Community Engagement Leader for People with HIV

I got involved in this field to learn about HIV. I was already involved, 2 years went and by chance I happened to go there and support someone who is going for an HIV test. So I took the HIV test with them and found that I was HIV positive as well. For me this was a good thing because from the very beginning I got to see both perspectives of a person living with HIV and how they treat people living with HIV. I went from using the staff bathroom to be shown the bathroom the hall for clients when I found that I was HIV positive.

Paralyzed and needing care

My children were five and six years old, and within the year I got extremely sick and my then six and seven year old daughters took care of me. Paralyzed bed bound with wasting and Lou Garrett's disease which incidentally I found out I got it because I got the shingles first which then gave me Guillain-Barre which is Lou Garrett's disease.

Finding my voice and leaving a mark

20 years in a wheelchair. I did the HIV education for the Board of Education with Love Heals, the Alison Groot foundation for HIV education. I did this almost 18 years. It was so rewarding and gave me self worth. I also stayed close to harm reduction because I didn't want anybody else to get HIV. I wanted to be a voice and I wanted to leave my mark in society because I didn't think that I would be here to see grandchildren, so at least they would know that their Grandma did good things in this world. By the grace of God I feel that through being an advocate and being a voice it breathed life into me and I have been doing that over 35 years now and I'm still on the front lines.

I am a community leader with vocal New York as well as a member of the HIV planning council and community leader for New York links which is the part of the department of health that focuses on prevention in all communities. In the beginning of the epidemic I remembered reading in positive magazine the Creed. When I read that I felt it was being read just to me it gave me hope in a world.

We need to fight stigma

Full of stigma. Still today we are a long way from where we need to be but I'm happy to be alive and a part of the conversation sharing my lived experiences to help other people. I grew up in orphan who never had parents so life was never really normal for me.

It was very lonely I always had to hustle in life, always had to protect myself especially as a child. Nobody cared so being diagnosed with HIV made me learn how to care for me, made me learn how to live, really live, and I am happy and proud because I have made a different in other people's lives, although I was shunned by society as Ms little orphan Anne. I realized that life could have been worse.

Loving yourself must come first

So many girls didn't make it out. I thank God I did. Love always wins, so loving you must be number 1. Don't let nobody sell you short. You have a purpose, we all have a purpose. Keep those beautiful heads up, love everybody in this community. Big hugs we are going to be okay.