In April 2001, my life changed in ways that I could not imagine. I began my position as Executive Director of Positive Wellness Alliance. My learning curve was huge - HIV disease, meeting clients, running an agency that was recovering financially. Amazingly I felt like I was "home" my very first day and exactly where I needed to be - and I still feel that way.
As with any non-profit, the daily concern of whether we could stay open was always present. But the human factor outweighed everything else. I learned about HIV disease mostly through the clients. I often joke that they "raised me", but in a real sense that is exactly what happened.
I've had the opportunity over 13+ years to get to know the clients on a deep level. I've listened to them talk about many aspects of having HIV disease - from taking medications that make them sick, frustrations with remembering to take their medicine, being disowned by family and friends because of their disease, getting let go from jobs because they were either too sick or had too many medical appointments, anger about how they became infected, regret of risky behavior and finally getting to the place where they were just "tired" and didn't want to go on.
I think those conversations of being ready to give up have been and continue to be the most difficult. My counseling background usually kicks in as I try to help them process what could help them want to continue living. "At the end of the day", I have respectfully accepted their decision that they were "done" and let the disease take its course. After all, I'm not the one "living" their disease - they are.
On one of our walls, we have an AIDS quilt panel - it's the size of a coffin. Over the years the clients and staff have written names of friends and clients who have lost the battle to AIDS. It's a humbling daily reminder of the insidiousness of this disease - fathers, mothers, sons, daughters, grandparents, aunts, uncles, children, gay, straight, transgender.....all gone.
Several years ago, we lost 12 clients in one year - 5 in one month. That was a difficult year, especially with a few of the clients who I had gotten close to. There were tears, speaking at their funerals, comforting their family and other clients who were left behind. That is possibly the most difficult part of my job....comforting those still left.....because one day, they know it will be them.
What keeps me coming back day after day, is that I know I'm not done with my work at PWA. My passion for this work continues. Knowing clients who have been living with HIV disease for 20-25 years is an amazing accomplishment now and grounds for celebration. Many are free from drug abuse, have jobs, stable housing, less and more effective medicine to take, are responsible and self-reliant. I'd like to think that somehow I've made a difference....that PWA has made a difference in their lives.
World AIDS Day is a time for remembrance, and while we pause to remember those who have died, we should also celebrate those who live.