Alex
Surviving When Everyone Else Dies
Posted on: 09/18/2013 09:49
Those of us who had AIDS in the seventies or eighties, and those who affected because partners and friends were all infected, were given a gift in the middle 90s, drug treatments which was effective, and allowed many to continue living. It was truely a great thing.
But it was not "poof" everything is better now. We had to deal with side effects of the drugs, physical and mental, and those of us who were very sick, had to start planning a long life, and a return to work, of some sort.
In addition we had to deal with the loss of our friends. Because HIV was stigmatised in a way other illnesses were not, we formed community among ourselevs. Providing mutual aid and friendship. Non infected people were often freaked out upon hering the nature of our illness, (HIV was both terminal, and it was a growing epidemic.) People if they were not afraid of being infected, did not want to start friendship[s or relationships with people who were likely to die soon.
After the mid nineties people with HIV continued to die due to having develped resistant in clinical trials, or due to side effects of the earlier drugs, or just through the same illnesses evryone dies from, like cancer and heart disease.
As a result we have few survivors who were ill, or who lived with an ill partner. HIV/AIDS services are gearted towards the 95% of people who are infected and never became ill. (becasue they became infected after the drug treatments became available around 1996)
Now there seems to be a rash of deaths of long term survivors, or their partners. They just give up, and stopo taking their meds, and allow them selfes to die of HIV,(if you stop your meds, within months you return to the same state of health when you started them) or if they were never sick, the suicide. This is happening largely in the gay community among white middle class males.
Ths has happened to two famous people, Spencer Cox died last year.Heres a NYT article about his death and life, If explains the many challenges this man had. http://www.nytimes.com/2013/02/24/fashion/what-really-killed-spencer-cox-aids-activist.html?pagewanted=all&_r=0
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Alex
Posted on: 09/18/2013 10:04
And today comes news about Stephen Crohn, dubbed "The Man Who Can't Catch AIDS.
His partner was one of the first to die, and as a result he was on the the earliest activists. It turned out he had a genetic anonoly that prevented him from being infected with HIV. HOwevr that did not stop his friends from dieing. He lost hundreds of friends, as one would die they were replaced by other people with HIV. Which happened to me, except that becasue the epidemic came later in Ottawa, and treatments were available for opportunistics infections, howevr since those treatments were not avaiable in New York, the large numbers of deaths that affected him happent over a 15 year period, while for me the large numbers onbly happened for 8 years.
Mirror.co.uk http://www.mirror.co.uk/news/uk-news/stephen-crohn-dubbed-man-who-2280045#ixzz2fFhuZDSN
This is the first such death I have heard about a non infected suirviors, but for the last several years they have been rising numbers of people. (This out of a possible 100 long term survivors in Ottawa, Perhaps 10 have died in similar ways to Spencer and Stephen,
Because the numbers are so small, if is not an issue in the community. (there are like 7000 people with HIV, but who were infected after treatments, and nvered lived therough the trauma of seeing so many people they loved die, at such young ages.
BUt becasue there are only around 100 (or 90 now) is a reason not to offer services geared to the challenges, that these people face.
stardust
Posted on: 09/18/2013 19:47
Alex
I'm sorry to hear such sad and tragic news.
I found an article about some kind of aids meds possibly being beneficial to the heart ....?....but its way too complicated for most people to understand I surmise. You may decipher it and be interested.
I hope you are well and holding up yourself after all you've been through and still endure no doubt. Your road hasn't been easy, its full of twists and turns.
stardust
Posted on: 09/18/2013 20:08
Carey Landry singing "The Journey"....I hope you like it.
http://www.youtube.com/watch?feature=player_embedded&v=yquPBarAumg#t=127
lastpointe
Posted on: 09/21/2013 07:10
In a way Alex, the situation is similar to elderly people. All their friends die, all their families die, often their children die and they hang on. I know some who wonder why they are still going on.
Depression is very common. Finding a purpose is very important.
I am sorry that you have lost so many of your friends. I remember how sad you were a few years ago when one of your friends died.