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25 Years of AIDS. What do we think about it?

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I have been reading the mainstream press "commemorating" 25 years of AIDS.  I feel left out of that discussion.  I don't think it really reflects on what we're seeing and feeling.  So here is an invitation to join me with what your thoughts are on this subject I want to know how other people with HIV feel.  I'll throw out what I've been thinking:

I'm 44, and came out in 1983 right around when HIV was being "discovered" and AIDS named.  Thank God I didn't come out earlier, and that I practiced safe sex, or I'd probably be dead, as happened to a number of gay men I know mostly just a bit older than me.  That period was so sad and so horrible.  It's like a nightmare.

I went for almost 20 years, would have an "accident" here or there (condom break, etc).  I never thought I was invulnerable, but my annual tests always came back negative.  I figured I'd be ok.  I guess I even got smug - "it's not so hard to stay negative, how come anyone turns positive these days?"

Then in Sept 2002 I went in the hospital, for the first time in my life involuntarily, due to an unrelated stomach condition.  The Dr. asked if he could test for everything, and came back with the bad news the next day.  He said the test could be false since I had a bad fever.  But after some re-tests, just after my 40th birthday, it was confirmed I was positive.

That raised a zillion questions in my mind:  How did I get this?  I couldn't remember any specifically unsafe incident.  But lots of sex mixed with drugs or alcohol left a lot of possibilities.  Would medicines work for me?  Would they be toxic? My natural inclination was to stay off them as long as possible so I tried to be much healthier, and did stay off them almost 4 years.

Now I'm on a great regamin, and all my numbers look great with no current side effects (a few initial ones).  I feel like I have a new lease on life, although I feel it is as tenuous as receiving those 4 bottles of pills every month on time.  I remember counseling a friend who tested positive about 3 years before me:  "it's not a death sentence anymore" I said, and believed it!  I keep having to tell myself that now. 

I came of age when AIDS appeared.  I remember when it was GRID.  I've had friends and acquaintances die of it, including 1 last summer when his treatments stopped working, after he had initially responded well to meds.  He had shitty healthcare from the public system in Mexico.  I have another friend with HIV 14 years, he nearly died last fall when he ran out of treatment options, then Fuzeon and Tipranavir came along to save his life, he now has gotten back to nearly undectable for the first time in years as he has been resistant to everything.   He has a great US health plan, and got access to the latest trials. I have known several long term survivors, who had HIV for over 10 years and never took meds.  I don't trust HIV, it is nasty and cruel, ready to spring back the first time I screw up.

I've worked for AIDS Foundations as a volunteer.  I've given money to AIDS organizations, and still do.  My best friend from childhood made AIDS his vocation, as a case worker, until he burned out after 10 years or so.

I've cried about it, and I've been hopeful about it.  I've screamed "why me?" and I've thanked God not to have gotten it before HAART came along.  I've been open about it and I've been closeted about being HIV+.  I've been scared shitless, and I've felt confident in my treatments.

In retrospect the thing that scared me the most was watching my body decline as the CD4 count went down.  Weird digestive, skin, energy and sex-drive issues.  I'd never really been sick with anything serious before, so it was new to me.  The fear that "if I was trapped on a desert island" and couldn't get meds, I'd die.  (Except if I was on the "Lost" island, where I would magically find a hatch with all the latest meds inside). This past year I had 2 friends die:  one was hit by a bus (seriously), and one dropped dead after 2 days from a weird staph infection.  So I count my blessings - my time hasn't come yet.  It's just something I have to live with and make the best of.  And when it comes, there isn't much you can do about it.

One thing is weird though:  I can't tell my parents or immediate family.  I figure I'm going to outlive my parents, as it is supposed to be, so there's no need to burden them with this - they would go crazy with worry.  They are beyond acceptance of my being gay and well into successfully making it part of our family's partner is always included, and my parents are proud of me.  But this puts up another block - like I've been thrown back in the closet again.

Right back where I started when I came out of it in 1983.  Go figure.

Now that AIDS has turned 25 it's a real eye opener for me.  This damn disease has been wreaking havoc almost my entire life...I'll be 29 in November, and have been poz for three years.  To be honest, the whole thing actually has me sorta speechless when I sit back and think on it.

Good post.  25 years, wow.  I lost my sister to this in 93 and the horror of that time still haunts me.  It was such a terrifying thing with so little information and what was out there was so wrong. I remember her doctor telling us not to let the dog kiss her on the mouth and then lick us!  My most vivid memory of that time was one Thanksgiving, I think it was 86,  when we were all together eating the feast.  She got up and left the table to begin helping with the dishes.  I saw she had left most of her tea in her glass and so I reached for it and slammed it down.  My parents and the rest of those at the table turned pale and looked at me like I had just swallowed cyanide or something.  To my never ending shame, it was hard for me to talk to her about the disease until the end and even after her death, I closed off all emotions relating to it like it never happened. 

Back in December my honey found out he was poz.  God the tears that flowed.  I was so stupid to think this thing would never touch my life again.  But it isn't about me, it's about him.  Luckily the years have given me more maturity and I find myself even more in love with him as a result.

I won't lie, this thing scares the hell out of me.  But I will fight it with him and with your help.  And oh dear God, please don't let there be a post someday remembering a 50 year anniversary and still no cure.

25 years and still no cure for Aids...but in reality, there is no major breakthroughs with medicine.  There is no cure for the flu, there is no cure for cancer, and there is no cure many other diseases out there.  Yes we have made slight improvements, but the medical profession is clearly lacking talent in my opinion; humans are clealy not the smartest in this planet, as they so to claim. 

There are so many medical research facilities around the world and yet, over the past century I have not been impressed with the outcome of the researches that have been produced.  So it is no surprise to me that Aids exisited for 25 years and yet, nothing remotely close to a cure has been discovered.  We may have learned a lot about the disease, but that tells me nothing if we cannot apply these findings to useful matters. So basicaly the more information we know about the disease, yet we are not even closerto a cure only tells me that we are not as smart as we think we are.  I always reserve doubts with medical professionals.  I remember when I was in college, I had developed this strange infection that it affected my legs and I could not walk.  I was brought to the hospital and after a week of testing and more testing, they still wasn't able to figure out what was wrong.  Pretty I paid for the hospital bills just so doctors could draw blood from me.  They didn't give me any medications or anything....In the end, it was my body that healed itself....the infection was gone and I left the about a wasted of time and money.  They still have no idea what was wrong with me.  This was not at a regular hospital, but at a very well known (rated one of the best medical research hospitals in the nation)....and they could not figure out what was wrong with me. 

One might argue that meds for Aids have saved many lives, which I do not doubt....but at the same time meds have also killed many people because the meds can cause other complications.  Aids existed 25 years and my guess is that we probably only know less than 1/32 of this disease.  We may think we know a lot, as humans tend to pride themselves on wisdom and knowledge, but in reality we know jack-shxxt. That's just my take on this.



 We have certainly come a long way in 25 years, With treatments, and education, But, We still have a long way to go.  We all need to continue the fight,and to be strong, and never forget those that have lost their lives.

 I would love for all of us, and future generations to be able to say, " Remember when there was aids?" I certainly didn't think, that I would be around 20 years later.

 Always Hopeful-----Ray


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