06 December 2008

A year after rare stroke, adjusting to ‘a new me’

Progress, frustration for paralyzed student Gabe Chesman, 22

Gabe Chesman says that in confronting other people’s stares, “You just have to have a sense of yourself.”

The phoenix tattoo on 22-year-old Gabe Chesman’s arm has become a symbol of his rise from medical catastrophe.

One year ago, when he was a senior at Drexel University pursuing a degree in communications, Chesman suffered a rare spinal stroke. The ensuing year brought him a fight for life, a struggle for mobility, and the necessary readjustment of the goals and dreams that accompany paralysis.

Last February, halfway through a grueling year of recovery and rehabilitation, Chesman was living at the Kessler Rehabilitation Center in West Orange. His wire-rimmed glasses were too large for his gaunt face; he was too pale, too skinny. He could speak only just above a whisper, and he exhausted himself after a brief conversation with a visitor. Although his sense of humor was apparent, there was also plenty of anger and frustration.

A recent visit with Chesman at his home revealed the results of an extreme makeover, down to the fashionable frames of his new glasses, acquired on a recent outing with his mother in an attempt, he said, at “a new me.”

This time, Chesman, paralyzed from about the chest down, can maneuver himself to a visitor, shake hands, if weakly, get his own drink from a device on the wheelchair, and speak at length about his life, all without growing tired. He has some arm motion and some wrist motion on his left side. On the right, the arm motion is more limited and there is no wrist motion.

Although anger and frustration are still regular companions, they take a back seat to humor and persistence in facing the day-to-day challenges.

He wrote recently in his blog, days from gabe, “Dealing with paralysis is hard, end of story. However, sometimes it seems better or easier to deal with. In reality, it’s a struggle where there are rarely good days, only not bad days.”

On what seemed a particularly “not bad day,” the color had returned to Chesman’s face. He had traded a hospital gown for an Oxford button-down and Ralph Lauren sweater vest. And he had finally completed all of his physical therapy and received his first clean bill of health just before Thanksgiving.

Gabe Chesman and his mother, Jamie, who said her son has “a promise of a future.”
Chesman depends on George Boateng, a full-time, live-in aide, to help him get out of bed and to shower, dress, and eat. Chesman can feed himself, he said, but he prefers not to because it can be so “messy.”

Chesman now lives with his mother, Jamie, in Springfield, in a house that has been renovated to accommodate his wheelchair — thanks in large part to donations from friends and family, as well as congregants at Temple B’nai Jeshurun in Short Hills. Together, they raised funds for home renovations, a specially equipped van, and Boateng’s services. Chesman’s father, who lives in Florida, is too far away to help with day-to-day tasks, although he did stay with his son recently while Jamie Chesman had to travel for business. They divorced over 10 years ago.

Chesman’s bedroom and bathroom were carved out of the kitchen; the dining room now serves as his office, where his computer is set up, and he spends most of his time in the den.

Chesman spent over an hour with NJJN, discussing how things have changed for him.

On being confined to a wheelchair, he said, “The initial shock has worn off, but there are still moments when I ask, ‘Why me?’ It’s a frustrating situation to be in.”

He can no longer do the kinds of things he once took for granted, such as walking around campus and making new friends or playing the guitar — he was part of a band in high school and used to compose his own songs. He has no interest in composing on the computer, he said, but continues to listen to music and see his taste evolve. Over the summer, he even went to an outdoor Radio Head concert at Liberty State Park with friends and, of course, his mother. Asked if it was strange to have her along, he pointed out that he always had such a close relationship with her that it is possible she would have come with them anyway. But only now would both find humor in the conundrum of where, in an outdoor field, to empty his catheter bag.

Now taking classes at Seton Hall University toward his degree from Drexel, Chesman said, “I can see people staring at me and saying, ‘What’s wrong with that guy?’” He said he tries to ignore it. “I couldn’t care less what other people think. It’s like moving into a new town. You just have to have a sense of yourself.”

His mother, who joined her son and a visitor in the family room along with the dog, Lottie, for most of the interview, said her son “has graduated from being sick, but that’s not a free ride to join society.”

There are constant difficulties, from navigating in crowded places, to managing in restaurants, to coping with the weather.

“How will he get to school if it’s icy, or if it snows and a wide enough path isn’t plowed?” Jamie Chesman asked.

There are so many immediate challenges that it’s hard for Chesman or his mother to visualize what his future may hold.

“I have no idea what I’ll be doing five or 10 years from now,” said Chesman. “I live in the moment. It’s all I really can do.”

Right now, he is concentrating on reinventing himself, from figuring out what to do with his spare time (write a blog, listen to Led Zeppelin, play tennis on a Wii with his mother) to considering whether his major in communications even remains appropriate, given his limited mobility and dexterity. If that weren’t enough, every time he thinks about getting a job, he wonders whether or not he will land one out of skill or pity.

“Psychologically, that plays on you,” said Jamie.

Financial catch-22
Finding a career path and a job is only one piece of a complicated puzzle.

“The problem isn’t what Gabe chooses to do. There’s a huge funding issue. If he finishes his degree and becomes a great contributor, there’s a catch-22,” said his mother, who works in sales for McWilliams Forge, an aerospace industry company located in Rockaway.

Chesman finished her thought. “I could either not work and get medical benefits, or get a job and be a regular person — but then we couldn’t earn enough” to cover his care and medical costs.

“I’d go bankrupt if Medicaid cuts us off,” finished Jamie.

Plenty of people have helped them get this far, she said. The donations from friends and organizations like B’nai Jeshurun were crucial, although not unlimited.

“People are getting tired; I’m getting tired,” she said. “People want to move on.”

But the Chesmans can’t. So they started www.daysforgabe.com, a website linked to the National Transplant Association Fund, where people can donate a day, a week, a month of care for Gabe. (Each day of care costs approximately $250.)

Their new life takes a toll on both of them. Jamie doesn’t go out as often as she once did, preferring instead to stay at home with Gabe. She does enjoy taking him out to a mall or wherever she goes, she said, but sometimes, “I just don’t have the energy.”

She also doesn’t take time to go to the gym. Although she received an exercise machine as a gift from a friend, she rarely makes the time to use it. “I yell at her,” said her son. “If I can work out twice a week at Kessler, you have to do it, too.”

In the meantime, Chesman is getting pieces of his life back. He and his mother spent Thanksgiving as they have for many years, volunteering at a soup kitchen and then heading off to visit with family. And he’s made at least one new friend in school.

“It was a little hard at first, making friends, but I got an e-mail someone sent: ‘I’m in your class. I think what you’re doing is awesome. If you need any help, please let me know.’” That helped, his mother said, not least because “it came from the cutest girl in the class.”

In October, Chesman started a blog (www.gabechesman.blogspot.com), where he records what it’s like, as he put it, “to look at life through a new pair of glasses.”

If they have taken anything from the experience, it’s that there are no guarantees in life. “A year ago, we were running on fumes; we were bewildered. We were still in shock,” said Jamie. “Gabe had been at death’s door. Now he’s here, thriving, ready to embark on what comes next. There’s a promise of a future.”

And for now, that’s enough for the Chesmans

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