Loss of Self-Esteem : AIDS Victim Despairs at Being Fired

BOSTON —  On the day AIDS patient Jeffrey Mullican returned to his job after spending several weeks fighting off a discouraging second attack of pneumocystis carinii pneumonia, his boss called him into his office.

Mullican, he said, was being fired.

The board of directors of the small trade association for which Mullican was an executive “just didn’t feel comfortable not knowing how well I could perform my responsibilities with the uncertainties of being sick,” he was told.

“It hurts. It’s like being put out to pasture. I feel like I’m one step closer to the grave.”

Mullican’s experience has become all too familiar for AIDS patients across the country: As they struggle with the physical and emotional depredations of a thus-far invariably fatal disease, many also lose their jobs. And this harsh reality becomes itself one more blow in their unequal struggle.

It also reflects the complex issues and emotions raised for patients, colleagues and employers when AIDS must be confronted in the workplace. The issues range from co-workers’ fears about casual transmission, which medical experts consider unfounded, to employers’ concerns about job performance that bring widely varying responses from U.S. companies, especially small firms such as Mullican’s.

Operating beneath the surface, there also tend to be strong but often ill-defined feelings about morals, sexuality and death.

Other Issues Conjured

“AIDS is never about illness alone,” said Tom Stoddard, executive director of Lambda Legal Defense and Education Fund, a gay rights organization that often represents AIDS patients in employment disputes. “It always conjures up other issues--sexual orientation, use of drugs and morality in general.”

For Mullican, losing his job was a daunting turn in the rocky journey that has been his life since he was diagnosed as having AIDS last April. He had one bout with pneumocystis then, recovered and resumed work without substantial difficulty until stricken again last November. Pneumocystis, caused by a parasite, is a form of pneumonia that frequently attacks and ravages AIDS patients, whose immune systems are too crippled to fight it off.

In the grim calculus of AIDS cases, Mullican’s eight months of relative good health between bouts of pneumocystis and the relatively mild nature of the second episode are considered unusually good. Even this good news is tinged with shadows, however: It apparently stems from the fact that Mullican, as part of a clinical field trial, has been receiving the drug azidothymidine, or AZT, which he desperately hopes--but cannot be sure--will keep him alive.

AZT, while apparently beneficial, remains an experimental drug. Since it has been in use for less than two years, its longer-term efficacy and possible side effects remain unclear.

And with a disease as terrifying as AIDS, the emotional and psychological effects can be almost as harrowing as the medical problems. Mullican’s discovery that he had AIDS plunged him into months of depression, a relentless melancholy that permeated almost every aspect of his life. The second attack of pneumocystis came just as he had begun to regain a measure of hope about his future.

Financial Settlement

The economic impact of being fired is being mitigated by a financial settlement that the two sides intend to sign shortly, but the dismissal struck hard at his identity and self-esteem.

“My self-worth was inextricably tied to my work,” he said. “It gave me a place to go, something constructive to do. It took my mind off of my health situation. It gave me a sense of normalcy, a sense of belonging and of being productive.”

As Mullican’s physician, Dr. Robert T. (Chip) Schooley, who specializes in AIDS treatment and research at Harvard’s Massachusetts General Hospital, has learned, caring for AIDS patients extends far beyond the prescribed round of medical tests and procedures. AIDS sweeps doctors and patients alike into a welter of demanding emotional and social problems.

“To do it right requires a lot more involvement than any other disease,” Schooley said. “These patients find themselves under a lot more pressure. In addition to the pressures of the illness, they have the pressures of maintaining employability, insurability and relationships with their families and others.

‘Just Shouldn’t Happen’

“No one should have his job taken away or his privacy removed over something like this. If I can help, I do it. These sorts of things just shouldn’t happen.”

Schooley believes a doctor’s commitment to his patients beyond hospital walls is neither unusual nor a departure from the way good medicine should be practiced.

“AIDS has brought new issues into my life, but dealing with them is not something I didn’t expect, or didn’t want to do, when I went to medical school,” he said. “There are qualities that we should all have as people--they aren’t taught in medical school.

Fired by those convictions, Schooley has become an articulate advocate for his AIDS patients, often writing letters or meeting with their employers and co-workers in an attempt to educate them about the disease and reassure them that they have nothing to fear from normal association in the workplace. Sometimes he has been successful, sometimes not.

“People get exposed to many ‘facts’ from many different sources and they may assimilate these as facts,” Schooley said. “If you ask them how AIDS is transmitted, they’ll recite what they’ve read in the newspapers. But sometimes when they get involved on a personal level, they don’t behave as if they believe the facts they recited several days earlier.”

Casual Contact Held Safe

In the six years since the start of the AIDS epidemic, researchers have accumulated a massive body of scientific evidence indicating that the disease is not transmitted through casual contacts such as those common in the workplace. AIDS, or acquired immune deficiency syndrome, is primarily a sexually transmitted disease, commonly spread through anal and vaginal intercourse. It also has been transmitted among intravenous drug users through the sharing of contaminated hypodermic needles.

Despite a local law prohibiting discrimination against AIDS patients, Mullican, like many others in similar situations, has decided not to sue his employers. Instead, he and his company--which he has agreed not to name publicly--have reached the monetary settlement, a common resolution in AIDS employment disputes.

“I would dearly love to sue, but it would take five years,” Mullican said grimly, “and I don’t have five years.”

Suits May Outlast Lives

Stoddard, of the Lambda Legal Defense and Education Fund, said Mullican’s attitude is typical of many AIDS patients. “A legal remedy on paper, such as an ordinance, may offer very little in these circumstances because patients may be too ill to proceed--they may worry that a lawsuit will extend beyond their lives,” Stoddard said.

“They may lack the energy. One needs to be especially strong and be willing to fight to participate in a lawsuit of any kind. These are people who are already in very bad circumstances--they are fighting for their lives. They have more important considerations on their minds. They may simply feel it’s not worth their time or limited energy.”

Although legally a settlement “is not an admission of wrongdoing,” Stoddard said, many employers “don’t want to admit a settlement because that will advertise they have had someone with AIDS.”

Further, for many AIDS patients, “coming forward may be viewed as a declaration of sexual orientation, or sexual activity,” Stoddard said. “So discrimination takes place every day in every community . . . and yet the number of actual lawsuits is very small.

“These cases rarely reach the legal system to begin with, and even when they do, they usually result in a quiet settlement.”

Mullican had worked for the small trade association for slightly more than two years. He was one of four executives in a firm with only about a dozen workers altogether. On his first day back after recuperating from the second attack of pneumocystis, Mullican stuck his head through the open door of his supervisor’s office.

“I’m here,” Mullican said. “I’ll try to stay the full day, or as long as I can--but I don’t know. I’ve been getting tired late in the afternoon.”

His boss, as Mullican recalled it, replied: “OK, but in a few minutes, I’d like to sit down and talk to you.”

When Mullican returned a short time later, his supervisor--who had been supportive of Mullican since learning that Mullican had AIDS--lamented that he was “stuck with having to do all the dirty deeds,” then told Mullican that the board of directors had decided to fire him.

Unhappy at Job

Ironically, Mullican had been unhappy working for the company for a long time and had already begun searching for another job. Still, he said, “it’s one thing to decide on your own to leave a job--and quite another to have that decision forced upon you by somebody else.”

A company official, who requested anonymity, said the board’s decision to dismiss Mullican was based on its concern over “the prospect that we would continue to be paying him for extended periods of time during which he would be unavailable to us for work.”

“He missed the entire month of December and wasn’t able to come back until the second week of January--and he was still pulling full pay. He comprised 25% of the executive work force in the company, and the three others were doing his functions as well as their own. It was very difficult to continue to run operations with him unable to be available.”

Still Weak

Although recovered from the second pneumocystis episode, Mullican is also weak. He acknowledges that he has not recovered all of his former vigor and stamina.

Nonetheless, Mullican--noting that “nothing was said about performance”--said he believes the board’s decision was based more on homophobia than on his extended absences. Until he became ill, no one in the company knew he was homosexual. Indeed, the company official said: “I dealt with Jeff on a purely professional basis. I never suspected it. No one here did.”

Mullican insisted: “If I had cancer, I know they’d bend over backwards to accommodate me, because there was someone there who had terminal cancer--and they supported her. The sum total of what they are saying is: ‘Go away to die, but not in our sight.’ ”

The company official said the employee suffering from cancer “had been with the company 25 years--compared to Jeff’s two years. Also, that person was not an executive, so there was less of a cost factor. There was a big differential between that person’s salary and Jeff’s. During the course of that individual’s cancer, that person was out of work less time than Jeff has already been out of work.”

Magazine Interview

He said he had told Mullican at the start of his illness that he could stay at the company as long as he was able to work. In fact, an early attempt by an internal employment staffing committee to get Mullican to leave was squelched, the executive said.

The board’s patience was stretched, the company official said, by a local magazine interview Mullican had given. Without naming his employer, he discussed his illness and made some remarks critical of the company.

“When he came back after his first illness, everyone welcomed him back,” the official said. “They sat in the lunchroom with him and had lunch--nothing was different. Jeff felt very free to talk about his disease here--nobody was treating him like he had the black plague.”

But after the article came out, “people were upset,” the official said. “They felt they had given him the support he needed and then he kicked them in the teeth. That was the beginning of the end.”

Article Called Excuse

Mullican said he believes the article was just a convenient excuse to get rid of him. “I think the old guard cannot stomach the fact that I am gay,” he said. “I feel a large part of what happened to me at work had more to do with their learning I was gay than learning I had AIDS.”

And a source knowledgeable about the case said some members of the board were upset about the fact that Mullican is homosexual.

The company official insisted that the decisive issue was Mullican’s ability to work. “It wasn’t an excuse,” he said. “We were running short-handed. Otherwise, they might not have noticed just how much time he was missing. I’m not saying everyone should sympathize with employers, but look at our position--how would you handle it?

“These people (the board) are all businessmen and have all been involved in lawsuits before. They know that, even when you win, there are very few winners in lawsuits. They would much rather see Jeff get the money than the lawyers. They never said: ‘Let’s fire him.’ They said: ‘Let’s see if we can give him money in a settlement.’ ”

Mullican, no longer tied to a job, would like to move from Boston--preferably to the West Coast. But he is reluctant to leave Schooley’s care and does not want to be far away from his parents, who live outside Washington.

“If I were to move across the country, it would be like turning my back on them,” he said of his family. “And I need them. I want them.”

He would like to work again but doubts that anyone would hire him.

“Getting fired is going to make it very hard for me to find another job that would be challenging,” he said. “And it would be too frustrating for me to take a lesser job. I don’t feel right about not working, but if I take a menial type job, it will produce a lot more anxiety for so much less money. But I don’t like the idea of not being able to provide for myself.”

He sighed, growing discouraged. “I don’t have that much longer to live anyway, so what difference does it make? I’m not bothering to make any plans beyond one year.”

‘Other Avenues Open’

The job settlement will provide some money for living expenses, “and my family has assured me that they’re not going to let me starve,” he said. “I guess there are other avenues open to me--I can qualify for unemployment.” (Mullican was not eligible for disability leave from his firm because he had worked only two years--not long enough to qualify.)

Lately, his emotional depression has returned. Last week, a friend from his first AIDS support group died. Mullican found himself unable to attend the memorial service, avoiding what he felt may have been a painful vision of what lies ahead for him.

“I feel like I’m living on a precipice,” Mullican said. “Every waking moment I’m on the edge and every once in a while I look over the edge. Yesterday, walking home from the park, I almost started crying. Every time I think about how precarious my situation is, I get upset. I think: Why? Why? It just doesn’t make sense.”

Takes Antidepressant

He remains frustrated over his physical condition, that he is still tired most of the time and not sleeping well, his nights punctuated by bad dreams. He has begun taking the antidepressant drug Ritalin, prescribed by his therapist and approved by Schooley.

“It enables me to get out of bed in the morning,” Mullican said. “If I don’t take it, I’m totally dragged out.”

After the first episode of pneumocystis, he said, “I regained 90% of myself. After this one, I’m up to 75%. I seriously question whether I’ll ever function at 100% again. If I reach a point where I can only function at 50%, what good is life at that point? I’m 32 years old, and it’s a chore for me to walk three blocks.”

Still, Mullican has more than outlived the average life span of AIDS patients with pneumocystis, who typically survive no longer than 35 to 40 weeks. Thus far, the longest surviving AIDS patients on AZT have taken the drug since July, 1985.

Doctor Pleased

Schooley is pleased with Mullican’s progress.

“Given where he is, he’s doing awfully well,” Schooley said. “I’m impressed with how he’s getting himself back on his feet again. He’s got a lot of drive, and I really admire him.”

Because Mullican was part of the original multicenter AZT study, he will continue to receive the drug free from its manufacturer, Burroughs Wellcome, even after the drug is licensed--an action that is likely before April. This was one piece of good news, since the drug is expected to cost patients as much as $10,000 a year.

Meanwhile, Mullican is wrestling with the dilemma of whether to stay in Boston.

Recently, he spent a week with friends in San Diego, where he considered moving. Before he left, Schooley called the University of California, San Diego, physicians conducting the AZT study there and told them about Mullican. Should Mullican move, Schooley said, Schooley would continue to be involved in his case. But he would no longer serve as Mullican’s primary-care physician if he becomes ill again.

Something Missing

Mullican met with the San Diego doctors. He was impressed and said he felt confident that they could provide excellent health care. Still, he said, something was missing.

“I didn’t feel I’d have anywhere near the personal relationship with them that I have here with Chip,” he said. “Chip really is my hero--I trust him implicitly. He respects me as a person, and he respects my independence. He doesn’t look at me as a number.”

He paused. “With AIDS, the probability of dying is so high that most physicians don’t form bonds with their patients,” he said. “That’s not the case with Chip. And I’ve found that bond essential in helping me deal with all of this.”

L.A. County Board of Supervisors authorizes opening of two more AIDS test sites. Part II, Page 1.