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Article updated: 5/6/2013 6:54 AM

Triple amputee wants Boston victims to know it gets better

By Burt Constable

The emotional impact of last month's bomb blasts in Boston that killed three, wounded 264 and severed limbs from more than a dozen victims still reverberates in suburban bank manager Kent Carson -- from his head to where his toes used to be.

"The first thing I thought was that I'd love to talk to those people. I think about them all the time," says Carson, 55, as he slips on his fake arm and two prosthetic legs. "I wish I could go out there and talk to those people. I wish somebody would have walked into my room and taken off their legs and showed me that a person can walk again."

Generally not seen outside of a war zone, Carson's catastrophic loss of three limbs was caused not by an explosion, but by an infection known as Legionnaires' disease. The bacteria that cause it generally live in water or air-conditioning systems. "I'll probably never know where I got mine from," Carson says. But he relates to the shock felt by those Boston victims.

"I was fine. I got sick. And woke up with my arm and legs gone," Carson says.

A manager at a U.S. Bank branch in Wheeling, the healthy, 165-pound Round Lake Beach man accompanied his fiancee Cheryl Johnstone to dinner on Saturday, Aug. 4, 2012, at a suburban restaurant. Carson made it an early night because he got the chills and thought it must have been something he ate. He slept most of Sunday.

"I went to work on Monday," Carson recalls. "I never called in sick to work in 35 years."

But a 103-degree fever forced him to make a doctor's appointment. During his lunch hour, he grabbed some paperwork and headed to his car. His blood pressure had fallen to a dangerous level.

"I fell down in the parking lot and my papers scattered," he remembers. "A customer helped pick them up. I took a step and fell again."

A bank teller drove him to the doctor, who sent Carson to the emergency room at Northwest Community Hospital in Arlington Heights. Doctors there alertly diagnosed him with Legionnaires' disease, named after a deadly outbreak at an American Legion convention in Philadelphia in 1976 that sickened hundreds and killed more than two dozen.

"The bad news is I'm going to be here over the weekend," an unrealistically optimistic Carson told Johnstone by phone. By the time Johnstone could drive to the hospital, Carson was in intensive care and getting sicker. He had a fever as high as 107.9 and needed a tube down his throat to help him breathe, Johnstone says.

"Anything that could go wrong did go wrong with him," she remembers. Carson developed a sepsis infection and blood clots throughout his body. Acute respiratory distress syndrome attacked his lungs. He suffered a stroke and internal bleeding. With his liver and kidneys failing, Carson needed dialysis treatments.

"At some point in time, my heart stopped and they had to pound on my chest to get it started again," says Carson, who adds that he doesn't remember any near-death phenomenon. "If I did see a light, it was a train, and it hit me hard."

Carson has very few memories of anything that happened in the hospital. Details he does recall might just come from what he was told by Johnstone or his children, Brennen, 28, of St. Charles, and Rebecca, 30, and Colin, 25, of Hoffman Estates.

"I remember the doctor showing me my hand and my legs, and they were black," Carson says. "He said, 'You can keep your arm and legs and you will die. Or you can amputate and live.' There was no big decision to make. It was live or die."

He was transferred on Aug. 27, his 55th birthday, to a hospital at University of Chicago Medicine, where doctors agreed that amputation offered the only chance to save his life. Carson's left arm was removed about 6 inches below his elbow on Sept. 11. Three days later, both legs were removed just below the knees.

Earlier that summer, he and Johnstone had enjoyed an active Caribbean cruise. They parasailed in Grand Cayman and zip-lined in Jamaica. After his surgery, Carson couldn't even sit up in his hospital bed without falling over. His weight dropped to 104 pounds.

"I was depressed. I needed someone to come in and tell me it's not the end of your life," says Carson, who notes that doctors no doubt told him that. "But I needed somebody who was in the same situation as I was."

During his extensive therapy at the Rehabilitation Institute of Chicago, most of his fellow patients were missing just one limb.

"You don't find too many people like me. I didn't know that somebody with no legs could walk," says Carson. He says he was surprised one day with a phone call from someone who does understand -- Congresswoman Tammy Duckworth of Hoffman Estates, who lost both legs and had her right arm severely damaged while serving with the Illinois Army National Guard in Iraq.

"She told me, 'Kent, your prosthesis should feel like putting on a brand new pair of socks and your most comfortable pair of shoes,'" remembers Carson, who still has the congresswoman's cellphone number if he ever needs to talk.

Released from the Rehabilitation Institute of Chicago at the end of November, Carson moved into the Oak Lawn home of Johnstone and her daughter and began physical, speech and occupational therapy at nearby Advocate Christ Medical Center. To walk up a simple step, Carson needed two physical therapists to help him.

"Now he does a flight of stairs by himself," says Kathleen Dub, the physical therapy assistant putting Carson through his final rehab session on Wednesday. Once a shot eliminated severe nerve pain in one leg, Carson became a rehab star.

"Amazing that someone with no legs can still walk and climb stairs, isn't it?" Carson says with a chuckle, noting that his biggest problem traversing the stairs comes from adjusting to his new bifocal eyeglasses.

"One time my right leg fell off and went all the way down the stairs," says Carson, who managed to sit down while his therapist fetched his limb. He quickly slipped it back on ("I learned how to put them on by myself in the dark because I needed to go to the bathroom") and completed his task.

"We needed more goals for him, so we started timing him," says Dub, who presents Carson with a "graduation" T-shirt reading "Goals set. Goals met."

"There's no stopping him. It's pretty amazing," Dub says as she watches Carson stand on his artificial legs and use both arms to bat a balloon around with Erin Barry, a student physical therapist.

"I'm pretty competitive," Carson says.

"One of the first things we do is talk to them (amputees) about self-esteem issues," notes Dr. Roy L. Adair, chairman for the medical center's department of physical medicine and rehabilitation and medical director for the rehabilitation program. "People are afraid of it and think, 'My life's over.' Right away, we tell them what they can do."

With the help of Dub, physical therapist Courtney Broderick and others at Advocate Christ Medical Center, Carson progressed from a wheelchair to a platform walker, to a smaller walker, to a four-legged cane, to a less-stable cane, to a fashionable cane to walking without any aids most of the time at home.

"It's almost like being on a pair of stilts," Carson says, explaining how it is easier for him to balance while walking than just standing still.

"With rehab and technology, they can regain a very active lifestyle after an amputation," Adair says, noting the advances in prosthetics that use better materials, myoelectric sensors and complex computer software programs to improve motor skills.

On disability from work, Carson says he expects to resume driving and return to his career this summer. Johnstone, who works in sales from her home, bought Carson a set of golf clubs for his birthday before he got sick, and Carson says he plans to use them by his 56th birthday. The couple, who met seven years ago through the online dating service eHarmony.com, say they wanted to get married on their dating anniversary of May 3 but are waiting until next year.

"I want to be able to walk down the aisle," says Carson, who is scheduled to get new legs on May 23 and a high-tech arm with fingers later this summer.

"These are beginner legs," he says of the rigid, bulky, flesh-toned plastic legs with no moving parts. "I don't have ankles, so ramps are real tough. I want ankles."

Carson says he wishes he could be an example to victims in Boston who lost limbs. He remembers how depressed he was at first.

"Who wants to be with this?" a weak, fragile and dependent Carson muttered to Johnstone when he came home. "I'm half the man I used to be."

That helped the couple see the big picture.

"It's not your legs and arm I fell in love with," Johnstone told him. "I fell in love with what's in your heart."

That, Carson says with a smile, is stronger than ever.

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