HIV Positive, Widowed, and Living a New Life
An Interview With Barbara Choser Cusack, Orlando's Newest HIV-Positive Author
By Myles Helfand
What made you decide to write this book?
I was watching the last episode of the first season of "Survivor," and it was like the Lord just said, "That's you; you are a survivor dealing with HIV." So I was inspired to start writing about how I'm surviving.
I did it more as a teaching tool, because I never thought I could live on my own. I lived at home until I got married; I never thought I was capable of living on my own without being married. I never had enough self-confidence to live on my own, so I am very thankful that, daily, I can get up, go to work and pay my mortgage.
In dealing with this illness -- if I can do it -- hopefully it will encourage other women that they can do it too. I hope to let them know that there are a lot of support systems out there they can get. I hope to encourage them that, although having a man in your life is helpful for, like, opening up jars and stuff, they can make it on their own. But it's just so funny that I never thought I could do it on my own, and it'll be ten years in March that I've lived on my own. I even bought my own house.
How did you go about writing your book and publishing it?
Oh, my Mom and I did it together. I with pencil and paper and she on the computer. I figured, "We can do this!" I outlined it like it was a homework assignment. Also I chose three people to help me edit the book. That part was frustrating, because I'm an anxious person; I want it done, like, now.
Linda P. [Linda Potkovic, a health educator on HIV/AIDS and women's issues] was one of the last people to look at the book; if she liked it then I knew I had a good product. And her approval meant so much to me. She's the one who turned me on to the TV show "Survivor," because I do the women's panel at UCF [University of Central Florida].
What is that? The women's panel at UCF?
It's an HIV/AIDS ed. class. Each semester they have a panel of people, like men that have HIV. And the class asks these men on the panels questions. It gives them a face, it gives the students a face of a person who has HIV. Then they have a women's panel, which I've been on for awhile now; it's usually me and two other ladies. Students can ask us questions about our HIV and how it affects us and our families. They usually ask very good questions, and, like I said, it gives the class a face to the disease. They're surprised we're not, like, crack addicts or prostitutes, so it's very good. Linda P. is one of the facilitators there.
I knew Linda from CENTAUR, a group here in Orlando that updates you every couple months on medications, what's going on in the medical field -- there's a lot of local support here in Orlando for people that have HIV. I really like it here because of that. That's where I met her, and she asked me, "Would you like to be on the women's panel?" and I said, "Sure." And I was scared to death; I cried for the first two years. Now I don't cry so much.
Yes, it's a little overwhelming whenever I start talking about my husband, because of the way he died. He was such a healthy man; he was like 155-160 pounds, and he died at like 125 pounds. He just wasted away. So whenever those questions about Dan were brought up, I would just start crying.
How did you start distributing your book?
That was easy; I like to talk on the phone. I just opened up the Yellow Pages and started calling bookstores. I said my name was Barbara Cusack, I just wrote a book, I'm a local author, told them what the book's about. Mom made up flyers and promo packages. I called up churches, and got a positive response. This little business is paying for itself; I'm really proud of that. I've learned a lot of patience.
I guess you'd have to have patience in the publishing industry.
Well yes, but when you tell people you wrote a book, they're like, "Oh, I've always wanted to do that!" Plus I can let them know: This is what I've gone through. It's really no big deal. You can do it on your own. I figured that'd be a lot of stress, if I went ahead and mailed my book out to a whole bunch of publishers and they rejected it. I didn't want to have to deal with that rejection; I figured having HIV is the biggest rejection that I could have. So this way may take longer, but hey, you contacted me. It'll get there.
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