HIV
A Very Lonely Illness
I first heard of HIV/AIDS in 1983, when I was watching a Horizon programme on the BBC called “Plague in the Village”. This spoke of an illness called GRID – this stood for “Gay Men’s Related Immune deficiency” – first identified in San Francisco. This mysterious virus was killing large numbers of all ages, who fell prey to opportunist infections, such as skin cancers, pneumonias and premature ageing. As the disease became more widespread, it gained worldwide attention from the media – who used it to whip up bigotry, intolerance and a lack of understanding, towards the gay community, in particular, but also to other marginalised groups.
The responses from the Anglican and Catholic churches varied from religious zealots, who said it was God’s wrath for people’s decadent lifestyles, to others who saw it as a challenge to embrace those who were becoming ostracised from society. I witnessed some wonderful work from vicars, priests, nuns and lay people.
The Bethany project in Cornwall, opened by Princess Diana, was a respite home for people suffering from AIDS. It was founded by the Redemptress Community of Efford, Plymouth and the Sisters of Mercy in Bodmin. Its ethos was to welcome and no judgment was ever made towards the people in its care. This centre offered a sort of sanctuary for people who had been rejected by their families and friends and often had only a short time to live, as medication was very limited in those days and did not offer a long-term future to sufferers. I trained as a volunteer and “AIDS Buddy” here. Unfortunately Bethany no longer exists, due, partly, to funding no longer being available, but also thanks to the breakthroughs in medicine which now means HIV is now considered a “chronic illness” rather than a terminal one. The latter is true in the Western world generally, but people in the Developing World are not always so fortunate. Incidentally, when we say it is a “chronic illness”, we must not forget that people still have long spells of illness and the side effects of medication can be debilitating.
Whenever we hear the words AIDS or HIV, we tend to think of the terrible suffering of the millions who have been affected by this illness in the Developing World, and the people so often just remain statistics. However, we should not forget that thousands are still affected in this country, too. They tend to be stigmatised and experience a kind of isolation as they do not get the automatic support that, for example, cancer sufferers or people with other terminal illnesses – such as heart disease do (not wishing to demean the suffering of these in any way – my own mother died of cancer and my father had polio from the age of twenty).
A couple of weeks ago I was talking to my friend Sarah. Her sister-in-law Louise is HIV – positive and nearly died in the late 1990s after becoming mysteriously ill; it took countless tests for doctors to establish the cause of her illness. Luckily, medication had advanced by this stage. Telling her husband-to-be about her condition was a huge hurdle for Louise to overcome. After all these years, some of Louise’s family still do not know about her condition. When people enquired about why she was so thin back then, the family agreed to tell them that she had been suffering from anorexia.
Sarah has never told her children about their Aunt’s condition – she and her husband are still concerned about the possible bullying that could ensue. Sarah’s husband works in a very traditional, male-dominated environment where some of his mates will still tell jokes about AIDS. He finds this very upsetting, going quiet and making excuses to leave. Sarah told me that she thought that, even after all these years, and the advances in medication (as well as education), she still felt it is a very lonely illness – not just for Louise, but for the whole family. Incidentally, Louis now has two children (both HIV-Negative)and is happily married.
Kevin Kelland
Bethany
Many friends were made and, yes, still stay,
From Bethany’s conception day.
Though time moves on and faces change,
The challenge to us all remains;
To accept love as the precious key,
To end intolerance and bigotry.
Tony Kelland (my father)
This is one of a number of poems written by my father which my brother, Martin, found after his death.
The poem is signed “A.R. Kelland” and underneath, in brackets, are the words: “written for Kevin” – I was greatly moved to find this poem.
