Wednesday, March 30, 2011

Stigma


I just turned 44 years young and thanks to the magic of cocoa butter I think I look good for my age! I say this not to ask for gifts but to acknowledge that there was a time when I thought I would never see my life extending past the age of 30.
It all goes back to the beginning when i was first diagnosed. They year was 1986 and much was not known about the disease. When I say 1986 I'm not only talking about the year but how that year signifies how much has changed and was so different back then. In fact they didn't even call it HIV, it was called HTLV-III. Now try to say that fast! Anyway according to my local health clinic that's what I had.
With the images of that time of people being denied entry to schools and swimming pools, stigma was a worldwide phenomenon as people were fearful of something that was killing people. even for myself, when I got diagnosed I thought my time was soon as back then HIV equaled death, at least in my eyes.
At the time of my diagnoses I lived in a small efficiency or studio apartment. It was basically a space with one room, a little kitchen and a bathroom. After I was diagnosed I had a visitor come to my place. It was a health worker from the clinic and I was surprised to see her.
At that time there were not many cases of infections so her job was to go out to newly infected people homes and give them instructions on how to live with the disease. So here it is this stranger who already knows about my status telling me what I need to do. The part that stood out for me at that time was that her visit wasn't a psychological visit where she wanted to know how I was handling the news. Hers was more of an instructional visit. So she gave me tips on how to avoid giving others the virus and one of her instructions were to have me pull out my mop bucket and to proceed to pull out my bleach bottle.
She then showed me how to wash down my silverware and wipe the toilet seat after each use. Again being young and ignorant about the virus I'm listening to her and not challenging her as I had little information about the disease so to me her words were gospel.
I didn't know that I was seeing stigma in it's infancy form where the belief was that you could get HIV from simply having someone use the same silverware you use or drink from the same glass. Things have changed but not that much. There is still stigma but no longer do we have nurses coming to homes with bleach.
Yet people, despite the information of HIV which is even on the net, still have the crazy ideas of how you can get the virus. For instance you still hear stories of people being served dinner with paper plates or plastic silverware. Or people who will boil a glass before they drink out of it, knowing someone who was infected drank from it. I even recently  had a friend who was asking me if she was wrong for refusing to try out another friend's alcoholic drink because of his status.
Stigma is a bridge that leads to discrimination. It's a fear of the unknown that devalues those who are infected.
Stigma can also kill. It prevents people from going to get proper treatment as they don't want to see the doctor as they have to divulge personal information or feel they will be judged because they know that people are aware that the building that houses the clinic works with people who are HIV. Even the act of filling your prescription is difficult especially if it's a drug store you're not familiar with. You have a fear of judgment of not only the pharmacist but also the person at the register that rings up your meds. It’s not unusual that most people will not frequent either doctor services or get prescriptions filled in their own neighborhood and will travel miles away to other areas for services.
I say stigma kills because people feel like a pariah and won't even get themselves tested to see whether they even have the virus. It's usually when the disease has done so much damage do they find out and by that time it's to late for any medication to work.
Yet I have to acknowledge there are those who despite the stigmas live their lives as full as they can despite what people think. So not everyone with the virus walks around as a victim. Yet everyone experiences are different and so my story is different from your story and so on and so on.
I consider myself one of the ones who don't let stigma stop me from a full life as I refuse to live by others judgment. We're only on this earth once and it's too many people in the world for me to try to make fell safe. But again we're talking about someone who's lived with this for years so my knowledge comes from a transformation of educating myself and learning from others by hearing their stories. There's value in knowing that what you're experiencing is the same experience that others go through. There's even the added value of hearing how they overcame the barriers of stigma.
So what advice can you give someone newly infected or clueless of their status out of fear? Maybe hearing your voices will help them overcome the barrier that we call Stigma and united lift them up.
It's easy to condemn someone for not being where you are so what's your affirmation to help someone living in fear get to a place where fear no longer rules their lives. Anyone willing to share?      

Friday, March 25, 2011

Oreo

I remember the first time I met Joel. The first thing I noticed about him was he had this James Earl Jones type voice that drove me crazy. In fact I would sometimes call his answering machine knowing he wasn't home just to listen to his voice and now I'm fortunate to hear it everyday as we've been together for 11 years.
Since the relationship we have all the stuff that comes it, laughter, disagreements, compromises, who get the remote for the night or giving each other space until we get over the minor thing we were fighting about, but no matter what we always found our way back to each other.
Initially when meeting Joel there were two concerns. The first was that he was negative and I was HIV positive and the second was that he was white. In a crazy way it was his color that made me had more doubts than his status.
I grew up with a mother who had a phrase she would drill into our heads. "if they can't use your comb, don't bring them home". She said this as she was a child of the civil rights era when segregation was alive and well, not to mention she was raised in the south. Her views were so strong that once my uncle brought a white woman to Thanksgiving dinner and she flipped. I learned not only can white people can be prejudiced.
During the dating process with Joel I knew there was going to be some societal issues based on the fact we were a mixed race couple. And there were in the form of looks when walking down the street to eating together at a restaurant or sitting next to each other in a movie theatre. There was always looks even though people didn't know the aspect of our relationship. For all they knew he could have just been my friend. It's almost like if a black person and a white person are together in the same space, it's unnatural or sexualized. Yet I never let it deter me and learned to develop blinders.
Another interesting aspect comes from the gay community. If you really listen you can hear the whispers. Some thinking Joel was only with me because of the perception of the size of my penis or some who were convinced that I was with Joel thinking he was my sugar daddy and i was getting a free material ride in life.
In fact we took a recent trip to Italy and co-workers assumed he bought the tickets for me when it was I who bought the tickets for both of us as a Valentine Day gift. Yet I let them believe what they wanted to believe. Why should I explain my relationship?

I may get flack but it seems as far as verbal comments the most negative ones come from my own black community. They may not say it to my face but it gets back to me how I'm a sellout and how can I write or have any interest in black issues when I'm dating someone white. Then we have the perception that I'm a Snow Queen. For those not familiar with the term it's usually directed to someone of color who only dates or prefer white men. And their assumption was so off based as I have dated all races but again I wasn't going to use the energy to justify who I dated.
I can only tell my side of my experience as an African-American man as he may have had different reactions. But I know it's not everyone, but for those small ignorant ones they don't realize that love has no color. And for those who base their love on a color, I understand it's a personal preference but I feel you're missing out on so many wonderful people.
I'm no longer in a place where I give concern what others think. It's nice to have someone to share in your life. Especially being positive, knowing he has no fear and he accepts me unconditional. The fact he's white, that's just who he is. Another added aspect is that when things happen in the news along the lines of race or something happens to me in the outside because of my race, there's comfort knowing I can come home and share it with him.
Even my mother has changed. She is no longer the bigot she once was when I was a child. Joel is like a son to her. It's all about understanding and in hindsight I had to take a look at her history and the time she lived in and what she went through. But that's all behind her.
It tickles me when people say they don't see color. I ask how can you not look at me and see color. Can’t you see the blackness all over my skin? My blackness comes with history and culture, achievements and differences that are not filled with negativity. I want them to see my color, I just don't want to be judge just because of the color I am and the person I'm with.
When you have a relationship that works, who can say that it's wrong? 
Love plus love always equals love, no matter what color it is and never let it be based on the opinions of others. Just be happy! 

Friday, March 18, 2011

Managing Meds While on Vacation

I may get little sympathy from those who are reading this with no vacation in sight, but I just had to share my experience from the hell we sometimes call work.
I've always loved to travel, even when I was little. Even if it meant going to the next city or travel to the state even if it's across the river to New Jersey which is right across the border. What has changed since those early years is the fact that now I have to take into account the HIV medications I'm on.
Let me tell you it's hard. It's not hard to place them in your luggage and travel with them wherever you're traveling to. What is hard is trying to maintain the same schedule you had at home when you took your pills at your regular scheduled time. But c'mon vacations are not a time to be looking at the clock. Vacations are a time when you forget what time and day it is. When you let your hair, well maybe not in my case, but you don't maintain schedules.
For me the morning regimen has been easy because you don't have alchol in your system making you forget or you're out having fun and laughter with friends you just met or freinds you haven't seen for awhile as you sit eating food you wouldn't normally cook at home. In the middle of that fun it's hard to say, "can you excuse me for awhile while I go pop these meds." Then away you go to find some hidden room, usually the bathroom.
And of course taking pills takes planning ahead because while you're getting dressed to hit the town you're not really thinking of dispensing pills at that time. Where do they go? In the pants pocket where some accidently fall out while taking your hands out of your pocket.
So this had been a good week/bad week for me. Good in that I've been having a great time just getting away and forgetting about work and the hustle and the bustle and bad because on my week long trip I know I have missed at least three night time dosages. I can see my doctor shaking his head.
 Another barrier which isn't so big but one that works for me is that in order for me not to gag when I take my pills I usually have to take them with chocolate milk. Everybody has their own system and yes mine is chocolate milk. It's weird because when I take them with water I'm 100% sure to choke. So if water is the only option I have to take them one at a time which is a drag. Even regular milk makes the pills not go down fully.
My doctor told me the reason that chocolate milk works is that when I first take a swallow, it coats my mouth so that when I swallow the pills it's like being on a slip and slide and down they go easy with no problems. So in the last few days recognizing that I'm missing pills I've stopped at the mini market and got my little bottle of milk waiting for me in the fridge.
But seriously I just want to go on a vacation and truly have it be a vacation and leave the regular home routine at home. But when you have HIV you don't have that luxury. HIV never takes a vacation, unfortunatly.
But I have two more days of sun and fun and although my counts will be off some I'm also trying to give myself a real vacation. And yes the doc will be upset but a medication holiday, a brotha needs a break. 

Tuesday, March 15, 2011

Pink Elephants

Being on a well deserved vacation from school and work i decided to re-post one of my early entry. This may be new for many but if not I hope you enjoy it again!

I was at a point when I was young that I decided I was going to throw myself in the shark and parasite pool that we all know as, "The Dating Pool". I had reached a place where I had all my demons at bay and all the luggage I was carrying was in a large storage closet.
Now I'm showing my age when I say this but for you young uns' reading this there actually was a time when there was no such a thing called the 'internet'. Today whether you're looking to date or looking for a simple booty call, you just go to a particular website, create a profile and either order in or have it delivered.
Back during my time you had to get an alternative paper such as the Village Voice but in my city at the time it was a paper called City Times. In the back were the personal ads and each ad were grouped in section. So looking in the men for men section and because the ads didn't have pictures you're going by words and no pictures so you respond to whatever was written and resonates with you.
I saw an ad and responded to it. He seemed to describe himself as a fun person, likes to laugh and physical based on what he wrote it sounded all good. There's a lesson here, don't believe everything you read. Not knowing this I responded by letter and received a call from him the following week. He sounded nice and maybe he was the person he described himself. We decided to meet at a local restaurant. I didn't have any high hopes but who knows when it comes to the heart.
Day of the date and I get there early and I wait outside since it was a nice day. I see the city bus stop and off comes a man and he's walking toward the restaurant. Now at this point I'm staring and praying it's not him because I couldn't believe what I was seeing. He was a tall and lanky white man and wore this kinda beard that didn't know if it really wanted to grow out as a full beard. He had long hair. Not Jesus Christ long hair, but hair where each strand looked as if they were trying to escape his scalp, entangling themselves in the process.
Now although I'm a fashionista now I wasn't back then but I'll start with his shirt. It was pink. A bright pink that I never knew existed. But of course he would wear a pink shirt to go with his pants that were covered with pink elephants all over. From belt buckle to the bottom of his pants. He was a walking Walt Disney Fantasia cartoon.
"Hey are you Aundaray. You look great"
I learned if you can't say nothing nice don't say nothing at all. Of course another Walt Disney reference from the movie Bambi, told to the rabbit Thumper.
It was hard to go in to the restaurant because I was not out and honestly how can I explain to strangers the pink elephants. Putting that aside I got over it and we sat down but thank good the restaurant had these huge long menus because I hid my face in it reading and rereading the dinner specials.
There's a difference between black folks and white. I don't care what anyone says. White people if they see something strange they look at you out of the corner of their eyes. Black people, we give you that full look with everything we want to say registered on our face. The ones who were staring at me had the, "What the Hell" look.
Now I don't want to sound shallow but the guy who was also HIV positive started to give me his whole health history. And we're not talking about using the inside voice. So if you were sitting around us you were hearing what i was hearing. Part of that history involved him recently getting an anal wart removed from his behind and this was the first time he could sit with out pain. He joyfully shared he was going to have the second one removed the following week and if i like I could come visit.
That was it for me, just like the diners immediately around us I was no longer hunger and I used my acting skills to feign sickness which I said was coming from my stomach and could we leave. For him it was no problem as he related his recent bout with diarrhea. Was this really happening or was I on Candid Camera?
Needless to say it was the last time I saw him but I will never see the movie Fantasia in the same way.
Since then I learned there's other people with pink elephants as dating is a hard thing and it takes awhile to find that person you can relate to and see yourself spending time with.
The heart knows what the heart want.
For me it was not pink elephants!! 

Thursday, March 10, 2011

Aging and HIV

As my 44th birthday arrives in two weeks there's blessings in saying that I'm here to celebrate my 44th. But also recognizing that as my age is slowly creeping up I let myself wonder what effect will this virus have on my body as it starts to lose its youthful vigor.

I know that at my age I'm not old, but in someways, lets face it I'm not the young chick I used to be. And one of my concerns is the long term affect of taking drugs that in my case have not been on the market for more than five years. I also say this knowing that my body has built up a resistance to some class of drugs and as of now my choices are limited until the next miracle pill arrives.
The issue of aging is funny. When we're young we want to be older and when we're older we want to be younger. And then there are those who never grow up and I'm saying it as a compliment. There used to be a time when I was at a younger age I would let everyone know it was my birthday. I would scream it from the mountain tops and made sure you placed it on your calender. Now I whisper it and am not as colorful in letting people know the day is coming.

My one concern is as I stated before is how will HIV affect me as I get older. I mean as we age regardless if we have HIV or not, we tend to develop other age illnesses such as arthritis, high blood pressure, menopause if you're a woman and the list goes on. And underneath this all is the foundation of HIV. Already my pill count is up to 13 pills a day which doesn't include just my meds. In that number we're also factoring in my Warfin, a blood thinner for a clot I developed in my right leg and also since my vitamin D levels are low, which is usually the case in African-Americans, which can lead to diabetes and cardiovascular diseases, the pills add up.

I wonder if my t-cells could talk if they would say to me, "Hey listen Dray, we've kept you healthy for forty-four years and twenty five of those years we called in extra troops to fight that HIV virus, but man we're getting tired and don't know how much longer we can do this. At least let us have a lunch break"

And as I'm contemplating their words, then my liver speaks up, "Yo man I know you need these pills to stay well but those meds are driving me crazy. I'm doing everything I can to keep you going but the everyday swallowing of all those pills are doing some serious damage to me. What's up?"

Yet we need those meds to keep going and unfortunately when other things appear we just have to stomach it and add those pills to our number count. I write this not to scare anyone and especially if you've recently been diagnosed and are starting meds, this is not to tell you to not take your meds. They do work. In my own space i just question how my life will look like as my body begins to age and I'm still fighting HIV.

If anything it should be a wake-up call to those who are not affected and think that they don't need to have safe sex, thinking that if they get HIV they can just take a pill and still look good while climbing mountains. That may be some mentality today but will that mentality be the same in the next twenty to forty years when you're taking stuff that has no scientific summary of effect it's having on your system.

Yet I can't live in fear. Everyday we walk out the house is an unknown. All the worrying may be for nothing as I can get struck by a car while worrying about getting old. But the realities of living a life with HIV and aging is one that needs to be discussed as those who were infected early in the life of this disease are now affected by the question of current medication and its effect. I say this also recognizing those who are being infected who are already in their senior years as it's another growing population of people being infected and sometimes think they don't need to use protection.

Yet we all we're going to meet our maker and like they say it's how you live that dash that lays between the date you're born and the date you leave this earth. But I know that also this is the time to have honest conversations with my doctor and to hold nothing back and even if more pills are added, as a nurse told me a long time ago- if it's going to save your life, take them. and I've been fighting this long so it'll be crazy for me to give up now.  
    

Saturday, March 5, 2011

Eat, Drink, Punch Love

I remember the first time I was in a relationship that was unhealthier to me than the virus I had in my body. I wish I could say his name but out of respect and to not bring myself lower than him I won't.
When I first met this man I was in my mid twenties and wanted to be in a relationship. Plus at that time not having the highest of self-esteem, my standards were not pretty high. So i was ready to receive anybody who showed interest in me. When he introduced himself I thought he had mistaken me for someone worthy, but no he was seeking me.
Like all relationships, during the chase and the courting you only see the good side of a person. Actually let me take that back. You also see the bad signs but you're so much in love that you ignore the warning signs.
He was tall, dark chocolate skin and had a authentic masculinity that made him look strong. Also he was much older, with an additional ten years on him. In the beginning if he had asked to marry me I would have. That's how desperate i wanted to be in a relationship.
The first sign that things were not all Happyville was when he would verbal call me names. "Man you act stupid", "Are you retarded?" and more that came with expletives. In a weird way I still saw that as love because I grew up in a home where my mother had the same pattern of verbally abusing me, so I saw it as normal.
The first time he physically put his hands on me was in the middle of sex.He was HIV positive also and despite the medical realities, I insisted that he wear a condom as I didn't want to become infected with a different strain of HIV. Although there's debate on whether someone positive can reinfect someone positive, I didn't want to take that chance. Yet he didn't care as during sex at one point he would slip off the condom as if I wouldn't notice. When I protested usually he would call me a negative, then that would be the end of the sex, but this particular time he slapped me out of anger.
Now the crazy part of it was that I figured I deserved it for not being reasonable. In the following days more words and small physical actions would come and still I maintained the relationship. I learned later that my life was like the Disney animated movie, "Beauty and the Beast."
For those who never saw the movie, hell even if you did you missed the undertones. Here was a monster that screamed at her, told her what to wear and made her scared of him. But she sang a nice song that if she stays she could change him. That's what I thought I could do. I could show with what love was and change him.
The wake up call came when he invited me over to his house for dinner. It was a nice setting with candles in a darkened room, Luther Vandross playing in the background, two glasses of red wine and a nicely set dinner table for two. We actually had a good talk during the meal with no signs of tension.
Afterward we moved to the couch and continued talking. He then started to make sexual moves on me and at that time I didn't want to have sex. Instead of taking my no, he took it as a chance to force himself harder on me. I remember struggling as he was on top of me trying to undress me and it was then that my eyes opened. While struggling, looking up instead of seeing the person I was in love with, I saw a monster.
I don't know where the strength came from but I got him off me and made it to the door. It was the last time I saw him as I let him know by his repeated calls that if he came around me I would call the police.
Yet I never called the police even after the attempted rape. I was scared. Scared that the police wouldn't care. Scared of being further humiliated by the police. Scared that if it did go to court by testifying against him I was letting everyone know my business. Scared that in a way I asked for it since I was the one who went to his house. Scared that no one would believe a man can commit a crime of rape to another man.
He never payed for his actions but he taught me to be stronger. He taught me that love don't come wrapped in a balled fist followed by an apology. He taught me that if anyone ever placed their hands on me, not only would it be the end of the relationship but I would call the police.
Unfortunately there are people in the same situation waiting for that change to happen and scared to leave. Or don't understand that abuse is not always with the physical but even the words, which sometimes are more damaging.
 If this is you or you know someone in that space believe me the change will never happen and the only change one can control is their own. And if they really looked at their relationship, they would know that love is not supposed to hurt.
Leave! Run! End it! Because it's not going to get better.
Here in NYC we have the LGBT Anti-Violence Project (www.avp.org) which will help with reporting and offer support. If you're not in NYC call your local LGBT center to see if they can help.
I leave you with this quote from Dr. Sonya Friedman, "The way you treat yourself sets the standards for others."
Give yourself love and don't accept anything less from others!