November #118 : A Place at the Table - by Nick Burns

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Table of Contents
 

Senior Class

A Place at the Table




Food for the Soul

Med Blues

Doctor's Diary - November 2005

Talking Turkey

Licking Lipo Where it Lives

Tea Cells

Ask the Sexpert - November 2005

Bedroom Gambling

Word Therapy

Employee of the Month - November 2005

No More Stickups




Postscripts from the Edge

Buzz - November 2005

Positive I.D.

Courting Disaster?

Rent's Due

Mentors - November 2005

Pushing the $$$ Envelope

I Demand a Recount

We are Family




Founder's Letter - November 2005

Mailbox - November 2005



 
Most Popular Lessons

The HIV Life Cycle

Shingles

Herpes Simplex Virus

Syphilis & Neurosyphilis

Treatments for Opportunistic Infections (OIs)

What is AIDS & HIV?

Hepatitis & HIV



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November 2005


A Place at the Table

by Nick Burns

Pull up a chair to our holiday spread—turkey, trimmings and tough talk about the meaning of gratitude for people with HIV. Eat your heart out, Martha

What do we talk about when we talk about gratitude? In the early days of the epidemic, HIVers who found a place at a Thanksgiving table were likely grateful just to be alive. But treatment advances over the years—at least for those fortunate enough to access them—have exploded our previous notions of holiday thanks. Should we be grateful for what we simply deserve? How do we temper the ferocity that has won us medical and civil gains with the enduring grace of a simple thank-you? And should we ever be grateful for the virus itself? POZ feasted on these and less-filling matters by sharing a traditional Thanksgiving menu in a New York City apartment in September. Our five guests represent spectacularly varied experiences with HIV. You’ll meet Kwame Banks, 37, the first African-American HIVer to win the American Leatherman title; Annette Lizzul, 44, a POZ cover girl and 20-year veteran and activist; Shirlene Cooper, 43, a community organizer for the New York City AIDS Housing Network and former drug addict; and her daughter, Lamea, 24, who is HIV negative. As POZ founder Sean Strub moderates, they swap fearlessly personal tales of gratitude, family and their most memorable Thanksgivings.

Sean: Thank you all so much for coming. Before we eat, I’d like to go around the table and have the four of you introduce yourselves and your journey with HIV.

Annette: OK. Well, my name is Annette Lizzul, and I live in New Jersey. Sometimes I think it’s just amazing that I got this disease, because I grew up the good Catholic girl, never doing drugs, never sleeping around—I never thought it could happen to me. And then I fell in love with a guy who I had no idea was on [intravenous] drugs. I met him in 1984, and in ’86, he was dead.

Kwame: I’m Kwame Banks, but some of you know me as “Blackkat” in the leather community and from the August POZ cover profile. It mentioned how this year I was the first black HIVer to win the title of American Leatherman. My journey with HIV has been interesting, because I didn’t get sick and have the experience a lot of other people had. I wasn’t diagnosed in the hospital; my life wasn’t at a standstill; I continued going to work every day. I had to fit HIV in with everything else that was going on. I remember telling my first doctor that I felt weird, because I never cried. She said, “Well, at this point, you probably never will—just do what you have to do.” And to this day, I’m still doing what I have to do.

Shirlene: I’m Shirlene Cooper. I was diagnosed with HIV in 1997 and was immediately rushed into the hospital. It was extremely hard for me to watch my family deal with this. Every day, I had to make sure that I got those AIDS pills down my throat, instead of all the other [illegal street] drugs I was using at the time. My choice now is to keep myself alive.

Lamea: My name is Lamea Cooper, and I’m Shirlene’s daughter. I can remember when she sat down to tell me that she had the virus. I heard everything she was saying, but my mind was blank. I was a kid, you know, 16 years old, and I was like, “Oh, my God, I’m not going to have a mother anymore.” You can’t ever prepare yourself for that. Some of the extended family members she told wanted to isolate her, and it made her uncomfortable.

Sean: Family members wanted to isolate her?

Lamea: Yeah, it was tough. They didn’t want her to eat with the family; they didn’t want her to touch their things.

Sean: Well, we’re delighted to have you all eat with us. But, um, I don’t know how to carve a turkey. So let’s go ahead and start serving ourselves. And would someone like to say a prayer? I’m not very good at that, either.

Kwame: I will.
[Brief silence as everyone joins hands]

Kwame: Creator, we thank you for bringing us all together this evening in this space and in your care and in your fold. We pray that as we move forward this evening and to all days and all evenings, you will be with us and guide us, keep us in your care, keep us in your life, keep us in your spirit.

All: Amen.
[Everyone starts eating.]

Sean [to all]: Do you traditionally pray before you take your meds?

Annette: I’m Roman Catholic. We pray for everything.

Kwame: All the time. Actually, I pray when I pay for my medicines. [Laughs] My prayers are a lot more than just tradition and more for the moment. It’s about me giving thanks each day.

Sean: How important is prayer in your life and with HIV?

Annette: Really important. I grew up with a very religious and spiritual family. I broke away from organized religion for a while, but I always remained spiritual. I believe in a higher power, though I’m not sure exactly what she is. [Laughs]

Kwame: I’m actually a priest in the Nigerian religion of Ifa, the religion of the Yoruba people. The year I was diagnosed was my first year of priesthood. So when I found out—with the space I was in spiritually, mentally, emotionally, physically—I knew that I could manage, and I was able to move forward. It’s not about the religion and the practice—it’s about being able to understand that you don’t have control over everything, but you do have resources for everything that occurs in your life. I mean, if I’m going to die next week, that’s what it is.

Sean: Please pass the gravy down here. What is Thanksgiving like for everyone?

Shirlene: Thanksgiving Day is one of my favorite holidays, ’cause I was born on Thanksgiving in 1962. My whole family enjoys my cooking, and their friends do, too, so I try not to tell too many people when I’m hosting dinner. Otherwise everyone will come, and each will bring five other people, and I’ll end up with an overcrowded apartment.

Annette: I should get your address!

Shirlene: It’s always amazing and a reason to be thankful. That’s what the holiday is intended for, and I’m thankful that I am still alive now. And I’m thankful for my family—especially when they are sitting down and eating— everybody is happy.

Sean: [Looking at Kwame] And when you think of your family, what comes to mind?

Kwame: I come from a hard-core country family, and I mix it up with my friends—my other family—during the holidays. I come from one of those houses where all the family members, like for Thanksgiving or Christmas or Easter, come into town. And you can always bring someone, knowing how much my mother cooks.

Sean: And you, Annette?

Annette: My family’s pretty basic: Italian and dysfunctional. My sister comes in from Philadelphia, and we all have dinner together. Usually, Italians have a huge dinner: the antipasti, lasagna and then comes the turkey and after that—I don’t even know what comes after that. It just goes on and on.

Sean: What was your most memorable Thanksgiving?

Kwame: One year, my leather daddy drove up from DC to see me, and it was the only Thanksgiving I ever ate in a restaurant. My oven broke the day before. It was incredible to spend Thanksgiving with one person and to focus on them and to have them focus on you. It was one of the most powerful experiences I have ever had in my life. I can’t even describe the way my heart felt.

Annette: Every year is memorable with my crazy family. One year my mother had just had surgery, so she couldn’t cook. My sister and I took over. We Italian girls had no idea how to cook a turkey— we called the Butterball hot line.

Sean: The Butterball hot line?

Annette: [Laughs] Yes. We called the 800 number from the Butterball turkey company and were on the line while they told us what to do. We finally figured it out—and we basted the turkey with Courvoisier cognac. It was the most delicious thing.

Sean: Thanksgiving is particularly a holiday for families. But when HIV becomes a part of the American family, how does that change them and how they see you?

Shirlene: Well, I think we mean just as much to them as they do to us. I know my family would rather have me sitting with them at the table than have to put me in a box and bury me. My family is grateful that I’m still here. And at the New York City AIDS Housing Network, where I work, I actually cook for anyone there or any of the people we serve who don’t have a family or a home. If they aren’t accepted at a Thanksgiving table, then I accept them.

Annette: I actually think it’s about how you fit in the “family of the world.” And I think people with HIV and AIDS are the ugly stepchildren. I don’t think that we’re accepted now in the U.S. This country still can’t step back and have a normal conversation about these issues. We still have a long, long way to go—at least until the next election. [Laughter around the table] We need someone to pay more attention and to get these issues out there. You know, I’m sorry, but we really should have a cure by now. Right now people with HIV and AIDS fit in only as either a subject of pity or scorn or disgust—but never acceptance.

Sean: We might find acceptance in our own circles. In a broader sense, we’re still the “others.” And that broader otherness isn’t just people with AIDS. It’s people who are addicted; it’s people who are poor; it’s people who are homeless.

Kwame: That idea can be overwhelming on a holiday. I’ve gone to homeless shelters on Thanksgiving, and it’s been incredible to witness what some people have gone through and are still going through, whether they are positive or not. I think about homelessness, poverty—so many other issues. You know, it’s nice that every grocery store wants to give away 5,000 turkeys for one day. But people are not going to eat 5,000 turkeys in one day—people need to eat every day, and people need to be able to bathe every day and use soap and have clean underwear every day.

Sean: There’s a huge division between the rich and poor, but there’s a growing division between the “well” and the “unwell.” Poverty is a huge part of it, but it’s beyond that. And you can see it in the experience of Hurricane Katrina. There’s a spectrum out there, and sometimes I see the well people—at least well in terms of their health or in terms of their affluence or whatever—and I often feel an expectation from them that we ought to be grateful to them. I’m grateful to everyone, but sometimes I feel like there’s something the well could learn from us, that there’s something that we have, an experience we have, a perspective we have. An honesty and truth about what the world is really like for hundreds of millions of people, that they could pay a little closer attention to and learn from us.

Kwame: There are also folks living with HIV who see themselves as the well. There are the people who don’t have it, but then there is our own community, and we’ve gotten to a point where there’s an affluent group of folks with HIV, then there are the poor people with HIV—and they are the ones who need all the help and all the services. Those are the challenging conversations that people don’t want to put on the table, but they have a real impact on how we are and how we’re living.

Sean: In every kind of group in America, whenever you start dividing people, you are going to find contradictions within that. I mean there are—whatever it is—gays who divide themselves from other gays, “Well, I’m gay, but I’m not promiscuous,” or “I’m this, and I’m not that.”

Shirlene: I don’t care how you look at it, how you divide it. Once you face death as closely as I did—I don’t care if it’s HIV-related or not—you don’t take life for granted. I don’t take one moment, one hour for granted. Everything is precious to me—this cornbread that I’m holding in my hand is precious to me. I’m not taking anything else for granted, and it took HIV to get me to start thinking like that.

Sean: Shirlene, it sounds like it took this virus to get you from point A to point B, and point B is a better place for you than point A was. Is there something you’re grateful to this virus for? There’s always this kind of weird thing that people say—“AIDS is the best thing that ever happened to me,” or whatever. But I sort of understand what people are talking about, because it gives you a clarity of purpose about your life. Having the near-death experience that you had made your life more meaningful to you, and I think for your daughter. What do you think? I mean it’s weird to say we’re grateful to a virus, but since it’s Thanksgiving, a time when talk turns to gratitude, is there at least something that HIV has brought to your life that’s good?

Shirlene: Obviously, I wouldn’t say it was the best thing that happened to me. But I could certainly say it was a blessing in disguise. It woke me up and made me be a mother to my daughter, which I wasn’t doing because I was using drugs. It also stopped me from using drugs. It woke me up in so many different ways. It gave me my life back. I got my life back. I got me back. I got Shirlene back.

Sean: It wasn’t the virus in and of itself, but it was how you reacted to it, how whatever it was that pulled the trigger in you—that’s what you certainly needed. And how about you Kwame?

Kwame: Since I was diagnosed with HIV, I can talk about a lot of other stuff now. I guess courage manifested in me in a very different way. It helped me in terms of deciding to go after what I wanted and not feel like this couldn’t happen or I couldn’t get that. That’s what HIV did for me. Now on the flip side, there’s a lot of stuff I don’t like about HIV. Some days it’s a pain, so I don’t know if I would jump up and down with the pom-poms and say that  it was the best thing, but it probably ranks in the top three of my life-changing moments.

Annette: It was the kick in the ass that I needed. I was always assertive, I was always an outspoken person. I was never afraid of speaking my mind, to be the one to stand out in the crowd saying what I thought was wrong. For me, it just made me even more of a pain in the ass and move forward with my life. Though it has taken a while—I can’t deny that.

Lamea: I’m grateful for the fact that it changed my mother—it physically changed her. She stopped abusing drugs; she became more active in my life and wanted to be a mother to me.

Sean: Would you want your old mom back—when she didn’t have HIV?

Lamea: Oh, no.

Sean: You think she’s better with HIV than without?

Lamea: Yes. She’s a whole different person than I can remember. There were times that my mother promised me, before she was HIV positive, that she was going to change, she was going to stop doing drugs, she was going to get a place for us, and it was just going to be me and her. And you know, kids believe that. And I believed that, and it was a disappointment for me each time she didn’t do it. It was definitely hard, and when she told me for the final time that she was going to do it, in my head I thought, “She’s told me this a hundred times. I don’t believe it.” But she finally did do it. And I’m very happy that she got up and took action.

Sean: If only we could find the magic switch that could enable people to do the things that they want to do. ’Cause each of us has those things in our life, even today—I don’t think anyone at this table claims to be perfect. How do we find the something else out there that will slap us upside the head and make us go to the gym or stop smoking or—or do whatever it is we need to do.

Kwame: I don’t think that there’s just one thing. I think all the things have to come together. I do believe that the Creator has given us things in our life, and they are lessons that we are supposed to experience. It’s weird to call it a blessing, but at the end of the day, anything that enhances your life experience is a blessing.

Sean: HIV is a lousy thing, and we don’t want anybody to get it, but to the extent that it has brought about change in our lives or brought about greater fulfillment in our lives, greater purpose in our lives—that’s something to be grateful for.

Annette: Well, I’m probably most grateful for my very wonderful, loyal—and as I’ve already said a couple of times—dysfunctional family. Really. I’ve heard horror stories about all kinds of people who are ostracized and turned out of their homes when they disclose. From the beginning when I told my family, they just wrapped their arms around me. My mother is now 82, so at the time, for her to even find out that I had had premarital sex was something that she had to get over. But they embraced me, and they never wavered.

Shirlene: You know that expression, “God works in mysterious ways”? Well, I’m just grateful for tonight, for instance. My daughter and I were having some problems recently, and we weren’t even speaking. Then someone from POZ called and asked us to come to this dinner. It brought me and my daughter together. So I’m grateful to you guys. I’m sitting here with my daughter, whom I love very dearly, and right now I have so much love for all of you—you’re my family, and I really feel like this is a real Thanksgiving.

Sean: Wow. This is a pretty amazing group. I can’t decide [pointing to Shirlene and her daughter] which one of you I admire more.

Shirlene: Thank you. We have our moments where we’re at each other’s throats, but at the end of the day, we look out for each other.

Sean: And Kwame, let’s hear from you.

Kwame: This has probably been the most phenomenal year in my life. There’s not just one thing that I’m grateful for. It’s everything. For example, I don’t know how much people know about the leather community, but I thought my parents would freak out when I told them I was interested in competing for the title of American Leatherman. But they said, “Well, if you want to do this, then it must be really important.” I’m grateful that I was able to see what unconditional love and support really is. That’s a beautiful thing.

Sean: Indeed. Yesterday was 20 years since I tested positive, and I was probably infected several years before that, when I was 20 or 21 years old. It’s an obvious milestone, and just survival is clearly something to be grateful for. But this conversation reminds me how lucky and inspired and nourished I’ve been by so many other people who have struggled with this virus and struggled with struggle. I certainly didn’t grow up aware of the privilege that I was given in life, and it’s been a journey for me— probably one of the most important ones of my life—recognizing and being grateful for the privileges I’ve been given and trying to be as responsible with them. And that’s been brought about by meeting others who struggle, others like you tonight. We should probably have one final expression of gratitude—to everyone who put this evening together. It’s been amazing. Thank you. Now who wants a piece of pie?


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