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Testing the Waters in the Workplace

December 1998

Javier Gomez told himself he would go back to work when combination therapy pumped up his T-cells, dropped his viral load, and kept him "feeling good" for a year.

A day before Halloween, six years after he left work on "temporary" medical leave, he kept his promise.

Javier is now back at the Center for the Partially Sighted, working as social services coordinator. It's the same job he had when he first went to work for the Center in 1982.

"They knew the job wouldn't be very challenging," he says, "but it's a good way to get reintroduced to work. We look at it like an experiment."

Gomez is working 30 instead of 40 hours a week, and makes less money than he did in his last job as Rehab Instructor. But for Gomez, like a lot of people living with HIV, going back to work was about more than money. "I wanted to get a definitive answer to the work thing," he says. "It's an important part of who I am. I wanted to know if it was in my future. I didn't want to stay with the what if, what if, what if . . .

"I'll be getting my first paycheck in six years, and thinking about it gets me on the verge of tears. I never thought I'd be doing this, and I think about all the people who didn't get this chance.

"And then there are all the fears, the uncertainty about whether this is going to work."

Used to uncertainty

Uncertainty is nothing new in Javier Gomez's life. It began in 1982, when he started seeing an HIV specialist, and found his T-cell counts were abnormally low.

He remained healthy until 1990. Then his sister ("the most important person in my life") died. Next were his friends, dying of AIDS. In 1992, Gomez came down with severe shingles, recovered, then went through a long slide: chronic sinusitis, bacterial pneumonia, a second case of shingles, and a profound depression.

When he left his job for a six-month break, he had no intention of staying out permanently. Then his long-term disability insurance forced him to apply for Social Security. "I never thought I'd get it," he now recalls. "I'll never forget when I got the letter approving me. It took some getting used to, the idea of being permanently disabled, and it scared me."

Keeping busy

Disabled and out of work, Gomez joined a support group, started seeing a therapist, and volunteered one day a week at his old job where he found "wonderful support." He also kept busy at home managing his mother's health (she is diabetic), but says he "wasn't feeling as good as he thought he should."

Finally, a psychiatrist prescribed anti-depressants. "I was more depressed than I realized, and had no time to think about it."

Gomez started Crixivan as soon as it came on the market, but the results were mixed. His viral load remained high, he developed pancreatitis and chemical hepatitis, his energy remained low from depleted testosterone, and he grew a "buffalo hump," a symptom of lipodystrophy.

A year ago, Gomez changed meds, and finally settled on a double protease inhibitor, Norvir (ritonavir) and Fortovase (saquinavir), along with d4T, ddI, hydroxyurea and Viramune.

"When they tested me three months later, my viral load was undetectable, and stayed that way for six months," Gomez says. "Then they did an ultra-sensitive test and since then I've stayed below 25 copies. I told myself if I could stay there for a year and felt good, apart from the lipodystrophy, I'd think about work.

"I let my employer know at that time . . . and it turned out they needed someone doing the original job I had when I started there."

Frightening body changes

Gomez decided he would do something about the lipodystrophy before returning to work.

"Everyone brushed it off as a small price to pay for saving your life," he says. "I got angry with them . . . and then one day I woke up without cheeks and that was frightening. I just went to bed one night with cheeks, and woke up with dimples."

Gomez tried growth hormone to restore his body, but his tolerance ran out after 11 weeks. So one week before going back to work, he underwent "fat redistribution" to move "what little" stomach fat he retained to his face.

The lipo was not Gomez's only concern about returning to work. "I had really good benefits in place which I'm now letting go of," he says. "And with a reduced work schedule, I'm not earning much more than I was collecting."

Considering consequences

Gomez applied for his benefits through AIDS Project Los Angeles' Benefits Program, and went back there to plan his return to work.

"There was a point where I thought it was going to hurt me financially," he says. "I was going to be cut out of ADAP (the state AIDS drug program). You really want to take a close look at how going back to work impacts your medical care."

He also monitors his health, including his drugs, carefully, now that he is back on the job.

"I put my meds in the community refrigerator and take them during my lunch hour or whenever they're due. I've been very open about it and it's not a problem.

"Some things I can take care of myself. It's easy for me to remember I'm different now. I'm not returning as the person I once was. My biggest struggle is taking care of myself when I work, and my body tells me when I've overdone it."

Participation in an ongoing support group at AIDS Healthcare Foundation helps Gomez with stress. "I find I can sound out a lot of fears there," he says.

He also finds an upside in his changed circumstances. "It's interesting to go back to work and not be on a career track . . . my motives and goals are different. Before I was building a career. This time around, it's more about providing a service and making a connection to the people I work with and the people we serve.

"I'm not as stressed out now, and don't feel I have to be in control of everything. What's most important is what is in my life here at work, and what we do."

Aware of advantages

Gomez is well aware his situation is optimal. He returned to a former employer, so disclosure and explaining gaps in his resume were not an issue.

"It really helps if at least your boss is on your side," he says. "I don't think you have to, but it's comforting to disclose and know that they will stand by you. It gives you a reason to stay, and I have found that being up front has gotten me the best results. That's my own experience."

Given the risks in returning to work, Gomez feels that it is worth it, but on one condition: "If people are willing to risk benefits, then the work should be something you really want to do. It should be about satisfying something in you because in the taxable world, it's hard to top benefits, so work should have some personal meaning."

This article has been reprinted at The Body with the permission of AIDS Project Los Angeles (APLA).

This article was provided by AIDS Project Los Angeles. It is a part of the publication Positive Living.
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