Living With HIV
What if ...
An Advocate for People Living With HIV Contemplates the Past, The Future and Motherhood
In 1988, when I was diagnosed with HIV, I thought I had received my death sentence. I was 19 years old. No spouse. No children. No future. And no idea what I was really dealing with. Now, ten years later, much has changed -- and much has not. As a woman living with AIDS, my reality has changed dramatically, thanks in large measure to the effectiveness of the drugs I am now taking. I no longer feel that I am living on death row. I've won a reprieve. I don't know how long that reprieve will last, but I do recognize that I now have options that I didn't have even two years ago.
All people with HIV who have access to combination antiretroviral therapy can now expect to live longer, healthier lives, but all of us must also acknowledge that AIDS is still with us. It is the world we live in. In retrospect, I realize that I have been living in that world my entire adult life. So when I talk about what it means to be a woman living with AIDS, I offer a somewhat different perspective from that of women who reached adulthood -- who graduated from school, who found jobs and husbands, who married and had children -- before their lives were irrevocably interrupted by an HIV diagnosis.
At this point I am the quintessential "treatment-experienced patient" -- which is the benign term that care providers use to describe someone who has tried just about every drug and drug combination available to people infected with HIV. Last week I began yet another so-called salvage regimen. This one is a five-drug combination, and my hope is that it will bring my rising viral load back down.
For me, this is one of the hard times. Part of what makes it hard is the practical aspect of mastering another multidrug regimen -- managing a new array of chemicals, on a new dosing schedule, day in and day out. Part of what makes it hard is how real all this pill-taking makes HIV infection seem to me. (Once I get a new dosing schedule down, I find it easier to take my meds without thinking about what all the pill-swallowing implies.) And part of what makes it hard is that this new regimen really needs to work for me. I haven't got all that many options left. There aren't many more arrows left in my quiver.
My family and friends have been wonderfully supportive during the induction phase of my new regimen. But the plain truth is that not one of them can possibly know what it is like to be in my shoes. I can't fully explain, and they can't fully understand. You know how that goes.
On top of all of this is the feeling that, somehow, I shouldn't have to manage the pills, fight down the panic, ask for support, explain how I feel. But I do, of course, because I live in the world of AIDS. I've lived there all my adult life, and I ought to be accommodated to my world by now. In general, I am. I have battled the virus to a near-standstill, and I have waged -- and won -- the war that all of us must fight with the shame of being HIV-positive. Along the way, I have achieved a sense of control over what so many people, including some of the first doctors I consulted, told me was an uncontrollable situation.
I have won so many battles, but there is one struggle I still wage: Every day of my life I contemplate the possibility of having a child. For me, as for my colleague and friend Rebecca Denison, whose own story appears elsewhere in this issue, the worst thing about finding out I have HIV was being told I could never have a child. I was 19 when I learned I had been infected, and at that time I regarded having a child as life's ultimate fulfillment. Because I felt that so strongly, I never really accepted the possibility of never having a child, and I have faithfully followed every advance in the prevention of transmission of HIV from mother to child for the last ten years. (For more information on this subject, see "Can I Have Children?" by Dr. Kimberly Smith in this issue.)
Over the last decade I have weighed all of the issues that Dr. Catherine Wilfert raises in her editorial in this issue, among them the actual risk of transmission, the option of adoption, and the possibility that I might die before I could raise a child of my own to adulthood. I have done serious soul-searching over the years. I have given long thought to my responsibilities to myself, my family, my future child, even my community. I have tried to replace this yearning for motherhood with other forms of nurturing -- and in the process I have nurtured everything from an AIDS service organization to two dogs to a variety of ultimately unsatisfying relationships. But something deep inside of me still says that I need to be a mother.
I need to be a mother. I need to have this new drug regimen work for me. I need to bring my viral load back down to undetectable levels. I need to keep focused on the future -- now that there is a future to focus on. So many needs, some of them in seeming conflict with one another. I know my priorities, and I recognize that the first one is to win this latest skirmish in my decade-long battle with HIV. But once I have forced the enemy back into his foxhole, I will be free to think about motherhood again. Rebecca makes a number of compelling arguments for such a choice. I think they deserve serious thought.
Dawn Averitt is founder of WISE (Women's Information Service and Exchange).
Back to the October 1998 AIDS Care contents page.
This article was provided by San Francisco General Hospital. It is a part of the publication AIDS Care.