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19th November

Standing together on one leg

On November 19th, 1987, while living in Mexico City, I found out I was infected with HIV.

The horizon of mortality that had seemed almost invisible suddenly appeared close enough I could practically touch it.


But, unlike most people who got the same news then I was lucky. I had the good fortune to access medication, and just when the virus had become resistant to one retroviral, I was able to get another one, often still in clinical trial. It was like crossing a raging river and every time I nearly slipped off a rock, another appeared as if by magic.


Looking back at these past thirty-five years, I see that being aware of the finitude of life has not only been a burden. I was forced to live in the moment, because for years I had no alternative. Neither did I have the luxury to postpone plans, and both traits are still with me even though my life expectancy is now close to normal.


I experienced the profound sadness of losing loved ones to Aids, including my brother, and I too became gravely ill but recovered after a long and strenuous convalescence. I very keenly remember the fatigue and nausea that were the price of taking life-saving medication.


Of the many images from the past thirty-five years, one in particular stays with me.

At an art camp for children with HIV that I supported in Thailand I met Pech, a ten-year old boy who just like me at the time had difficulty keeping his balance. So we decided to practice together by standing on one leg. There we stood wobbling, a middle-aged European man and a Thai boy who looked far too young and frail for his age. Each time we were about to keel over we held on to each other and broke out laughing.


The power of support and collaboration has marked these past thirty-five years as much as the many challenges. I’ve held on to the people I love, my husband Felipe in the first place and the many good friends I’m blessed with. I also supported HIV research and set up a foundation that tried to break the stigma surrounding HIV through art.


I know from experience that, beyond my own story, scientists and activists have had to work with many others to make an impact. I think of my dear friend Joep Lange, who fought to get anti-retrovirals to parts of the world where they weren’t readily available.


To be able to count on one another not only make us stronger; for me, it is the reason to live.

In case any reason was needed.

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