[Speech for World AIDS Day March and Celebration, Newcastle. It was held on December 6, not December 1, this year.]
Welcome to our second March and Celebration, and thank you for coming to the Sage Gateshead for World AIDS Day. I’d like to thank our local percussion groups for accompanying us through town and across the bridge, and making such a wonderful noise.
I’m Paul, a member of the Patient Participation Team, the Newcastle HIV patient group.
Today is the twenty-first World AIDS Day; the first was held in 1988, after the United Nations named December first as our day to remember, witness, and celebrate the lives of people with HIV and AIDS. Every year World AIDS Day has a theme; this year it is “Respect and Protect.” Apparently this means we should show respect by treating people living with AIDS fairly, challenging prejudice wherever it occurs; and also that we should respect ourselves and our partners by practicing safe sex. And those don’t sound like bad ideas, at all.
***
I’ve been reading about something psychologists call ‘resilience.’ We all know what resilience is – the ability to bounce back, to keep going when things go badly for you – but the word has lately gotten more attention; this writer spoke of her clients and friends who had been through difficult times, who showed this mysterious but wonderful resilience. I suspect resilience is what makes people into what we call heroes – people who manage to pick themselves up and keep living, even after they are struck by terrible storms and disasters.
I first started taking the idea of ‘heroes’ seriously about twenty-five years ago, in December 1983, when Reid, a boyfriend of mine, died after six months of illness. His many sicknesses were – terrible; back in 1983 they didn’t have many ideas of what to do when the immune system broke down. Reid, who had been stunningly handsome, a tall blond San Francisco bartender with a mustache and dreams of being a writer, had become painfully bloated, with KS lesions and rashes all over his body. He spent a great deal of those last six months comforting me, and comforting his friends: it sounds strange, I suppose, but we were a bunch of guys in their twenties who had no idea how to take care of someone who was dying. So, he took care of us: he told us not to worry, he told us things would be all right, and he told me to stop screwing around and apply for a graduate degree – which has carried me through much of my life. At his memorial a week before Christmas, a shy, plump girl who worked in his office stood up and said, “The day I started work, he asked me if I’d ever had sushi – and when I said no, he said, well, you should try it, and took me out to lunch. He always encouraged me to go further, to do things I was afraid to do. He was my hero.” I was amazed when she said that; but then, over the years, I’ve met a lot more heroes.
In Los Angeles, HIV tests were done at the Los Angeles Gay and Lesbian Community Center, as I discovered when I tested positive in 1987. One of the nurses there was a brash, rather loud guy, with a sort of frowsy beard. You must know this was when some politicians were talking about sending anyone who was HIV-positive in America off to camps in Utah – here, of course, they were talking about sending you to camps on the Isle of Wight – not exactly a favorite vacation spot. I was chatting with this nurse while he updated my file, and I noticed he went down the corridor to a different room to put it away. I asked him why he didn’t just keep the files next to his desk; he turned to me and said, with a strange expression on his face: because back here, they’re right next to the shredder. And if somebody comes to take these files, when they start banging on that front door, I can destroy them in minutes.
I’ve also known heroes who were more elegant than he was. Here in Newcastle we knew a handsome African woman who had an exquisite French accent; she always dressed beautifully, and became friends with the rest of the patient group, inviting us to her wonderful engagement party. Although she always seemed poised, happy, and gentle, I remember her telling a group of young medical students in a calm voice how she became infected with HIV after being gang raped in a Rwandan prison in the early 1990s. She returned to Africa a couple of years ago, to be near her children, to start a business, and to organize HIV clinics in her area….
Another hero was my friend David, a startlingly tall, gaunt professor of music. When I first met him in 2000 he had already had toxoplasmosis three times – that’s that bug that people with damaged immune systems can catch from cats, and it usually kills them; it had damaged his nervous system so badly the doctors said he’d never walk again, but here he was climbing up and down – admittedly slowly – the stairs of his Brighton house, asking me what he should make for lunch. David continued his brilliant career, speaking in his elegant and slightly arrogant Cambridge manner to audiences all over the world, while testing out practically every experimental drug the Brighton doctors could throw at him. He kept it up until last year, when he died sitting in his favorite chair, looking into his garden; I’m told that when they found him he had a smile on his face.
Fortunately we also have a number of local heroes – people who live out their lives in the face of AIDS, and who help those who have AIDS: sometimes they are the same people – especially the patients who do peer counseling in our HIV group; and then there are the social workers, nurses, doctors and consultants at the various clinics and health centres, in all of which we are actually exceptionally lucky here in the Northeast. Just two weeks ago I was surprised yet again by someone I know would be nominated for favorite local hero by many patients – Melinda, a psychologist from Newcastle General. She had organized an evening session where all the HIV patients could come and ask for what they wanted in their medical and social care, and in anything else, to a large group of doctors and health care workers – and she got them all to stay after working hours; sitting there, watching her go so far beyond the call of duty, with such calm kindness and resolve, I thought how amazingly lucky we are.
So, there are big things that people do, and little things: the resilience, the toughness and gentleness, that they show: and the ways that they are heroes, to themselves and to other people. As if those of us who didn’t even realize we were heroes suddenly discover that we are, just while going on with our lives….
Comments