The Body: The Complete HIV/AIDS Resource
Follow Us Follow Us on Facebook Follow Us on Twitter Download Our App 
Professionals >> Visit The Body PROThe Body en Espanol
For World AIDS Day, read about stigma, criminalization and more >>
  • Email Email
  • Printable Single-Page Print-Friendly
  • Glossary Glossary

Readers' Forum

April 2001

How Do We Keep Going?

My name is Lulu. I live in a box. Actually, two and a half boxes, inside a bigger box that sits on a concrete slab on an island called Manhattan. There are people above, below and on all sides that live in their own boxes. You'd think I'd have lots of friends, but the fact is I am totally by myself all the time. Even when I'm standing in the elevator and it's filled with people, I am quite alone, like Siberia, or maybe the Moon. I think I must be on my own planet -- like The Little Prince. I look very much like a normal, attractive woman -- nobody even suspects that I am really an extraterrestrial. If those people had any idea what's really growing inside me, they'd run away screaming with disgust and horror. You see, there's an alien that came in through my back door one day over 20 years ago when I wasn't paying attention. It started out real small, a tiny single celled amoeba, but it began to grow and divide, and it grew and divided for years and years. It's still invisible, still so small, yet it's big enough to make grown men shake with fear. Since you are reading this particular magazine, I'll assume that you know the name of this beast. You may actually even be on intimate terms with it, this 666 that eats people from the inside out.

The fact that I do look so ordinary is, or should be, what's so scary to the men that size me up, on the elevator, in the street, or even in the park. Those poor, unsuspecting suckers who might invite me out for dinner, never knowing or suspecting that next to them sits Typhoid Mary. That's what I feel like -- think about it -- if I were to let one of those guys kiss me, such an innocent, innocent thing, I could be found guilty of attempted murder. I think the prevailing attitude could be nicely summed up by something I heard that cops like to say "You can shoot me or you can stab me but just don't bleed on me."

It is a terrible thing to die from AIDS, but it's also sometimes even harder to live with it. I've lived with it for 22 years, and I've been waiting since my "official" diagnosis in 1987 for the other shoe to drop. So if you're thinking that AIDS is a death sentence, think again -- I'm here to tell you that I wait and I wait for something horrible to happen and it never does. I feel so good physically that it's hard to believe that there are billions of killer cells attacking me 24/7. So what am I supposed to do? I tried being up-front but I lost every friend I had. Other people, normal people can't deal with it, it's just too horrible. So how do we go on? It's so hard to have self-confidence, to love oneself, to be a good person, to feel hopeful -- and that's if you're "normal." How do we keep going when all future hope is destroyed by a simple blood test? One day you're part of the human race, and the next you're an outlaw, just like that.

I have this fantasy that I think about whenever I get scared, or feel lonely and sad: that somewhere out there is my other half, some wonderful guy who maybe shared a needle once as a teenager, or maybe a nice bisexual, someone like me, a fellow leper who is really just a normal man who happens to have this skeleton in his closet too. There are supposedly millions of people infected, with new cases every hour on the hour. So why do I feel so totally alone? Where is everybody? How will we ever find each other? I wish someone would show me the way to that island that Bush will probably deport us all to. I'm packed and ready to go. I'm tired of normal people, with their condescending, superior attitudes, I want to be with my own kind, finally. Ultimately that's my fondest desire, but I don't know where you are -- I think you're probably hiding, like me, like HIV, lurking in the shadows, heads hung in shame and defeat. Well, fuck that, and fuck them, there's strength in numbers -- so please stand and be counted so I'll know where to find you.

-- by Lulu


The Biggest Risk Factor: Lack of Education

The progress of HIV/AIDS has come to a standstill in the passing years. The reasons are many, and so many are to blame. Why place blame on a higher power when we ourselves are acting as though this disease is now under control due to the newest and latest medication on the market?

There are so many factors that put us at risk and the biggest of all is lack of education. How can we preach to others what we ourselves don't want to understand? So is it our fault that there are 42 million people infected with this virus? Is it our fault that women and their children are now affected in the highest numbers? Or that Africa and all Third World countries are losing a majority of their population? Who is to blame? Education is here. It has been enforced. Are people listening? That is the question. So I guess that it has much to do with what is most important to this generation that we seem to be living in. This is the 21st century coming in, what does this all mean for us, the infected? I hope a wave of good adventures; if not, we will be FORCED once again to stop placing things such as AIDS on the back burner and bring it to the forefront where it belongs.

This virus/disease is far from OVER, so it is time for the PUBLIC to open their eyes and keep in mind that this could be you or someone you love dearly.

-- by Susie Q.

Back to the April 2001 Issue of Body Positive Magazine.

  • Email Email
  • Printable Single-Page Print-Friendly
  • Glossary Glossary

This article was provided by Body Positive. It is a part of the publication Body Positive.
See Also
More Personal Accounts of Women With HIV/AIDS