My aim in posting these interviews from so long ago is partly to show people what it was really like, partly to help others who have been through the experience and partly to show how very lucky most of us are. I guess that is lightening their loads. Thanks so much for your comment.
I think it is important for those of us who lived through that period to be reminded of it from time to time and for those who never knew about it to learn first hand. (I don’t know which you are.) You will see other pieces have already been posted and I will post others now and again.
Ann, you are the BEST! I love that you are “greedy” for the odd sentence or two in response. I had several reactions: the first was to be so sad about Sarah and her children; the second was to wonder why she was never able to receive treatment and thus died so young. I’m not remembering when the first effective drugs were introduced - ? Another response I had was to reflect on how extraordinary your earlier career was. You are truly a woman of multitudes.
Thanks, Debbie. There was NO treatment for HIV/AIDS that made much difference at the time - it was so poignant to be interviewing young person after young person, all knowing that they had an almost certain death sentence. My interviews included 1-2 people who were on trials for treatment that was later found to work, but otherwise there was nothing. Because of this, I refused to keep the royalties that ensued from the work (I gave them to an AIDS charity that did hands-on work). The book was published by HarperCollins and it sold c 8000 copies, but it should have sold more. When I took it back to self-publish it, the guy responsible said, rather casually, “Oh, yes, this was a terrific book, we didn’t really market it properly”!!
And yes, I had a wonderful career involving interviews with people in all sorts of circumstances over 30+ years. Many were done for Government agencies and I did not own the results and couldn’t keep them. The later ones, about the people with AIDS and people working in hospice care (and grandmothers) were done on my own dime. All were completely fascinating and I love to share the complexities of their lives.
Finally, while I have your attention (I hope), I sent you an email yesterday. Did you receive it?
I am a nurse and was assigned to the “Aids” unit one day. Patients walked around in their street clothes (in the 80’s) which made them feel “normal” as can be. I was terrified to even touch them. I soon learned they were scared of this disease as much as I was. I double gloved, as needed, and took care of them as I did anyone else. People are people no matter what illness they encounter.
Thank God for the viral medicines discovered for HIV-positive patients. They are living a better, longer life enjoying family and friends to their fullest.
Thanks for giving a voice to the HIV-positive community.
I saw your reply earlier but wanted to reply properly. I think all you nurses and doctors who worked with AIDS patients are the real heroes. You didn’t die, but you didn’t know that you wouldn’t then - and I assume many did.
I was also scared being around them, but slowly learned that I couldn’t catch it easily. I had a gay friend (who died since, but not from AIDS) who did a lot of work on AIDS for the WHO and I once asked him if I could get it from sharing a glass and getting a bit of spit. He replied that I would have to drink a bucket of spit to have any possibility. Such a ludicrous but vivid idea always stayed my head and helped me to cope.
All my interviews were undertaken at an international conference and it was such a wonderful opportunity to get a lot of people at one time. They were wonderfully cooperative - I think because they saw it as one way of getting their stories told. I came away with tremendous admiration for them. I am proud of my book as a tribute to their courage.
“Every day has to be special.” I hope Sarah had an abundance of special days before the end. Thank you reminding us of that terrible time, when being HIV-positive was a humiliating and isolating death sentence,
I am driven to share these terribly painful but moving interviews with my readers. Perhaps I want to give these long gone people a voice, since they can no longer do so themselves. Each one is surprisingly different. I am not sure that many people are keen to read them, but I will do so anyway, parcelling them out slowly as the mood takes me. Thank you for appreciating it.
Ann, such a poignant tale. My brother-in-law was diagnosed as HIV-positive in the late 1980’s in his late teens; He sought and received good treatment and eventually was found to be non-infectious a decade or so later. The issue he found most difficult to live with was not stigma so much as coming to terms with finding out he no longer had a death sentence hanging over him. It caused him much anguish. Of course there was significant impact on his body and he eventually died in 2012 when various organs wore out. However he enjoyed a great amount of support within his family which helped him throughout.
I’m not sure if he felt guilty; he spoke of frustration with what to do with his time having lived alone expecting to die, then finding that sentence lifted. He painted, made music right up until his heart gave out. I may write about him some day …
Actually, I remembered this morning that one guy in my book was told he had two years to live so he sold everything and traveled around the world for two years only to find that he was still very much alive and broke.
You should. It sounds like he was a thoughtful man dealing with an unusual situation. It seems so odd to me because all the people with AiDS who I knew would have given up their right arm to have their life sentence reversed! I had a lovely friend aged 31 who used to say “all I want is my life “. Very touching.
Thank you for sharing this story. It can only help lighten the loads of so many.
My aim in posting these interviews from so long ago is partly to show people what it was really like, partly to help others who have been through the experience and partly to show how very lucky most of us are. I guess that is lightening their loads. Thanks so much for your comment.
WOW!!! So powerful.
Thanks, yes it is.
I think it is important for those of us who lived through that period to be reminded of it from time to time and for those who never knew about it to learn first hand. (I don’t know which you are.) You will see other pieces have already been posted and I will post others now and again.
This is a very moving story, Ann, and I may have read or heard it before, but still I was close to tears, and you know that I don't cry easily. Art
Much of it is in the book. Did you read Daisy (https://arichardson.substack.com/p/daisy) about the toddler dying? That will give your eyes a serious wash.
Ann, you are the BEST! I love that you are “greedy” for the odd sentence or two in response. I had several reactions: the first was to be so sad about Sarah and her children; the second was to wonder why she was never able to receive treatment and thus died so young. I’m not remembering when the first effective drugs were introduced - ? Another response I had was to reflect on how extraordinary your earlier career was. You are truly a woman of multitudes.
Thanks, Debbie. There was NO treatment for HIV/AIDS that made much difference at the time - it was so poignant to be interviewing young person after young person, all knowing that they had an almost certain death sentence. My interviews included 1-2 people who were on trials for treatment that was later found to work, but otherwise there was nothing. Because of this, I refused to keep the royalties that ensued from the work (I gave them to an AIDS charity that did hands-on work). The book was published by HarperCollins and it sold c 8000 copies, but it should have sold more. When I took it back to self-publish it, the guy responsible said, rather casually, “Oh, yes, this was a terrific book, we didn’t really market it properly”!!
And yes, I had a wonderful career involving interviews with people in all sorts of circumstances over 30+ years. Many were done for Government agencies and I did not own the results and couldn’t keep them. The later ones, about the people with AIDS and people working in hospice care (and grandmothers) were done on my own dime. All were completely fascinating and I love to share the complexities of their lives.
Finally, while I have your attention (I hope), I sent you an email yesterday. Did you receive it?
I am a nurse and was assigned to the “Aids” unit one day. Patients walked around in their street clothes (in the 80’s) which made them feel “normal” as can be. I was terrified to even touch them. I soon learned they were scared of this disease as much as I was. I double gloved, as needed, and took care of them as I did anyone else. People are people no matter what illness they encounter.
Thank God for the viral medicines discovered for HIV-positive patients. They are living a better, longer life enjoying family and friends to their fullest.
Thanks for giving a voice to the HIV-positive community.
I saw your reply earlier but wanted to reply properly. I think all you nurses and doctors who worked with AIDS patients are the real heroes. You didn’t die, but you didn’t know that you wouldn’t then - and I assume many did.
I was also scared being around them, but slowly learned that I couldn’t catch it easily. I had a gay friend (who died since, but not from AIDS) who did a lot of work on AIDS for the WHO and I once asked him if I could get it from sharing a glass and getting a bit of spit. He replied that I would have to drink a bucket of spit to have any possibility. Such a ludicrous but vivid idea always stayed my head and helped me to cope.
All my interviews were undertaken at an international conference and it was such a wonderful opportunity to get a lot of people at one time. They were wonderfully cooperative - I think because they saw it as one way of getting their stories told. I came away with tremendous admiration for them. I am proud of my book as a tribute to their courage.
“Every day has to be special.” I hope Sarah had an abundance of special days before the end. Thank you reminding us of that terrible time, when being HIV-positive was a humiliating and isolating death sentence,
I am driven to share these terribly painful but moving interviews with my readers. Perhaps I want to give these long gone people a voice, since they can no longer do so themselves. Each one is surprisingly different. I am not sure that many people are keen to read them, but I will do so anyway, parcelling them out slowly as the mood takes me. Thank you for appreciating it.
It’s quite possible no one but her kids has thought of her in years. And I just did, along with other readers.
I guess that is the point. Well put.
Ann, such a poignant tale. My brother-in-law was diagnosed as HIV-positive in the late 1980’s in his late teens; He sought and received good treatment and eventually was found to be non-infectious a decade or so later. The issue he found most difficult to live with was not stigma so much as coming to terms with finding out he no longer had a death sentence hanging over him. It caused him much anguish. Of course there was significant impact on his body and he eventually died in 2012 when various organs wore out. However he enjoyed a great amount of support within his family which helped him throughout.
Now, that is fascinating, Greg. Did he feel guilty? Did life lose its savour when it was no longer time limited? It would make a great novel,
I’m not sure if he felt guilty; he spoke of frustration with what to do with his time having lived alone expecting to die, then finding that sentence lifted. He painted, made music right up until his heart gave out. I may write about him some day …
Actually, I remembered this morning that one guy in my book was told he had two years to live so he sold everything and traveled around the world for two years only to find that he was still very much alive and broke.
You should. It sounds like he was a thoughtful man dealing with an unusual situation. It seems so odd to me because all the people with AiDS who I knew would have given up their right arm to have their life sentence reversed! I had a lovely friend aged 31 who used to say “all I want is my life “. Very touching.