Eva Janzen Powell at the Jan. 31 Quality of Life bill press conference. Photo by Andrew Davis
At a press conference this past winter about the recently-passed Quality of Life bill ( which will establish a state scratch-off lottery game that will ultimately benefit HIV/AIDS prevention and education efforts ) , many were moved by the story of Eva Janzen Powell.
Janzen Powell, who is on the board of the AIDS Foundation of Chicago, talked about being diagnosed with AIDS in 1987. ( Her first husband—who has since passed away—and her son, who was seven months old at the time and is now 20, were also diagnosed. ) 'Only AZT was available then; opportunistic infections were still hard to figure out,' she said at the time. 'It was really a struggle.' Since losing her husband, she married an 'amazing and supportive' man nine years ago, and now lives with a houseful of teenage children and stepchildren.
Janzen Powell recently talked with Windy City Times about being diagnosed, her struggles with her family and forgiving her first husband.
Windy City Times: Let's go back to 1987. Your entire family had been diagnosed.
Eva Janzen Powell: Yes. It was April 1987 when my [ first ] husband went to the dentist because he had a sore in his mouth; it turned out to be a KS [ Kaposi's sarcoma, a type of cancer seen primarily in AIDS-affected individuals ] lesion. He was then referred to a hospital, where he was tested for HIV. So, with his diagnosis, my son and I needed to get in there—and we both tested positive.
WCT: And, emotionally, what was finding out all that like?
EJP: Even going back to when my late husband got his diagnosis, I walked in to find out my diagnosis and he wouldn't look at me. So I'm sitting there thinking, 'What's going on?' Then, the doctor told me [ about my husband ] , and it was really stunning. We all went home from there, and he just curled up on the sofa with his back out for three days. He didn't talk or anything.
It was that day that [ I and my son ] had our blood drawn as well. I think it was that day where the doctor suggested I just sit there [ to digest everything ] . As soon as he left, this nurse came in and said, 'OK. We need this room. Everything's going to be OK.'
Of course, [ HIV/AIDS ] was all over the news, so certainly there was the fear of death. It was a lot to absorb. We had this beautiful seven-month-old baby—although, in retrospect, what was interesting was that a couple months earlier my son's pediatrician noticed that his liver and spleen were enlarged, so he put him through [ a battery of ] tests except for HIV. My late husband was at every one of those appointments, so it was weird to find out that it was [ HIV ] .
WCT: And your first husband passed away soon after being diagnosed?
EJP: Yes; he passed away in February 1988. At that time, the clinic he went to was aggressively treating people with KS. He only had a few small lesions; he wasn't covered in them. I kept saying, 'Let's get a second opinion.' He said, 'What else are they going to tell us?' His immune system was wiped out and, by Thanksgiving [ 1987 ] , he started having lung infections. Then I finally said that he had to get to another doctor. He went to Northwestern Memorial Hospital, and they said they don't aggressively treat KS if it's not severe. From Thanksgiving to February, he was in the hospital.
So those 10 months [ involved ] chaos. He didn't want to tell anybody, and I felt very isolated. At the clinic I was at, they didn't know how to care for me; I wasn't being treated like a person—although I was [ advised ] not to breast-feed anymore. We were referred to Children's Memorial, where they had started seeing HIV-infected children. My husband couldn't participate, and he talked about his guilt [ over that ] .
WCT: Did you talk with your husband about how HIV came into your lives?
EJP: It slowly came out, and I felt really stupid. I grew up in small-town Kansas in a conservative Republican household. My mother never talked about sex, except to say that it was something you did for your husband.
[ My first husband ] and I were friends for almost four years before we got married. While we were friends, we talked about his community of friends being gay, and how people would [ heckle ] them. I had a co-worker who kept teasing me, saying that he's gay; all I thought was that I loved this beautiful man who had this infectious personality and huge smile. I just closed my ears to the whole thing.
After the diagnosis we talked about how he could've been infected; [ the doctors ] predicted that he became infected in the late '70s or early '80s, and he had made a trip to California during the early '80s that he characterized as a trip to find himself. I met him a couple of years later.
The one thing I remember telling him was, 'You must really think I'm stupid.' What I think I meant is [ that I wondered ] why I was so naive and why I didn't pay attention to the signs. I didn't think marrying him would change him; I never truly absorbed the fact that he was gay.
WCT: Have you forgiven him?
EJP: Yeah. It took me a little bit of time, but when I look over the past 20 years, I think—being confronted with this and deciding how I was going to live my life and raise our son— [ that ] I am a far better person than I would've been had I not become infected. [ Everything ] has made me stronger, [ although ] my self-esteem was affected over a period of years. However, I used to be a very timid person with not much self-worth, but now I feel like I have a lot more inner strength. I [ ultimately ] decided that I had to live.
So, I got the survivor's benefits, and worked part-time so I could have some time with my son. However, it was also really important to realize that there would be a day when the benefits would run out, and that I would have to financially support us as well as make sure that we were insured.
[ Eventually, ] I ended up in the pediatric trials medical community. I've stepped down from a lot of leadership roles, but still serve in an advisory [ mode ] .
WCT: During your Quality of Life presentation, you mentioned how you felt that people had been judging your son while he was in school. Is he in college now?
EJP: No. When he was seven, he asked what he had—and I started talking with him about HIV and AIDS; he then shut down and started acting out. When he was eight or nine, he [ changed physically ] and was sick; he didn't really grow, his belly [ grew out ] and had thin [ limbs ] .
After he learned what he had, he decided to tell his classmates because he didn't want special treatment. Starting in junior high, life got really rough for him. He would come home with his glasses bent because people would push him into lockers. Then, he started hanging out with rougher kids.
Today, he's struggling. He hasn't been able to forgive his father. With me, he's been able to talk things out [ somewhat ] . When he turned 18, he decided that he would not take [ the medications known as ] antiretrovirals anymore. He's having a difficult time socially. He's so afraid of failing that he doesn't give himself the chance to [ think ] that he'll succeed. At times, though, I see glimpses of the person I know he can be.
WCT: With everything you've been through, what have you learned about yourself?
EJP: I grew up a Mennonite and in a very strict environment; we were respectful of people, but were certainly told who were sinners and who were not. What I have really learned is that everything is not black and white. I've kept the part about being respectful, but what I also believe is that every person brings value to what they're doing [ simply ] based on who they are. I just have to leave my own brain open and my opinions uncluttered so I can hear what [ others ] have to say; I think listening to others is how someone grows.