The Trials and Tribulations of Christine Maggiore
By Chirstine Maggiore
HIV Plus Magazine Aug./Sep. 2000
On a still, gray morning in March of 1992, I got a call from the gynecologist's office where a few weeks earlier, during a routine exam, I was offered an HIV test. Not having any symptoms of illness or specific risks, I agreed without particular concern. The call insisting I report back to the doctor sent my mind careening in terrible directions that ultimately settled on HIV. By the time I arrived at the clinic, I felt so ashamed that I could not bear to look at the receptionist.
Everything I knew about AIDS came from skimming Newsweek, The Wall Street Journal and other publications stacked in the lobby of the import/export company I owned. The articles were always concerning, but on a distant, theoretical level. Other than being a cause I wrote checks to support, AIDS was not part of my personal reality.
I had left America in April of 1984, two weeks before Robert Gallo announced the discovery of HIV. I was exploring Egypt the day of his famous press conference and missed the whole thing. For several months after that, I traveled around Europe and North Africa, one step ahead of the news, eventually settling in Italy where I taught English, learned Italian and formed what would become my clothing business. It wasn't until 1986 that I even heard the word AIDS. From 1986 until the day of my diagnosis, I had been living between Los Angeles and Rome without a television at either end, largely unaware of AIDS news and education campaigns.
When the gynecologist handed me my test result, my stomach dropped into my shoes; I couldn't breathe and felt I was about to vomit. She expressed her condolences and then offered the use of her phone. I had no idea what I was supposed to do--I was the first person I ever met who had tested HIV positive. Terrifying images of what I assumed was my impending future played like a tape loop in my head: a rail-thin woman with tubes running in and out of her arms, face caved in, giant sorry eyes, dying in isolation and shame.
Within a few days of the diagnosis, I made my way to an AIDS specialist and a support group for positive women. Within a few months, I was training as an awareness educator at AIDS Project Los Angeles, was speaking on behalf of LA Shanti Foundation, and was on the founding board of Women at Risk. I figured the best use of the five to seven years officially allotted to me was to prevent others from falling into my tragic circumstances.
Since my T cells counts were considered high, I was never told to take AZT--the drug du jour at the time--and I declined chest X-rays, flu shots and offers for prophylactic treatments. Between my business, my public service work, and attending AIDS seminars, I never found time to follow suggestions to get my affairs in order.
A year or so into my diagnosis and AIDS activities, while searching for an AIDS specialist with whom I could feel comfortable dying (my requirements: knowledge, compassion, the ability to listen as well as talk, a sense of humor, regard for the individuality of each patient, and a pleasant office stocked with current magazines), I tried a doctor who immediately recommended that I retest. She said I didn't "fit the profile" of an AIDS patient. From what I gathered at support groups and from books on AIDS history, I could see her point. At the same time, however, I felt paralyzed by the possibilities. How could I manage the devastation of a positive result after getting my hopes up? How could I leave my new positive friends to their fate if I turned out negative? When I met a guy at the gym who expressed an interest in doing more than talk across the treadmills, I disclosed my status and he decided for me. I would retest.
If life were like a movie, my results would have been negative, my AIDS pals would have thrown me a tearful but triumphant party, and me and the man from the gym would be living latexlessly ever after. Instead, the new test was indeterminate. The next one turned out positive, the following result was negative, and the one after that was positive. I felt like I went through hell and back to end up right where I was before. But the experience left me with two things that irrevocably changed my life--doubts about the AIDS information I was spreading and someone who loved me despite my diagnosis.
I started really thinking about what AIDS doctors and educators told me rather than just accepting everything as true and correct. I noticed that the circumstances of my HIV status didn't add up. Based on T cells and my series of flip-flop tests, doctors insisted I had a new infection, but my only relationship with someone who also tested positive dated back to 1985. According to contact tracing, I was nine years into a seven year death sentence and not at all sick. My ex's situation didn't follow the rules, either. His wife, with whom he'd practiced unprotected sex for years before he knew he was positive, tested negative, as did his two children.
Another aspect of HIV that didn't make sense to me were T cells. My first count was 1700 even though I had suffered with medically induced immune suppression for several years before testing positive. A drug I had been prescribed based on a misdiagnosis caused me night sweats, constant low grade fevers, mouth sores, fatigue, muscle pain, and other problems typically associated with AIDS. The error was discovered in 1990 and I stopped taking the medicine. Although I was still recovering from this immune suppression, T cell counts indicated my immune system was in optimal shape.
As I examined these contradictions, I also investigated resources that were dismissed by my associates. Perhaps my lack of exposure to years of AIDS news and ad campaigns allowed me a more open mind. I eagerly read through numerous scientific papers, several books, and stacks of international news articles that all challenged conventional wisdom about AIDS.
Excited by what struck me as the practical logic of this new information, and thrilled by the foundation it provided for hope, I shared highlights from my research with the Shanti support group. The response was unanimous silence followed by a change of subject. My fellow board members at Women at Risk proved equally disinterested, and APLA dismissed all data on the subject as irresponsible rubbish. Disappointed but undaunted, I persisted in my investigation and urged the staff at APLA to organize a debate between AIDS reappraisal and AIDS establishment leaders in order to resolve the different points of view. APLA agreed, then equivocated, and finally told me to get lost. Instead of getting lost, I found my calling. Together with a few positive diagnosed friends, I created a new AIDS organization.
Alive & Well AIDS Alternatives sponsors open dialogue and unfettered questioning about HIV and AIDS, provides access to vital data that often goes unreported and funds innovative studies and trials. We have an extensive web site, affiliate organizations in the US, Mexico and Africa, offer a yearly calendar of free community events and discussion groups, and referrals to holistic health practitioners that honor the right and the ability of HIV positives to achieve and maintain wellness. While trying to compose a brochure about our work, I accidentally wrote a book "What If Everything You Thought You Knew About AIDS Was Wrong?." Now in its fourth edition, it has been translated into four languages and used at several universities.
Eight years into my diagnosis, I enjoy excellent health free from pharmaceuticals or fear of AIDS, and have a beautiful, healthy three-year-old son. I know scores of HIV positives who like me, are naturally well years after their own dire prognoses. Their messages of thanks to our organization--along with praise from their parents, partners, friends and doctors and others familiar with our work--fill two huge binders.
While this may read like a smooth transition from hopelessness into happiness, nothing has been easy and I've struggled with every decision along the way. I lost most all my friends from various AIDS groups to their anger with my choices or to AIDS; the guy from the gym was killed in an accident shortly after we became engaged; AIDS activists have twice tried to declare me an unfit mother and I am frequently misrepresented in the media. One recent article claimed I am not HIV positive while another likened my work to Nazi death camp experiments. It's a constant challenge to overcome these unfair portrayals and a shortage of funding sources for our unconventional organization. Despite these and other hardships, I regret nothing and find tremendous satisfaction in my life, my family and my work.
Christine Maggiore is the founder and director of Alive & Well AIDS Alternatives, a non-profit education, support, and research network headquartered in Studio City, California. She is the author of the book What If Everything You Thought You Knew About AIDS Was Wrong? which has been translated into five languages. She is also a healthy, unmedicated HIV positive mother.