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.
After you were diagnosed, what emotions did you go through? How did you cope?
Maybe you just never really had the opportunity to bring out that side of yourself.
Yes, exactly. So basically, after Danny died that had to come out, because I didn't want to be a loser and I didn't want to get on to taking antidepressants. Counseling helped, and then I started to go back to church, which is always a good foundation -- to get back to God and the person I once was. I didn't use God as a crutch, but more like a sounding board; to talk to Him about how angry I was, to ask Him, "Why did this happen to me?" Then I just thought, well, let's try to make a bad situation into a good one. I just decided not to be stuck in the grieving process but to move on; I said, "OK, I recognize that I'm bitter. I can't be bitter forever, because I do want to fall in love and remarry, and who wants to marry someone who's going to be bitter?"
I'm not angry anymore. I'm just irritated. I've come to terms with living with this. I'm irritated with ordinary, every day situations, but I'm having a normal life.
Before, I hated healthy people and pregnant women. I've come to terms with that. There's just no chance [for me to have children now] -- I'm in menopause now, and it's OK. I have no desire to adopt. When I hit 40, I realized it's not my life's calling to be a mother. I enjoy my nieces and nephews. I go to the nursery.
In fact, I went to take care of babies at a nursery at my church, and I was surprised. You know, they do a background check for the volunteers, and they asked me, "Do you have HIV?" I was surprised that they had that on the application. I didn't answer it. I just went to the girl at the desk and said, "I don't think this is right." Privately, in the back room, I said, "I have HIV, but I don't think this is right."
They didn't call me back about the application. I can't even change diapers at the church. [Laughing.] I guess the Lord doesn't want me to change diapers.
Weren't you angry?
I wasn't angry. I've grown. I wasn't going to walk away from my church. The Lord will have another avenue for me. Yes, I guess you could say I have grown. [Laughing.]
Once you and Danny started exhibiting symptoms, how long did it take you guys to realize, "Maybe we should go and get ourselves checked out?"
Oh, we didn't!
You mean you never even decided to get tested?
No. We were never really sick until Dan caught pneumonia. He recovered and went back to work. We thought it was just stress from working and going to school. But then he got the flu. In order for him to go back to work, he had to get permission from a doctor certifying he was healthy. I wasn't in the room when he was talking to his primary-care physician. Dan came out and said he got the HIV antibody test. I asked him why, and he said, "Well, the doctor said he wants to rule this out." I said OK, not a problem. The test came back positive and Danny never got better.
How long were you two married?
We were married for eight years.
Never had kids?
No, because there was always something. We got married when I was 25, but the first five years of our marriage were an adjustment. Then he started going back to school and I just didn't want the extra stress -- trying to have a baby with him going to school. So we figured after he graduated and I turned 35, then we would try to have a baby. I was diagnosed at age 33, so when I turned 35, it just angered me because I had no husband to start a family.
How did you decide who to tell about your HIV status, and when to tell them?
Well, Danny was not getting any better. He thought once he got on the medications he would get better and we would keep it to ourselves, but he was not getting any better. In fact, the first person I told was my friend Lisa; I told her within three days. She said, "I knew something was wrong!" Two years before we were diagnosed, she had bad dreams -- like a premonition that something was wrong with us. Now that I look back, it's like, the signs were there, but who would have thought it was HIV?
And then I guess after about three weeks Danny wasn't getting any better, and I said, "Danny, we have got to tell our parents." So I went ahead and told my folks. He told his dad on the phone because he was too sick to go over there and tell them in person. I felt really bad that he had to do it that way. And then I slowly started telling my clients, because I was still cleaning houses.
You've been in this business a long time. How did you get into house-cleaning in the first place?
I have always been a people person. In high school I had a part-time job working in the dining area of a nursing home. After high school I got my Florida real estate license, but being young no one really took me seriously. At the time my father had a friend that was in apartment maintenance who needed a person to clean out the empty units. It was hard work, but I enjoyed being my own boss, so I did it for five years. From there I started doing private homes. Then I wanted to do something different, so I went to school and earned a paralegal degree. But after so many years of keeping my own hours and comings and goings, the thought of being enclosed in an office from 8 to 5 didn't appeal to me. Besides, now I had a husband who had a good job and earned enough money for our household. We had bought a piece of land to build our future dream house. So I continued cleaning for my clients, with whom I have a wonderful relationship. I used my paralegal degree to volunteer at the Orlando Legal Aid Society for a year and a half and also volunteered as a Guardian Ad Litem in Seminole County for three years.
Now I'm working 45 hours a week. I expanded my organization, Housekeeping 101. We are doing commercial clients and home organization in addition to home cleaning. I've got three part-time employees. I'm doing good.
What made you decide you needed to tell your house-cleaning clients?
Like I said in my book, it's a very personal business. I've been with these people for a long time. I mean, we knew about each other's personal lives. They knew Danny was going to school. It's not like I go there and these people aren't home.
So there's a much more direct involvement in their lives.
Oh yes, I interacted with some of these folks. I've been in this cleaning business for many years, and I've been with some of these families longer than most marriages, so we all knew what was happening in each other's lives. I don't just go in and clean, we talk. So I realized, OK, I need to start telling these people. It upset them, but they all figured, "You've already been in our house four years, five years, so why should you leave now?" A lot of people got tested; they're like, "Well, if you can get it" -- a lot of these people were my age -- "if you can get it, it could happen to us." It really woke up a lot of people.
That's actually kind of a good thing, that you were able to spread that awareness.
Yes, 11 years ago I was the only woman they knew that had it, so it really scared them. You know, "My goodness, if it could happen to her -- and she's not a drug addict or fools around."
Also I was starting to lose weight, because of the medication. So they just knew that, "OK, Barbara, you're thin, why are you getting thinner?" The medications really sped up my metabolism, and they noticed I was taking medication in the middle of the afternoon, which I hadn't done before. I was on Crixivan [indinavir], AZT [Retrovir] and 3TC [Epivir]. Crixivan and AZT had to be taken mid-afternoon.
Those aren't the only medications you've been on, are they?
No, now I'm on Viracept [nelfinavir] and Combivir, which is AZT and 3TC together. I take them morning and evening. When I was diagnosed 11 years ago, you had to take them separately. So my clients noticed that I was taking meds in the middle of the day, and I'd go to the bathroom a lot. They just knew something was up.
So in order to, in a sense, increase the comfort level again ...
Yes: I told them, "This is what's going on, this is what happened." And I didn't lose anybody, so... The people who had children were a little concerned, but they said, "Well, she's been with us already."
In your book, you outline the tremendous outpouring of support you've had from friends, family and business clients since you began telling others you have HIV. Have you had any negative experiences?
From my high-school friends. They said they couldn't foresee how anybody would want to be intimate with somebody who has HIV. And my closest friends were freaked out. They're better with it now, because it's been 11 years, and I look much healthier. I've gained weight, finally. I was really skinny. I was like in a size 0, a girl's 14. I've gained weight now, after menopause. Praise God!
At what point did you decide it was OK to start trying to date again?
Danny died in March of '97. In September, I went to a UCF football game with my high-school friend Don. While we were there I met a man who was visiting from England. We struck up a conversation and he asked me out. I said "Yes." I figured, OK, I'm going to be dating sooner or later. So we went to dinner. I waited until after we ate and then told him about my HIV. It didn't go too well after that.
How did he react?
He just said, "Oh, you're a much stronger person than you think you are," yada, yada, yada. And then he didn't even walk me to my car. He just sort of, like, left! I know people from England are not that rude.
What made you decide to tell him on the first date?
He didn't live here, so I figured I needed to use him as a guinea pig, to see how the reaction would be when I did really get ready to start dating. I figured, OK, this is the way it's going to be. And sure enough, when I had my second date -- I haven't dated much, so this'll be really short -- when I had my second date, I waited six weeks into the friendship to tell him. After we ate dinner one night we went for a walk, and then I decided to tell him. He responded very well, and he started telling me things about himself -- like, "Well, I got a broken foot when I was 10" -- and then he said he wanted to get some information from one of the local HIV/AIDS agencies. I thought that was really cool. Anyway, I didn't hear from him for a week. I called him a week and five days later, and he said that he got the information and got the answers that he wanted. And I was like, "Great," and didn't press him. Then he said, "Well, I gotta go." I never heard from him again. So I figured this is just the way it's going to be. But then I have met some men that had no problem dating me.
And that's gone well?
Yes, I've been in several relationships since then. I saw one very private HIV-positive man. Then I dated a musician well-known in the Orlando area. He was hot, the first man who really made me blush. He was from Venezuela. Oh, he was hot! I never did kiss him. He kissed me once. I just knew from my history that he was very sexual. Since I was HIV positive and he knew I was positive, I just didn't want to go that route. He made me feel beautiful, but that was that.
Then I went out with this one young man. He was fifteen-and-a-half years younger than me. I was 40, and he was 24. He didn't know quite how old I was. He was so nice and a very good cook. He was the first man that I ever let stay in my house. This young man, named Dylan, was the first young man that my family, even my extended cousins, met. It was at Thanksgiving that they met. We're talking eight, nine years since I had brought any male companion to any family event. I finally allowed somebody in my life. That was a big hurdle, a very big hurdle.
I met my current boyfriend at a Super Bowl party back in 2004. I saw him there, and I thought, "Oh my God, this guy's obnoxious!" Then I met him again for Fourth of July. He knew I was widowed and he asked how [my husband] passed away. So I said, "He passed away from complications of HIV and I have HIV, too." I just wanted to get that out of the way, since I thought this guy was obnoxious anyway.
He said, "Oh, I'm sorry. I'll take care of you. I'll feed your cat if you get sick." I kept that in the back of my head. Any guy who wants to take care of my cat is a keeper.
So, were you right?
Yes. I'm finally dating a good man -- a good man. Have you read The Purpose Driven Life [pastor Rick Warren's guide to finding divine guidance]? He is that. He is the perfect man. He doesn't get irritated and nothing inconveniences him. I am the opposite.
We've been dating for three years now. I met his family, and they don't know I'm positive. I'm usually upfront about my situation, but since dating him, I've learned to keep my mouth shut. I tell you, it's not easy.
Why can't you tell his family?
He asked me to not share it with his family, and I respect that. At first I was uncomfortable about it, but now I'm used to it.
It's been two-and-a-half years and I think he's getting a little bit more comfortable with it. We're working on it. It's one of the reasons we're not ready to get married yet.
It sounds like you have been very open about your status with your friends, your partners, your colleagues. I understand you also recently spoke to your church about being HIV positive. What was that like?
After being a member of my church for nine years, I was given the opportunity to share my testimony to my congregation. It was very eye opening to a lot of people. We are talking about 2,500 people who saw me speak. So the Lord opened up that avenue.
I came out. [Laughs.] It was my coming out. After [the minister] introduced me and I went up to my church family that had seen me all these years, people were like, "Oh, my gosh, she's living with AIDS!" It's not a gay person; it's not a drunk person; it's not a prostitute. I'm somebody who looks like everybody else. In fact, afterwards I was able to meet two other men in my congregation who told me they have HIV. Later women came up to me and told me they had gone out to get tested, because [they thought], "If she has it, then we could, too."
It was very healing. My parents came. I got friends who hadn't stepped into a church in years to come. It was a very powerful five minutes. It's amazing what five minutes can do when you chose the right words.
What's the best piece of advice you could give to single women with HIV?
Don't give up. Don't give up! Find some good people to surround yourself with, a good church family or good friends. Especially people who are newly diagnosed -- don't give up.
I met some awesome HIV-positive women at this panel [at the University of Central Florida] last night. I was thinking that my next book would be about me, but now I'm thinking its going to be about them. Oh, awesome women! Sometimes when you are newly diagnosed, you don't realize your inner strength. This one woman, she grew up on the streets of New York City. She hasn't tapped into her inner strength yet, but she's survived a lot. This other woman, she's tapped into her inner strength. She's a rock. We just have to tap into that strength.
A Survivor's Guide for Single Women
By Barbara Choser Cusack
YChoser Desktop Publishing, 2001
Paperback (45 pages), $8
To order, click here.
Following is an excerpt from A Survivor's Guide for Single Women, by Barbara Choser Cusack.
In September 1996, my husband Dan was diagnosed with AIDS. Seven months prior, he had shown symptoms of HIV but we thought these symptoms -- ulcers, fatigue, weight loss and a bout with pneumonia -- were due to stress.
In September, Dan caught the flu and his doctor persuaded him to get tested for HIV. The results came back two weeks later. Dan had tested positive for AIDS. His T-cell count was 11 and his viral load was 150,000 copies.
Then it was my turn to get tested. You have to know that though I am not a straitlaced individual, I did think of myself as a decent person. Well, was I ever embarrassed! The fellow who drew my blood for the HIV test had been in a former speech class I had taken and I just imagined the horrible thoughts he must have had of me. But he was very professional, reassuring me that he did not have any bad opinions of me, that this was his job.
My results came back HIV+, with a T-cell count of 247 and a viral load of 10,000 copies. Anger and fear ran through my veins... "How could this be when we'd been married eight years and had dated for a year and a half before that?"
Dan and I agreed not to tell anyone that we had been tested but to keep this news to ourselves. The doctor gave us information to read about different HIV medications and Dan was confident that everything would be fine.
But I was sooo afraid. Dan was now far advanced in the disease and too weak to leave the house. I kept telling him, "We have to tell our parents. They won't abandon us. Yes, they'll have questions, but we need help!" Especially now since I, too, had this dreaded disease. I needed help!
Of course, our parents knew something was wrong. We had gone several weeks without seeing them, lying over the phone when they called. Our wonderful family did not banish us. In fact, it was just the opposite. They surrounded us with love, compassion and prayers, helping with Dan's care and providing much needed financial help.
It was also obvious to our neighbors that something was going on. They weren't seeing Dan going to his job or working in the yard. So we decided to tell them, not knowing how they would react. For the sake of privacy, I have changed the names of my neighbors and clients in the telling of these stories.
Well, they hugged us and made themselves available to us. I will never forget Midge. She would come check up on Dan while I was at work. If there was something that needed to be repaired, like plumbing in the bathroom to fix a leak, she would do it -- always making it a point to ask Dan's advice on the matter in order to make him feel needed instead of useless and helpless.
Another neighbor, Heather, bought me lunchables and cantaloupe because she understood how important it was for me to keep up my own nourishment.
There are many other stories that bring tears to my eyes. Dan and I were not banished from our neighborhood. If anything, it brought a sense of community. It really brought out the best in the people, not the worst.
My other biggest fear was that I would lose my cleaning business and I would have to start over. I had been with most of these families for years. We knew about each other's personal lives.
About five to six weeks after being diagnosed, I started to inform my clients. It was one of the hardest things I've ever had to do. Out of the fourteen or so families, only two canceled my services. These two families did not cancel immediately so I can't presume it was because I had HIV.
One couple, Charles and Irene, in their mid-seventies, were sitting in their recliners watching the morning news program when I came and sat down on the couch to break the news. I had no idea how they would react; I was so scared. Yet they responded great and were so positive. Irene was really educated about HIV and knew I could not infect her by cleaning her house. Charles and she had no fear of me. After that, Irene would cut out articles for me to read concerning AIDS. Charles and Irene were truly concerned for my health and well-being.
Another family is a young couple, Joy and George. They had just had their second baby, whom I was reluctant to hold. My mind told me that the mother would get angry and tell me, "How dare you hold my baby, you have HIV! Go away, you can't clean for us anymore." That did not happen. She and I cried. She said, "Barbara, you are not going to cut yourself and put blood on Tracey." With that, I was able to pick up that adorable baby and kiss her on the cheek.
The last client I'll share with you is a family of five: Laura and Phil, with their kids Rich, Jessica and Matt. These were the toughest to inform because we had such a good bond between us. It would hurt too much to lose them since I had cleaned for this family for nine years and had watched the kids grow up.
The first one in the family I told was Laura and we cried together. She did not want to tell Phil because he was funny about germs. But he knew something was wrong because Laura and I were whispering a lot. About three weeks later, Phil wanted to know what all the whispering was about and what was going on. Phil took it very hard. Then he was concerned for the kids and how to tell them. Laura told Rich and Jessica (they were in high school at the time) and then I also talked with them. Rich gave me a big hug and told me he had learned all about AIDS and HIV in school. Jessica was more reserved, but she also had gone through the AIDS education classes.
Laura waited a year and a half until Matt turned twelve to tell him. She told him while they were in the car. She said, "Matt, Barbara has HIV. Her husband died from complications of AIDS." Laura told me that Matt's eyes filled with tears and he said, "Is she going to die?" Laura replied, "No." Then he had this puzzled look on his face and said, "Is that why for the past year Dad has been telling Barbara to eat more?" Laura answered,"Yes, she needs to eat." Matt said, "I always wondered why he did that!"
At the time, I did not know Laura had told Matt. So when we went out to eat at a buffet restaurant, I was surprised when Matt came back to the table with five brownies and told me I had to eat all of them. After dinner I asked Laura, "What's going on? Matt's never done that before." Then she told me that she had informed him that I had HIV. Like his Dad, he was concerned that I ate enough so that I wouldn't get sick. I was relieved that she had told him. Now everybody knew.
To all the people in my circle of life, I was the first woman any of them knew who had HIV. In fact, Dan and I were the first heterosexual couple our case-manager, with her large case load, had ever had to case-manage who had AIDS and HIV. There are many lessons I have learned since I was first told I had HIV. Here are some worth mentioning:
The Lessons that I have learned and am learning:
Talk to women about HIV at The Body's Community Center.