Zackie Achmat: Alive and well
Cape Town - Aids and depression are topics many people prefer to remain silent about, especially if the two go hand in hand. In the run-up to World Aids Day, Willemien Brümmer spoke to Zackie Achmat about his own depression and the interaction between the virus and his soul.
Losing control of his mind his biggest fear
'As long as I hold onto my dignity'
His words were bats that flew into each other in the dark. His sentences ended in mid-air. It was as if he looked at you through a dense layer of fog.
It was during these times that I wondered what was happening to him. Especially when he cancelled press conferences and public appearances at the eleventh hour.
Yes, I'm referring to Zackie Achmat: the fiery Aids and anti-apartheid activist who was honoured by Time magazine as an international hero.
The 42-year-old troublemaker who - together with his brainchild, the Treatment Action Campaign (Tac) - almost clinched the Nobel peace prize. The man who has never succumbed to ministers or heads of state with regards to his beliefs.
Very few people know that he has had serious depression at least since he turned 12. And that he was "marked" by at least three of the heaviest taboos in our society: he's gay, HIV positive and, to crown it all, a "little off".
His eyes glint dangerously behind the giant bowl of soup and glass of orange juice he tries to down simultaneously in his favourite joint in Muizenberg.
Between gulps he talks about his past and the complex interaction between the chemicals in his brain, his genes and the virus with which he was diagnosed in 1990.
The HI virus already penetrates the brain during cero-conversion. In other words, shortly after infection, when antibodies change from negative to positive. Every patient's reaction to this penetration is different.
Chances are good this can lead to depression and cognitive reduction and, during the final stages, even to dementia - a condition that usually only afflicts the elderly.
He talks about sex at age 10 and only gets a slap
Achmat's own depression started long before people even knew about the virus. It was during the time he grew up as one of six children in a one-bedroom Salt River flat, which sometimes hosted up to 20 people.
He was very familiar with domestic violence and his mother frequented psychiatric institutions, where she was treated for depression. His aunt worked to support the entire family.
"I became sexually active for the first time at 10. When I told my parents, they just slapped me and said: 'You don't talk about such things!'" An ironic smile plays around the corners of his mouth.
At age 15 he was sentenced to solitary confinement on account of his political activities, and during the following three years he was locked up several times more.
"I was particularly depressed following periods of incarceration. But your political arguments could be discredited if you acknowledge your depression.
"In the same way, the macho-male tradition does not allow men to show their own vulnerability."
And then he was diagnosed with HIV and told he only had six months to live. He stayed in bed and waited for death to come for a full six months. He watched five videos a day and read everything on which he could lay his hands.
He eventually pulled through with the help of the anti-depressant Effexor and was healthier than ever before.
"If I did not have a friend like Jack Lewis (film maker and TAC member with whom he had a long relationship), I would probably not have made it. My work at the TAC and the many people in this organisation who supported me also helped."
As the viral load became higher and the number of white-blood cells fewer in his bloodstream, the cognitive reduction became more visible.
It was partially his own choice, as he refused to take antiretrovirals in protest against the government's failure to make the drugs available in the public sector.
"Before I started taking antiretrovirals in September last year, I could barely speak. Before, I used to read about 300 pages a day, but during the three years before I started taking the pills, I could only manage to read my e-mails."
Finally: a yellow pill stunts the slow death
He stops eating, and looks out over the ocean. His eyes seem to become one with the water. "If there's one thing I fear, it's losing control over my brain. I don't mind wetting my pants. But not being able to read or argue or make my own decisions?
"Most people want to retain some form of dignity."
He takes an unusually long time to reflect and speaks slower than usual. "I have dedicated the last ten years to getting ready to die.
"At first my refusal to use anti-retrovirals was not meant to protest against the government's inaction - it was against the pharmaceutical industry. But when it became a fight with the government, it felt as if I was dying."
After the 2002 international Aids conference in Barcelona, his physical deterioration sped up. There were continuous infections such as diarrhoea, chronic lung infection, herpes and thrush. "It was a question of time before I would contract TB or meningitis."
But his life changed in November last year, shortly before cabinet gave the green light for the world's largest anti-retroviral treatment programme to kick off. He took his first "sunset yellow" pill - a cocktail of three antiretroviral agents.
Before long the infections disappeared and he could resume reading 800 pages a week. "I almost developed megalomania. I have not had one real infection this year." His hand gestures become larger and more demonstrative.
Achmat's depression did not have a fairytale ending. It changed, but it is still not something of the past.
"Nowadays, the main cause of my continuous depression is survivor's guilt. A guilty feeling because I'm alive, while so many others still do not have access to drugs."
Another drawn-out silence.
"Most of my ex-boyfriends are dead. I am lucky, because I have many people who support me, but it's the same thing Aids counsellors and care-givers have to wrestle with daily: some have to do 60 Aids tests a day and tell 40 people they are HIV positive."
He hesitates. "While everyone else was dying around me, I suddenly had to plan my future, my life. It's quite stressful."
Now: another 20 to 40 years
And then came the physical side effects of the antiretrovirals. Especially peripheral neuropathy - a condition that takes place when the nerve endings are impaired; burning pains are felt in the feet and legs.
It was so bad for Achmat, that by the fifth month of antiretroviral treatment he could no longer walk.
"I was totally melancholic and dysfunctional at the beginning of the year. I fought with my nearest and dearest, and I did not want to accept that I was experiencing side-effects."
The only way out was to see a psychiatrist who changed his anti-depressants and prescribed another combination of antiretrovirals with fewer side-effects.
He smiles broadly for the first time during the interview. It seems as if his smile could swallow the entire café.
"I have been fine since June. In September I went to London, Germany, Addis Ababa and back to London, and I managed three appointments a day. I returned from Durban on Tuesday."
He looks me straight in the eye. "I think I especially made peace with the fact that I could be around for another 20 to 40 years."