The Number Game

Numbers

It seems that the first day I was diagnosed my life suddenly became consumed with numbers. It was like an introduction of numbers that equation equal fear, stigma and my own belief that I was no longer a human but someone ruled by sets of numbers.

It started with me checking my weight everyday. I was diagnosed in 1986 and at that time the belief was that you could tell if someone had HIV based on how thin they were. It didn't help that I was thin to begin with yet everyday I stepped on the scale to see what numbers it was going to give me. I recorded the numbers and was elated when they rose and scared when I lost several pounds. This was an everyday event that never occurred to me that I was stressing myself out. So of course on those days of anxiety the numbers were lower. I quickly learned that the scale could one day be my friend and the next, my enemy.  

My number crunching continued when I learned about t-cells and the importance of what they meant to someone who was HIV. Before I was exposed I could care less and actually didn’t know about t-cells but now I was checking them regularly. Like the scale they were never consistent as they dropped and rose taking me on a roller coaster that I felt I could never get off. It got to the point that I told my doctor on my visits I didn't want to know my t-cell numbers as like the scale, it was sending my anxiety through the roof.

Can we talk about pills? Now that’s where the number crunching really begins. Take two of the blue pill in the morning but only one at night and if you take the white pill make sure this many minutes has passed. Also remember before taking this number of set pills make sure to take them all at the same time of the day, which of course meant always being mindful of the numbers on the clock. And of course remember you can only miss a certain number of days taking your meds.

Even dispensing them were a game of numbers as you count each pill bottle and especially for long-term survivors, seeing how the number of bottles in you medicine cabinet take up real estate along with the other bottles for other ailments that doesn’t directly involve or may assist in the side effects of your HIV. Pretty soon your cabinet starts to look like you can give your local drugstore competition as it starts to resemble a Duane Reade or Walgreen’s drug aisle.

The number game continued…

30 days before my next appointment..

Under 50 is the goal so I remain undetectable..

560 is my current t-cell…

Fewer than 200 is the number that means I have AIDS…

8 times I’ve went to the bathroom today because of side effects

1 hour I get to nap and don’t think about it…

3 bumps that wasn’t there yesterday…

5 days and the doctor still hasn’t returned my calls

The hardest numbers were the count of people that I knew who had passed away from the disease. It seemed that the number of funerals was becoming a number I wanted to forget and deep inside I wondered when my number was going to be up.

Then like I did with the scale I had to tell myself, you’re lucky you’re still here to count the numbers of days you've been on this earth and instead of counting all the negatives how about counting the blessings.

Next month this time I’ll be 44 and the greatest set of numbers I’m now focused on are the ones that I can say, thank God for getting me get this far and to realize that my days are not numbered but instead are bountiful.

It’s what I do with that bounty that determines the joy in my life. I can continue to crunch numbers that I have no control over or I can live my life with one number in my mind. That number is one and knowing that it’s the number of lives I have to live and with the blessing of God I know it’s going to be a long set of numbers before I leave this earth. I don’t know that for sure but I like to think my glass is full.

That’s something I can count on.

The Words of HIV

The words of HIV

I want to start off with a short story of the power of words and tie it into HIV.

It began for me many years ago when I worked as a counselor with homeless women and their children. They lived in a program where they received temporary to permanent housing until they got on their feet. Although I had contact with the women I mostly worked with the kids.

Just to give you a picture of the people I worked with, these were women who had chemical issues, went though abusive relationships and because of their circumstances found themselves on the street with their kids.

You can’t believe the story the kids had as they watched their mother being beaten by husband/boyfriends/dealers. You saw in their eyes that they were no longer children but that they were young adults with adult eyes.

As a counselor I also ran an educational component called Kids Café, where the kids learned to fix meals, have responsibilities setting up in the dining room and finally eating at the table together, a bonding experience that even us grown-ups have lost the ability to do.

Coming from a rough background these kids were a handful. Cursing, disrespecting each others and sometimes adults and basically having no manners. Yet I seemed to have a good rapport with them as they probably saw a man who despite how they acted, still showed love. Who didn’t raise his fist or voice in anger. I had a good rapport with everyone except for this young girl. No one could stand her. Even I had to hide my discontent as she did whatever she wanted whenever she wanted and she was only 9.

She was also always the loudest of the bunch. Her younger brothers were angels compared to her. She was raised in the roughest part of Chicago and you could tell. And when she put her hands on her hips you knew she was about to give several pieces of her mind.

So after thinking of many strategies of getting along with her I decided to do something different. I decided that with the Kids Café I would put her in a leadership role. Basically on that day whenever a child listened to the adults she would give them some candy. I was first concerned she was going to just keep the candy herself, but having responsibility seemed to make her shine.

At the end of the day when all the kids were preparing to go home, I went to her and told her my exact words, “you’re a good person.” She surprised me when she gave me a hug. It was the last thing I expected. And she could have kept the rest of the candy for herself but she made sure I got it back.

I eventfully left the job and went to another role as an in-home therapist. In the facility was also an in-house therapeutic department for kids with behavioral issues. It had been five years since I worked at the homeless program. I say this because as I was walking down the halls of where I was currently working I heard a girl’s voice, “I remember you.” The next thing you know I’m getting this huge hug around my waist. I then see it’s the young girl who I worked with at the Kids Café. Her next words blew me away. She said, “You told me I was a good person” and she said it as if it was something that she held on to, like a worn teddy bear.

I wondered how could she remember something that I threw out so casual but then I recognized that she was probably raised in an environment where she was never showered with kindness. Without knowing it I had given her a gift and here she was five years later sharing that gift back with me in the form of a hug.

I used to think words were meaningless but she showed the value that words can have.

“You told me I was a good person”

And in the five years I saw her she was probably never told that again. So she held on to the words I gave her as if it was gold.

What does this have to do with HIV? Actually nothing. Living with it and hearing about it, and seeing it in ads you sometimes just want to forget about HIV and simply remember the other parts of your life.

So today I’m putting my HIV in the backseat and letting the other parts of my life shine through.

And like my young friend remembering that I myself am a good person.   

The two most powerful people you will meet

In my early days of seeking treatment for my HIV, one of the reasons why I never followed through with my doctor appointments was because I hated to wait in the waiting room. I say this because most clinics have one HIV specialist and he/she may only see patients on a particular day. For me it was a Tuesday. So you knew when you went for your appointment, that most of the people waiting were there was because of your HIV status. It was like a scarlet letter was placed on you as you didn't have to tell you business but just by you being in that room on that day, everyone in that room knew your business.

Stigma is mentioned a lot and it can happen in medical spaces, in fact it happens a lot without the staff aware they're doing it.

I once had a situation where during the week this particular clinic serviced 'regular people' on any other days, except for Tuesday which again was the day the HIV day. When you're dealing with stigma it's hard especially if you're newly diagnosed or visiting a new clinic for the first time, you already have this fear of walking into the unknown.

In some cases even before you see the doctor you have to past the most two powerful people in the organization and based on their understanding and recognition of stigma, you may be left with a bad encounter and decide you never want to see the doctor.

The two positions of power I speak of are the security guard and the receptionist desk.

I was in a case where the security guard knew that it was HIV day and based on his coldness and abruptness you knew he didn't want to interact with 'those' people. So you try to make it past the person without any incidents, someone who because of the uniform they wear, and probably this is the only moment they have power in their lives, decides to make it difficult to pass by asking for ID or making you state why you're there, forcing you to disclose.

You then make it to the receptionist desk. For some they may have only good stories, but others may experience the same coldness that greeted them at the door and the devalue of self-based on the way the person at the desk determines your worth and if they're ready to deal with you.

I had one experience where I finally blew up. It was a situation where I knew that the receptionists were cold and after awhile you build up this thick skin, but then you realize you can only take so much. I had episodes where I was spoken to like a child and told to almost basically sit in the corner until she was ready for me. Or a case where very loudly they asked why I was there and literally told everyone in the waiting room why I was there.

I think I finally had it when I was quietly waiting at the desk waiting for the receptionist to finish the phone call with her friend as they were trying to decide what to do for the weekend. After ten minutes of waiting and no acknowledgment, all the past episodes I endured came rushing out and I snapped. I banged my hand on the desk and told her not only had I been waiting but I wanted to see her supervisor. It's amazing how nice people get when you ask to see their supervisor.

But the episode made me think of those who are scared and hesitant to begin with. Those who don't have advocacy skills and the knowledge of reporting bad behavior. For those people episodes like that may add to their already sense of self-worth which may be already low based on the fact they have the virus. Some may take the unprofessional experience in silence, some may be like me and make noise and then there are those who just give up and don't seek the treatment that they need based on the gatekeepers.

I implore people to speak up. A place of health should be there to make you healthier, not sicker and if you have to make some noise, then make some noise. But by allowing stigma type behavior to happen you not only cheat yourself out of a much needed doctor visit, you're also not getting the health check-up from your doctor who may be unaware of what's going on out front. Making noise serves not only you but also someone who may encounter the same ignorance.

Take the power back and give it to yourself and your health and to others! 

Gray Ceilings

Gray ceilings

The ceiling was gray. I remember that much as I lay on the bed looking up. It wasn't a dark gray but something like a dull chalkboard type of gray. I stared at it as the sun danced on it and in the air, little pieces of dust floated in the light, dancing in the moment. Outside I could hear the laughter of kids. I made out the deep laughter of my brother and the giggling of my sister and the others I couldn't quite make out. If I could I would have walked to the window and looked out to see who was having so much fun without me. But I was trapped. I was stuck doing what was told to me as being my job. I couldn't move from the bed until he was done doing what he wanted to do to me.

I was only 7.

He was a cousin who was much older than me and we would always be over his house as our mother left us there as she went to work. She couldn't understand why I would cry when she dropped us off or sometimes why I would refuse to get out the car. But then she'd give me the mother look that said"If I have to drag you out, I'm going to make you really cry." And out I would go.

Sometimes I was lucky as I would run off with my siblings and get in a few rounds of hide and seek or hopscotch, but it would eventually happen. He would appear and I knew I had to go to work.

The hardness of the concrete ground would be quickly replaced by the lumpy hard mattress. And there I would be, back looking at the gray ceiling. Each time looking up I would notice new things. For instance I didn't know if they knew there was a crack forming. I should have also let them know that small pieces of paint were starting to peel away. Maybe that would have the right thing to do. I told myself that as long as I focused on the gray ceiling I wouldn't have to be in the world that I was in. That by looking at the gray ceiling I could pretend the crack was a railroad track and soon a train would be riding along with smoke coming from the front car and a red caboose following it and maybe there was room for me on that train.

On rainy days it was hard to see the crack and the gray ceiling was black. Those were the times I just closed my eyes and imagined I was somewhere else. Anywhere else but here.

It lasted for a year.

I never told anyone. He never threatened me or said he would kill my family. I just didn't know how to tell. I figured it was too late that by letting it happen for so long they would think I asked for it and therefore I must have liked it. So it became my secret.

I think the gray ceiling also stole my innocence as I noticed growing up that I would say sexual things that only adults said. I would do things adults did, my actions becoming sexual. I wasn't acting like the young boy I was supposed to be.

I thought to myself maybe I did ask for it as I started to look at other men and wonder if they wanted me to look at their gray ceilings. In high school it was worse. I pretended I knew all about sex. If there was anything you needed to know I knew it. Even my clothes changed. They were once loose but started to form a tightness around me. As if I was putting myself on display.

I still never told anyone, not until I was in my late twenties.

The wall I had built around my private secret started to develop cracks just like the gray ceiling. I tried to patch it up but each time I'd think I patched one crack another crack would form getting bigger and bigger and soon they came tumbling down and the memories that I thought I buried, there they were playing for me like a movie.

I started to remember everything. It was like a flood as everything came crashing in, each detail, each sound, and each silent prayers of please God let this be over and most of all his face. I started to remember his face. At that moment the childhood that escaped me came back as I found the deepest corner and in a huddled cried. Tears I denied myself to run free when I was younger.

And then it made sense why I was angry. Why I didn't let people hug me or touch me. Why I didn't let them get close. Why I couldn't look at my own reflection in the mirror. I wasn't blind anymore.

As horrible as the experience I went through as a child I did receive one gift from the experience. I received the gift of forgiveness. I showered myself first with this gift and had to make peace with the fact that I didn't do anything wrong and that I was a victim therefore should no longer walk with shame as my shadow.

And with the help of God I gave the gift of forgiveness to my offender. I had to because without doing this I would never grow. I would be forever in a place of gray. I would be stuck. And once I forgave I started to see colors again. There were no more gray ceilings.

I discovered for me to get to my true place I had to make peace with the past.

I now dream in color.

Today is National Black HIV/AIDS Awareness Day

Today is National Black HIV/AIDS Awareness Day. It’s a day to bring continued attention to the disease that is rising dramatically in black communities. It’s a two-fold event. It’s a day for African-Americans and those of African descent, no matter what your sexuality is; gay, straight or bi to take your head out of the sand and find out what your status is.

Already there are those who are in a relationship and feel that the day doesn’t apply to them, but in reality unless you know every single action of your partner, then you should be tested. People sometimes feel that since he/she comes home at the same time everyday, he/she’s being faithful. I hate to burst your bubble but just take a look at the website Craigslist.org and look at how many married people are looking for a discreet lunchtime encounter.

But this day can also be one of a frank communication between two parties and a commitment to both get tested together without any accusation or suspensions. Often the idea of introducing a condom into an already establish relationship brings up issues of mistrust. But no matter how much you love someone, you still have to take responsibility for your own health and not leave it in any other hands.

The second part of the day is to acknowledge and pay respect to those who are living with the disease and those who are affected by the disease. We have so many walking around unaware of their status and still having unprotected sex. Some areas of the black communities are exceeding parts of Africa when it comes to HIV/AIDS rates. Grandparents are now raising their grandchild.

Often times we want to focus on the thousand conspiracy theories of how HIV was introduced into the black community, but we don’t want to look at he the one ac that will protect ourselves from the virus. I hate to tell you but the train has already left the station. How HIV got here doesn’t matter now. What matters is that it’s here and how do we stop its rising infection rates.

Lastly there are those who ask why have a day that focuses on only one segment of an ethnic group and isn’t it another form of division.

The answer is no. The CDC numbers speak for themselves that African-Americans are heavily affected by this disease. Why? Factor in access to unbalanced health care, poverty, stigmatization from community, home and church and racism, underlining factors often not discussed, and the answer is clear. Also to be frank if we’re looking at the gay community in general, now that rates are decreased in their group, they’ve now moved on to other issues such as gay marriage and taken the position that the disease doesn’t apply to me.

If we look at the worth that is placed on a black person’s life, adding in self-esteem so low they have to reach up just to touch bottom, the message of prevention gets lost. And if we look at poverty, the sad truth is that getting HIV is not high on the list, especially when it’s topped by-am I going to afford my rent this month, will I be able to have money for food, are my lights going to be shut off this month, will I finally find a job in this economy?. Those barriers unfortunately make HIV last as a priority.

And I don’t want to let those who are 50 and over off the hook as rates are rising in that age range as they may feel because of their age they have nothing to worry about. The truth is this type of complacency is why rates are rising. I’ll admit your faces are not on the prevention posters, as its usually young men in their twenties, but the truth of the matter is that the disease does not discriminate based on age.

Wouldn’t you want to know and treat something before it has done its damage? And if not for you then at least by getting tested you and your partner/wife/husband will know

But don’t let the day pass without thinking of the impact of HIV/AIDS on our community and our lives.     

Disclosure

I think one of the most difficult thing to do for someone who's HIV positive is when to disclose your status, especially when you meet someone who has the qualities you see that can lead into a relationship. Some may see it as being deceitful by not disclosing early on, but it's not that simple.
Part of the problem is the continued stigma that exists around HIV. For instance isn't it amazing how everyone on Adam4Adam is negative in their profile? They know as that they are less desirable or have no value if they placed their true status. That’s how stigma works, it makes you feel devalued and you feel like 'one of them'.
I have to admit i can't lump everyone in the same bowel as there are now some HIV negative men who are educated and aware of HIV and still it doesn't deter them from seeking a relationship with someone positive, but they don't walk around with a sign around their neck saying, "I understand". So we don't know who and where they are.
For me my reason of not disclosing was the fear of rejection. I was afraid that once I told you my status then that would be the end of any relationship, even if it was a friendship. In fact it did happen to me several times when I told two individuals who were interested in me that I was positive.
Immediately I was placed on the "Do Not Call Registry" and left with the feeling of feeling dirty asking myself was it worth it to be honest.
When is it the right time?
It's tricky because along with the rejection you're then faced with having someone knowing your health status and not knowing are they going to share it with their friends on Facebook or what in general will they do with it. So you weigh it. Do I show you my luggage on the first date or maybe the second when we don't really know each other or do I share it after we have meet a couple of times and you ended the night by giving me an unexpected peck on the lips.
The demonetization of someone having HIV still exist and for some they put on their blinders and figure as long as I'm safe I don't have to tell you anything.
Admittedly that's what I chose to do. If I knew it was going to be a one night stand, I would play safe but keep my information quiet. It worked for me for awhile until I met my current partner who is negative.
We started off as a booty call but then there was something magic that was happening. I dismissed it but still unlike others he was just in my mind. To the point of me behaving like a school age child and daydreaming a life together and before you know it I've written down my name and his and wrapped it in a heart.
Yet I was afraid because how was I going to let him know that I was positive without him freaking out. In my fear I remained silent and told myself as long as we practiced safe sex then there was no need to turn back the clock. But then we moved to the level of boyfriend. Now what was I going to do? Even worse after a few months had passed he suggested we move in together. I was getting deeper and deeper into my hole.
How was I going to move in with him and explain the prescription bottles in the medicine cabinet? How was I going to explain the one med that needed to be in the fridge? How was I going to explain taking my 'vitamins' everyday at the same time from bottles where the labels were missing? How was i going to continue living a lie?
I eventually told the truth after being in a relationship with him for two years. I figured by then he would know the kind of person i was and know I was not trying to be dishonest but was afraid. Telling him, I was not ready for his reaction. He simply told me, "It doesn't change the way I feel about you". Twelve years later the feeling is still the same. That's another funny thing about stigma, it's a two way street. We receive stigma so we stigmatize others. It's a vicious circle. I just assumed he wouldn't want to be with me.
Not everyone has my happy ending and I wish they did. I wish people were more understanding and accepting like my partner.
Just because you have HIV doesn't mean you don't want to have someone special in your life. I feel everyone should have somebody, and not just for the sex but to share the world with. I learned that sometimes we have to take that chance and jump in the water and open ourselves. Yes you may get hurt but you may also find someone who has unconditional love for you. The lie can become greater than the disease and if someone doesn't want you for who you are then really they're not worthy of the love you have to offer.
Never forget your worth!   

Murder in Uganda

Recently in Uganda a man was killed simply because he was gay. His name was David Kato. According to the New York Times, " As the most outspoken gay rights advocate in Uganda, a country where homophobia is so severe that Parliament is considering a bill to execute gay people, Mr. Kato had received a stream of death threats, his friends said. A few months ago, a Ugandan newspaper ran an antigay diatribe with Mr. Kato’s picture on the front page under a banner urging, “Hang Them.”
On Wednesday afternoon, Mr. Kato was beaten to death with a hammer in his rough-and-tumble neighborhood. Police officials were quick to chalk up the motive to robbery, but members of the small and increasingly besieged gay community in Uganda suspect otherwise.
The reaction around the world has been immediate with planned declarations against the murder, planned vigils and marches denouncing the homophobia and articles giving the public a view on who David Kato was.
Until last week I never knew Mr. Kato and it's sad that it takes a murder for someone to be visible. It's also sad that it takes a murder for us to be reminded about the open season on gays that live in other countries like Africa and places like the Caribbean. I realize that gays are murdered all over the world but in the places just mentioned, the difference from the United States is that the killing of gays are almost if not entirely endorsed by the government.
Just imagine the reaction we would have if our government gave the impression that it's okay to kill gays. Imagine if there was a hit list on cover of the New York Times or the Chicago Tribune that provided names of people who are gay and should be killed. We wouldn't sit back in silence. we would be making some noise. So why haven't we been making no noise until now. Is it because it's another country and not in our backyard? Is it because we see them as the others and therefore people who look like them should take action?
Situations like this unfortunately make us look at our own progress in gay rights. Still talking about America, although we have not reached the promised land of equality, we still have made some milestones. We have gay establishments, gay marches in cities that once frowned down on them, characters on television and the movies and in some places the freedom to express our sexuality in public. Just last week in Harlem I saw two men walk arm in arm and no dirty looks were given. That's called progress.
I hope Mr. Kato's death is not in vain. I hope that after the gathering and marches we not only don't forget about David but while we are in that space of organizing that we start helping our brothers and sisters in countries where it's legal to kill LGBT, no matter what color they are.
I don't want to say that the gay marriage issue are not important but to me a human life is more important than being able to say "I do."
But the truth is that in several months David Kato will be forgotten and the urgency that is now in place will dissipate. And agencies that are addressing the issue such as the International Gay and Lesbian Human Rights Commission will not have the support from leaders and community as it has now become yesterday's news.
We have to stop the reaction and start taking action. We have to make sure there are no more David Kato's stories to mourn. We have to stop looking for leaders and instead become leaders of what's going on in places like Africa. We have to understand that the stigma doesn't just stop at the shores of Africa but also makes it way here to America with our growing immigrant communities.
Most importantly we have to remember that David's murder is a continuation of our murder and that our silence is the ammunition for it to continue. Let's make some noise that will be heard next year and the year after until governments in other countries recognize that we don't want anything more than the right to be treated as human.