he is as God allows him to be, and he was created in His Father's image.

by Tonya Stoneman

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