IT HAS BEEN MORE than a year and her name was Alta Bell when it happened. She has remarried now, her name is Alta Jewell, and she still lives in her handsomely decorated two-bedroom apartment in the Van Ness complex. There are oriental rugs on the floor and crystal glasses in the break-front and candy canes on the rubber.
Nothing abnormal here. Alta Jewell is 37, a pretty woman with olng black hair, large brown eyes, very white teeth. She sits on the blue velvet sofa, her right foot curled underneath her, and then she starts to talk about it. She is very frank, very open. She always has been. She's told school officials, employers and her friends. "I feel pretty strongly that when I go someplace, people have a right to know I have the problem," she says.
Alta Jewell is an epiliptic. She has grand mal seizures-where she falls down and threshes and convulses and is totally out of control for 40 miniutes-and the petit mal seizures that last less than a minute, when she feels a breeze and becomes unconscious.
Alta Jewell has the worst of it. Of an estimated two million epileptics in the , 200,000 have more than one seizure a year. When she was young- er, she had 12 or 15. They are more frequent now-three or four a month. She is in an experimental drug screening program at the National Institutes of Health, where researchers are trying to develop anticonvulsive compounds. Some of the drugs produce terribly toxic reactions. She takes what she can tolerate.
Nothing really helps her and her NIH doctor, Roger Porter, says it will be years before the drugs that now show promise on animals can be used on her. "We thimk of epilepsy as a symptom of some underlying brain disfunction" says Porter. "This manifests itself in an abnormal electrical discharge of the brain cells" that riggers the seizures. "We don't know in her case what causes it."
Over the years, she has damaged her tongue, broken her teeth, cut herself on glass and been unable to remain pregnant. "The worst thing about Alta," says Porter, "is she's so bright and so able, and yet the seizures are so severe."
She is bright and she was so able that she worked herself up from a GsS 5 to a GS 14 doing a GS 15 job in the Department of Labou. Her title was director of the office of management records, a fob she held from October 1972 to September 1977. "Her work was good," says Labor spokesman John Leslie.
What happened is clouded somewhat by personal perceptions and, of course, there are two versions of the story. Alta Jewell says a new administration came in, career bureaucrats were submarining wach other in a struggle for turf, for survival, the climate at work changed, and her condition deteriorattd, and tolerance of it among co-workers evaporated. New people wanted to do things differently. She was cut out of meetings and deprived of staff on the one hand, and given additional responsibilites on the other. For the five or six months toward the end, she was working two jobs and 18 hours a day.
"I didn't want somebody to be able to say, well, Alta doesn't have this report ready on time, because she spent two hours on the floor yesterday," she said.
The seizures increased to the point where she had three or four a week. Once she had a seizure in a hallway used by the secretary of labor. During the fit, she voided, and later people told her that a top official had said she should not be allowed to use the hallway because it might offend the secretary. One morning she found a diaper on her desk.
Then came the talk of disability retirement. She says she filled out papers to get information about retirement eligibility and; she snaps her fingers, like that the papers arrived retiring her.
"There was no pressure on her to retire," Leslie says, "In fact, she was given numerous chances to withdraw her request. There had been extensive counseling.We offered to find other types of employment within the department if she felt she was having diffulty in the position she was in." Alta Jewell says she first heard about the offers for lighter duties when she read a wire service story.
So she retired, quietly, quickly, with 40 percent of her $36,000 salary and spent several "agonizing months" in which she didn't work, although she tried. She applied for a job as a sales clerk in a department store. She told them she was an epiliptic. They told her they were not hiring sales personnel-this was at Chrismas-but would she to be a stock clerk?
"I cried all the way home. It wasn't that there's anything wrong with being a stock clerk. It's that I knew why they wanted me to be a stock clerk."
Alta was 10 when her illness was first diagnosed. Her family was poor...I was bright enough as a young child that people paid attention... People gave me a little encouragement. I'm one of these people that really believes if you try hard enough you can do anything you want to do." Alta went to public high school when epileptics were forced to strky with tutors and she went on a scholarship to the University of Wisconsin when it didn't accept epileptics. She was elected prom queen and laughed with her friends when they said, oh, Alta, what if you have a fit when they're crowning you?
She took her political science degree and built a career in and out of government, in Washington, New York, San Francisco, and finally she went on the staff of the Labor Department in 1972, the same year she was named an outstanding young woman of America. In the '70s she received three government achievement wards. If she had a fit, people around her generally dnew what to do. She carried a tongue depressor in her purse and dept an extra extra set of clothing in her office.
Alta Jewell knows that epileptics are stigmatized, that they frighten people. Her doctor says, quite simply, there are jobs epiliptics can't hold-such as greeting the public. But there are jobs they can hold when surrounded by coworkers who are understanding.
She does not want her old job back. That's gone forever. The experimental drug program she is in now prevents her from full-time work and she is taking drugs whose effects five years from now are unknown. She has every reason to believe her health could deteriorate. She wishes her retirement had been handled with "dignity and respect." The Labor Department says it was, she says it wasn't but that's not really the point.
Ask Alta Jewell if she would hire herself, and she hestitates, she says she doesn't know. "I think because I work so much harder than anyone else does, I think I'd say yes. My productivity level is very high. If it were not, I would probably say no. I'd have to question the amount of disruption it would cause to other employes."
And that's the point. Alta Jewell, who can look back on a lifetime of accomplishments, isn't looking forward to them anymore. A person who thought you can do anything you want if you try hard enough, has been made to see herself as a handicapped person. "I'd been spared a long time."
She called it a tough question. I wish she had given a different answer.