Illness as luxury

photographs by Mark Ostow, text by Yvonne Abraham

Trinidad Pagan, an auburn-haired, sweet-faced woman of 45, sits perfectly still at her kitchen table in a sparsely furnished walkup on the wrong side of Lawrence. She is surrounded by family: Juan Pagan, her effusive, ever-gesticulating husband of seven years, a round 29-year-old with blue eyes and a loud laugh; her two daughters, 19 and 20; and her two grandsons, one four years old and the other four months. All of them are having a good time, enjoying the children, giggling at jokes.

Trinidad tries to join the fun, but manages only a weak smile. She talks sometimes, in a barely audible voice that comes from the very top of her throat. Mostly, she slumps and listens, biting off what's left of her nail polish, or rubbing her lined face with the heels of her palms.

Trinidad has been this way for three years: twice, she tried to kill herself, and ended up at the Bayridge Hospital, in Lynn. But she's doing better than she was. As long as she has her medication -- Paxil and Haloperidol -- she's all right. She can't work, and she can't enjoy herself the way her family does, but she can get by. Especially because she has Juan, who puts a hand on her shoulder whenever she seems to be fading into herself, and makes appointments for her at the doctor, and translates the world beyond the apartment into Spanish.

But he can only do so much; she needs the medication. Without it, Juan says, "Everything bothers her. When the depression takes her, everything makes her cry. She leaves the store, and she doesn't even remember how to get home."

But Juan doesn't know whether he'll be able to get his wife more medication when this batch runs out. He works -- at a pharmaceuticals company, of all places -- and makes enough to stay off the welfare rolls, to pay his rent and his car payments and normal bills, and even enough to look after one of Trinidad's daughters and the daughter's son, but barely. Yet he doesn't have medical insurance for himself or for Trinidad, and he can't afford the regular psychologist's visits and the pills, which together cost hundreds of dollars a month. Especially not when Trinidad also needs to call her sister in Connecticut when she's feeling low. In bad months, the phone bill hits $400.

Juan's is a common problem among families just surviving: they may be scraping by on the lower rungs of the working class, but Trinidad's depression, that most middle-class of afflictions, is beyond the family's means, a champagne illness on a beer budget. And yet Juan has been denied Medicaid and MassHealth several times because, on paper, he's not poor enough.

"I went to welfare, and the American lady told me, `Sir, you are big and fat and red, and you can work,' " Juan recalls. Trinidad has been denied Social Security because she's been deemed capable of working, although Juan is appealing that evaluation right now.

Indeed, Juan has gone back to Social Security again and again, determined to get help. "I don't even ask for help for me," he says. "I ask for my wife. They tell me, `Sir, you don't qualify for that' -- even before they give me the application! I'm paying my taxes, and I'm saying, if I pay them, I can't ask for help?"

The clerks don't see it that way, and he gets frustrated and sometimes yells at them, which he always regrets later. His grasp of English makes those visits doubly frustrating. "They make me talk bad," he says. "But I'm so excited inside, it hurts." One clerk had security eject him from her office.

With enormous effort, Trinidad pushes herself up from the table and pads slowly into the pantry to prepare some food for her youngest grandson. She brings back some mashed potatoes, touching Juan gently on the shoulder as she passes him, as she always does. She lets the baby suck a little potato off her finger. Another of those faint smiles.

Juan says the doctors think this is as good as it's going to get. He doesn't mind that, as long as he can get help to prevent it from getting worse.

"If we get help, we are gonna be all right," he says. "We're not asking for money. The most important thing is Medicaid."