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Siyayinqoba Beat It! 2006 Episode 7 -
Meet the support group
In this episode's Siyayinqoba Beat It! support group, we got to know more about new support group members, Shalom, Thami and Fanie; from how they contracted HIV to how they are coping with stigma and discrimination and how they educate others about accepting people living with HIV/AIDS.
Shalom Ncala: Molweni, sanamukela ku-Siyayinqoba Beat It! support group. Igama lam ngingu-Shalom Ncala. Kuleliqembu lokusekela le-Siyayinqoba Beat It! sonke siphila negciwane le-HIV. Sihlangana njalo ngeviki ukuba sixoxisane ngezinto ezithinta impilo yethu maqondana nge-HIV, ukusuka kwezocantsi kanye nomuntu ongenwe yigciwane ukuya ekubhekaneni nokukhishwa inyumbhazana nokungavumi. I-Siyayinqoba huhlelo lwakho lokuphila ngcono ne-HIV. Uma uphila negciwane le-HIV, noma unomlingani, ilunga lomndeni, noma umngani osengenwe yigciwane le-HIV, i-Siyayinqoba ngeyakho. Kodwa ngaphambi kokuthi siqhubeke ngohlelo lwanamhlanje, iqhawe le-Beat It u-Busi Maqungo usesibhedlele. Kusolwa ukuthi une-TB yomgogodla. Akhe sizwe ukuthi kuhamba kanjani ku-Busi esibhedlele. {IsiZulu} [Hello and welcome to Siyayinqoba Beat It! support group. My name is Shalom Ncala. Each week we get together to discuss issues that affect our lives with HIV, from nutritional supplements to sex and sexuality. Siyayinqoba is your guide to better living with HIV. If you are living with HIV, or you have a partner, a family member, or a friend who is HIV positive, Siyayinqoba is for you. In the Beat It! support group we are all living with HIV. But first, Beat It! stalwart, Busi Maqungo is in hospital with TB of the spine. Let’s get an update from Busi in hospital.]
Cape Town, Western Cape – “I thought it was some minor back pain”
Busisiwe Maqungo: Hi everyone nani babukeli emakhaya. [and the viewers at home.] Ndiyanikhumbula nonke. Ndisesibhedlele, ndine-TB ye-spine. Ifunyaniswe sekuk’dadlana kodwa ke izawutrithwa, ndiqalise i-treatment yayo namhlanje. [I miss you all. I’m in hospital and I have TB of the spine. They only found that out a bit later, but it will be treated and I start treatment today.] I didn’t notice it ngokhawuleza because ndandiyazi uba yintoni, I just thought ngumqolo nje obuhlungu, ndayiyeka ixesha elide. Kodwa ngoku it’s been found out uba yi-TB. [I just thought it was back pains and I ignored it for a long time. But it’s been found that it’s TB, and I start treatment today.] {isiXhosa}
Support group
Shalom Ncala: Siyabonga sis’Busi, sikufisela ukuba usheshe ululame futhi sithemba ukuthi uzobuya ubenathi kungekudala {IsiZulu}. [Thank you Busi, we wish you a speedy recovery and we hope that you will be back with us soon.]
Lihle Dlamini: She’s always laughing and we can’t even tell ukuthi uyagula. [that she is sick]. I remember the last time sishoota, wayekhala nge-backache [In our last shoot, she was complaining about a back ache] and we all thought that she had broken it nges’khathi ejima kanti [at the gym.] It was something serious. Ngiyathemba ukuthi senulubonile ushintsho olukhe labakhona kwi-support group yethu. Seniyibonile ne-presenter yethu etsha u-Shalom Ncala osenamasonto ambalwa ekhona. Kodwa sicabange ukuthi sizothola okumbalwa ngaye, u-Thami kanye no-Fanie, ngakho ke iqembu le-Siyayinqoba ihlanganise lendatyana ngo-Shalom namanye amalunga amasha. {IsiZulu} [I trust you have noticed the changes in our support group. You’ve seen our new presenter Shalom, for a few weeks now, but we thought we’d find out a bit more about her, Thami and Fanie. Our Siyayinqoba team put together a profile on Shalom and other new members.]
Johannesburg, Gauteng – Meet the new host of Siyayinqoba Beat It!
Shalom Ncala: This is Soul Fusion, Lebo, Nhlanhla, Thokozani our newest member and Thabang our guitarist. We perform at Candle-light memorial services, we do awareness campaigns as well. We do nights of soul. I became a renewed person when I joined this campus. It will forever be my first love because of the love that I received from the people from around here. They were totally open to the idea of a HIV positive person coming to work amongst them. Uthola kwami ukuthi nginengculaza kungitshintshe ezintweni eziningi ngoba at times nganginoba bu-careless, ngisazazi ukuthi ngingumuntu o-right, anginagciwane, ngenze noma yini into engifuna ukuyenza. {IsiZulu} [Finding out about my status has changed a lot of things about me. Because before I would be careless, thinking that I wasn’t infected, I can go wherever, do whatever I wanted to do. Even though my parents would say to me: “No you are not allowed to go”] and I would force my way through and say that I want to go. So there are certain things that I need to look out for but still insist on having fun because life is about fun but in moderation. So I’m doing everything in moderation. Uyabona indaba ye-dementia iqale nga-joina enye i-trial yama-ARVs where bangifaka kwi-Stocrin ne-AZT ne-3TC. Within the first week ngiqeda ukuwaqala amapilisi, kwaqala lamaphupho mabi because uyazi ukuthi i-Stocrin yenza amaphupho amabi ebusuku. {IsiZulu} [I got dementia when I joined a ARVs trial. I was put on Stocrin, AZT and 3TC. I started having bad dreams within the first week of starting the pills because Stocrin gives you bad dreams.] So I dreamt all sorts of stuff; I dreamt about planes coming through at night while I’m sleeping and they were flying this. And it became something like a nightmare. Each and every night I used to experience something like that and through that, something crossed over, it felt as if the world was ending because now I’ve got this disease. It’s been a hard road to get to where I am. From a CD4 count of 9 to where I am standing now, which is 434, I can’t believe it myself at times when I look at myself and the achievements that I’ve had in the past five months. People thought that I would have died by now. From a CD4 count of 9 no, people are dying. Ha se ofihlile mo, omothu oshweleng vele. {Sesotho} [When you get to that point, you’re already a dead person.] But now here I am this person who is able to interact with the rest of South Africa. And share experiences, it’s the fulfilling experience
Support group
Vuyani Jacobs: Yintoni ekwenze wafilisha ngcono? Dementia yinto ebuhlungu, njeng’ba usitsho because nam bendikhe ndilibale, ndibenezinto ezininzi but ndancedwa ngama-ARVs. Khawutsho wena inoba udle kamnandi, waphila wanje. {isiXhosa} [What made you better because dementia is a traumatising illness? I was forgetful because of dementia but ARVs helped me. So what helped you? You must have eaten something good.]
Shalom Ncala: Into eyanignceda kakhulu I should say yindlela yokufunda kabanzi nge-HIV, first of all. Futhi nokuthi singa-give up as a family, well banga-give up [What helped me is that I did research on HIV. And my family did not give on me.] By then, you can imagine, nidila nomuntu one-dementia [you’re dealing with dementia.] They had to instruct me in each and everything bengiyanza, from ukuthi ngenza ini, ngidla ini, ngidle ukudla okunomsoco [I did, from what I ate, everything I did. I ate healthy food and so on. They tried to keep the environment positive.] There would be trips to a park to wherever [where I would feel encouraged about life.] But enyy into e-important ngama-antiretrovirals ami [But another important factor are my ARVs], I wouldn’t be here without them. {IsiZulu}
Thami Mthembu: Angazi, ngikubona unes’bindi kakhulu ngoba mangicabanga mina ukuthi ngisaba ukwenza i-CD4 count yam because ngesaba indaba yokuthi mangenzeka sekuyis’khathi soqala i-treatment. Ngiyazi ukuthi angikalungeli ukuthi ngingaqala i-treatment so into engi-fascinatayo nge-story sakho ukuthi, ekubeni une-dementia ukwazi kanjani u-adhere kwi-treatment yakho? {IsiZulu} [I don’t understand where you get your incredible strength from. Because I’m afraid to go for my CD4 count test because I fear having to start treatment. I know that emotionally and spiritually, I am not ready to start treatment. What fascinates me about your story is that when you got dementia, where did you get your strength because treatment is a life long treatment. How did you manage to adhere to your treatment in that state of mind?
Shalom Ncala: First of all, my parents wouldn’t let me go, I wanted to die. I personally wanted to die from this whole thing but they just wouldn’t let go of me. And they made sure ukuthi if ngithi i-appetite ayikho, ubaba wam ebezovuk’ekuseni, angene ekamereni ephethe i-glass neepilisi, ang’cenge athi mangiphuze. Ngine-dementia, angifuni ukwazi niks. Ngiyazibuza nje ukuthi ufunani kemanje ekuseni kangaka ubaba? Ungayibeka uthi bayakufosta kodwa abakufosta kodwa akufosta as such because they’re doing it out of love abafuni ukuluza. {IsiZulu} [If I had no appetite, my father would wake me up early in the morning, my father would wake up as early as 5am, walk into my room with a glass of water and pills and insist I take it. All I wanted to know is what he was doing in my room. One would say they were forcing me but they were not forcing me, they didn’t want to lose me. So that’s why they insist on you taking the treatment.]
Vuyani Jacobs: The other thing I think contributed to Shalom is the belief in that system, the belief in antiretroviral drugs. You see, your question of emotional readiness comes in the sense where people who are sick of AIDS, have no idea which one is the right one. Because there are powerful people talking lies, powerful people talking rubbish, I’m sorry, but talking things that are not scientifically proven. And now good people are confused and ordinary people are confused.
Shalom Ncala: uma sibuya emakethe sizobheka indaba yelungu elincane kunathi sonke le-support group yethu u-Thami. Ninganyakazi. {IsiZulu} [After the break, we take a look at a profile of our youngest member, Thami. Don’t go away.]
Shalom Ncala: Mbukeli siyakwamukela futhi ku-Siyayinqoba support group, uhlelo lwabo bonke abanegciwane le-HIV nabanezihlobo ezinalo. Akhe sithi ukubheka ukuphila kuka-Thami. {IsiZulu} [Welcome back to the Siyayinqoba support group – the programme for everyone infected and affected with HIV. Let’s take a look at a few minutes of Thami’s life.]
Durban, KwaZulu Natal – “I disclosed on Siyayinqoba Beat It!”
Thami Mthembu: Igama lam ngu-Thami wakwa-Mthembu, ngineminyaka engu-23 ngihlala e-Chesterville, ilokishi lase-Thekwini. For the first time uMa wayeseqala uku-understanda i-sexuality yam, kwase kwabakhona lesihlakalo. Into engayicabanga along the way was that angizange ngingabaze nakancane ukuthi ngimtshele. Ngamtshela ngathi “ma nginengculaza”. Abantu abaninzi abangibukayo, ngiye ngikhohlwe ngiba on TV on Sundays. Into ethanda ukuba imbhana about the whole incident is that kade ngisho ekuqaleni ukuthi people around me obviously knew my status because I was puplicly doing things. Ezinye zezinto ezazenza ukuthi ngisabe ukuba kwi-Beat It!, yaz’ukuthini ngihlala elokishini, sengizobonakala kwi-TV manje, abantu bazothi ngi-HIV positive, bazongithuka. {IsiZulu} [My name is Thami Mthembu. I’m 23 years old and I live in Chesterville. For the first time, my mother was starting to understand my sexuality and trying to help me as her child, then this happened. What I was thinking was that she has had to defend me and deal with my homosexuality to the rest of the family and the community and I dropped out of varsity in that same year and now there was this bombshell that I had to drop again. I never doubted that I’d tell her. So I immediately sat her down and I told her: “Mom, I’m HIV positive”. One thing Beat It! has done is, firstly, I have a lot of people greeting and looking at me. Many people, including my family, are watching me. Sometimes I forget that I’m on TV on Sundays. One negative aspect about the whole incident, like I said before is that I made the assumption that people around me knew my status because I was publicly doing things and so I thought that my family members know. For a lot of them, it’s a new thing. To be specific, it’s something they discovered last week Sunday. One of the reasons I feared being on Beat It! is that people are going to watch it and know that I’m HIV positive. I thought of the time when I was coming to terms with my sexuality and people were throwing stones at me and I was thinking this is going to start again. I’ve been amazed at the support I get from people. ]
Support group
Shalom Ncala: Why did you choose this form of disclosure?
Thami Mthembu: I think Shalom, into eyodwa ekufuneka ngicacise ukuthi angikhethanga lokhu as a form of disclosure, angizange ngikwenze as an intent yokuthi sekuyindlela yam yo-discloza. Ngesikhathi ngi-discover ukuthi ngi-HIV positive, ngasengivele ngisebenza as an Outreach trainer so ngasengiphuma ngisiya emphakathini ngifundisa abantu kabanzi nge-prevention, nge-treatment and that sort of thing, so I was really in the industry. Emva kwalokho umsebenzi wam became more prominent in the centres. Masengiqala ngi-discoza kuma-conferences nakuma-workshops ngezinto ezikanjalo. Ngiyakhumbula kukhona ne-insert u-Beat It! ayenza ku-Ronald Louw eyavela as well. Abantu abaningi basekhaya bayibona lo insert and so mina ngenza i-assumption yokuthi ekhaya they are aware ukuthi I’m HIV positive. {IsiZulu} [One thing I want to make clear is that I didn’t choose this form of disclosure. It wasn’t my intent for it to be a form of disclosure. It was purely coincidental that it became a form of disclosure. At the time I discovered I was HIV positive, I was already working as an outreach trainer, educating the community about prevention, treatment. After that my work became more prominent, so I began disclosing at conferences, workshops, and I remember an insert Beat It! played on Ronald Louw and many people at home saw that insert. So I assumed that my family knew that I’m HIV positive.]
Lihle Dlamini: You have a very big family and you cannot be worried about everyone’s emotional feelings when they’ve just found out that you are HIV positive. People need to see HIV as a normal issue. And I think it was a bit hard for you because you were afraid of suffering double discrimination because of your sexuality and HIV as well. And I think maybe they were still getting into terms with your sexuality which is also something that shouldn’t bother you because it’s none of their business anyway.
Thami Mthembu: My coming out with my HIV and my dealing with HIV, I always draw strength from past experiences from dealing with the stigma and discrimination of growing up gay. What I realised with growing up gay is that when it came to a point when my family accepted that I’m gay, they were very supportive. It became easier for me to deal with the stigma and discrimination.
Shalom Ncala: Ngemuva kwekhefi, sizokuva kabanzi ngempilo ka-Fanie de Villiers. Hlala nathi. [After the break, we take a look at a few minutes of Fanie de Villiers’ life. Stay with us.]
Shalom Ncala: Mbukeli siphinda siyakwamukela kwi-Siyayinqoba support group, uhlelo lwabo bonke abanegciwane le-HIV nabanezihlobo ezinalo. Iqembu le-Beat It livakashele u-Fanie ekhaya litholisise ngaye. Akhesibone. [Welcome back to the Siyayinqoba support group – the programme for everyone infected and affected with HIV. The Beat It! team visited Fanie at his home to find out more about him. Let’s take a look.]
Stellenbosch, Western Cape – “HIV does not control me, I control it”
Fanie de Villiers: My naam is Fanie de Villiers. Bly in die Kaap, Durbanville omgewing. Ek werk op Stellenbosch Universiteit – werk spesifiek op die MIV veld. Betrokke geraak op die MIV veld omtrent so vyf en ’n half jaar terug. Die rede daarvoor was dat ek al self vir 22 jaar met MIV leef. Ja, ek is ’n persoon wat leef met haemophilie, dis ’n bloed disorder. Op ’n stadium, hier in 1983 rond, het ons ’n tekort gehad ek dink in Suid Afrika, wat hulle ingevoorde bloed produkte moes in kry. Wat gebeur is, my bloed stol nie, ek bloei invendig in my gewrugte en as ek dan bloeding het moet ek myself inspuit met ’n stollings faktor, Faktor VIII. Nou, ja daai tyd het van daai bloed produkte wat ons ingevoor het die MI Virus gehad en ja ek was seker omtrent so ses of sewe jaar oud gewees. Ek het nie op daai stadium geweet nie. My ouers het obviously uitgevind by die dokters. Jy weet ek dink hulle het omtrent daadlik besef dat daar probleme was of fout was. My ouers het dit maar nou vir ’n hele klompie jare, jy weet, alleen gedra en besluit om nie vir my te sê nie. Want ek dink as jy nou regtig waar daaraan gaan dink in 1983 watter inligting was daar nou regtig beskikbaar gewees? Daar waas nie regtig baie nie. Tweedens wat gaan ’n ses/sewe jarige oue kind met daai inligting doen. Ek dink hulle het besef dat hulle sal nou iets moet begin doen, toe Fanie besef: “Maar luister hier, daar’s mos nou girls wat rond hardloop.” Op ouderdom 15 het ek gedink ek gaan morê doed gaan. En op ouderdom 20, 21 het ek net vir myself gesê: “Luister hier ek lewe nog. Wie sê ek gaan morê doed gaan.” En ek het net daar besluit wat, heel eerstens het ek ook vir my ’n vraag, vir myself ’n vraag gevra van: “Wat het ek al, iets positief in my lewe bereik waarop ek kan trots wees?” En kon nie regtig waar aan vrieslik iets dink nie. En dit het nogal ’n verandering in my lewe gemaak. Toe ek nou besluit het okay, toe gaan ek na my ouers toe en sê vir hulle ek blammeer hulle nie meer nie, en probeer iets van jou lewe maak. Daar van daan het dinge net gebou. My vrou ook ontmoet. Ek is getroud al vir die afgelope drie jaar. {Afrikaans} [My name is Fanie de Villiers. I live in Cape Town, in the Durbanville area. I work at Stellenbosch University in the HIV sector specifically. I got involved in the HIV sector about five and a half years ago. The reason is that I’ve been living with HIV for 22 years. I’m a person living with haemophilia, it’s a blood disorder. Around 1983, there was a shortage of blood in South Africa, and they had to import blood supplies. My blood doesn’t clot, so I bleed internally into my joints. And when I bleed, I have to inject myself with a clot factor, factor VIII. So the blood that was imported was infected with HIV. I was probably six or seven at that time. At that stage, I didn’t know. My parents obviously found out from the doctors. I think they immediately realised there was a problem. My parents carried this burden alone for years, deciding not to tell me. If you think about it, back in 1983 there wasn’t much information available. Secondly, what is a seven year old child to do with that information? I think they realised that they should do something when I became attracted to girls. At the age of 15, I thought I was going to die. Then at the age of 20, 21, I told myself that I’m still alive. Who says I will die tomorrow? That’s when I decided, well, firstly I asked myself a question. What have I achieved that I can be proud? And I couldn’t think of anything. And that made a difference in my life. I decided to tell my parents that I don’t blame them anymore, and make something of my life. From then on, things progressed. I met my wife and we’ve been married for the past three years.] I’ve got a motto by which I live by: HIV does not control me, I control it. So ja, it’s not curable, it’s preventable, it’s manageable, so manage it.
Support group
Shalom Ncala: Fanie ek het ’n vraag vir jou. {Afrikaans} [Fanie, I have a question for you] I’m sure most of us don’t even now what haemophilia is. If you could just explain to us what it is and what exactly, what are the symptoms, what do you suffer from?
Fanie de Villiers: Ja, ek dink as jy nou begin kyk na hoe weet jy as jy bloeding het; okay dit raak ongelooflik seer, jou bene begin krom trek, dit begin swell, dit raak gewwonlik ook warm, dit kan ook, jy kan miskien ’n bietjievan ’n koers ontwikkel. Maar ja, dis basies dit. {Afrikaan} [I think if you want to know what happens when I’m bleeding; it becomes very painful, your legs become stiff, it becomes swollen. It usually becomes warm and you can develop a fever. That’s it basically.]
Vuyani Jacobs: Maar nou, wat ek, here maar jong, jy het ’n ander lewe. Ek het gedink my lewe is baie seer, maar joune, maar jy is ’n sterk man. [Listen man, you have a complicated life. I thought my life was hard but yours, you’re a courageous man.] Listen this is what I’ve been trying to say, you had your life all over like that and then now, you work in Stellenbosch University, you work in Stellenbosch University, We all over try to look for white face with HIVwhite people with HIV wecan’t find them, then suddenly you are an Afrikaans speaking white person living with HIV openly, heterosexual. And I find it quite a challenge, now you are on national television. Fanie tell us about this. How does it maak you feel? How does it feel to represent all of that?
Fanie de Villiers: Haai weet jy Vuy (Vuyani), ek het regtig waar ek dink dis een van die redes waarom ek hier sit is die bloete feit omdat ek blank is, omdat ek heteroseksueel is en om ek Afrikaans is. Vir die eenvoudige rede dat ek daar is ’n, ek ervaar groet ‘resistance from our whit community.’ En dit is nie om te sê almal is sou nie, ek sê nie dat almal is so nie, maar ek glo definitief die grooter mederheid is so. Ek het al ondervindings gehad waar ek mense, waar ek in ’n kerk opgetree het en waar, toe ek my status bekend maak, toe ek met die mense begin praat toe sê hulle vir my: “Maar gaan sit eerder ons wil nie verder na jou luister nie.” Jy weet dis sulke ervaarings wat ’n mens net weer laat besef, ‘but you need to do something.’ {Afrikaans} [I think it’s one of the reasons I am here, because of the fact that I’m white, heterosexual and Afrikaans. For the simple reason that I experienced resistance from our white community. And I’m not saying that everyone is like that but I definitely believe the majority are. There have been incidents at church. When I disclosed my status, when I started speaking to the people, they told me to sit down and stop talking. It’s those kind of experiences that make you realise…you need to do something.]
Thami Mthembu: You’re a heteroseksueel Afrikaans seun {Afrikaans} [heterosexual Afrikaans son] and you are open about your HIV status when there are so many within that same community, within those same confines that feel because it’s a bit of a conservative community, it’s very traditionalist. And because of that, people are very scared of that stigma and that isolation being kicked out, so I’m very interested in knowing how did people receive you when you started being open with your status?
Fanie de Villiers: Another thing that you can just add to that is that I did not contract HIV through any sexual manner and I think that’s actually the bad side of it. I think maybe I should have contracted it through a sexual manner just to open Afrikaner boys’ eyes a bit more. But it’s been a struggle, you’ve had your bad times and you do get your stigmatising people, you also do have your loving, caring, supporting white people out there. And those are the people I tend to mix with. So you’ve also got the choice that, are those people going to get you down or are they actually going to pick you up? And they tend to pick me up because this shows me I’ve got work, out there, to do. So, ja that’s what I’m doing.
Vuyani Jacobs: The funny thing is that when I was diagnosed in ’92, I was diagnosed in Stellenbosch and he was an Afrikaner doctor. Do you know what he asked me? Vuyani, have you ever had sex with another man? But that’s not the question. What I’m actually interested in is when did you really start being open about your HIV status?
Fanie de Villiers: Only five and a half years ago, that I actually decided to be open about it.
Shalom Ncala: What brought that about?
Fanie de Villiers: I don’t know actually. I was sitting there one day and I thought to myself God has given me a bucket full of holes but why can’t I use that bucket, throw water in that bucket and where I might walk with that bucket, the grass might grow greener. So I decided to maybe use something that has happened negatively in my life to start helping other people.
Shalom Ncala: Baie dankie Fanie {Afrikaans} [Thank you very much Fanie], ngiyabonga nakuwe Thami, sibonga nakini nonke namhlanje esihlanganene nabo. Sithemba ukuthi niyijabulele le-show futhi niyawuzwa umoya we-Siyayinqoba, sisonke singayinqoba. Kamuva kuleziziqephu sizoveza indlela abezindaba bayiveza ngayo igciwane le-HIV nengculaza. Kuyosisiza kakhulu ukusitshela kwakho ukuthi ucabangani ngaloluhlelo. Siyayazisa imibono nemibuzo yakho, sicela usishayele kulezinombolo ozibonayo lapha. Yibanathi futhi ngesonto elizayo ku-Siyayinqoba support group. Ukufikela es’khathini esizayo, hlala uphilile, hlala unethemba.{IsiZulu} [Thank you Thami and everybody for being with us today. We hoped that you enjoyed the show and are felling the Siyayinqoba spirit – together we can beat it! Later on this series, we will be looking at ways the media portrays HIV/AIDS. It would help us greatly if you could tell us what you think of the show. We value your comments and questions. Join us again next week in the Siyayinqoba Beat It! Support Group. Until next time, stay healthy, stay positive.]
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