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AIDS Has Not Taken Away My Dignity

March 1999

AIDS has not taken away my dignity. It has built my character. HIV disease has provided me with an opportunity to grow in ways that I never knew were possible. I wouldn't have wanted to have had AIDS. I probably wouldn't have wanted to have had the life that I've lived. But the rewards of this life have been more than I ever thought were possible. I think I know more about the human condition and what mankind can do to one another and do for one another, in ways that I probably never would have imagined or maybe would have taken it for granted, if I had lived some other life.

I know what it's like to see people living with AIDS on the streets with no place to live shooting drugs. I know what it's like to see a young mother who is HIV positive and has just found out that she has AIDS because she gave birth to a child. I know what it's like to have a friend who's an HIV positive woman who wants children but chooses not to do so because she's afraid of what will happen. I know what it's like to see a friend deteriorate and to die. I know what it's like to see a grown man cry and take his own life because he can't face the stigma of living with AIDS. I know what it's like to see a caregiver just totally out of control emotionally because she's so powerless and has been doing this for so long and watched so many people die. I know what it's like to watch a friend who's worked with an AIDS service organization for many years and has watched his clients and his colleagues get sick and die.

I know what it's like to be sitting in the clinic with 30 or 40 people there, some of them near death. I know what it's like to be sitting in Central Park and watching someone who's living with AIDS, homeless and drunk, go down, black out in a seizure, because his body just can't take it anymore. I know what it's like to feel powerless and feel like I have no control over my own body. I know what it's like to have to quit a job because I'm physically not capable of doing it anymore. I know what it's like to watch a lover leave another lover because the lover has AIDS, and he can't deal with it. I know what it's like to see a woman who is raped and is infected with AIDS deteriorate very slowly. I know what it's like to watch AIDS tear families apart.

I know what it's like to hear the religious right say that people who have AIDS deserve this disease, and they're going to hell. I know what it's like to see the innocent babies that are all hooked up with tubes in incubators waiting to find out whether or not they are going to seroconvert because their mother had AIDS and may or not have been a drug addict. I know what it's like to see the nurse's face when the baby dies. I know what it's like to be afraid.

I also know what it's like to see the miracles that take place. I know what it's like to see the moments of compassion when a son tells his father that he has AIDS, and the father holds him, and together they weep. I know what it's like to see a mother come to the hospital and see her daughter in a coma with full-blown AIDS, recognizing the struggle of the last eight years, and contemplating whether or not it's time to pull the plug. I know what it's like to see the fear in a doctor's face when the doctor has to tell the son's mother that he has toxoplasmosis, and he probably won't make it through the night. I know what it's like to hear the cries in the hallway. I know what it's like to go to a memorial service where the parents wouldn't come because the son was gay and had AIDS. I know what it's like to see a friend who has been abandoned by his family, and he's in a hospice and on his death bed.

I know the horrors of this disease. And I know them well. For I have lived them. I have touched them. I have been hurt by them. And amongst all the horror, and all the panels in the quilt, and the thousands and thousands and thousands of people that have died around the world because of this disease, I also know the hope. The hope, the love, and the lessons that we as mankind may be learning. Compassion is a difficult thing for something you don't understand.

With HIV disease, there is no rhyme or reason. It does not discriminate. Ultimately, most people who are infected with HIV die. But amongst all of us that are HIV infected, there are the emerging survivors. The survivors who live, reach for hope, find compassion, access every opportunity, take on the challenge to live. The emerging survivors are all of us affected by HIV disease.

We are the ones who are living in this war zone. We are the caregivers, the doctors, the therapists, the patients infected with HIV, the loved ones of patients infected with HIV. We are the emerging survivors. And we do this in many ways. Most of us find the miracles that are taking place around us, within all of the horror. Miracles of long term survival. Miracles of advocacy and activism. Having our voices heard. Pressuring the drug companies to make changes and actively search for a cure. We are the ones who are living and taking our medications, and choosing alternative therapies, and exercising, and working on our mental health, and living every moment and making every moment count. We are the ones educating the public and promoting safer sex. We are the ones working and volunteering with AIDS service organizations. We are the ones who come to a place of acceptance and a willingness and spiritual growth.

We are the emerging survivors, and we have the power to change this disease. Many of us do it in several ways. Those of us infected just strive, basically, to take care of our physical and mental health. We have found that advocacy is another way of enhancing our own strength. We nurture our caregivers. And we love the caregivers that unconditionally love us. We create our own support systems. We are a network, a network of self-empowered people who have been touched and ravaged by a disease for 18 years, that does not seem to be going away. We the people have the power. And we seek that power through our spiritual strength and connection.

We have compassion for one another, understanding for one another, loving for one another. We do not discriminate. We share our information freely -- our successes and our failures. We have learned to live with AIDS. And we are the ones who, with persistence, perseverance and our voices, will ensure that at some point there is a vaccine and a cure.

One person cannot do this by himself. But for all the millions of people around the world who have been touched by this disease, we have a wealth of power. And that power is the power that has got to be tapped into, so that we can make change. I hope that -- if not in my lifetime, in my little brother's lifetime -- the emerging survivors will be the ones who will have found the solutions to living with this disease.

In February, AIDS Survival Project lost two volunteers, Bill Helgemo and John Paye. Both were fine examples of individuals who exemplify the best of being an emerging survivor. I will miss you both and will continue to carry the torch. Love, Brandon.

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This article was provided by AIDS Survival Project. It is a part of the publication Survival News.
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