Monday, 7 November 2011

World AIDS Day. Some time for sober reflection

On the last day of December 1989 my brother Gil, summoned an impromptu family meeting around the kitchen table. "A new decade is about to begin", he announced, "I’d like each one of us to name one thing they wish to see happen in the new decade."

We each took turns to say what we wished for. Slowly, a wish-list emerged.

I wanted to see Argentina win the World Cup. My sister hoped the film My Left Foot, would win an Academy Award. My mother stated that she desperately wished for us to finally get a telephone line. When it came to his turn, Gil took his time. His features contorted in concentration, he finally said solemnly: "I hope to see Ron Arad return to his family." We all fell silent. Arad, a young Israeli pilot, had been captured by a Shi'ite militia group in Lebanon three years previously and there had been no news of him.

It was a very moving moment.

Ten years later, I sat in my student room at York University and recalled our wish-list for that decade. I smiled thinking of Daniel Day-Lewis and the slew of awards he won for his part in the film My Left Foot. My wish never came true; Germany defeated Argentina in the 1990 World Cup. I reflected with sorrow that Gil’s wish also did not materialise. Ron Arad was still missing in action.

That year, I made my own new-decade wish, in solitude. More than anything I wanted Gil to live. That was my wish.

During that decade my family was visited by a nightmare waiting to happen. We had no idea when it would happen; we hoped it wouldn’t ever happen; but we knew that it would. It was the decade in which Gil was diagnosed HIV positive. This bomb shell arrived unannounced and uninvited in our home. It ushered in a decade of uncertainty and dread; of cautious optimism tempered by terrible statistics. My wish for the new decade, which also marked a new millennium, was for science to find a cure for AIDS. I hoped with all my might that we'd be spared what we knew was coming our way.

My wish was not granted.

A few days into January 2000, Gil was rushed to hospital with a collapsed lung. We all knew what this meant. Our nightmare had arrived. By the third week of the new decade, surrounded by his family, Gil took his last breath, aged 34.

I will always associate the new century with our loss. We faced it with dignity although our grief was immense.

We all have our private wish-lists; sometimes they change with the vicissitude of time and change of fortunes. But since the start of this century mine has remained unchanged. I still wish to see the day when AIDS is eradicated by a simple vaccine. Like Polio. I hope to see the day when people, young and old, male and female, can live long, fulfilled lives without the fear of infection by the Human Immunodeficiency Virus, the virus that leads to AIDS.

But until then, there is still much work to be done.

The 1st of December, is international World AIDS Day. It is a day of mourning for those who have been lost to this terrible scourge. Men and women of all ages, nationalities, races, creeds and sexualities. They were our brothers, friends, colleagues and neighbours. Each of them was loved and each of them is remembered. World AIDS Day unites all of us in our grief and sorrow.

But this World AIDS Day is also a time for some sober stock taking.

There is now a generation of young people who have grown up in the shadow of HIV. Many of them are under the impression, or illusion, that current treatments have secured a safe future for those infected by HIV. It is, they think, like other chronic but treatable conditions; like diabetes or asthma.

Where panic once grew, complacency has set in.

Now for the facts. It is true that people living with HIV are living longer and better lives. Antiretroviral therapies are effective in preventing some of the neurological hazards associated with infection. But this observation, while factually true, is grossly misleading. There is still a host of associated neurocognitive disorders which affect those carrying the virus largely due to their compromised immune system. Most worrying for those who are seropositive is the current prevalence of
HIV-Associated Dementia – HAD. And the statistics are staggering.

Writing in the Lancet, Dr Lynn Pulliam warns
that up to 30% of patients infected with HIV will develop a debilitating dementia. Dr Lachlan Gray from the Burnet Institute, thinks the problem is a lot more pressing. According to him, HIV is now the most common cause of dementia in people under the age of 40.

Part of the problem, ironically, is that many people with HIV are leading normal lives, looking happy and giving the impression of ‘business as usual’. Shortly before his death, British AIDS activist and co-founder of Positively Healthy UK, Cass Mann, charged that the greatest disservice AIDS charities pay to men today is to present images of them as "healthy, buffed, gym bunnies with glossy beautiful bodies, having great lives, climbing mountains, partying in Sydney and looking beautiful."

"If they showed people in hospices, dying of dementia or people with lipodystrophy or facial muscle wasting" he said, "that would stop them in their tracks. Having HIV doesn’t make you look like Brad Pitt but it can make you look like an AIDS dementia patient and you don’t want to look like that. AIDS is not a pretty glossy calendar."

We have come a long way from the early eighties, when AIDS was in its infancy. Patients are now living longer, better lives. But HIV is still a terrible affliction which remains incurable. There is no room for complacency. We must act; we must educate this new generation so that they know how to protect themselves. We must do this without scaring or scarring them. We must infuse them with knowledge and confidence so that they feel good about themselves, about sex, about their bodies and their sexuality. At the same time, must explain to them the inherent dangers they face; they must know the boundaries, the risks and the precautions. So that they live long, healthy and fulfilled lives.

Gil is now gone. His music, his songs, his funny stories; they are now consigned to the distant past. Some continue to live within those who knew him and loved him. Some will never be recovered. But he leaves a legacy; that life is a celebration; that there is room for compassion; that AIDS does not just happen to other people.

1 comment:

Unknown said...

אורי, קודם קראתי את מה שכתבת על רינת ועכשיו על גיל. הכרתי את שניהם אבל לא אותך. את גיל החשבתי לחבר למרות שרינת היתה בגילי, הקשר איתו נעשה קרוב כשהגעתי לגור בלוס אנגלס. אני מתגעגעת אליו. הייתי בשוק כששמעתי על רינת. לא היינו בקשר ולא ידעתי על מחלתה. אני מאוד משתתפת בצערך. איבדת הרבה . חיבוק גדול מלוס אנגלס בה אני עדיין גרה. אני אדליק נר לזכר שניהם. גיל מאוד אהב את רינת, ולפחות מותה נחסך ממנו. חני