In a wheelchair, and covering a lot of ground

When three-year-old Olivia tickles her Uncle Gabe’s feet with a feather, someone has to let him know what his niece is up to, so he can laugh in response. Often, she does it herself.

Gabriel Chesman, now 24, is paralyzed from the chest down, the result of a freak illness that caused a stroke in his spinal cord in September 2007, when he was a junior at Drexel University in Philadelphia. The illness nearly cost him his life.

Intensive therapy at the Kessler Institute for Rehabilitation in West Orange, a makeover of his home in Springfield to accommodate his needs, and a wheelchair-accessible van donated by Congregation B’nai Jeshurun in Short Hills, where his family belongs, were only the beginning of Gabe’s grueling journey back to vitality. After the physical healing and the emotional battles, there were plenty of false starts.

There was “Days for Gabe,” a blog about living with paralysis that he ultimately gave up as “too narcissistic”; a failed attempt to create a support group; and an effort to finish college at Seton Hall University and get his degree. (At one credit per semester, it was slow going, expensive, and — in that he had already finished the required coursework for his major — not that interesting.)

So he skipped the college degree and went right to work for a public relations firm in New York City. Now Chesman is a freelance social and media consultant with Tiller Cause Commerce and Communications; it’s his first job and he loves it.

Since NJJN last spoke with him in April 2009, Chesman has covered a lot of ground. Back then he was still dressing up for a visitor, as if to prove his wellness. He offered a forced optimism that perhaps belied his obvious underlying bitterness. And his mother, Jamie, was still adjusting to the dramatic shift from empty-nester to parent of a 20-something quadriplegic, contemplating what kind of future lay ahead for them.

What a difference a year can make. A visitor arrived to find Chesman in his “man cave,” a repurposed garage that now serves as his office and hangout, furnished with couches, bookshelves, desk, computer, flat-screen television, cozy corner for the family dog, and even toddler chairs for Olivia, the daughter of his sister, Danielle, and her husband, Kareem, who live in Bridgewater.

Chesman, in a T-shirt and jeans, has the casual looks and relaxed manner of any other 24-year-old, even if he is in a wheelchair. His mother, also in jeans and a T-shirt, nursed a burn on her hand from their dinner cookout earlier in the evening. No one dressed up for the occasion — well, not exactly. Chesman had chosen a favorite shirt sporting a favorite symbol: gray, it has a graphic image of a phoenix rising from the ashes.

Chesman’s attitude is realistic and thoughtful, with underlying hints of optimism.

Instead of expressing anger over not being able to play guitar, he demonstrates how he uses what capability he has in his fingers to type — from his public relations blog to tasks he must do for work, like an analysis of social networking demographics.

He discusses the pros and cons of his limited typing ability and weighs them against the awkwardness of using a dictation machine. Most days he telecommutes to work from his garage space. He can occasionally make it into Tiller’s New York office, but it’s not handicapped-accessible, and entering the building can be difficult. Instead of hiding his frustration, he laughs about taking up the entire area and essentially clearing the sidewalk until he gets inside.

Chesman has figured out how to move his left arm and work around muscles and joints he can’t use. By last fall, he was picking up jellybeans.

“We don’t know how he was doing it,” said his mother.

Working with a specialist, he has undergone elective surgery to capitalize on this ability. He can now move his arm and flex his hand; eventually, he should be able to grasp objects and even make a fist. Ultimately, his mother said, she hopes he’ll be able to sign his name, feed himself, even shave himself, things he needs his full-time caregivers to do for him now.

Catch-22

He chats easily with a guest, shows no signs of fatigue even after an hour and a half. The visits no longer focus solely on his physical condition but on the rest of his life, from his general philosophy — “It could be worse” — to his take on religion: “I don’t believe this mystical magical hoopity hoopla exists. But I do believe in what is the same across every religion, which is, in essence: Be a good person.”

But he also acknowledged his appreciation for all that members of B’nai Jeshurun have done for him — including that van, fund-raisers, and the moral support Rabbi Matthew Gewirtz and the congregation have offered — and noted with some amazement that he has spent more time at the synagogue post-accident than in all the years before — attending services, lunching with Gewirtz, and participating in social action projects.

Still, his life is not easy. Getting around takes a lot of effort. There are no spontaneous jaunts into the city for a day or evening, everything must be planned out, he can’t drive, and his caregivers have to come with him if he plans to be gone for any length of time in order to change his leg bag and provide other services.

Socializing remains difficult and disappointing for Chesman. While his physical limitations are real, he said, he feels left out, often unnecessarily, by his old friends. “A lot of my friends in this area spend a lot of time in Manhattan. They assume I couldn’t go but that’s not the case. They just assume. They hang out and do the bar scene,” he said.

And there’s the issue of disability benefits: If he earns more than a very small amount of money, Chesman will loses his state and federal disability payments. But he’d have to earn about ten times that amount in order to cover the payments himself. “We just can’t figure it out,” fretted his mother. Calling the issue “an enormous hole,” Chesman pointed out that a large percentage of the disabled population has the same problem. His mother called the situation “disgusting.”

She continues to work full-time to retain their health benefits; the family also continues to rely on fund-raising to cover the cost of the caregivers (see sidebar).

Eventually, mother and son hope to be able to use the fund-raisers to help other people with spinal-cord injuries. In the meantime, they both would like to put the knowledge they have gained over the last three years to work in a different way. “There is no guidebook that explains what to do when your 21-year-old becomes so catastrophically ill,” said Jamie.

So far, they are still trying to figure out how to connect with people who need help.

Meanwhile, when Chesman feels down, there’s always Olivia. “I’m just a goofball with Olivia,” said the doting uncle.

His mother said, “I love having Olivia because she doesn’t know the difference between Gabe in a chair and Gabe out of the chair.”