First Person: Kathleen Gerus-Darbison

By Laura Jones

KATHLEEN GERUS-DARBISON GREW UP IN SMALL-TOWN MICHIGAN under what she refers to as "Brady Bunch" circumstances. In the early 1980s, she fell in love, got married and had a child -- all part of a normal life for a young woman. Her husband's hemophilia was a known health concern, but improvements in hemophilia management had dramatically improved the outlook for people living with the disorder. But in 1985, both she and her husband were diagnosed with a new blood-related disorder: HIV. After four years of silence, she and her husband both announced their HIV status on live television in order to mobilize the hemophilia community's response to HIV/AIDS after the death of Ryan White in 1990.

"The best thing about sharing my story is the opportunity to dispel those denial myths, and really drive home the point that this can happen to anyone."

An activist and artist, Kathleen has been the recipient of many awards, including the United Way Heart of Gold Award, National Pathfinders Award, National Hemophilia Foundation's Ryan White Memorial Award and Michiganian of the Year. Kathleen began her foray into national volunteer work in 1989 when she attended the inaugural meeting of the Women's Outreach Network of the National Hemophilia Foundation (WONN), of which she served as co-chair for four years. In 1992, she co-authored the children's book with her daughter, Stephanie: My Parents Have HIV/AIDS: Some Advice From an 8-Year-Old. She also was co-founder of a project called STITCHES A Doll Project to preserve the stories of HIV-positive women everywhere.

Who have been your mentors?

There are so many crucial people in my life. My parents have always been such wonderful role models. I really had a Donna Reed/Brady Bunch childhood. Of course, I didn't think it was so ideal at the time, but looking back now, it really does seem like the perfect little life. They taught me that everyone's the same, that you don't judge people based on their race, religion or sexual orientation. Candace, my mentor, has been a very pivotal person for me. And, of course, my daughter -- she's been through everything I have, and she didn't have any choice in the matter. You know, you're supposed to teach your children, but I think we learn even more from them than we teach them.

What made you decide to speak out publicly about your HIV status?

This was 1990. Ryan White had just died and the hemophilia community asked us to speak out because the community wasn't talking about it. Although nearly 90% of hemophiliacs got infected during the time period before blood-supply testing, hemophiliacs didn't want to be associated with homosexuals, so no one wanted to talk about it.

I was on the board of the National Hemophilia Foundation at the time, and the organization asked my husband Mike and me to go public. Only my mom knew everything that was going on at this time, that Mike and I both had HIV. So the Hemophilia Foundation calls us at 2 p.m. and wants us to go on live TV at 5 p.m. that evening and basically out ourselves and everyone else with hemophilia as being HIV-positive.

Well, we talked about it, and basically Mike was tired of lying -- he was sick by this time and had to cover up his appointments and what was wrong with him because he was still working. He said, "I think we need to do this," because he didn't want Ryan White's death to be the death of AIDS awareness in the hemophilia community. So we decided to speak on TV that night. We told my mom, and she told my dad and called around to all the family, saying "Kathy and Mike are going to be on TV tonight, and you have to watch because they're going to talk about something very important." It was a weird way to have your family find out, but that's the way it happened.

Which channel were you on ... was it a local station? What was the reaction of your relatives?

It was on Channel 7 locally, I think that is ABC. It was scary doing that interview. We had never spoken about this issue before, never been on TV before. But we did it and apparently everyone in our extended family, including Mike's mom who lived in Windsor, Ontario, saw the broadcast.

Everyone in our family were very supportive, even though they had many questions. Some questions did not have any answers at that time. But my family has always been there for us through thick and thin. Even neighbors of ours at the condominium complex let us know that they had seen us on TV. One lady came over to our house, knocked on the door, and when I opened it she began to cry. I thought something was wrong and she needed my help. All she said was, "We saw you and Mike on the news. We want you to know that we are here for you if you need anything, someone to babysit Stephanie, anything at all." Then she turned and left. I hadn't expected that. At a time when most people ran screaming from the room when you disclosed your HIV status, I did not expect people to be so compassionate.

What do you think is unique about your story?

I don't think there's anything particularly unique about it. I fell in love, I got married. We didn't know Mike had HIV ... it's not an unusual or unique story. Most people probably acquire HIV from someone they love and trust.

What do you think is unique about the audiences you try to reach when you speak out?

I talk with many different groups, and, to be honest, there's nothing all that unique about them either. The early work I did was in the schools, with young people who figured HIV would never touch them personally. Since then, I've also talked with senior citizens, people who are living on the street, people who are doing sex work, whatever -- people are basically all the same, with the same risks and concerns and the same questions.

What's the best thing about sharing your story with others?

The best thing about sharing my story is the opportunity to dispel those denial myths, and really drive home the point that this can happen to anyone. My face is starting to get thin now, but prior to this year I just looked like your regular neighbor/mom/aunt kind of person, and when I do HIV 101 talks, I don't disclose right away. I disclose my own HIV status when we're getting into the nitty-gritty, and boy are people surprised! You can see the looks on their faces as they process the fact that I'm HIV positive, especially the people who came in bored -- they're the ones who then sit up and start asking all sorts of questions.

I also enjoy running into people later, sometimes even years later, and hearing that something I said made a true impact on them. I was getting a massage the other day and the massage therapist recognized me. She couldn't place me at first, but then she realized she'd heard me talk about HIV several years ago. And her brother-in-law is HIV-positive, and she told me, "You changed our whole relationship," because she'd had misconceptions about people with HIV before hearing me talk. I was just there to get a massage, but I got to hear that too -- that was great!

What's the worst thing about sharing your story?

You have to re-live things that are really awful. The things that people ask about the most are the hardest things to talk about. During periods of heavy loss, I'd just start sobbing during talks, because I'm a real person and those are real losses.

What do your relatives feel about you speaking out?

Really, everyone has been 100% supportive over the past 15 years. My mother often goes with me when I speak -- she would drive me to speaking engagements when I have been ill, in fact. My current husband comes with me a lot now, too. My daughter used to speak with me when she was young, and now that she's grown up she's started to do that again as well. She had a lot of trouble with it when she was in junior high -- she wanted it kept a secret, and so, of course, didn't want me in the newspaper or on the TV. Kids would say things about me and about her dad and she'd get in fights ... she'd just beat the crap out of them. That was a hard time for her.

What have you learned about yourself since you began speaking openly about your HIV status

I've always had some kind of health issue, whether it was severe asthma or allergies or HIV, so my life was always going to be about living and dying somehow. But I have a real appreciation for health, and I am a survivor. And the funny thing is that I've always assumed everyone else with HIV would react like me in that way, but that's not the case. This one young guy I talked with told me, "I want to go out dramatically, while I'm young and good-looking." And that is exactly what he did. Within a year he was gone. That has taught me a lot.

How has speaking out helped you, and how have you changed as a result?

Speaking out has definitely helped me cope, and I'm glad I'm able to help other people, no matter what their troubles are. I feel I was meant to teach and be a messenger, so that's what I do.

How much time do you spend doing HIV/AIDS work now?

What was once my sole area of work is now less than half. This is due to funding cuts at the agency where I used to work (The Midwest AIDS Prevention Project in Ferndale, Michigan). The education that I used to do in the schools and colleges is no longer funded through the state. Now they leave it up to the Department of Education. I don't think much of that is happening. So now my HIV work is by request. I have many contacts with public and private schools, colleges and universities, and local health departments where I have done HIV education for years. These places invite me back once or twice a year. I am also a certified speaker for "Positive Perspectives," a program of the Michigan AIDS Fund. Also, my STITCHES Doll Project has brought many more opportunities for education. This doll project gets 10 to 20 requests per year on average. Sometimes I accompany the dolls. Other times, I send out the "girls" to do the education on their own because the requesting agency is too far away for me to drive. Since this doll project is totally funded by private donations, traveling is limited. We have traveled to Florida and Indiana with the dolls in the past. Photos of both of those trips are on the Web site. I created and maintain the Web site. In fact we have received more new dolls from Virginia and New York that need to be photographed and put up on the Web as soon as I get a chance.

Tell me about the book you co-wrote with your daughter.

My daughter was eight years old when my husband died. He and I were working on a book at the time. We had hoped we would be able to help other parents who were living with HIV. But that book never got finished, because he died in October of 1992. However, he suggested to Stephanie that she write a book for kids her age. So one day we sat down at the computer, I asked her some questions, she answered them in her own words, then she drew pictures to accompany the text. One of my colleagues at the National Hemophilia Foundation heard me talking about our little project. They asked to see it. They liked it. They had it printed and distributed it as a free publication through the foundation. I believe that people can still get copies directly from them by calling 1-800-42-HANDI. Ask for the book by name, My Parents Have HIV/AIDS; Some Advice From and 8-Year-Old. As far as feedback, I have had plenty. When it first came out, there was a lot of interest in it because many people were still grappling with telling their children, disclosing to their employers, etc. Stephanie actually got an award from the National Hemophilia Foundation for her work on the book.

Then in 1995, when I was on President Clinton's HIV Advisory Council, I gave him a copy of the book. He was so impressed by it that he wrote a letter to Steph, sent it to the National Hemophilia Foundation, and they had it framed along with a copy of the book. I have it hanging in my den here at home. Personal feedback that I have heard directly has been very uplifting. A man here in Michigan told me that he used the book to explain to his two daughters that he had HIV. Another woman, who I just saw in Washington, DC in February, saw me sitting at a table, came over and asked me my name. When I told her, she got tears in her eyes. She had not immediately recognized me, because I look very different due to my health issues. Then she went on to tell me that her son was "in love" with my daughter because of the book. He is two years younger than Steph and the book made a huge impact on him. At a time when no one would acknowledge what HIV was, he read the book and did not feel alone in the world. Finally he knew someone else who was dealing with the same problems. That was the whole point of writing the book -- to help others.

I understand that you have a project where you work with dolls and women with HIV.

This project is called STITCHES and it was designed in July of 1999 for women living with HIV. The program began while Candice Moench and I worked at The Midwest AIDS Prevention Project, but continues now out of my house. For several years, Candice and I had wanted to create a project that combined art and life, as an interactive way to educate the community at large. Plus, we wanted to find a way to preserve the stories of HIV-positive women everywhere. So, the dolls in the STITCHES project are created by HIV-positive women all over the country and then returned to us to become part of a continuing traveling exhibit. Not only does this project give women a safe place to voice their feelings about how HIV has affected their lives, but it's also a gift that others can learn from.

T-Bird dollStitches Dolls on World AIDS Day 2004Dolls on a Quilt
This is a doll named T-Bird. She was created by a woman living in Rivington House, a facility for women with HIV, in New York.This picture is of me along with part of the large display of Stitches Dolls at World AIDS Day, 2004, in Flint, Michigan. The doll on the table in front of me is mine. She is titled, BOUND.These dolls were made by women living in Loudoun County, Virginia. They decided to attach them all together to a quilt square.

What were the first STITCHES workshops like?

The very first one was done at a local AIDS organization for women. I took some plain rag dolls, some scrap material and sewing supplies, glue guns, etc. I met with the women, told them about the project and offered them the opportunity to take part. They all were very excited. That day they began work on their dolls, but it required a couple months, while working with a social worker, in order to finish the dolls. I returned and the women presented their dolls to me. They told me about some of their feelings while working on them. Many of those feelings echoed my own. When you read the monographs that accompany the dolls you will understand what I mean. The emotions expressed in them cover the gamut.

Due to the extended period of time it takes for the women to decide what they want their doll to look like, what message they want to convey to others, among other emotional factors ... we never see the whole process from start to finish.

Another workshop at Flint Wellness, at a support group for women, was very interesting. My daughter, Stephanie, accompanied me on this trip. (About an hour north of where I live.) The women wanted to share their stories with me while I was there. They felt a bond with me even though the circumstances of our lives were very different. I felt honored to be allowed into their stories, their lives. They promised that they would work on their dolls and call me when they were completed. Out of the seven women who were there that day, four dolls were created. So they invited me up to Flint for World AIDS Day to be a keynote speaker, bring more of the dolls to display, and welcome the four new "girls" to the traveling exhibit. It was wonderful. Other times, agencies in other states contact me after hearing about the project or seeing the website. Then I just send the plain dolls and the paperwork to the social worker/counselor who called me. They take it from there.

Can you describe your feelings when you were first diagnosed? Did you feel differently a few months down the road? How long do you think it takes to really process the diagnosis?

I was numb, very angry and totally incredulous. My husband and I were both diagnosed at the same time, in 1985. The only good news that day was that our 18-month-old daughter had tested negative, but, at that time, they couldn't be sure of the window period, so they told us we'd have to keep getting her re-tested for who-even-knew-how-long. So Mike and I both had the diagnosis, but there was nothing anyone could do about it. It was awful. We didn't talk about it much for the next four years, but in 1989 I just broke down after a pregnancy loss. By that time, though, a social worker at the Hemophilia Center was available to talk with people who were HIV positive, and we started a support group for women. Even there, though, most of the women in the group were HIV-negative.

Any tips for those who are newly diagnosed?

If you can, talk with someone who's been living with HIV for a while. The diagnosis is terrifying, and doctors aren't always all that good at explaining everything even if you are in a position to hear it, which when you get your diagnosis, you might not be. You're still the same person you were before, too -- it's hard no matter what, so remember that you're still the same person dealing with the same things you were dealing with before you got your diagnosis. Connect up and get the support you need.

If you want to, can you share how you believe you acquired HIV?

Sex with my husband, who was a hemophiliac. He got it through a transfusion, and I got it from him.

"Speaking out has definitely helped me cope, and I'm glad I'm able to help other people, no matter what their troubles are. I feel I was meant to teach and be a messenger, so that's what I do."

What do you believe was your biggest risk factor?

I was married, and more importantly: I loved someone. That's probably everyone's biggest risk factor.

What do you think is the first thing someone who has just found out he or she has HIV should do? What's the second thing?

First thing: Talk with others who are HIV positive for the perspective they can offer.

Second thing: Find a doctor who will listen to you! Clinical skills alone don't make someone a good doctor -- I've fired doctors because they weren't listening to me. You have choices, especially with treatment -- talk with a long-term HIV-positive person and pick their brains.

If HIV were a person, animal, or object, what would it be? Why?

When I was first diagnosed, I pictured the virus as something horrible and evil, like the Devil. Now, though, I picture it differently. Many years ago, I wrote a letter to the virus saying, "We can both live, if we learn how to co-exist. I think we can do this." So now, I just see it as a virus that lives in my body and causes me trouble every now and then. It's a shadow, and a good teacher.

What do you think is the biggest problem facing HIV-positive people today?

Stigma and finding decent health care and affordable medications. There are not nearly enough knowledgeable physicians out there -- lots of them are hacks. They're not malicious, but it's a complicated condition and you can't treat everyone the same way with the same treatments. The complicated nature of HIV treatment is a huge deal, especially for people who are living longer, because everything gets more complicated as you get older.

The stigma associated with HIV/AIDS is still such a huge deal -- people still make so many assumptions. I've had people up in my face with Bibles, telling me this is my "punishment." For what? For loving my husband and getting married and having sex with him? I have a special problem with religious zealots who want to make HIV about sin and punishment. Back in 1993, a friend and I were speaking in a town up in the Upper Peninsula of Michigan, and we had to stay in the rectory of a church in another town because people were so up in arms about "people like us" coming there to speak. I wish people would just step back, breathe and take their heads out of their butts.

What is the biggest change you'd like to see in HIV care?

I'd like to see more knowledgeable providers and much more research on women. We're different from men chemically and hormonally, and they're just now beginning to scratch the surface on all that as it relates to treatment.

How about in HIV education?

I want to see more real HIV education. There's almost no funding now for comprehensive sex education. The bulk of federal funding is going to abstinence-only programs when real, relevant education is needed. Young people are especially at risk, and school boards won't allow frank conversation, because too many people are too freaked out about sex to talk about it with their own kids, and, God forbid, they come home from a school health class with real questions! Kids are smart -- they know when you're snowing them, so don't beat around the bush. Get them the information they need.

When you look into your crystal ball, what do you see in the future for people living with HIV?

On the upside, research is happening. Medications are less difficult to take -- things are getting better. We have a lot more knowledge today, so fewer people run screaming from the room when you say, "I have HIV." On the downside, though, health care is so expensive and doctors are so afraid of lawsuits, and it's only going to get more complicated. What if insurance companies start putting caps on coverage? Someone's going to have to pay for all this and I worry about that.

How do you maintain a positive outlook?

I have a good outlook most days because I surround myself with love. My people are the best people in the world! I got stuck in guilt for a while, but I don't do that anymore. I wake up every morning assuming that today is going to be a great day. Laughing is wonderful too -- and I also eat dessert first whenever I feel like it!

What has been your overall experience with HIV treatment so far?

I have been taking HIV medications since 1992. Many of the early regimens I took were very toxic to my body and I had many side effects over the years. One drug caused ulcers in my colon and an abscessed hemorrhoid that I needed surgery to fix. All of the meds cause diarrhea, so I have had continual problems with that for 12 or 13 years now, every day of my life. Neuropathy in my feet, nausea and fatigue are also constant companions for me.

What is your current CD4 count and viral load count? What was your first CD4 count and viral load count?

My last CD4 was over 600, so that is good. Viral load is currently 257, that is good too. Previously I had two times in a row where my viral load was non-detectable. That had never happened before. So I would like to get down there again.

Back when my husband and I were first diagnosed in 1985, the tests were not as sophisticated as they are now. So my overall white cell count was elevated, showing signs of some type of infection. I believe my T cells were over 800 at that time. They were not able to measure viral load way back then, so I do not have any idea what that number was.

What HIV treatments have you been on, if any? What are the toughest side effects you've faced on treatment?

There is no way that I can remember the names and dates of all the meds I have taken over the years, but one point sticks out in my memory. In 1998, I got remarried. At that time I had been on ALL the medications that were currently on the market. I had either had an allergic reaction, my virus became immune to the meds or they became toxic to me. So I had no new medications to move to and my viral load was over 2.5 million. That was a very scary time for my new husband and I.

Lucky for me, the protease inhibitor class of drugs became available around that time, so I began a combination therapy that included one of those. That made a huge difference in my life. It brought my viral load way down. The unfortunate downside has been malabsorption and lipodystrophy. My body now looks like a scarecrow -- broomstick arms and legs and my face has lost all of its feminine contours. I appear skeletal except for my abdomen, which is very distended.

Not attractive to say the least, but I am alive and that is the most important thing. I am blessed in the fact that those who know and love me don't look at my physical appearance; they love me for what is on the inside.

How often do you see your doctor? How did you choose your care providers?

I see my Infectious Disease doctor every four to five months. But I have several other specialists who I must see in between those visits, so I go to the doctor once every couple weeks on the average for one problem or another. When you've been living with HIV infection for 20 years, your health becomes very complicated to manage.

I find my care providers by talking to other people. I have found most of my doctors by networking with other HIV-positive people or other doctors whom I trust. In the hemophilia community, we share lots of information with each other about treatments, doctors, complementary therapies, etc. This is a great way to find out about new things so you can speak to your doctor more intelligently.

What kind of relationship do you have with your care providers?

All my current care providers are people who I trust with my life, literally. They listen to me and don't make me feel like I bother them with questions. This is a necessity for me.

In the past, I have had to fire doctors who felt that because I wasn't a doctor I should not be asking them questions or telling them what side effects I was having. My belief is if a doctor doesn't listen to me, he won't be able to treat me effectively. My favorite line for a dismissive doctor is, "You don't live in here. I do. My body is speaking to me and I have to listen to it."

Do you have any health/wellness regimen that you feel helps you keep healthier?

I love to sing and dance. I also sculpt figures in clay -- which has helped me a lot since my father's death in December. It brings out a lot of stuff I didn't know I was still carrying around. I found that not everything has to be said out loud to be cathartic.

Any adherence tips for other people on treatment?

It is hard to continue taking meds that make you sick, but you can't play around with compliance. People often don't realize if they take their meds one day but then don't take them for two days, they won't work. In order for HIV meds to do what they are meant to, which is keep the virus from replicating, you must take them as directed. This sometimes means on an empty stomach, or with plenty of liquids or perhaps on a full stomach. As long as you follow these guidelines, the meds usually work well. If you suffer from nasty side effects, talk to your doctor. They can often give you something to take care of that. Taking vitamins can help neuropathy, for instance. Don't be afraid to be open with your health care providers in this regard.

How has your dating experience been since you were diagnosed with HIV?

I've remarried now, but I was single for many years. I was diagnosed at 26 and lost my husband at 34. I don't think I even made eye contact with men for the first year after Mike died. I felt like we'd made a pact when we got married. Then he died and left me alone here with this infection and who was going to want me? Eventually I dated another HIV-positive man, another hemophiliac from the support group. He died. I decided I couldn't do that to myself or my daughter again, and I probably wouldn't have dated anymore if I hadn't reconnected with a man who'd lived on my street when we were growing up. He was living in Canada, but he moved back here and we got married. We'll be together seven years this year, and our relationship is wonderful. We understand each other.

Who would you dedicate this award to, if you could?

No one person -- I'd dedicate it to all the people who inspire me. Some of those people have died from this disease, and some from other things. My husband Mike, because it took a lot of balls for him to go public that day… he was working in a field where he was recognizable both nationally and internationally, and therefore he had everything to lose. But he felt it was important to speak out, so he did. And I'd definitely dedicate it to my daughter -- she's why I continued living after my husband died, and she's an inspiration to me every day of her life.

Could you share a little personal information about yourself?

I love to travel. I have been in many countries around the world and love to learn other languages and customs. I work part-time as a tutor, teaching groups of students learning German. I also tutor special needs students in psychology and sociology.

I became an ordained minister last year so that I can help people create personal ceremonies for weddings, funerals, baptisms, house blessings and so on. This brings me great personal fulfillment while making others' wishes come true.

Where did you grow up?

I was born in Detroit, Michigan and moved to the suburbs when I was four years old. I grew up in Sterling Heights, where we were surrounded by farmer's fields and lots of trees for climbing. I went to public school and then worked my way through college.

What did you want to be when you were a kid?

My first interest was in medical technology. Looking at things under a microscope and helping diagnose illnesses really intrigued me. But I also had a great interest in writing and languages. Ultimately I got a Bachelor's degree in psychology.

What kind of work did your parents do?

My dad worked in data processing for the Ford Motor Company until he retired. My mom was a homemaker and avid volunteer for many organizations. Both my parents are loving and generous people. They opened our home to anyone who wanted or needed a safe and loving place to stay. When I was in high school, we had two exchange students live with us for a year. That was fun because we already had six kids in our family. The more the merrier!

What kinds of work have you done?

When my late husband and I got married, I did custom computer programming and training for small businesses. I have worked as clerical staff in several different companies. Then I began my work as an HIV educator. I did that for 13 years. Now I work part-time in a retail store and as a tutor. I have spent most of the last 15 years serving on several national volunteer boards, which is very fulfilling.

Who were the most influential people in your life, both professionally and personally? Why?

The people who have been most influential to me personally are my parents, who taught me to be generous, non-judgmental and a survivor. My friend Deb has been my spiritual mentor. My daughter Stephanie has given me hope when there was none, and has taught me more than I can put into words. All my friends in the hemophilia community who have gone through this difficult journey with me, especially Lisa, Jill, Ray and Cathy.

Professionally, Candice's guidance and support has helped me become a better teacher. She showed me new ways to reach people.

What do you like to do in your spare time?

Crossword puzzles, solitaire, read, read, read. I like to write and also teach myself new languages. Currently, I am working on sign language and Spanish, with a little bit of Latin and Hebrew on the side.

Tell us a little bit about your husband.

"Clinical skills alone don't make someone a good doctor -- I've fired doctors because they weren't listening to me."

My current husband of seven years is a wonderful human being. He knew me growing up; their family lived down the street from ours. Bill was my older brother's best friend. At that time, the difference in our ages and attitudes meant we were only good friends. We always liked each other and respected our differences. When his family moved back to Canada, we still always kept in touch.

Years after my husband died, Bill and I started emailing each other. We would talk on the phone and over the Internet for hours at a time. We shared important issues with each other. It became apparent to both of us that we had a very strong connection. In 1998, he moved back to Michigan and we got married. He understands me like no one else does. Bill made a conscious choice to marry a woman with AIDS who had a young teenage daughter. That is brave! He makes me laugh and we like to do many of the same things, like go white water rafting, read and watch sci-fi stuff and travel. He has been a true angel in my life!

Tell us about your daughter.

I have one daughter, Stephanie who turned 21 on April 18th. She is working and going to college in Florida. I am so proud of her! She has been through so many negative things in her life, but still holds her dreams in her heart.

Do you have pets?

Bootsie, a miniature Pinscher. She has lived with us for three years now. She is not a dog; I am convinced that she is a little person wearing a black fur coat. She has a great personality and brings me much joy -- when she is not eating something of mine.

Where do you live? Describe your community.

I live in Macomb, Michigan, which is 22 miles north east of Detroit. This area was orchards and farms up until about 10 years ago. Now it is growing so fast that they have to widen all the roads. Our neighbors are friendly people. In our neighborhood, there are a lot of young children, which I like.

If you could live anyplace besides where you live right now, where would you live?

I would live in Florida so I could be close to my daughter. My husband and I are looking for jobs down there so we can make this a reality.

What's the biggest adventure you've ever had?

Life. Without sounding silly, my whole life has been one wild ride. There have been many exciting and joyous parts -- finding a special person to share my life with, traveling to so many places and meeting new people, having my daughter and becoming a parent. That is some adventure!

There have also been many incredibly sad and depressing parts as well: A terminal diagnosis at age 26, losing my husband at 34, dealing with major health issues for so many years, losing so many people to AIDS and hepatitis C, having to say goodbye to my father whom I loved so much. How can I pick what my biggest adventure has been? It's impossible.

What are you currently reading? What book or author, if any, has had the biggest impact on you?

Ten Poems to Change Your Life by Roger Housden. I got this as a gift from a very special friend of mine. I am just starting it. The Celestine Prophecy series by James Redfield had a major impact on the way that I think and approach my life and my interactions with other people.

What kind of music do you like?

I love all kinds of music. Some I like to sing along with, some I like to dance to and others I like because they are strictly instrumental. I love Jim Croce, John Denver, James Taylor, Carly Simon and Carol King, to mention a few. Latin music is very energizing, so currently I'm listening to that the most.

Anything else you'd like the people reading this article to know about you?

I am humbled by the fact that a friend of mine thought enough of me and took the time to nominate me for this award. I only hope that I can live up to this honor. I would like to spend the rest of my life devoting my time to helping others, not just people living with HIV infection, but all those who are stigmatized and disenfranchised. We must help one another. After all, we are all made of the same stuff.


About Kathleen Gerus-Darbison

Home: Macomb, Mich.
Diagnosed: 1985

Kathleen Gerus-Darbison, from the small town of Macomb, Michigan, transformed herself into a supporter of HIV-positive women after she was diagnosed with HIV, leading workshops where HIV-positive women turn simple dolls into healing works of art.