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my name is joe...
      #546 - 03/30/00 07:47 PM

My name is Joe and I have known that I was HIV+ for 12 years now.
I had been with my lover for a year when I began to have
symptoms. I went to the Dr with swollen lymph nodes and a "chest
cold" that wouldn't go away. I was admitted to the hospital with
a dx of pneumonia, and I knew right then that I had AIDS. We were
both in the healthcare field, so we knew a little about what was
going on amongst our gay community. He chose to go into denial
and pretended it never happened, while I secretly spent hours in
the hospital medical library reading all that I could. I wasn't
allowed to confide in anyone about our status because if I came
out, everyone would know that he was positive too. I remained
silent although I protested daily. Friends were announcing they
were positive and I was still not able to let them know we were
too. I eventually couldn't live with myself anymore and begin
confiding in those who had opened up to us. I felt like such a
deviant and would have to tell the truth and then say "don't ever
let on to Jack that you know." One of these friends began going
to a support group and begged me to go for months. Finally I went
and it changed my life. I was able to see that living my life in
denial, and the closet once again, would eventually kill me. I
loved Jack very much and other than when AIDS was the issue, we
were very happy. It took me three years and moving a thousand
miles away, but I did make the break. We still saw each other
often and talked on the phone almost daily. Here, I could be the
activist, advocate and educator that I always knew I should be
and his confidentiality was intact. It was a win / win for both
of us. He began to get sick and he was diagnosed with lymphoma
however very late. He had allowed himself to reach kidney failure
to the point of near death before his mother took him to the
hospital. This was a highly skilled nurse and knew what treat-
ments he needed, yet he refused. Only after coming back from the
brink of death did he seek treatment. I went back and took care
of him in his final days. And he still was angry at me for not
seeing things his way and living as he did. His last words to me
were, "see, I told you AIDS wouldn't get me." During this time I
have lost countless friends, close friends . . . people I Loved.
Today I have an undetectable viral load and' my T-cells are
multiplying like rabbits, I should be happy, but I am finding
myself just sitting there asking why as I take another handful of
pills. How can we deal with such multiple losses as well as our
soulmates, how can we do it? I struggle every eight hours with
why do I want to take these I do not deserve to survive, I am no
better than those who have gone before me. I've lost the desire
to do AIDS prevention, I have the attitude that I've been saying
these things for years and if you don't get it by now, ya never
will. I want to get back to a real life that is not dominated by
this virus, but how can I do that when I haven't come to terms
with it all. I need to be around others in this situation . . .
and I know your out there and the key to successful survival has
to be helping each other get there! What do you think?

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Re: my name is joe... new
      #548 - 03/30/00 07:47 PM

Joe, I've tested positive for 12 years as well. And unfortunately
I understand all too well what you have gone through and what
you're going through now. However, it took me about 5 years to
come to grips with HIV. It was in a state of depression I am
told. This depression reappears on occasion but is much more
"mild" than before. Anyone who is involved in my life (family,
firends, co-workers, colleagues) has been apprised of my
situation, and I think this has been beneficial to me. I have
been very lucky in that EVERYONE has been supportive --- to the
last person. I don't know what would have happened to me
otherwise. I probably would be dead by now.

When I first discovered that I was HIV+, I decided to do all the
things that I always wanted to do and had never done. ----- I
traveled ----- This however was not enough.

I continued working until 2 1/2 years ago at which time I went on
disability. My viral load and t-cell counts have improved, not to
"out-of-this-world" proportions, but they are definitely better.
In the past two years I've become involved in numerous AIDS
organizations. In the beginning I was very enthusiastic about
trying to help educate others, serve others less fortunate than
myself, and perhaps make a difference with different planning
groups. As of late, I've become very disheartened by those
involved in AIDS work that are involved ONLY for the betterment
of their own carreers. I my experience these people have
typically NOT been fellow PWA's, let alone gay. I still remain
active in these groups, however, I have lost the zeal I once had,
and have been considering withdrawing from many of these
organizations. It's a very difficult thing for me to witness.

You mentioned carrying on with a "real" life not dominated by
this virus. With sadness I have to say that there is no way for
us to do that. There is no way for us to rid ourselves of this
virus. It will be with us for the foreseeable future. We have to
live with it. Everytime I think I've come to terms with this
virus, something changes. Perhaps it's a question of reaching
different levels of acceptance....different plateaus of
understanding .... I don't know...

But... do be aware that we, as survivors, may not be better than
those who have died before us. And I'm certain that many of our
departed brothers/sisters did indeed deserve to live longer
lives. But, we have to allow ourselves to be comforted with the
knowledge that for one reason or another we have been blessed to
see more days on earth. It is hoped that we will use our time
fruitfully and in a positive manner, rather than in a negative,
destructive fashion.

Take Care.......

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joe maniscalo

Re: my name is joe... new
      #550 - 03/30/00 07:49 PM

Hi My name is Joe also, and I was diagnosed HIV+ in 6/87. Almost
all of my friends have died, actually just about everybody that I
knew. You can't replace friends like you can go to the store to
get more milk. I use friends in a rather broad sense, since all
the people we know, at all levels, people that we both like and
dislike, are close to us and just people that we see around make
up the fabric of our lives. When all these people are gone the
fabric which makes up our lives is gone. There is not much left.
There is much more to surviving with AIDS than just medically.
The non-medical aspects of AIDS survival I think is much more
difficult, such as being on disability and doing well enough to
go back to work, but can't go back to what you were doing
(waiter, in my case) So go back to work as what? It is much
easier said than done. Since I am a lone survivor, I feel that I
sort of have a responsability to plug along, sort of like my own
tribute to all the people that I knew who have died.

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Re: my name is joe... new
      #552 - 03/30/00 07:49 PM

JOE:) We are greater than anything. I feel your pain. It is quite
giving of you to help your lover with his final days. You need to
love yourself to love others. I have had AIDS for 3 years and HIV
for 9 years. I am living with this not dying of it. I am taking
steps to include love, light,...hope in my life. U can do the
same. U deserve it..

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