October 15, 2007 – April 15, 2008, Rosenberg Library, 2nd Floor Atrium
Photograph and text copyrighted by Roslyn Banish, 2008 All Rights Reserved
“I’m twenty-one years old and I’m from St. Louis, Missouri. . It all started when I turned sixteen. That is when I got my HIV diagnosis. . . I was a junior in high school. When my mother found out I was HIV positive, she instantly started crying. It was hard because she would never talk about it. Now she’s supportive with everything I do. A dramatic change. But she’s still drinking. . . She knows that there is a possibility that the son she wished was dead, could be dead.
. . . Now here I am today. I am still struggling, but I have more strength than I ever thought I could have in this world. My T cell count is higher, 564. My weight stands firm, 185. I feel healthy, I feel ‘gorgeous,’ like I tell everybody else.
I would like to do some modeling. I do poetry. I’ve written over 350 poems already. Actually I do enjoy writing when I have feelings. I also love music. It’s another way I express how I feel. I love R and B. . . mainly Regina Belle. She tells it all.
Before I found out about my HIV, I was just another youth. I was an angry youth. I was abused sexually, mentally, emotionally, physically. I hated my family. I can honestly say this disease has given me a new outlook on life. No, I’m not happy that I’m HIV positive, but I can truly say that it has given me a lot of positive thoughts on what life is and how important it is.”
“…the one thing that grasped my attention was the poem format. I started reading his poem and the first thing that popped up in my head was that this guy sounds like me at one point in my life. The way that he expresses feelings in the poem was like reminiscing of my downfalls in a nutshell.” Sailialii Tupai
“I chose Maurice because of the deep look he possessed in his picture. His eyes told it all. I could see the pain and the struggle in his eyes, but also the happiness that he enjoys.” Anneice Miller
Photograph and text copyrighted by Roslyn Banish, 2008 All Rights Reservedfff
“More than likely I got infected through my husband, but I don’t think that’s relevant. He was very sick and got an AIDS diagnosis. Then my children and I got tested. Christina, my middle child, and I tested positive. My older daughter, Samantha, and my youngest child, Joey, are negative. My husband has since died of AIDS.
Christina found out about her illness through her older sister, Samantha. . . One day she said to me, ‘Yeah, Mommy, when is that HIV going to be out of my blood?’ When you keep secrets, especially from kids, they’re going to think the worst.
I have learned that as caregivers and nurturers, we women tend to not focus on our own health. . . I never put my own health first. I had missed two mammogram appointments. . . Last year I was diagnosed with breast cancer. When I was going through chemotherapy it was very hard on my kids.
I would say that my kids are the reason I never gave up. It was not even an option. Whatever thoughts I might have had about checking out, my reality was my kids.
All my life I had worked, starting at age fourteen. . . I was working as a legal secretary. Because I was making good money at my job, I got pretty good benefits (Social Security disability). I looked at the cosmos and said, ‘Maybe this is my way of doing something for my community, doing something for women.’
It allowed me to work in the HIV community. About three years ago another woman and I started a program in New York City called SMART University (Sisterhood Mobilized for AIDS/HIV Research and Treatment). . . It’s about empowering women to take control of their lives, to become informed participants in treatment, making decisions, and hopefully to become activists and advocates for themselves and maybe for their community.
Challenges now? Cleaning my house. Getting my kids to pick up after themselves. HIV is not a challenge. I’m not happy about having it, obviously. . . but it’s nothing I can change, so I have to deal with it the best way I can.
After the diagnosis, every waking moment it was ‘I’m HIV positive, I’m HIV positive.’ Now it’s not who I am. I‘m not HIV. It’s a disease that I have and I’m living with it.
I deal with whatever comes my way one step at a time. And Christina, she’s doing great right now.”ffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffffff
“…it touched me emotionally. I can’t relate to any of these diseases but I can feel apologetic because such wonderful people are infected with diseases that are lifelong and incurable.” Christie
“…the picture stood out to me. Reading the story makes me want to take better care of myself and help the ones I care about care for themselves.” Anonymous
“The biggest thing that moved me is her way to deal with HIV. She is not HIV itself she just lives with HIV. She did not lose her way even though she encountered a big difficulty.” Tomomi Seyama
“Giving help to other women in the HIV community… makes me esteem her much. I think I should try to use my power to help others. I believe this action can surely make my daily life become more meaningful.” Ip Ling Fei
Photograph and text copyrighted by Roslyn Banish, 2008 All Rights Reserved
(Founder of the NAMES Project AIDS Memorial Quilt. Today over forty-four thousand panels comprise the Quilt. The panels, each six by three feet, have been designed and sewn by friends, partners and family members to honor their loved ones lost to AIDS.)
“Is there a family left in this country that doesn’t know someone with AIDS? People have come out about their HIV status and it’s very much like the gay struggle in that we win when we are open and honest about our lives. When heterosexuals come to know gay and lesbian people, they cease fearing us. The people that I think have made the difference have been ordinary people with AIDS who are so courageous about revealing their status to the world. By doing so they compelled and required this country and our society to move forward. . .
I had the idea for the quilt on November 27, 1985, at the Candlelight March for Harvey Milk and George Moscone, San Francisco’s supervisor and mayor who were assassinated. . . I knew back then that millions were going to die, and I knew that the quilt would be a good vehicle for all of us who were suffering so much. . . I’m just a person who had a good idea and was fortunate enough to find people who shared it and made it work. . .
It’s hard not having any friends left from when I was twenty. If there’s no one left in your life who knew you when you were young, that part of you sort of doesn’t exist any more. .
Right now my time is really divided between downtime, when I’m not feeling really great, and uptime. When I’m not feeling great I tend to stay home and futz around in the garden and hide a bit. When I’m feeling well I go out on the road with quilt displays for presentations to colleges and high schools.
In our group of, say, twelve people, I think most of us are patient, pissed off, hopeful, scared. There’s not a lot of time to be unproductively emotional. . .
We’re just trying to stay alive and do the work that needs to be done. We are pre-occupied with things like making sure that a seven-year-old friend of ours with HIV is allowed to go to school and not be abused by the other children. . . It’s issues like getting money for housing for friends from HUD, getting people signed up for benefits, figuring out how to pay for medications. It’s very time consuming and requires one to stay pretty focused. Anger is always there, but I think people realize how much they have to focus on the work of staying alive and moving this forward.”
“The thing that immediately intrigued me about his story was the simple fact that he carried a quilt around the nation to share people’s stories. I thought that was a great way for someone to be remembered.” Mitch
“He [Cleve] saw the impact way before the need was there and even though he is HIV positive himself he has turned something from a negative into a positive for the community.” Kirk Linn
“In the face of such adversity he can still find so much strength to help others is something I can only hope I have inside me too.” Mike
Focus on Living by Roslyn Banish
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