A lot of people, I find, have a close friend who does not make sense. Someone who just doesn’t ‘fit’ with other aspects of their life, and no one from outside can quite understand why they are friends at all.

Such friendships can be especially meaningful and sometimes surprising. Often, these are started at school, where the personalities of those involved were unformed and their subsequent life trajectories very different.

My Young Friend

My friend of this type was a young man with not long to live. I met him through work when I was close to 50 and he was just under 30. He was German, I was American, both living in London, although we first met at a conference in Belgium.

More significantly, he was a gay man, and I was a married woman with two children. He had grown up poor in a mining town in Germany and had taken up nursing when he left school at 16 because the only real alternative was becoming a miner. I came from a professional family in New York and had three degrees.

And he had been living with AIDS for five years, whereas I knew nothing about the disease. He was, indeed, highly active in the HIV/AIDS community, seen as something of a leader amongst them. I liked to keep to myself and never led anybody anywhere.

What Did We See in Each Other?

I saw a very bright, sensitive but troubled man, who liked to reflect on deeper issues. I guess he saw some of the same qualities in me, although I never asked him. We certainly had similar temperaments, mixing reflectiveness with a sense of humour.

He also liked to challenge himself and those around him – and I found that a very inspiring (and somehow intimate) quality.

I also learned that his mother had died when he was 18 months old, and he claimed he had been looking for her (in some unspecified way) all his life. He was friends with a number of older women, of whom I was one. None of us knew each other.

Doing Things Together

We used to meet fairly often, mostly for lunch, although he did come to my house on several occasions.

At one lunch, we first planned what was to become a joint book based on interviews with people with AIDS and HIV, taking place at an international conference he was organising.

As is the case with Covid-19 today, the world was awash with statistics regarding the numbers diagnosed, but I was unaware of many personal stories. I knew that these can have a bigger impact on people than statistics. This strengthened our friendship and proved an important milestone for me in creating books based around interviews.

A Special Lunch

And there was a particularly poignant lunch. Towards the end of his life, he was in and out of hospital with various ailments and I would visit him there. On one occasion, he said, I thought jokingly, “Let’s have lunch next week.” I said sure, with a smile. But he meant it. And told me so.

The following week, I turned up at the hospital, finding him very frail and attached to a drip, but in his street clothes. It did not seem remotely feasible to take him outside, but he said he had cleared the venture with the staff.

We chatted for a bit and then, being a trained nurse, he unplugged himself from the drip and said, grinning, “Let’s go.”

It was a beautiful October day, sunny and crisp. There was a good restaurant nearby, and we headed toward it very slowly.

He was incredibly exuberant about the beauty of the day, conveying to me that feeling for ordinary life that can only come to someone long confined to a hospital bed. Some people stared – he was covered in Kaposi’s Sarcoma lesions – but he carried on with dignity.

We ordered lunch and talked about all sorts of things of no great importance. I remember him exclaiming at the presentation of the food – and eating much of it, although his hunger was necessarily limited. I simply marvelled that we were there at all.

And when we had finished, we walked slowly, and somewhat sadly, back to the hospital, where he climbed onto his bed and re-attached his drip.

His Death

He died about two months later. I sat with him for a long time on the day he died, although I went home and was replaced by another female friend by the time he died.

A few months later, yet another older female friend and I scattered his ashes in the sea outside of Brighton, as had been his wish. We watched the carnations she had bought float slowly away, went for a brief tea and headed home full of unspoken thoughts.

I will never forget either day.

Death. It is all around us these days. Indeed, you can’t get away from it.

Turn on the television and you learn how many people have died from Covid-19 in your country. In the US, it is now nearly 250,000; in the UK, it is over 50,000 – and so forth. And we are told that we should expect many more deaths as winter continues.

Taking in the Numbers

Do these numbers have any meaning for us? I find it very hard to take them in. Does 250,000 mean so much more than 240,000? They are both large, and they are both overwhelming. And they are appalling.

It is so much easier to understand when it is simply one person. Then it comes home in a whoosh.

The Loss of One Psychoanalyst

My cousin went to a wonderful psychoanalyst for a period of years. Because of our mutual schedules, I often met my cousin there at the end of her session.

I never used this psychoanalyst myself, but she helped my cousin enormously. I could see from just talking to her that she was very warm and full of life. And she seemed very wise. If I ever needed help, I would go to her.

From small conversations, we began to know and like each other.

Recently, I was trying to contact her on behalf of a friend. I tried her mobile number and left a message, but there was no response. Odd, I thought. I then emailed her, as I knew she would reply when she was free. But again, no response. Even odder. It wasn’t like her at all.

And then I had the idea to look on the net. Perhaps I had a premonition of what I would find. There it was – her name and the word ‘death’. And some very warm commentaries from her colleagues in the psychoanalytic world.

She had died in May after a short period with Covid-19. She was 63.

What a terrible, terrible shock. And it meant so much more than the numbers.

One Person’s Life

It is just impossible to imagine the lives and loves of hundreds of thousands of people. But you quickly can respond to the life of one person. In her case, I didn’t know her family situation, but I did know what a good psychoanalyst she was.

What a terrible loss for all her current patients, who relied on her for their well-being. Not to mention those who would have sought her help in the future, like my friend.

I learned from an obituary that she was a wonderful teacher, full of insight and inspiration. A loss, too, for those who would have learned from her.

And she, too, undoubtedly also had family and friends who would be devastated.

The circles of people affected by one person’s death are clear to see – the parents, the siblings, the spouse and, of course, the children. Not to mention both casual and close friends. All feel the real pain of loss.

When you add up all of these, the impact of this pandemic is great indeed.

Sudden Death

I was very affected by this death. I wanted this woman to be still in this world, still dispensing her wisdom to others.

And I began to realise there were two other aspects that affected me – and perhaps others in the same situation.

First, a sudden and completely unexpected death seems very unfair. No time for friends and family to prepare themselves. No time for the woman herself to put her things in order. Just wiped out at a stroke.

And second, because I was in no way in her immediate orbit, it was a greater shock learning of her death some time after it happened. My immediate thought was, “How can she be dead when I just sent her an email?”

Yes, I know that is illogical, but thoughts about death often are.

A Different Pandemic

The same thing – in terms of the overwhelming statistics – happened in the AIDS pandemic 30 years ago. Rather by accident, I became close to one AIDS activist and together we wrote a book, based on interviews with a number of young people living with AIDS, called Wise Before their Time.

I felt exactly the same then. The numbers were too big to take in. In the Preface, I noted that each day, some eight to ten thousand men, women, and children worldwide became infected with HIV (the condition that led to AIDS). A cumulative total of 40 million were expected within the decade.

Yet by presenting the experiences of 20 people interviewed for the book, the loss became human again.

People lived longer with AIDS, and they talked of the many difficulties of telling their friends and parents, seeing their friends die and trying to cope with the enormous stigma of their situation. It is “powerful stuff” as one reviewer noted.

End Note

By the time we are in our 60s, we have probably seen a number of deaths. Very likely, among those fall our parents, although not necessarily as lifespans grow.

But there will be car accidents, cancer, and many other situations which are likely to have taken our friends and family members.

Each one is significant. Our response confirms our humanity. But death in large numbers remains difficult to take in.

This was first published by www.sixtyandme.com. (See https://sixtyandme.com/impact-of-unexpected-death/)

This article was first written before the coronavirus struck the world. It has even more cogency now.

Death and dying do not make for a jolly subject of any conversation, but it is part of life. And none of us is getting any younger. Is death or dying something you think about very much?

You may prefer to think it will never happen and leave it at that. But if you are one of those people who like to prepare themselves for what is coming down the line, you might want to give it a passing glance from time to time.

As We Grow Older

I am not obsessed with death, but it does cross my mind on occasion – and probably increasingly. Before I was 60, I rarely gave it much thought at all. The possibility of dying seemed almost as remote as it did when I was a child, which is to say it was over a very distant horizon.

Now that I am in the second half of my 70s, I have to face the fact that my remaining years are increasingly limited. The statistics are not brilliant as you grow older, for obvious reasons. And, with each quickly passing year, they only get worse.

None of us knows when we’ll die, of course, but it is time to begin to recognise the situation.

Yes, some of us live well into our 90s – and centenarians are becoming much more common. I even have good health and good genes, my parents having lived to age 90 and 91 respectively.

Yet, these are details. The truth is, we will grow older and frailer and will have to face the end, sooner or later. In the words of a young woman living with AIDS, quoted in my book on the subject some years ago, “You haven’t got forever any more.”

Dying

Is it the moment of dying that worries you?

Although some people die in great distress, the much greater likelihood is that you will do so fairly peacefully. The profession of palliative care is getting increasingly clever at keeping people pain free. In the coming years, it can only get better.

I haven’t reached the stage of thinking where I would want to be – or, indeed, where I am likely to be.

Nor do I often think about my own funeral. Occasionally, when I hear a particularly beautiful piece of music, I will say casually, “You can play that at my funeral.” But in fact, it would be better played at a funeral I was attending during my lifetime as I would actually hear it.

Being Gone

Or is it the fact of no longer living that worries you? Of no longer being there to enjoy the many pleasures of life? Or no longer being there for your family and friends, some of whom may rely on you?

These are undoubtedly ‘heavy’ issues, which you may want to prepare for.

In fact, we do make many preparations without thinking of them as such. The urge to ‘downsize’ stems partly from the wish to make our passing easier for those who must administer your things. Perhaps you have done this for someone else and it came home to you how very complex such matters are.

Visits to long-lost relations – or friends you don’t see very often – may also be stimulated by the thought of doing so before it is ‘too late’. Such thoughts may remain un-articulated but are nonetheless real for everyone concerned.

Death of Loved Ones

If anything, I think less about my own death and more about the possible death of my husband, as statistically, this is the more likely first event.

Having been married almost all our adult lives, it is scary to think about being alone. Those of you who are already widowed will doubtless know what I mean.

Writing About Death

Although I really am not obsessed with death, I have written two books dealing with two different aspects of it.

One was about young people with HIV and AIDS, all of whom were dying because there had been no cure back then. It is not a morbid book at all, but it is an honest one about people facing an early death.

I was impressed with their resilience and called it Wise Before Their Time, because that is what I felt they were.

The second is about people who work with the dying. I had worked as a volunteer in a hospice and found it fascinating that so many people could go to work each day to help others die. I interviewed nurses, doctors, chaplains of various faiths, administrators, and even a very reflective chef.

I called it Life in a Hospice, because this is what it was about – the living before the dying.

Preparation

I recently watched a TV interview with Sir Ian McKellen, who always struck me as a very thoughtful man. I also have a soft spot for him as he wrote a terrific Foreword for my book about people with AIDS.

Himself in his 80s, he said he did think about death quite often and had even planned his own funeral. (And noted that he thought it sounded like such a good occasion, he wondered if he could plan an early dress rehearsal so he could attend).

He surmised that old people thought about death a lot, because it was a form of preparation. When the time actually came, it probably helped them to feel that they are ready.

(This was initially published by SixtyandMe. See https://sixtyandme.com/thinking-about-dying-doesnt-have-to-be-morbid/)

Nearly thirty years ago, when HIV/AIDS was rampant, I became close friends with a young man diagnosed with the disease. He was very active in the AIDS world and was organising an international conference of people with HIV and AIDS, to be held in London.

These were the dark days when most people with HIV/AIDS were young (mostly gay men and drug dependent, but there were others, too) – and to be diagnosed was to be given a death sentence.

My friend told me that he had asked everyone attending the conference to send in ‘their story’ with their application.

I was immediately struck by the potentially fascinating nature of such stories and he agreed that I could compile them into a book, a task with which he would like to help. I subsequently arranged for two interviewers to come to the conference (held over five days) to talk with participants about their lives. We managed to interview over 20 attendees from all over the world

Wise Before their Time was the result of these two sorts of contributions, published initially by HarperCollins in 1992 and subsequently re-published by Glenmore Press in 2017 with a new introduction.

But why the title? Despite being young, the people we interviewed seemed wise beyond their years. Something happened in the course of their learning how to cope with the many physical manifestations of their disease, along with the huge stigma attached to it by everyone (including many doctors).

Much like very old people, they realised that they did not have long to live, but needed to live wisely and well. They readily separated the important from the unimportant aspects of life and became deep, impressive men and women.

I was very pleased when Sir Ian McKellen agreed to write a Foreword, in which he stated that these true stories were “as powerful as any great classic of fiction”.

The title emerged from my thinking about their situation and their qualities. It may not convey much to the potential readership (which makes it a poor title). but it was my way of honouring the wonderful people who contributed to the book. I was never able to follow them up (this was long before the days of email and mobile telephones), but wherever I tried to do so, they had died within a year or two.

My friend died six months before the book was published. He, too, was wise before his time.

This book is only of historical interest, as it does not describe the experiences of people with AIDS now. But it is immensely moving – indeed uplifting – and is a testament to the resilience of the human spirit.

Why not buy now and see for yourself?

I was asked to write a post for a site specialising in history, called Myths, Legends, Books & Coffee Pots.  The following was my response:

Myths?  Definitely not.  Legends? No. Books?  Yes, for certain. And a very powerful one at that.

I am not a historian or a even a writer of historical fiction. I write books that are not easily squeezed into any genre. They are sometimes called ‘narrative non-fiction’, but I don’t much like the term. They are based on interviews with people talking about their lives and are best described as like a TV documentary, but in words.

So what does this have to do with history? Well, if you live long enough, what you lived through when you were younger becomes ‘contemporary history’. And nearly thirty years ago, in the early 1990s, there was a very real crisis in the lives of millions of people across the world – the rise and spread of HIV/AIDS.

Now, so many years later, this is seen to be almost like any other chronic disease, with those diagnosed being able to expect a normal life span. Back then, it was a different story. Seen as a kind of twentieth century plague, it had everyone terrified. For the individual afflicted, it caused a lot of pain and other physical and mental problems, followed by almost certain death. There was no cure.

Because of the stigma attached to the disease, people avoided talking about it. It was thought to be caught, primarily, from the transmission of bodily fluids via blood or sperm, but many lived in fear of accidental contagion.

And the data were frightening: millions died over a short number of years – not just in faraway places, but nearby. It took an enormous toll of mostly young people. Even writing about it now makes me tremble slightly.

Wise Before their Time is a book about a small number of people living with AIDS, who happened to be attending an international conference in London in 1991. It is based on interviews with 21 people – and written material submitted by 23 others –  spanning every continent.  It allows them to tell their stories in their own words. I felt the statistics being spouted at the time were so overwhelming, there was a need to see the human side.

These men and women talk about how they first learned of their diagnosis, the difficulties of telling their partners, friends and family and the problems of keeping in work and active. Indeed, they explore the many challenges of living with a stigmatising condition, often with numerous friends in the same situation and knowing that they did not have long to live. For the most part, perhaps in part because many were active in their local communities, they were immensely dignified and strong, hence the title of the book.

Sir Ian McKellen kindly offered to write a Foreword, in which he wrote that these stories were “as powerful as any great classic of fiction”.  But the power rests, in part, from the fact that it is not fiction. It is all true. Readers will come away with the real understanding of what it was like to live through this terrible time in living memory.

How did I come to write the book?  My day-to-day job was a researcher and writer on health issues – and this brought me in touch with many problems of the day. In 1989, I met Dietmar Bolle, a young (early thirties) gay German man, who had been living with AIDS for five years and was a busy AIDS activist. We had little in common (I was in my early fifties, happily married and not an activist at all), but somehow in the way that can sometimes happen, we became close friends.

At that time, I had no particular interest in AIDS – nor, indeed, in issues surrounding dying, although I subsequently wrote another book about people providing end-of-life care (Life in a Hospice).  But when I learned that Dietmar was the principal organiser of a conference – and had asked those attending to send in their ‘stories’ with their application, I was hooked.

I immediately saw that this could be lead to a load of fascinating stories, especially if supplemented by personal interviews. Here were  people living with the most feared disease of the day, all coming together to talk and learn. It would be a challenge to undertake and would prove a valuable way to humanise this dreadful condition.

Wise Before their Time is the result. Published by HarperCollins in 1992 (Dietmar did not live to see it),  it sold well at the time, but eventually fell by the wayside. I took back the rights from the publisher and re-launched it with a new cover and short introduction in 2017, primarily for its historical interest.

Here is one story, to give the flavour. As with the rest of the book, it is written in the present tense, but one has to assume that Danny died within a short time after the interview – along with others I tried to trace some years later.

DANNY

Danny is thirty-two and from Northern Ireland. He is currently unemployed, having just spent four years at college studying theology. He had hoped to be ordained as an Anglican priest, but his ordination was deferred on grounds of his homosexuality. He is now seeking to have this decision overturned. He lives on his own.

Danny’s diagnosis is very recent:

I was diagnosed HIV on the 13th December 1990. The reason I went was I’d got a swollen gland under my armpit. I discovered that at Easter of last year and it was still there in December. When they took the test, it was a week’s wait. Those seven days were like an eternity.

I remember it exactly, probably always will. The doctor said to me, ‘As you know, Danny, we took some blood.’ I said, ‘Yes, I was here when you took it.’ And he said, ‘Well, we had the results back and I’m very sorry to tell you that it’s highly probable that you are positive.’ It was as if somebody kicked me in the balls. Then I thought, hang on, what do you mean ‘highly probable’?

This was my body we were talking about. It took me three times saying I wanted to know what’s going on before he said, ‘Okay, Danny, the results of the first test are positive.’ Although I’d more or less convinced myself that it was possible I was positive, it didn’t really prepare me for hearing those words. I’d lived in hope that the result of the test would be negative.

I went with a friend, a close woman friend, for the results. I went out and got her and the poor woman, she knew right away what had been said. We sat and talked to the doctor. Or she talked and I just gazed into oblivion.

I went back to her place that night, to her and her partner. I intended to get totally drunk, but no matter how many drinks I downed, I couldn’t quite make that stage. Who? Why? What’s going to happen? Who can I tell? Why me? And even, ‘Hang on a second, they got my test mixed up with somebody else. That’s what it is, some other poor sod has been told he’s negative and in fact he’s positive.’ And I thought, no, get a grip on yourself, that doesn’t happen.

My health has been fine. I’m healthier now than I have been for the last two years. The chances are that I’d been living with HIV for at least two years, as my weight had dropped then, over three stone in four months. I did go for a test at that time – and that proved negative. They said to come back in three months, because I had put myself at risk, but I was so relieved I didn’t bother going back.

One difficult aspect of learning about HIV is telling other people – friends, partners, parents and so forth:

The first people I told was the faculty at my college, because they were people I trusted. They’d seen me through the ordination being put off and stood by me. We disagreed very strongly, theologically, with God’s view of sexuality, but that didn’t matter. When I needed their support they were there. They were fantastic. I couldn’t have wished for more from anyone, both faculty and fellow students.

When I was first diagnosed, I was in a relationship with another bloke. We’d been together for a number of months. And although we practised safe sex, the first thought that came into my head was have I put him at risk? He wasn’t around for a few weeks. When I eventually told him, all he did was get up and just hold me for about twenty minutes, which was fantastic.

We’re no longer together. I don’t think it was anything to do with the HIV, but it might have been. The important thing for me was his immediate reaction – wanting to support and comfort and hold me. He didn’t get himself tested. He saw the health advisor and as a result decided that there was no call for him to be tested.

I haven’t told my mother and brothers. The three of them know that I’m gay – they’ve known since I was nineteen. That caused enough problems in itself. I went home this Easter, not really sure whether I was going to tell or not. I was only there for a week. And when it came to the Wednesday and I hadn’t told them, I thought no – thinking about my mother particularly – to dump this on her now and just leave would be an awful thing to do.

It’s a difficult thing. What I don’t want to happen is that in three years time I become ill with something like pneumonia and end up in hospital. I don’t want my mother to find out that way. That would be horrendous for her. But if I tell her now and then go on for the next ten years being healthy, will she spend those years in fear and trepidation?

In two or three years time, I’ll be ready. I’ll know when it’s time for me to tell. I want to tell her. It will send her up the wall, it will be as if things are caving in on her. After that, there would be, I hope, a tremendous amount of support.

There was a situation about three years ago where my brother wouldn’t let me see his kids. That tore me apart. I’d arranged to meet him at his home, to be there for the evening. I met him in the middle of the road and he said his wife didn’t want me near the kids, she’s afraid of AIDS. He said, ‘You’re a queer, queers get AIDS, don’t they.’ I left him, went into town and just got totally wrecked. I was in tears.

One effect of telling people is that relationships change:

Some of my close friends suddenly wanted to wrap me up in cotton wool. It was as if I became some china doll that had to be treated gently.

I was known at college as being one of the more controversial figures. I revelled in that. I’d be forever challenging people about issues to do with unemployment or race or sexuality. I loved getting into heated arguments at times. Two people in particular, I noticed that their whole tone towards me changed, they wanted to ‘care for’ me. I didn’t need to be cared for in that way. I said, ‘Listen, I’m still Danny, I’m not “Danny-HIV-positive”, I’m Danny.’

On one level, it was good to know their desire to shield me from other people’s ignorance and fear. On another level, I’m a fighter, born into the civil rights movement in Ireland and brought up with protest almost running in my veins. It was the possibility that that part of me could have been lost. They became like the parent and I became the child. But I was able to say, ‘Hang on a minute, I’m still me.‘ I still enjoy stirring things, I’ve spent my life breaking out of closets and I’m not about to be shut into another closet called HIV.

I’m now involved in a number of training groups. And I’ll say ‘Listen, if I as a person with HIV get up your nose, then bloody well tell me.’ If you begin treating someone as if they’re breakable, then you’re in danger of robbing them of some of their humanity.

There is always a fear of prejudice:

I get paranoid on occasion, I think I overhear or see the odd kind of look, as if people are talking about me, people who I’m not close to particularly. I refuse to keep my HIV status under lock and key. I’m not broadcasting it from the rooftop, but one of the things about HIV and AIDS is the stigma and the loneliness and isolation.

I used to run a playschool. I really love kids. Often, the mums would be a bit harassed and they’d say, ‘Here Danny, take this little so-and-so off me hands.’ And I’d take the child and look after them, while mum went for a walk. Which I loved. Sometimes, when the kids were coming through, before they’d get from A to B they would have to crawl all over Uncle Danny. You’d see me crawling under the tables chasing the kids.

One day, just after my diagnosis, I was doing that with one little kid and the thought hit me ­­– how would his parents react if they knew I was HIV-positive? And I froze, it was a horrendous thought. Then I thought, no, I’m not going to let this child suffer. He’s used to me chasing him around, he looks forward to it and I enjoy it as well. As for the parents, I don’t know how they’d have reacted, because they didn’t know.

Awhile later, I had an incident with a married couple who I’m very close to. I told the husband I’d been diagnosed HIV-positive. The next day, his wife came with her child around the corner and she said ‘Look who’s here, Jim’ as she did every morning. And Jim came tearing round, ‘Danny, Danny, hug’, arms in the air. There was nothing out of the ordinary. Just this woman being the same with me as she’d always been. I walked away feeling twelve foot tall.

It is most helpful to meet others in the same situation:

I can come across as being very outgoing, easy, laid back. And I am, partly. But there have been times when it’s almost as if the whole surroundings just freeze. And I’m just left there, feeling like I’m suspended on the end of some rope somewhere.

Within the week of being diagnosed, I went into the AIDS centre in my area and saw one of the workers. I told her and she didn’t say a word, she got up and came over and held me. That was exactly what I needed. Then I found I was going in there almost every day of the week, just to sit down and have a coffee. And let people in the street walk past – they could be out there, I was in here and I was safe.

I asked if I could speak with someone else with HIV. The feeling of relief when I saw this person who had been living with it for at least five years and he was healthy! That was so good, to talk to him. We were in the same boat. He knew what it was like, he had experienced some of the same things and he was enjoying his life.

Just the other day, I was asked to speak to someone who had just been diagnosed. That gave me a great feeling of contributing, of helping somebody else, just like this person that I spoke to. Just being there.

Danny found he needed to come to terms with himself:

When I was first diagnosed, I felt very angry at myself, that I had been stupid enough to pick up HIV. I should have been practising safe sex for at least five years.

In one of my counselling sessions, the counsellor piled on top of one another five telephone books. She gave me a piece of wood and said, ‘Anger doesn’t have to be a negative thing, it can be healing, but only if you express it.’ I started to hammer into the telephone books and it was frightening, the rage that was in me. It was directed against me.

My feeling about myself has changed. Overall, I like me. I am a wholer person today than I was this time last year. HIV brought out all kinds of issues – things that happened as a child – I’ve been able to look at them. I like being me. The God I believe in doesn’t make mistakes.

The Jesus of the gospels and the Jesus of the Church so often seem two different people. Some parts of the Church even go as far as saying that AIDS is a plague sent by God. But those who think that haven’t met my God. That’s blasphemy, to say that God is a despot, playing germ warfare with sections of humanity, it’s blasphemy.

I’m going to go ahead with the ordination. Very much so. I’ve been on the road to ordination for eight years and I’m not about to fold up.

Originally posted on the site “Myths, Legends, Books & Coffee Pots”, the official blog of Historical Fiction author, Mary Anne Yarde. See https://maryanneyarde.blogspot.com/2019/07/join-ann-richardson-as-she-takes-look.html

It was World AIDS Day at the beginning of the month of December.  Indeed, I believe, it is AIDS Awareness Month for the whole of December.

Are you fed up with causes? Do you see the word ‘AIDS’ and think “Oh, no, not another blasted cause I am supposed to support.” You have enough things to do. You just don’t need anything more.

Well, stick around, it is more complicated than that.

World AIDS Day

World AIDS Day comes every year, even though AIDS is no longer a life-threatening disease if you have the medication. Of course, there are plenty of people in developing countries who can’t get the medication, so it remains a serious cause.

But don’t run away. Not just yet. This is not another plea for compassion.

Quite the reverse.

So Many Good Causes

Compassion fatigue is genuine and understandable. We all feel we are constantly being pressured to Do Something. There is so little we can do in any case – it just makes us feel guilty.

And perhaps you have your own favourite cause, be it helping needy children overseas or climate change or cancer. Perhaps you donate money on a regular basis, or volunteer, or both.

My Interest in AIDS

My own interest in AIDS stems from the fact that a good friend, then aged only 32, died from it a long time ago.

He was an AIDS activist and one of his last activities of note was to organise an international conference for people with AIDS and HIV. This was attended by some 500 men and women, all of whom were HIV positive.

Because of our friendship, he allowed me to interview some of the people attending the conference, and then put the results together into a book. I made him a co-author in honour of his contribution, although he died before the book was published.

The people interviewed were very young – mostly under 40. They were from all over the world – Mexico, Morocco, Uganda, Germany, Malaysia, to name a few as well as the US, Canada, and the UK. None were expected to live very long.

What they had to say was both honest and impressive. Nothing to do with being a ‘cause’ or feeling sorry for themselves. They saw themselves as ordinary people trying to work out what was the best way to live when you know you don’t have very long.

They told stories about their lives and relationships, both the very real challenges and, sometimes, joys. They expressed, on the whole, very positive attitudes and resilience. I felt I could learn a lot from them. Their stories are said by one reviewer after another to be ‘very powerful’.  One commented that it makes the problems in your own life feel small.

I called the book Wise Before Their Time for a reason.

Yet it was a horrific situation and, all those I was able to trace had died within a year or two of the conference.

Learning

By all means, volunteer for the cause of your choice or give money to it. But that is not what I am talking about here.

We should think about people with AIDS – or, indeed, people in many other difficult situations ­– not because they are a worthy cause but because there is something we might learn from them. It’s not about giving – it is about receiving.  They have much to say.

And I have learned a lot.

This was first published on Sixtyandme.com (see http://sixtyandme.com/world-aids-day-or-how-we-react-to-different-causes-in-our-60s/) but has been revised slightly here.

Today is World AIDS Day, which only a few people these days will recognise.  It used to be a time of calling attention to the needs of people with this terrible disease – well, it still is, but fewer people are listening.

In my book, you will read about how it used to feel to be living with HIV or AIDS.  You may say that is no longer relevant or not of particular interest, but it is incredibly moving. Reviewers talk about ‘a very important read’ and ‘read it to understand the beauty of life’ – and that gives you a feeling for the kind of read it is.

“Many of the people who appear in her book were infected in the late ‘80’s when a positive diagnosis meant the sudden end of your life. The advice given to these young people had to do with how to cope until the end arrived. This often brought on depression, panic, suicidal thoughts, a denigration of self and a loss of purpose. They soon realized that in order to survive a positive diagnosis, a positive attitude had to be developed quickly.

“The amazing thing about the book is how each person went about this. In almost every case they had to reach down inside themselves in order to tap into their emotional and psychological reserves, something that took courage and persistence. This is the remarkable thing about the book, by using their own words taken from spoken and written interviews, an intimacy is created that is impossible to ignore. These people open up their hearts and souls and you can’t look away. What impressed myself and other readers is the fortitude shown.

“One of the common themes is that it is relationships with others which generally sustain people. Another is that people so affected become more aware of what’s happening around them, they begin to enjoy simple things in life like sitting in the middle of London watching the red buses go by, waking up and seeing the sunshine, looking at flowers, seasons changing. And as one person put it, “…thinking, God, I’ve made it –.”

Wise Before their Time had a lovely new review this week, entitled ‘Powerful stuff’.

The reviewer says:

An evocative tribute to the experiences of people with HIV and AIDS in the 1980s; to their suffering and to their strength of spirit. A collection of historical value and a reminder of the cruelty inherent to ill-informed, fear-driven prejudice that is just as relevant today.

Read this book. Listen to the stories of the people who contributed to it. Feel their experiences. Find the opportunity to learn from their wisdom in the way you live your life and the ways in which you relate to others.

I like this review because it says something I felt when I wrote this book.  Yes, one should read it to hear how difficult it was for people living with HIV/AIDS back in the day.  But, perhaps more importantly, we can learn from them to make our own lives better.

I say ‘amen’ to that.

Wise Before their Time is available as a paperback and e-book on Amazon and other platforms

“I don’t have the words to explain how important this is.”

This sentence was taken from a review of my book about people with HIV and AIDS in the 1990s, Wise Before their Time.

Suddenly, the disease no one has talked about for years is everywhere. No, not as a new epidemic, but as the focus of popular culture.

In London, the French film BPM (original title: 120 Beats Per Minute) has opened and can be seen in fifteen different cinemas. It was premiered at the Cannes Film Festival in 2017 and has been showing in numerous other countries for some time. It tells the stories of a set of young men involved with the French version of Act Up in the early 1990s.

It was very highly reviewed and won many awards, including the Grand Prix at Cannes. I saw it yesterday and it was very powerful.

Meanwhile, a week ago, a two-part play called The Inheritance opened at the Young Vic Theatre in London. Directed by Stephen Daldry, it depicts the lives of a set of young American gay men over a period of time, including the AIDS crisis. The Telegraph newspaper gave it 5* and said it was ‘perhaps the most important American play this century’. I have yet to see it.

It happens that I recently read How to Survive a Plague, by David France, although it is not just released. It is, again, about AIDS activists but this time in the United States, and was issued first as a movie (in 2012), and subsequently as a book (2016). It is well worth reading as it chronicles the drama of the period.

And this brings me to my own book, Wise Before their Time, in which over forty people with HIV and AIDS talk about their lives in their own words. First published in 1992, based on interviews at an international conference of people with HIV and AIDS in 1991, it was re-launched last year to great acclaim. Have a look on Amazon, it has received nothing but 5 star reviews.

Ian McKellen wrote a Foreword in which he said “These stories are as powerful as any great classic of fiction”. That’s a good start.

And what do the reviews say? Many stress its importance, as in the title to this post. One reviewer wrote “This book’s intrinsic historical and cultural value is invaluable.”

Many explain the nature of the stories “often moving, even tear-inducing, and also occasionally funny” and “an honest, moving picture which touches a reader’s heart”.

And one urges “Do read this book. If not for anything else then just to understand and appreciate the beauty of being healthy and being alive!”