I AM NOT A FOOL!!!...a continuation of a "chronic" problem

[B99]

I don't want to alienate myself on this forum, but I come from a long line of people who have fought for the equality and care that they deserve, and are still fighting for.  I know, first hand, issues involved with maneuvering through public policy, public opinion and community affairs to try to reach some conclusion that will actually affect the people these institutions are set up to protect in a positive way.  I know the dark side.
What I take as an "offense" is being labled as a foolish, naive, newly diagnosed HIV-positive male who is just waiting to have the cruel hand of fate and circumstance, slap him, again, with another insurmountable situation.

I am not a fool.  I know that there are those who will try to use the "chronic" classification of HIV as a springboard to diminish funding.  I know it has the potential to shift the publics' awareness of this disease to undetectable levels.  I know there are still high hurdles that need to be overcome when dealing with this disease.

Do you know how I know?  Even though I haven't been living with this virus for 20+ years, I have been living in a society where fear of HIV/AIDS and those with it has been as prevalent as McDonald's and Disney films.  No we don't talk about it everyday, but it is weaved into the fabrics of our daily lives.  I never knew anyone with HIV.  I heard a few rumors about some people, but I was never one to let rumor and innuendo shape my opinion of someone.  As I've said before, I am inclusive and pragmatic.  IT'S A VIRUS FOR GOD'S SAKE.  It's not a morality disease.  Those who are "bad" don't get it.  It doesn't discriminate.  We should not turn our backs and minds to those who are dealing with this.  I worked for the campaigns, I educated people about safe sex, but when it came down to protecting myself (at least once) I let my guard down.  Now, 25 years of HIV are hitting me hard. 
 
So, to me, for someone to say that I am just being foolish about the current affairs of HIV/AIDS is a disrespect.  No I don't know what it is like on the front lines, battling for this drug payment, or that hospital bill, or being fired from a job because of it.  BUT I DO KNOW THAT I WILL AT SOME POINT IN TIME DEAL WITH THAT OR SOMETHING ELSE LIKE IT.  Being newly diagnosed, I'm dealing with it now.  My own biases, stereotypes and subconscious judgements are coming to surface.  But the object of these mental ideas is not a gay male in San Fransisco, or a crack mother in Harlem, or an Indian prostitute in New Delhi; IT IS ME. I hope everyone remembers what it was like being newly diagnosed and what it is that you needed in order to continue on this journey we call life.  I have just been drafted into an army that I did not want to be a part of and I am going to the front lines.

So what do those who have been on the battlefield say to someone who has just been drafted?  Do you say to them "everything here is shitty.  Our guns don't work, we have no food.  Sickness is rampant.  There is no hope."?  We see that.  Where is the call to action in cynicism and despair?  What is the point of fighting in a war that you do not believe can be won?  The real job of leaders is to look beyond that which is obvious to that which is possible.  That which can only be dreamed of, and to find a way to motivate those to move towards that vision.

HIV is not the first global cause that has required that kind of vision.  Though the numbers are incredible, a disease that has killed 100 people is just as worthy of our collective efforts as one that affects 40 million.  The world has been through wars, famines, ice ages, pestilence and diseases that have spanned the creation of this planet.  It is cyclical.  We don't have the power to stop that.  What we do have the power to do is believe that this will not always be the way it is.  That people, things can change; and do change.

A lot has been posted on here about the current state of healthcare.  It's not going to always be this way, good or bad.  The world has seen the rise and fall of Marxism, Communism, Feudalism, Capitalism.  It has followed the teachings of a reclusive monk, military powers and a carpenter who is said to have died and been resurrected.  Things change.

But what hasn't changed...(and I know this sounds corny) is the human spirit.  Hope. Faith. Optimism for the future, that life, some how, will go on; and not just go on, but will be better. That hope is what has gotten societies through some of the worst times in history.  And not just the hard times, but the day-to-day times.  If we allow ourselves to give in to complete cynicism and dread, then we have already lost what it is that we are fighting for.

HIV was not a concern of mine in 1995.  For many of you, I believe it was.  I can not begin to imagine what life must have been like in that moment of time for you.  AIDS had claimed millions of lives and showed no sign of slowing.  New cases everyday, and a society that was fearful and apathetic to those who were suffering from it.  "I don't know what he/she has," "I'm not catching that!"  Then something happened in 1996 that no one could have expected.  A drug that suppresses the virus was introduced.  The "miracle" that many, at that time, would have never said could happen, did.  Was it a perfect miracle? No.  Are there problems? Yes.  Are there issues that need to be overcame? Yes. But I don't know how one can look at that advancement in treatment without maintaining hope.  Yes, the damn virus adapts to it.  Yes, there is no long term studies about side-effects, etc.  BUT THERE ARE PEOPLE STILL ON THIS PLANET WHO WOULD NOT HAVE BEEN ON THIS PLANET IF HAART (NO MATTER HOW IMPERFECT) WOULD NOT HAVE BEEN DEVELOPED AND REFINED. And that, to me, is cause for joy.

Not only that, but the public discourse about HIV/AIDS, though not rosy, is not the same as it used to be.  People aren't afraid of those with HIV because they fear that they will contract it (at least the general public. There are still those pockets of society where HIV and Flu are synonymous), there are other issues people think about.  Can this person perform their job if we hire them with HIV?  If I get in to a relationship with this person can we have kids?  What about sex?  Though it hurts to be thought of in this light--as a person with a disease--could those of you in the 80s have imagined that the discourse on this would progress from discussions of quarantining the infected to what does LIFE mean with this disease.  That, to me, is progress.  Are they silly questions?  Of course.  Of course, I can perform my job, just as well as someone without the disease.  Of course, I can have children.  Of course, we can have fantastic sex.  But it shouldn't be taken for granted that we are in a society where these questions are asked in all seriousness.

And hopefully these questions one day will go the way of the dinosaur as those of us who are living with this disease show the world what is possible.  WE CAN LIVE. But we can only do that if WE believe these things to be possible.  And if we don't have faith in belief, and hope in the future, we have nothing.

So I urge all of the "newbies" to listen to those who have been interfacing with the ramifications of this disease, both on the health front and in the social front, and to take that knowledge to heart.  With the utmost in respect, I say that they have laid their lives on the line so that we all may live. But never let someone make you loose your hope that your life will be/get better.  It is the tragic life that is lived in hopelessness.

And to those who have been living with this disease longer than we have, don't destroy the foundation that you have laid for us.  You have fought so that we would have hope for a better future.  That our heads would be held high.  That we would not be ashamed of what we are carrying inside of us.  That one day a miracle could happen, whether through act of God or hard work on behalf of science.

WE KNOW THAT THE WAY IT IS NOW NEEDS TO BE IMPROVED. But we are not willing to be "foolish" enough to let the current state of the world cripple our hopes and desires for the future. That's not the way to live.
 Cynicism is not the only catalyst for change.  Hope and Faith can be just as powerful (and feels a hell of a lot better day-to-day)

[Cliff]

LOL.  I like your spunk!

Cynicism is not the only catalyst for change.  Hope and Faith can be just as powerful (and feels a hell of a lot better day-to-day)

True.  Some prefer doom and gloom, others prefer hope.  There's room enough for both.

Everyone has something to contribute, regardless of how long or how short our HIV disease has been.

Cliff

[Andy Velez]

Rock on!, B99, rock on!

Cheers,

[RAB]

99:

A lot of thought, time, and respect has obviously gone into your post.  I know you didn't write it to gain praise, but I think it's important you know how I perceived it. 

No sir, you are by no means a "FOOL".

RAB

[Moffie65]

My Dear B99,

Thank you for such a heartfelt gift this morning.  I thank you from the bottom of my heart!

You covered it all, and did it with clarity and with conviction, and I for one, honor that kind of gift.  I would like you to take one thing from me and use it at your best opportunity.  Being a "fool" is not always a bad thing, because we live in a society where the "fool" does have a load of leeway for behavior, and in my activism, I have never forgotten this tool/tactic.  Maybe this is your lesson from the obviously disturbing comment that someone made concerning you.  Please don't take it to heart, or personally, as one of the many things you will be exposed to in your journey, is the assumption that somehow having HIV equates to being Mentally Challenged.  Now we all know the answer to that one.    Playing the fool is a wonderful talent, which can sometimes lead people who are uninformed to start using their brains to think about some of their assumptions. 

Welcome to this wonderous pathway and life!  It can be a whale of a good time if you create it!

In Love and Thanks for "Spirit"

[gerry]

B99:

You are certainly no fool.  I encourage you to continue expressing your opinions, dissenting or otherwise, without feeling like you have to watch yourself when you do.  I think this is an asset to these forums.  And you don't have to feel like you have to defend yourself.  You did not disrespect enyone with your post, either here or in the other thread.  In fact, you have shown remarkably high regard for others with your thoughtful posts.  Like Cliff said, there is enough room here for diversity.  So I say carry on.

Gerry

[allanq]

B99,

Thank you for an eloquent post.

Your message about hope had special meaning for me. After I received my HIV diagnosis in 1988, a very close friend took it on himself to comfort me by reminding me of my "death sentence." Those are the exact words he used. Maybe he thought he was telling me that he knew how I felt. Whatever his intentions were, after hearing this a few times, I told him to stop. Evidently it didn't register; his behavior did not change.  I eventually dropped him as a friend and told him why. Doing that helped me as much as any drug I've taken since.

Allan

[jack]

who is labeling you a "fool"? 
I dont know anyone who doesnt have faith and hope that they will get better, but sometimes when you are nauseated 24/7 or crapping in your slacks its hard to see the purpose in it all, but there is always a chance tomorrow is gonna be better and it may be the day everything changes.

[J.R.E.]

Hello B99,

Totally excellant post !!!  Very powerful and honest. THANKYOU Even in my crapiest days, and living with this virus going on 21 years now, I have never given up hope !



The Best----Ray

[B99]

That I understand.  I haven't been to the depths of what living with this disease has been like.  And thankfully, from those who took these drugs before me, there are some conditions that a) I won't have to deal with (hopefully) and b) I know what to expect.  I don't know what it's like to feel sick 24/7.  As a matter of fact being sick is what worries me most.  There are tons of virmine in our systems that we live with year in and year out.  But we know that HIV, if left untreated, for the 99.9% of us that are not elite progressors, will make us sick.

I hope that when I start my meds that I won't be ill.  I hope for all of those in HIV therapy that this will be the case as we move forward in research.  My mood does shift.  I'm sure when that day comes when I am on the toilet for what might seem like days at a time I will feel hopelessness that has no end.  But I HOPE and BELIEVE that there will be someone out there who will help me not to give in. And I'm sure there will be.

[anniebc]

That was an amazing post..thank you so much...I for one will never give up hope..I have too much to live for.

Hugs
Jan

[AlanBama]

A very good post, B99, and you are certainly nobody's fool.  It's not foolish or naive to have hope.   Hope has sustained me for almost 20 years with HIV.
I have to hope for a better tomorrow.    I do get 'bogged down' in the reality that is my life with AIDS sometimes, and I'm only human, I sometimes let the problems overwhelm me and dim that vision of hope.    But then, I will read something that inspires me, or someone will say something wonderful or do something kind for me, and BAM! that hope comes shining through.

Alan

[joeniceguy2005]

wow,such cool posts,keep on bloggin boys!

[Robert]

"Nobody ever said it would be easy."  That's what my father always told me.  But he always said it with hope and love and that's what keeps me going. 

You're right.  The dark side can only take you so far.

Thanks for the boost.  It feels good.

robert

[Sdgirl]

Dayum!  That was AWESOME!  You totally rocked it out.............

Lisa

[Lisa]

            I am in awe of your message.

        Thank you from the depths of my heart. 
                I must meet you some day.

[Oceanbeach]

Dear B99,

When I am in doubt on the status of future care and treatment or funding for such, as I usually am... This is what I do because all proposed funding issues are currently "legislative language" and someone has to get the word out to the House and Senate office buildings and it won't be the Planning Counsils because they are funded by fereral dollars (RWCA), it won't be the ASO because reform in funding is not part of their continum of services,  it won't be the healthcare organizations because they are primarily funded by federal dollars (RWCA).  You can not use government monies to lobby the government and those public employees can not make public statements on policy.

Who then shall contact the voting members of the Senate Budget Committee, the Senate Committee on Health, Education, Labor and Pensions, the House Ways and Means committee and the Sub-Committee on Health?  Those member rosters are the real decision makers in the future of HIV funding treatment and care, how will they know if you don't tell them what your needs will be in 1 to 5 years?  I am not a fool, I wrote, designed and paid for this site www.Commission-on-AIDS.org.  I have AIDS for just over 10 years and can not work for a living.  I am being heard and on a good week 1700 people listen.  Have the best day
Michael 

[allopathicholistic]

After I received my HIV diagnosis in 1988, a very close friend took it on himself to comfort me by reminding me of my "death sentence." Those are the exact words he used. Maybe he thought he was telling me that he knew how I felt. Whatever his intentions were, after hearing this a few times, I told him to stop. Evidently it didn't register; his behavior did not change.  I eventually dropped him as a friend and told him why. Doing that helped me as much as any drug I've taken since.

so glad you dropped this phony "friend" ... you should call him and say guess what MoFo I'M STILL ALIVE AND KICKING so your "death sentence" kan kiss my ASS!! and then say "and we all have a death sentence moron, it's called mortality!!! DUH!" i hate phony people who patronize. emotional sadists i call them! as thomas says OUT OF MY LIFE!!!!!!!!

[david25luvit]

Truly a message of hope and determination.  And NO!  I don't think anybody would call you a fool, my good man.  Personally I have only been positive for a little over four years however since the scourge began back in the seventies HIV has impacted my life as I watched friends and lovers become sick and then die.  David's death was by far the most devastating for me and he was quite right when he and I first met and he told me that I couldn't truly appreciate the impact unless I actually had the virus.  And he was right.

I'd like to think that you represent the next generation of men & women with HIV.  That your optimism and your determination will help guide us into a new age of understanding and tolerance.  Some of us are so cynical or so depressed that we battle daily to maintain some sense of hope.  I believe no matter how long a person's been positive or what they've been thru...we all have something new to learn.  You are an inspiration and I thank you for your words of hope and faith.