Living With AIDS Is Not the End

Isadore Boni, San Carlos Apache, is an AIDS survivor who now educates people about the virus—he says living with AIDS is not the end.
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National Native American HIV/AIDS Awareness Day is today, Friday, March 20. It’s a day to educate, remember those who passed on, and to know our status. Like many, I’ve attended conferences and workshops on this issue for many years prior to my own diagnosis in 2002. This message is not merely for those who need more training, education, or testing. I personally know many Natives living with HIV/AIDS who have given up hope. I know that feeling—you are not alone.

When I was diagnosed with AIDS and Hepatitis C in 2002, I thought I’d be dead in a day or two. I know and understand the fear and denial. For the past 15 years I’ve lost many Native friends who have simply given up. What are we to do when agencies shut down, rejection continues from family and friends, and we’re left to fend for ourselves? Personally speaking, when I got tested for HIV many people who work in the field encouraged me to “know my status,” pressuring me to get tested. I did. When they got my results, I was told “thank you, good luck out there.” I was left alone. I felt used.

Courtesy Isadore Boni

Isadore Boni holds a banner made in memory of Natives lost to HIV/AIDS.

That was when I knew they only wanted my “number” for funding purposes. I, too, had to fend for myself for years, let alone being proactive to get the services I needed. Even to this day, as tribes struggle to obtain “numbers,” I question if they’re ready to provide HIV/AIDS services for their people who test positive. No one can argue that we are more than numbers. We are brothers, sisters, mothers, fathers, children, and grandparents. We all represent Native people living with HIV/AIDS. Its time to look at us as people, not numbers.

Since going public in 2004, I’ve traveled and spoken at many conferences and workshops, going so far as to advocate and help craft a confidentiality code on my very own San Carlos Apache Tribe which was passed by the tribal council. Yes it was a brutal fight all these years dealing with public life, even more by my own people and tribal leaders, but I knew it was necessary to help people with this virus. We’ve all heard at conferences about “stigma,” and for years we go in circles discussing it with no solution. This was the breakthrough I knew I was called to do. Run. Just run.

Isadore Boni is seen here hiking Camelback Mountain in 2015.

Being overweight in 2009, I thought I’d educate by proving it’s not the end. And I did. Since 2010, I’ve run six half marathons and just completed a full 26.2-mile marathon in January. My next half marathon is April 11—the Hollywood Half Marathon. Running has not only helped me in all aspects, it educated hundreds of thousands of people.

I ran and continue to run for our people living with HIV/AIDS and those who passed on. For those who have given up hope or who are clinging to life, my message to you is that it’s not the end. I know that feeling of hopelessness. Don’t be afraid to ask for help. There are a lot of people who care. You are not alone.