My name is Tom and I am HIV positive, I have been so for almost six
years now.
Today, thanks to the Kane County Open Door Clinic and all the hard
working people there I am HIV undetectable. My recovery is also due
to my being able to get the medications I need through A.D.A.P. Illinois
(the AIDS Drug Assistance Program).
I will begin by telling you that I am luckier than most people in
my situation and that I am not an innocent victim in all of this and
there are many I assure you.
As a thank you to all those who have helped me I am trying to help
people understand this disease and the problems associated with dealing
with it.
At the same time encouraging and educating others so they can avoid
it.
HIV/AIDS has been in the public consciousness now for a little over
twenty years.
In the early years there were no treatments for HIV and people once
diagnosed had little time to live. There was great misunderstanding
of what was happening, much like the Black Plague of the Middle Ages.
Some thought it was a punishment from God for immoral behavior by
gay men, since it was gay men that were doing most of the dying. Well
this was not the case as we have come to see. Innocent people like
Ryan White were dying also, from blood transfusions with tainted blood.
It was not until people like Rock Hudson died and Elizabeth Taylor
became an AIDS activist did better understanding of the disease come
to the general public.
I was a young gay man in the closet in the mid eighties and it scared
me right back into the closet. But as time went on I became claustrophobic
in the closet. So I ventured out into the gay world. This was in 1994
and I found people living in denial of HIV or at least with wanton
disregard. Perhaps it was the danger that made things that much more
exciting. So I began to test the waters myself, first testing it with
a toe and eventually wading out to the deep end. I should have known
better but everyone around me seemed to be having fun swimming in
the deep murky water.
So I eventually began to use the diving boards and snubbing the dangers
of HIV myself.
I believe that one of the reasons that people are losing their fear
of HIV/AIDS is that people are not dying all around us in the great
numbers that they once were. People are beginning to see it as a chronic
illness easily controlled through medication. While this is true for
those of us who are lucky enough to have access to good health care
and meds, it is not the case for people in third world countries and
people are even dying here in the United States on waiting lists for
meds here in this country. We need to get people to give the virus
the respect it deserves if we are going to beat it or at least keep
it in check until scientist can find a cure.
If you were to meet me on the street, you would not guess that I have
HIV. It is highly unlikely that you could pick out most of us who
are HIV positive just in passing. What you do not see is all of the
hassle we have to go through to stay healthy. I am not complaining
I am just telling you like it is. There are great resources all around
us to help us with HIV and if you need them you should seek them out.
I currently take two pills once a day to keep the virus in check.
This sounds easy enough but they are time sensitive and need to be
taken at the same time every day, I also need to fast for two hours
before taking them. I have to get my blood drawn four times a year
to make sure that the virus has not mutated and that my immune system
is holding and hopefully improving. After every blood draw there is
a follow up appointment with the Doctor or RN who is responsible for
my primary care. Then I have to meet with my case manager and keep
all the paper work up to date so I can continue to get the care and
meds I need. I get a phone call once a month from Pharmacare to make
sure I am still eligible for meds and that all my information is current
and correct.
So all in all staying healthy is like having a part time job. It
becomes a part of your life that is second nature. Again I have it
much easier than most people; there are those who have to take meds
every two to four hours. They also have to deal with nearly constant
nausea and diarrhea. Even others are infected with mutations of the
virus that there are no meds for yet. Anemia can be another problem
for many dealing with this disease. Personally I do not have the energy
that I used to and work takes a lot out of me and I need much more
sleep than I used to. It also becomes scary whenever I am around someone
who is sick. Before I got on meds whenever I got sick I would wonder
to myself if this was it, the beginning of the end, and off to some
hospital to die. Well I was lucky enough to evade that so far with
the help of the Open Door Clinic and ADAP. I am in need of this help
for the rest of my life, because no insurance company is going to
pick me up and there is no way I can make enough money to buy the
meds on my own, also the primary care provided by ODC.
HIV is not the only danger out there that we must protect ourselves
from. There is also Gonorrhea, Syphilis, Genital warts, Hepatitis
A, B, and C, and Herpes. Many of these can be life threatening, they
may seem to pale in comparison, but that is no reason to not avoid
them. We all need to be stalwart in avoiding these diseases and protecting
ourselves and our loved ones. Some of these STD's are becoming drug
resistant and harder to control once contracted. Abstinence is the
only sure way, but we are human and that does not seem to be in the
cards for most of us. However safe sex is totally doable and the only
reason not to practice it is to flirt with danger. It is irresponsible
not to, believe me I know from firsthand experience. It is prudent
to wait till you are in a committed relationship and that you have
both waited and been tested. Ask questions from a knowledgeable health
care provider to be certain. If you always assume the worst and wait
to be sure, you will not be disappointed.
For me one of the biggest problems in dealing with the virus is all
of the uncertainty. You feel good today but that could all change
tomorrow, but that is life there really is nothing but uncertainty.
Innocent people get hit by a bus everyday.
I do not consider it a burden, it has become a part of my life and
that is just the way it is. I went through periods of denial and anger
and mostly fear of the unknown. I know I do not want to wind up on
some hospital bed for weeks or months. So as long as I take my meds
and take care of myself I keep that bed at bay. It really is all on
me to find the things I need to stay healthy and use them to the fullest
benefit I can. We have to be responsible for our own cure or at least
a reprieve to live out what we can of our lives. It is much easier
to avoid the virus, as I knew but slipped. That is no reason for someone
else to slip. If we do slip it is up to us to get up and brush off
the dust and get on with life the best we can.
I am not ashamed that I slipped, I just did. So that is my personal
attitude now. It took some time to get there though. I do know that
just marking out the days is no way to live. So if you are down, put
yourself in a position to get the help you need. I assure you that
it is there. It might not be as easy as going to the corner store,
but it is worth it I assure you. Perhaps you can help someone get
the help they need or better yet help them avoid the need for the
help altogether.
I recently gave a short speech in Chicago at the Washington library.
There were some words from the late mayor inscribed on the floor that
sums things up very well as far as needing help and being able to
give it.
To every man woman and child listening to me today...
I ask you to consider the need and examine your skills and find a
way to contribute to the salvation of our city...
In return for your investment...
In return for your sacrifice...
I promise you this...
You will be richer for what you invest..,
And that you will be happier for the troubles you absorb...
And that you will be happier for the affliction...
You confront for the sake of our city...
Let us confront our problems...
Not just contain them...
Harold Washington Mayor of Chicago
I would like to say that life is what you make it and even with HIV/AIDS
you can still have a full life. It is a little more work though. It
is worth it I assure you. Once again I will admit to having it better
than most people in my situation and I make no apologies for that.
I would like to help everyone, I however cannot. It is up to all of
us to help ourselves and if we have any extra, help another.
Our problems as a country are many and growing everyday. We are human
though and it is hard to see another person's problem as being greater
than our own. Occasionally, I too slip into self pity and then I see
someone so much worse off than myself, this is the slap in the face
that brings me back to the reality of how good I really have it. HIV
is a part of my life and that is okay, but life would be a lot easier
if it were not. I know many whose lives are constant pain and misery
because of it. Protect yourself and let HIV be like your shadow. You
see it but it can't hurt you.
As I wrap this up my mind wanders off to wondering what the results
of my latest blood tests will be. I hope that they are as good as
last time and that I can stay on my current meds. Then I start thinking
about reapplying with ADAP for another years worth of meds. There
is always the possibility that they do not have enough funds and they
have to make cut backs. It would seem a cruel joke to get me better
only to cut me loose for a lack of funds. It is a reality that people
face everyday. I am prepared for that if need be, but I hope not.
Life would be a lot simpler without HIV, but it is just life and we
all have our problems. Don't add to yours as I did to mine is my advice.
However you can handle it as I have if it does come your way.
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