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In His Own Voice Thoughts from an Employee with a Terminal Illness

May 1, 1997
Related Topics: Health and Wellness, Featured Article
My name is Robert. I'm 43 and have AIDS. I've left work on disability because of extreme fatigue and some cognitive difficulties-both from HIV itself and from medications. Months earlier, I personally told everyone at work that I was living with AIDS. But managing my coverage on the group long-term disability plan and asking for an accommodation of my disability were different. With those, I needed help.

I was a disability specialist at California State University, Los Angeles. My job was to determine appropriate accommodations for disabled students, so I understood the accommodation process. When I realized my health was failing, I went to my union for help with my long-term disability coverage and asked the administration for an accommodation (as defined in the Americans with Disabilities Act). My union helped me with the disability plan. But even though my immediate supervisor supported my request for a reasonable accommodation, the affirmative action manager didn't support a simple request for a fax machine at my home office. So I ended up having to go to the Department of Justice to settle the case. I succeeded, but it took nine months and a whole lot of T-cells. I'm bright enough to be able to do this, but I would've liked to have had some guidance.

Fortunately, the benefits specialist in our personnel department worked with me. She knew my diagnosis and walked me through the process. The payroll clerk also made sure I never lost an hour of sick time or vacation time. The person who handled registration and the secretary in the department would review students' cases with me before the students came in to compensate for my cognitive difficulties. I couldn't have made it without my co-workers. My co-workers and personnel staff were great. The managers were the obstacles, and fighting the administration was draining. But 120 co-workers were at my retirement party.

I've had wasting syndrome and nausea for the last six months. The virus has been taking over. My viral load is more than 1.5 million, which is very uncommon. (A viral load in excess of 100,000 per cubic milliliter of blood is not uncommon for AIDS, according to medical experts). I've just begun a new antiviral and have new hope that I may be around.

I love my life, but I realize I may lose it.

Robert (his real first name) -- as told to Nancy Breuer.

Workforce, May 1997, Vol. 76, No. 5, p. 62.

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