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High School Teacher with AIDS; SCID/Genetics Research Experience; HIV Counselor
Before I found out that my high school Spanish teacher was HIV-positive, AIDS was not much more than a bunch of statistics to me. The disease, its course, and the people afflicted with it seemed alien to my life-as distant as the continent from which the virus was supposed to have sprung. Then Mr. T. stopped coming to school. When he reappeared a few months later to wish us well on the advanced placement exam, his face looked sallow. His voice, once a thunderous bass that rumbled in class and reverberated down the hallway, was weak and thin. Seeing my teacher looking so unfamiliar was my shocking introduction to AIDS. I felt as if I were in the presence of a stranger, this mysterious disease, who was insulting Mr. T. right in front of my eyes. I wanted to know who this stranger was.
I entered college, believing that biology could explain to me why life’s processes went awry. I learned that the body is exquisitely complex, but I was reassured by the underlying theme of systems. Even if I didn’t know all the molecules and connections, there seemed no denying that a fundamental order existed.
From physiology to cell biology to molecular genetics, my classes presented smaller and smaller systems to explain the origins of diseases. Finally, in genes, with their innocuous four letter alphabet, I felt I was learning the foundation of it all. If biology provided the keys to understanding life, then genetics must be the master key (if only we could see some of the doors we were trying to open). During two summers in a research laboratory at The Children’s Hospital of Philadelphia, I helped track down the gene causing X-linked severe combined immunodeficiency (SCID).
Even though AIDS and SCID are very different diseases (SCID is exclusively hereditary), each compromises the body’s defense mechanisms against foreign pathogens. I felt this was a significant connection. In SCID, I was meeting a distant cousin of AIDS. Learning about common themes of immunodeficiency disorders, such as the perils of opportunistic infections, helped me to begin to understand what had happened to Mr. T. In the SCID laboratory, and in classroom seminars on infectious diseases, science was helping me demystify disease.
In the same year that Mr. T. became ill, my grandfather died during bypass surgery and my father underwent chemotherapy and radiation treatment for colon cancer. Since then, disease has had a human face for me. To better understand how people deal with disease or the fear of disease, I’ve become a volunteer counselor in an HIV clinic.
Speaking to people who come in for free testing, I’ve found that discussing HIV, getting the scary words (and acronyms) out in the open, is a way for many people to release their anxiety. Through expression in their own words, they make the disease real, which helps them to see that it is also preventable. Then, they often take the next step, making specific goals to maintain their health, whether they are HIV-negative or positive. What science in class and lab did for me in confronting the difficult issues of AIDS, talk does for my clients.
As an HIV counselor in an anonymous clinic, I feel both the potential of my role and its limits. I can’t go home with my clients to remind them to keep condoms under the bed, but I can help them make a plan-something that could stay with them much longer than the information I offer. At the end of one session, one client surprised me with his response to a question I had asked: “What do you think you’ll do with the HIV information?” There was a silence in the counseling room as the client pondered, but I recall sensing the comfort of the silence. This was a session that seemed to be producing the potential for a breakthrough (not every session does), and I waited patiently. He responded, “I think I’ll ask my girlfriend to use her own needles.” Then, the client thanked me for having asked the question.
I was thrown. My client proposed a strategy for reducing his HIV risk, but he didn’t address what was likely his main issue-heroin use. Should I validate his plan? In effect, that’s what I did, because I didn’t challenge the drug issue. When he left the clinic, I practically wanted to follow him out the door. I wondered if I would ever see him again and be able to ask him how his plan was going. I wondered if he would ultimately seek help for his drug use. My supervisor reminded me that I had done my job as an HIV counselor. I had helped the client make a plan; he had even thanked me for it.
And I can thank him in return. He reminded me that although I have worked to understand disease in the classroom, the laboratory, and the clinic, I still have much to learn about caring for all aspects of a patient’s health. I am eager to continue the learning process in the New Pathway Program at Harvard Medical School.
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