So I saw this today on my Twitter feed after I was tagged on this post (I didn’t know you could tag on Tweets now) and I’m guessing they wanted me to answer the question.
Well, the truth is, I have so many answers for this question. It’s not a simple one or two sentence answer that I can just fit in 140 characters. I guess I’m supposed to try but I’m a writer and I’ve been living with the virus in public since 2008. There’s not one 140-character tweet that I can think of that will summarise all that I want to say.
But you know what? I’m going to try.
What do I want people to know about me, as a person living with HIV?
I want people to know I’m okay. I found out (not early) but in time. With the help of family and friends, I got through the worst parts. (137 characters)
Being HIV positive doesn’t define me. It is an important aspect of who I am but it isn’t everything that I am. I am so much more than that. (139 characters)
I’ve accepted what has happened to me. I’m okay to talk about it. I wish we all talk about HIV and taking care of ourselves more often. (135 characters)
I’m comfortable with it. It’s okay to make jokes about it or to call me out on it. It’s a medical condition, that’s all it is. (126 characters)
Except when I’m really sick, like I am now, I’m actually working. I’m a pretty hard worker and PLHIV can be if you give them a chance. (134 characters)
I want people to know that I’m only okay because people have been kind and supportive. I want people to be that way for all PLHIV. (130 characters)
That’s it, really. That’s all I can think of saying. Six tweet-sized thoughts about what I would want people to know about me as a person living with HIV. I don’t know. I guess after talking about it constantly and in such a public avenue, you kind of run out of things to say, really.
And when you talk and talk and show up on television and the newspapers and on the radio (rarely), and you find out that the numbers are still growing and it is still getting worse and it’s a full-blown epidemic now and people still don’t seem to care and people still don’t want to use a condom and people still don’t want to get tested, sometimes you wonder if anyone is actually really listening.
And you kind of think about whether six Twitter-sized thought bubbles about what it’s like being HIV positive is going to make a difference.
I don’t know.
Here I am, though, in Bacolod, trying to save my kidneys and relieved that I don’t have to participate or do anything for World AIDS Day come December 1 because after seven World AIDS Day (including World AIDS Day 2008 when I became public about my HIV to the world), you kind of getting frustrated and you kind of question what it is you are doing and if it actually means anything to anyone.
Shit. I didn’t even realise I was going to go all stream-of-consciousness here and get personal and intimate with my feelings. I was just going to be whimsical and write down stuff to participate and I got all existential.
Sorry. Pardon me. But I’m posting this anyway.
What do I want people to know about me?
I’m just an ordinary person with a medical condition. I have hopes and dreams, just like everybody else. I get tired and frustrated too but I’m also tough and I’m no longer scared of needles and, now, of surgery and dialysis. I’m just an ordinary person who has received so much kindness and generosity and support and encouragement but I see that not everyone has been given the same treatment and I don’t know why and I want that to change.
I just want this world to be a better place; a place where people will take care of themselves and of each other. I want this world to be a place where people can be who they are without judgment and they will do what is right and necessary and logical to take care of themselves and of the people around them, even strangers.
I have been the recipient of so much goodness and I know that the world around me is not all sunshine and rainbows and birthday cake and I don’t know why I’ve been spared from all of that suffering and misery. I am not ungrateful. I am glad that I have not suffered as much as others.
It’s hard enough to have HIV, with all the physical and physiological restrictions that you have to watch out for, please don’t make it harder by adding emotional and spiritual layers of stress and struggle to the equation.
It’s a medical condition. It’s a virus. That’s all it is.
Can we not just treat it that way and leave all the morality talk to the issues that are based on morality?