December 21, 2011

USA: Living With Multiple Sclerosis, and Separated From the World by a Stairway

NEW YORK, NY / The New York Times / Region / December 21, 2011

Kept from the rest of the world by a stairway
As Diane Kessler's multiple sclerosis progressed, she became increasingly homebound.
 Michelle V. Agins/The New York Times
By Mathew R. Warren

Twenty-one steps keep Diane Kessler a virtual prisoner in her home.

Ms. Kessler, who learned she had multiple sclerosis in 1991, can no longer make her way down from her second-floor apartment in Elmsford, N.Y., on her own. To go anywhere, she must depend on her son or a network of neighbors to carry her.

“I don’t say ‘Why me?’; I don’t look at it that way,” Ms. Kessler, 54, said. “I don’t have a lot of energy and my legs get weak, but my arms are pretty strong, thank God.”

Though Ms. Kessler uses an electric scooter most of the time, she tries to walk on level ground as much as possible with the aid of her arms. On a recent afternoon in her apartment, in Westchester County, she demonstrated her technique. Propping up her thin frame against the kitchen counter, she took a step and grabbed onto a wall, then swung her other leg around, placed her weight on a chair and took another step, reaching her scooter.

“I try to do as much as I can because, psychologically, it’s good for the head,” Ms. Kessler, a New York City native, said in an accent that revealed her Brooklyn upbringing.

Ms. Kessler depends on her son or a neighbor to help her go to the doctor or to the grocery store.
Michelle V. Agins/The New York Times
While the trip down the stairs that run alongside her two-story building has become too dangerous for her alone, she can still make the trip up, pulling herself along the railing — a feat that can take up to half an hour.

“Sometimes I wish I could just stand up and walk and do everything,” she said. “I try, I really do.”

Ms. Kessler lives with her 34-year-old son, and aside from trips to the doctor or the grocery store, she spends most of her time in her home, watching television and playing with their 11-year-old cat, T.C. (Too Cute), and 3-year-old golden brown pit bull, King.

In recent years, Ms. Kessler has developed a special relationship with King, battling him in tugs of war and exercising her arms in the process.

“He’s very comforting,” she said. “I talk to him when I’m upset. I tell him everything. Some things you don’t tell people, even your closest friends.”

Ms. Kessler, who until 1997 worked as an accounts-payable secretary for a wholesale food distributor, is not one to complain, but she admits to missing one thing that the disease has taken from her.

“I miss my heels,” she said, referring to her shoes. “When you have M.S., you don’t feel like a woman.”

Still, she said, she does what she can. It takes her two and a half hours to fashion her neatly plucked eyebrows, using one hand to hold the other to control the shaking. She also trims and feathers her own bangs. She can afford to go to the beauty parlor only once or twice a year, she said.

Ms. Kessler receives $547 a month in Social Security disability benefits and $1,500 in alimony from an ex-husband, but that will end in December 2012, she said. The rent for her two-bedroom apartment is $1,326 a month. Her son is currently unemployed.

Medicare pays for some of the costs of her medications, but not all. When she was struggling to pay her bills, Ms. Kessler turned to Westchester Jewish Community Services, a beneficiary of UJA-Federation of New York, one of the seven agencies supported by The New York Times Neediest Cases Fund. In July, WJCS drew $450 from the fund to help Ms. Kessler pay outstanding phone and electric bills, and to fill a prescription.

She will become eligible for Medicaid once her alimony runs out next year, she said, and she is working on other housing options.

“What’s somebody like her doing living in a place like this?” a neighbor, Steve Beemer, asked recently, standing atop the steep set of stairs that leads to Ms. Kessler’s door. Mr. Beemer, 62, a glass cutter, is one of those who carry Ms. Kessler down the steps.

“She doesn’t weigh anything,” he said, scooping her up in his arms as they both laughed. “She’s a sack of potatoes.”

Ms. Kessler, settling onto her scooter, said she hoped one day to have her own little place, “with a backyard.”

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