20 Years of Commitment

Positively Aware, then and now
by Steve Wakefield

There are a number of phenomenal events that seemed impossible to me as a child growing up in the suburbs of Chicago. A man on the moon. The fall of the Berlin Wall. The end of apartheid in South Africa. And today, 20 years after joining Test Positive Aware Network, I stand in awe of the number of lives it has touched, and of how my life continues to be enriched by the work of its volunteers and staff.

In February of 1989, it was my honor to serve as TPAN’s first paid staff member. My best friend at the time suggested I should be committed. He really thought that perhaps there was a mental health institution that had a bed for me. In my clueless state, I replied that I was committed—that this group of men was going to find the secret to ending the AIDS epidemic. We had a banner in our main hall: “Committed To Living.”

The organization moved from meeting in Shiel Park Fieldhouse to our own space on Belmont. Through donations, we furnished what became a place of comfort, hope, and wellness at a time when most persons diagnosed with HIV had less than a year to live. In times of sometimes unfathomable grief, the men and women of TPAN found ways to provide for each other. We had support groups and “Ask the Doctor” nights, but the real work took place as persons who had little in common found ways to be part of the fabric of each other’s lives.

Like any family, we had our struggles. Many of you will remember Michael Thurnherr, who followed me as Executive Director. My discussions with Michael occasionally led to tearful moments from which each of us walked away spouting angry epithets. The object of these intense moments was to convince each other which opportunity would best lead to a new world. Rather than admit that we had touched each other’s hearts, challenged the very fiber of each other’s being, or opened a new vista of understanding, one of us would leave a candy bar or Diet Coke on the other’s desk. Within a few hours, the other would come and say thanks. We both found it easier to thank someone for a treat than to tell a friend whom we admired, respected, and loved that his intelligence, acumen, and tenacity had profoundly changed us once again.

One such moment came when I was to moderate a public forum to welcome the new City of Chicago Commissioner of Health and help her work with the HIV community. Before the forum, Michael locked me in my office and told me to work on any report, but not to come out. Little did I know that on the other side of the door, members of ACT UP Chicago were preparing a demonstration. A few minutes into the forum, TPAN members Billy and Ida commandeered the microphones, chanting “Act Up! Fight Back! Fight AIDS!” They took a break only to wonder out loud, “How can this flying nun support condom distribution?” Persons who were perfectly ambulatory that afternoon were wheeled into the room with IV poles. It was one of the best street theater demonstrations witnessed by a city known for radical organizing. Over 50 TPAN members helped ensure that the voice and commitment of people living with HIV would be heard by this new leader of the health department. Today, I celebrate the spirit of those early pioneers of the TPAN family. But I would be remiss if I failed to share a more recent heartwarming moment in my life. One of my friends had been reluctant to routinely see his physician. As a friend, I expressed my anxiety, explaining that taking HIV drugs is not easy, but working with the right physician can really improve the quality of life. Despite his reluctance, we identified someone he could work with. After a recent doctor’s visit, my friend called and asked if he could stop by my office and show me a magazine he picked up at the doctor’s office. He had been reading it for a couple of hours, and it had provided him insight into living with HIV as well as great medical information. A few minutes later I was in tears as he reached in his backpack and pulled out the latest issue of PA.

My friends, you have a treasure. These are phenomenal times of hope and commitment. In a few days the country will move forward under new leadership. Success will depend on our ability to integrate new thought in a responsive manner to the existing infrastructure. Will there be a vaccine or a cure for HIV? Will there be a time when folks starting on HIV meds will only need to take one pill a month? I’m not sure. What I am sure of is that the spirit of TPAN members and staff will continue to improve the quality of my days. My desire is to continue to have each of you in my life, and for each of you to be a treasure in the lives of those who share your road of happy destiny. e

Steve Wakefield served as Executive Director of TPAN from 1990–1994 and is currently Legacy Project Director for the HIV Vaccine Trials Network, working to increase participation of African Americans and Latinos.