It’s a grey and rainy day when I arrive at Whitman-Walker’s Max Robinson center, but Robin Thomas’ laugh quickly lights up the room. It’s clear that she’s at home at Max Robinson, where she’s worked as a community health educator since 2013. As we take photos, crack jokes and eventually sit down to talk about her personal journey with HIV, her smile never leaves her face for long. Even when talking about trauma and tragedy, Robinson can see the bright side of anything. It’s one of the things that makes her such a valuable resource at Whitman-Walker, where she talks with clients who are struggling (and thriving) with their diagnoses every day.
Thomas is so adept at counseling people about HIV, that she founded Max Robinson’s first female support group. Named The Break Room, twice a month Thomas gets together with her group of women to chat about whatever’s on their mind. Yes, they talk about being positive and the importance of staying on their medication, but they also talk about life. They talk about dating. They talk about families. They talk about everything.
“I’ve had clients come in who weren’t doing very well… but then they meet this group of women and for the most part all of them are adherent and working. Some of them are volunteering, and that’s encouraging, to see people not sitting around and waiting to die,” explains Thomas.
After managing a store, selling Avon, being an entrepreneur and early childhood development teacher, Thomas has finally found her calling.
“The job I never really wanted ended up being the best thing that ever happened to me.”
Whitman-Walker is the official non-profit sponsor of the Bentzen Ball. If you can, please join us for the 2018 Walk & 5K to End HIV on Saturday, October 27 or at our Whitman-Walker benefit brunch with Antoni Porowski & Friends on Sunday, October 28.
What was your first job?
This was so long ago… Actually, I used to manage my dad’s convenience store. I did that for many years. I considered myself an entrepreneur for quite a few years. I sold Avon. I also ran a button company called Right On the Button: The Right Choice for Your Custom Buttons. It went really well for some years. I think that company kind of went by the wayside when I first tested HIV+. I kind of fell into depression. I was going through a lot at the time and I was a brand new mom. I was actually diagnosed when I was expecting.
That’s a lot to deal with at once.
Absolutely. It was totally overwhelming. This was 21 years ago, they didn’t even know exactly how to treat a pregnant woman to prevent a baby from becoming positive. So that was an added stressor. Even more so, because I had a neighbor who lived across the street from me and her sister had given birth to a child who was positive. She was taking care of the baby, and that baby didn’t live long.
That added a lot of stress too. I was expecting, HIV+ and I didn’t know if my child was going to have that struggle as well. There was a lot going on at the time. I didn’t think I was at risk because I was in a very long term relationship. Me and my husband-to-be had been in a 14 year relationship. We had two children together and on the third child I tested positive.
So you had no idea it was coming.
Absolutely. It was a really big shock.
How did you go from being an entrepreneur to working with Whitman-Walker?
I was depressed for several years. I just have to tell the story like it is. I was an avid reader and I had read this book that said, “Write your eulogy.” At the time my child was two and she was doing pretty well then. They had said that it looked like she wasn’t going to be positive. She was spoiled rotten though… I wouldn’t let anyone touch her, look at her, spank her. She’s still pretty spoiled! [Laughs]
It wasn’t about being suicidal or planning to die, but your eulogy is your life’s accomplishments and I said, “Wow, I haven’t really done much with my life.” I had these children and I had been trying to push them to get high school diplomas and go to college. At this time, I didn’t even have my high school diploma. I kind of got busy. I was going to church and reading the Bible. I kind of got this message, get busy living and stop worrying about dying. I went back to school and graduated high school when my oldest daughter was five or six. I was 36. I’ll never forget, my daughter told the whole world. I went to the grocery store and people kept saying, “Ms. Thomas, I heard about your graduating. I’m so happy for you,” and “Congratulations!” I’m at the gas station and I was like, “Did she put this on the news?” She told everyone and that was really special.
So I went to college and my goal was to become an early childhood development teacher. I loved being around children and as far back as I could remember, children would gather at my house and I would pop popcorn and I would buy bundles of balloons. We’d have water balloon fights in the summer and I would cook out and feed them. Kids were always attracted to my home for that reason. I would teach them lessons and everything. I thought I would be a good early childhood development teacher. I was working in the field and I was in an early learning center. It was going really well for two years. I went from being one of the best teacher’s assistants to being transferred to a new part of the center. The supervisor just didn’t take to me. It went from bad to worse and she fired me.
You know what? I wanted to quit every day because I was being mistreated anyway. I know I was doing a good job with the children, but sometimes you’re just not a good fit. It had to happen that way. I got fired from that job and I was going to start another business. I was selling something and I went to the clinic where I used to get care. I remember going in there and they were buying my product, I was laughing and telling jokes. They said, “We have a job opening.” I said, “I didn’t come in here for a job, I’m not looking for work.” So I just went on cracking jokes. And she said, “Seriously, Robin! It’s a mentoring job and you’d be helping HIV+ women.” I said, “I don’t want to work in the field of HIV!” She kept on talking to me about it and I said, “Aren’t other people applying?” and she said, “Yes, we had a lot of people applying, but you would be perfect because you’re outgoing and you’re still living.”
What was amazing was, four or five days later I got a phone call and it was my future supervisor. She said, “Hey, I got your name and number from so-and-so.” I said, “Really? I don’t know why she gave your my information, I told her I didn’t want a job.” She talked and she talked. She said, “Come on down here, I want you to meet somebody.” I remember hanging up the phone and thinking, why are these folks pursuing me like this? There’s got to be somebody else who can do this job. I remember, I was questioning a lot. I was questioning the Lord about this. I kept saying, “Lord, are you opening this door?” Because this wasn’t my plan. This wasn’t what I was prepared to do.
They told me to take some tests before they could hire me. I hadn’t been to school for a minute, and with math, if you don’t use it you loose it. I didn’t study or nothing. I thought, if I passed this test, I must be in. My phone rang and the woman told me I passed the test with flying colors and I almost fell out of my bed! I couldn’t believe it. It was really crazy.
I didn’t want to work in the field of HIV because even though I tested positive, I had a lot of stigma issues. I have to admit, at that time I hadn’t told many people that I was positive. I knew if I had to work in the field, I would have to be more open about my status. But I also thought it would be to my advantage to talk about it, because it’s a peer program. You can help someone when that’s your struggle as well.
So, I went in, did the interview and got the job. That was the start of something big. The job I never really wanted ended up being the best thing that ever happened to me.
So what do you do on a day to day basis? When you walk in the door, what’s your schedule like?
First I check my emails, but I normally make phone calls. I’ll see who is coming into the clinic because sometimes people have flags in their charts. I’ll connect with people who are out of care or come into care and they have a high viral load and a low C4 count, which means they’re not adhering to their medications. I’ll sit down and talk with them. Sometimes I’ll spend some time educating clients. That’s been very good because when you go on to see the doctor, they might say a few things but 15 minutes goes by so fast. When a client comes to see me, I can spend an hour with them. I’ve spent as much as two hours. Sometimes when a client comes into see me, they just want to talk. You have to allow them to talk and say the things that they need to say because talking is healing.
You want to find out what is their barrier to care. What is keeping you from being adherent to your medication? That can be a myriad of things. Including living situations, or sometimes relationships. It’s complex. I go through the charts and schedules and see who’s eligible for MyHealthGPS, which is a new programing we’re enrolling through medicaid. They can get a little more support, but also they’re eligible for transportation through the program. Sometimes I do home visits. I check on a lot of the clients I’m currently connected with. I have one client that was diagnosed with cancer and I check in with her daily. She is not just a client, I knew her before I worked here. She tells me I check on her more than her family, but that’s a good thing. I think it’s important to let people know you care about them.
Years ago they said that a lot of people who tested HIV+ were developing cancer. I heard that, but I didn’t see a lot of it. More recently, I’ve seen a lot of it. Also, some colleagues have recently died of cancer. It’s been a lot. I guess that can make you recognized how much people need to know that you care about them right now… And do all you can possibly do to help them. That’s my struggle too. I’m always aware that I’m HIV+ too.
It sounds like you’ve made a career out of caring for people… What do you do to care for yourself?
I like to take a bubble bath and just relax. I like listening to jazz music. I’m an avid reader… I just hang out with the family. We play cards a lot. It’s really competitive. I love to cook.
Watching CNN has become a favorite past time of mine because you can always find out what’s going on in the world of politics. That’s really important to me.
You run this amazing program called The Break Room. Why did you want to start it?
Actually, I didn’t! I had been connecting with some women and I had been referring them out to a support group. We didn’t have a women’s support group here, so I had been sending them to other agencies and they were coming back and complaining. We were having lunch one day and I said to Dr. Lane, “Do you know of any place we can send these women for some support? It’s so important that they get together and be able to share what’s going on and talk about their issues.” She said, “We need to start one…” I said “Yeah, go ahead and do that,” and she said, “…And you need to lead it!” I said, “No don’t do that!”
The next thing I know I got a call and they said, we’re going to start this group, what are we going to call it? It has worked out really well. Even better than I thought. Sometimes when you get a group of women together, it can kind of catty… But I think it was very important that we just came together to love on each other and not be judgemental.
We talk about disclosure, we talk about how to take care of yourself, we’ve had to tackle a lot of different issues. Stigma was a big one. I remember, we had a client who said her family made her feel this kind of way, because they would only let her use paper plates. They would go in and clean the bathroom with ammonia and bleach after she used it. She went through all kinds of things when her family found out that she was positive. I told her, “I know that’s your family and you love them, but I probably wouldn’t subject myself to that.” I’m at the point where no one can make me feel any kind of way about myself. I love me some me. I’m so grateful for that, because it was like this big dark secret I was hiding. I was worried about people knowing, and how they were going to treat me, but your real friends are going to love you no matter what.
One thing I’ve learned about HIV women is that a lot of them have endured trauma in their lives. Including myself. If I have an opportunity to connect with them, the first thing I want them to know is that I understand. When I tested positive, I was out of care for many years and nobody came to my door, no one was looking for me and nobody sat down with me to find out how I was feeling. It was very traumatic for me.
That’s so isolating.
Yes. I think that it’s very important for me establish that with the client. I’m just here for you. Sometimes that means, no matter what the decisions they make in life. I’ve seen some who have had addictions that don’t allow them to stay in care. I still knock on their door.
There’s been some amazing success stories though. I had a client call me and ask if I could help her friend, I asked about her and she told me she was HIV+, used to be 300 pounds and now she was down to 80 pounds. She told me about all of these horrible things that had happened.
She had been in and out of the hospital for a long time and they didn’t expect her to make it. I said, “I don’t know…” and she said, “Just call her.” So I called her and she wasn’t even getting care here… But she needed to be in care. So I went and picked her up and brought her in for a red carpet visit. I sat and talked with her and I asked her, “Do you care about living?” and she told me she didn’t know. She’d call me and we would talk. I would pick her up for appointments and knock on her door. I just connected with her. Two months later, she went into Joseph’s House and started to get better. I went up to Joseph’s House several times to have lunch with her. I went up a few times for dinner and it was amazing. Her life has turned around and she’s doing really well. She had a degree and she’s back to work now.
Why do you think The Break Room is so different from other support groups? What makes it special?
First of all, I allow the women to come up with topics. Second, we don’t just sit down and talk about HIV all the time. For instance, our ice breaker last time was, “Tell a joke or a funny story.” It’s awesome to start off with something that will make you laugh. I want them to know that you have HIV, but HIV don’t have you. It’s not the be all end all. You can’t make it the biggest thing in your life, because then you’re consumed by it.
I’ve always felt like, in order to defeat this disease, you have to know what weapons to posses. For instance, I talk a lot about inflammation. HIV causes inflammation in every organ in the body. Just that talk alone has been enough to get some clients adherent, when they understand how inflammation works. I’ve had that talk with several clients and they came back tacking their medication.
Some things just click with people.
Yes, it doesn’t work with everybody, but it has been effective with some people. You just don’t know what will stick.
The theme is The Break Room: Relax, Relate and Release. We’ve had some women form some amazing friendships and they get together outside of the program. It’s just been awesome. I can’t imagine being without The Break Room now. It’s been pivotal. I’ve had clients come in who weren’t doing very well and struggling in their health, but then they meet this group of women and for the most part all of them are adherent and working, some of them are volunteering, and that’s encouraging, to see people not sitting around and waiting to die.
It seems like you inspire a lot of people, but who inspires you?
I had this amazing friend, Carolyn Massey and she was the president of OWEL, Older Women Embracing Life. OWEL was for people who were HIV affected or affected by HIV, because of a family member. She was very pivotal and inspiring. I say was because about six months ago she passed away. She was amazing though, she was a champion in the field. When I first got the job, I met her and she would invite me out to events and she would be boldly talking about testing positive and working in the field. She always said people allocate money to things without allowing us to say what we need. She did a lot of things and she was my mentor. I would come out to her group sometimes and I’ve actually taken people from The Break Room to her group. That was a very good experience. I would use my lunch hour and we would go over and visit her.
My children inspire me, especially my daughters. My baby girl, they had this talk at her school about HIV and she said the teachers allowed the children to talk and talk. She said they were saying a lot of things that weren’t correct and she said, “No that’s not right,” she kept correcting them. They asked her, “How did you become the expert on HIV?” And she said, “My mom is a community health educator and she works in the field of HIV and she tested positive 18 years ago.” She said so many people were shocked. I said, “They probably talked about me something terrible too,” and she said, “They better not talk about you.”
It took me some years to tell them. I think I was positive for almost ten years before I told my children. I didn’t want them to have the extra pressure or stress of worrying about me not surviving. And you know what, I didn’t know a lot of people who had survived that long. Even at that time. I was just as shocked as anyone. And here I am 21 years later. It’s been a heck of a journey.