Advocate John Wikiera Made a Deal with God & Kept Up His End of the Bargain
by Lleda McCurty
Photographed Exclusively for A&U by Scot Maitland
“If you need to cough, hold the pillow on your chest tube.”
“If you need to cough hold the pillow on your chest tube. It will help so it doesn’t come loose.”
“I don’t have a chest tube.”
“Yes, you do. See the pillow underneath your arm? Lift it up.”
John slowly lifted up the pillow and saw a tube coming out of the side of his body traveling downward. The nurse then told him he had emergency surgery in his hospital bed to restore breathing due to PCP (now PJP) pneumonia. During his month-long hospital stay John recalls a doctor standing in his room telling him his test results came back positive.
John knew what that meant.
He was going to die.
It was September of 1992.
The year is now 2018. John Wikiera is not only alive, he thrives. Over the years John has kept busy. He has been a trainer and facilitator for self-empowerment, has served as a member of both the Consumer Advisory Board for Trillium Health in Rochester, New York, as well as the New York State Quality of Care Program, and the Drug Utilization Review Board for New York State Department of Health. He has earned a New York State Department of Health AIDS Institute Peer Certification, sits on the Peer Certification Review Board, and serves as a Peer Mentor at SUNY Upstate Medical University. John also chairs the Central New York HIV Care Network which hosts a World AIDS Day program each year, and he travels to Washington, DC, annually to advocate for change. This is only a partial list of his accomplishments.
In one of the rare moments John was not on the move, he sat down for this interview.
Lleda McCurty: When you were diagnosed in 1992, what was your initial reaction?
John Wikiera: I’m going to die, young, before my time. Because in the beginning being diagnosed meant you weren’t going to live much longer. The word “AIDS” had such a stigmatizing, horrible connotation of death. Back then you generally lived a year and a half, maybe two years after diagnosis. I believe there were only two medications that could only do so much because they didn’t have the third medication. Those meds weren’t stopping the virus like they do now.
What did you do next?
I kept trying.
What do you mean by that?
Most humans have a strong will to live. Mentally you may think it’s not worth it, but your body is still fighting to live.
When I was in the hospital, shortly after the surgery I saw a face appear on the wall. I recognized the face as my grandfather. It said, “It’s time to go with me.” I remember saying, “No. I have too much to do yet. I don’t want to go.” The face said, “You’ll be okay. Don’t worry, it’s alright.” Then I woke up.
By the time I got out of the hospital I was frail, literally skin and bones. I had to slowly build up some strength.I did leave work which was one of the most devastating things because I thought that it was another step of losing everything. Around 1995, I started taking protease inhibitors.They were kind of the magic pill so to speak that helped a lot of people to get off their death bed, literally. I really wanted to live, but I kept waiting to die. I was like, six months has gone by, a year has gone by, a year and a half, I’m going to die at any time but haven’t yet. Little by little I started to go outside, get some exercise and fresh air. Then I started to get involved in my community.
People kept telling me that other positive people were going to meetings and support groups, and I thought maybe I should. I started going to the CNY [Central New York] HIV Care Network. There were LGBT church services in Utica, New York, that I would go to. I was finding community which I think is one of the keys to success in life no matter who you are, but especially if you are suffering with an illness. Socialization is one of the biggest factors for anyone. If you don’t feel like you’re a part of anything you are not going to try as hard I think. There have been family, friends, church, and clergy. A lot of people were a part of me getting back into life.
How do you continue to stay healthy?
In addition to staying involved in the community, adherence is key. When I first started, no one knew what they know now about the adherence. Not just medication adherence. My philosophy is adherence to your doctor appointments, proper rest, even nutrition. Those are all things that should be a part of your adherence. We know now if you take care of yourself, you can live a long time. I plan at least to live to be 100.
Why did you become an advocate?
It goes back to when I was diagnosed. I only told part of the story about the face on the wall. The other part is, I was wheeling and dealing with God. I was raised that you’re not supposed to but I said, “If you let me live, I will do what you need me to do for others.” After I started feeling better and got involved in my community, I took my first LTI (Leadership Training Institute) self-empowerment training. I didn’t feel like I belonged anywhere anymore. I didn’t know where my life was going or what to do next. I had prepared to die but now I had to learn how to live. I took the class and it was one of the things that really gave me a jumpstart. I learned it’s not just about me. I need to advocate for, and this is a saying they use in the Philippines which I love, I need to advocate for my blood brothers. But I say for my blood brothers and sisters.
What would you say to encourage others to advocate?
I strongly believe if someone like myself is able to do it, I need to because there are those who are not able to advocate for themselves. People are having a rough enough time dealing with an illness and doctor appointments and stigma and all this stuff. Others may perceive them as being weak. I don’t mind stepping in. I think we have a responsibility to look out for each other. I think it’s the right thing to do. When you see stigma and discrimination happening you need to jump in. Especially with legislators and people in authority there are times when you do need to get a little boisterous. Some of the larger advocacy groups like ACT UP started this advocacy thing in NYC and went to great lengths and still do at times. Without them we may not be here because they really taught us how to do advocacy around HIV. Once you learn how to advocate, you can go to town on just about anything. You can do it. You can do what I’m doing. You just need to be shown what the tools are. One of the most gratifying things is to be helping someone else. Always ask yourself, how can I give back a little?
For more information about photographer Scot Maitland, log on to: www.scotmaitland.com.
Lleda McCurty is a freelance writer and bulldog-loving Southern girl. She currently lives in Central New York with her husband and works in HIV/AIDS healthcare.