Tuesday, January 31, 2012

You're Fired


I have talked about this issue before but felt it needed revisiting or maybe I just needed a release as it just recently happened. I'm talking about firing my doctor. Giving him the pink slip and thanking him for the little he has done and calling it quits.

I'll back up a bit and state how I was referred from my primary doctor to a specialist concerning a HIV related issue. Usually when you go to a specialist you're starting a new relationship and sometimes a different mode of how they operate. Yet if you've been referred by your primary they usually do it knowing the specialist will be a match.

For me that was not the case. When I arrived it was great to experience a welcoming reception room where sometimes it can be a horrendous experience. Yet in this case they were real pleasant. So I felt good about seeing this new doctor.

I should have know by the first omen when the doctor called me and as i was walking to the door to follow him, it literally starting closing in my face and if it wasn't for my quickness i would have had an instant nose job. But still I gave him the benefit.

I shouldn't have done that as when we sat in the examination room he came at me quick with questions.
"What are you here for and why do you need to see me"
"Where are your records? You're wasting my time with no records"
"When did you experience symptoms? Please I don't need the long story just tell me the date"

This was literally within ten minutes of sitting down. As if we were on a timer. Usually I don't get agitated but he started to bring me to that place. The thing that pushed me over is when I told him I had been living in New York for about nine years and he leaned into me and stated

"If you plan to stay in New York you have to be quicker with your response. I'm not just hanging out with you at a party"

That was it!

My tongue came untied.

If he wanted to see the New Yorker, then ask and you shall receive. No foul language was used but without jumping out of myself I told him about his professionalism and his treatment and how not only did I not care for it but I wasn't going to allow it. Now since I'm paying you, you're actually the customer and I have no problem taking my business somewhere else.

I just wonder why do you need to call someone on their stuff that motivates them to suddenly be nice to you. In other words something set off a trigger in him that said, "He's not like the others" 

And if he was used to treating people like a commodity and not speaking back, then he was right, I'm not like the others. In the end I was like the others as he did have me out the office within thirty minutes, probably to satisfy the medical insurance companies
‘Get them in and get them out,’ like cattle.

The moral or reminder for me is that a relationship between medical providers is important and no one should be made to feel like herded sheep no matter what credentials the doctor has. There are many good specialists out there, but then there are some that have gotten high on their fame that you can't tell them the sky is blue.

When it comes to my health I don't care how many awards you have on your wall. Your friends may give you medals but I refuse to reward you!

So at that moment when stated we need to schedule a new appointment, I politely gathered my coat and straightened my tie and in a clear calm voice told him,

'No thanks. By the way you're fired.'  

I would be the fool to come back and be subjected and when it comes to health; we must be empowered to speak up in our own defense. Like Maya Angelou stated, "When they show you who they are, believe them." I saw enough and walked away to find another specialist who's looking for my business.

You may steal my co-pay but you won't steal my joy!

Tuesday, January 10, 2012

Brother Can You Spare A Roof


"When you graduate from high school you're going to get out of my house"
My mother let me know that in the 11th grade after a blow up about something of which I can't recall, but I did remember her words.

A year later she kept to her promise and reminded me a week after I graduated. I was 18. Although I was legally an adult I was just getting used to the role. Yet here I was getting kicked from the nest with the clothes on my back and no plan and most importantly no place to go.

I was homeless.

And if things were not already bad it was the year that I found out that I had this thing call HTLV-3 but today we now call it HIV. All the dreams I had for myself of being this famous actor and writer went flying away from me and the world seemed to come crashing down on my shoulders.

I was fortunate to have several relatives who let me sleep on their couch and when I started to become that question, "Why are you still here?" It was time for me to find a new couch. The virus was never a factor in my life as i was in survival mode. I knew it was there but I placed it as a low priority. My main goal was having a roof over my head and something in my stomach.

I did make the time to see a doctor for a short while but when he tried to put me on medication it was a no-no. In my situation how was I going to take these pills on a regular basis and the kicker is that one of them required that I take one with each meal. What meal? And where was I supposed to put these pills especially when no one in my life knew that I was gay and to find out I also had this disease would only compound all my bad luck.

At the time I was giving God a silent treatment so I couldn't put it in his hands. I simply had to do what I had to do to make it day to day. some of it I'm not proud of but looking back, when you're in a place in your life where you feel you're stuck in a corner.

Today there are many young people in the same boat. Homeless and living with HIV. Both comes with a certain degree of danger and questions on how am I going to do this? usually when people think that you're homeless they immediately ask why don't you go to a shelter. The reason it wasn't an option was that shelters, especially if you're gay, is sometimes a reflection of the non-tolerance real world only it comes with physical harm. Ask a homeless youth today and they'll tell you that they would rather sleep on the street than risk their lives in a shelter.

Fortunately for me I only had to sleep outside for less than a week. Someone gave me a Chevy Chevette that went as fast as 25 miles per hour but it got me from here to there. It drove faster than my hopes. It also became my living/dining and eventually bedroom. I didn't need to take a yoga class as the car with its small size made me conform to it. It was so small I didn't even have room for the tears that wanted to fall from me. Tears asking, "why me?"

My adventure on the streets were over when the city placed me in emergency housing. It was a small efficiency in a senior apartment building, but I was not complaining as it had a roof.

Even though God and me were not on speaking terms, he was still working on my behalf. It took two years of being homeless and it wasn't until I got a place that I was able to take stock of my life and start to deal with this thing called HIV. It moved quickly up the list.

Now here I am having been blessed with seeing the world, meeting fascinating people, recapturing my dreams and returning back to God. HIV and homelessness is not a good match and that's why even today I never judge anyone who asks for spare change as they're not all drug users. I should know as I used to be one of them.

When we look at HIV and not having a place to rest our heads it's not easy. Yet in a weird way I'm stronger for it and know that I was one of the lucky ones. Some can't share my story. Hopefully through this i was able to share their story as we all want the same thing...a place to call home.


My life of being homeless for two years and living with HIV.

Wednesday, January 4, 2012

New Year Resolutions


I thought with the dawn of a new year I would share a simple short list of my resolutions that I have placed in front of me of which i will do my best to do and if I fail in any capacity to follow through with one, instead of feeling guilty I will pick myself up, brush off the dirt and try again until I get it right!

So without further ado- My top 12 resolutions

1. I will forgive not only myself but others for any transgressions and will start over with a clean plate.

2. I will make my health a top priority which includes taking all meds on time, not missing a dosage. Going to all doctor appointments and be preventive instead of reactive. Most of all I will not consume unhealthy food on a consistent basis which means that I will eliminate junk foods, fast foods and other foods that contribute to an early death.

3. I will start muting the voices of the past and quit using the past as the reason why I'm not able to move forward. I recognize I only give it power when I won't let it stay buried

4. I will look in the mirror and accept all my flaws. I won't try to kill myself to get a six pack so you can 'like' me and at the same time have enough dignity to not display my nakedness on the web to be validated. I will love the body I'm in yet still work on it for my approval and no one else

5. I'm going to stop being friends with isolation and be open to meeting new people and new places. No more of waiting for someone to call and instead taking the initiative

6. On purpose this goal is in the center because it represents my resolution of letting God be the center of all my joys and to continue to strengthen my relationship with him and to stop asking him what I want and instead ask him, "how can I serve you"

7. I will take the limits off and remind myself I'm here for a reason despite my status I can do anything with determination, will and God.

8. I will dream once again in color

9. I will allow myself to cry. And in that crying have my tears transform me to feel renewed and having a purpose.

10. I will let myself love and only let in those who show me the same love. I won't stay stuck in a place where the showing and giving of love is a one way street or attempting to convince someone of the love I possess. If they can't accept the gift then I'll share it with someone who's open to receive it and whether its family or friends, make them aware that my love is here but I'm not going to spend my life trying to make you see how beautiful it looks.

11. I'm going to remove myself from people who want to kill my dreams. People who are emotional vampires who suck the joy out of my existence and leave me empty.

12. I'm going to keep asking myself, "If not now, when?" And realize that I'm here for a reason. I have HIV for a reason. I am black for a reason. I have a voice for a reason and in spite of my condition I will not be a walking dead and instead live my life as if it's my last. I'm going to wake up from my dreams and start making them happen and never tell myself, it's too late!  I can’t stay where I was!  

So in the next 365 days and beyond I'll keep my arms stretched up to what I'm supposed to be.

That is my resolution. 

Thursday, December 29, 2011

I Am Here for the New Year!!


When I was young I would look along with everyone else as Dick Clark started the countdown to the new year. 5,4,3,2,1....Happy New Year! As everyone was celebrating the New Year I was celebrating that I was still here. For me the New Year was my marker on how much time I had on this earth and was I going to be here to welcome in another new year?

In the early years of having HIV I didn't see a future for myself past 30. I was 18 when I was infected and back then unlike today it seemed more likely you would die then live a longer life with a manageable routine of medication.

Of course when it seems like you have a ticking clock over your head you become reckless and have a feeling of 'what's the point'. I was in that place. I stopped dreaming and going after goals. Instead of making a To-do list my list consisted of destructive behaviors that went against who I truly was deep inside. Yet how could I show people who I was inside when I didn't even give myself permission to look within.

It was years of spinning my wheels going nowhere just waiting for the Grim Reaper to finally get to my name on the list. In the meantime I let my anger of the situation guide me and I truly become that slogan, "hurt people, hurt people". Not realizing the only person I was hurting was myself.

Before I knew it Dick Clark was dropping the ball again, then again, then again and the death that I thought was waiting for me seemed to have forgotten about me. I had my awakening moment when I realized that; hey I'm not going anywhere.

It was then I told myself I can stay in this moment of pain and keep holding my breath or look at the gift of life that I was given. Others around me had passed on to a higher plane but I was still here. I was still living with the gift that God had given me, which was the ability to wake up each day with everything functioning. The gift of life.

I'm here.

I couldn't use the excuse of my status for why I was not going after my dreams, especially when all this time God was telling me, "I'm not done with you"

Since I had my waking moment and put my life in drive and dealt with all the internal and external forces that were holding back, I started to move. When I started to release the people who were draining my positivity and started to surround myself with positivity, things started to change. When I looked in the mirror and started to look at the greatness and not the flaws, I started to grow into myself. When I accepted myself and made no more excuse for my flaws, I started to see me.

Now it felt that each New Year was not one of holding on to grief and 'shoulda, coulda' woulda's'. It was now a time for me to say, this is what I'm going to do and it's going to get done. I see why the New Year is represented by a young baby and an old man. The young represents the rebirth of who we are and the old man represents the letting go of old issues that is old and gone and should no longer be part of us.

More than a resolution, it was a promise that I was going to live my life the best I could despite what was living in me as I was the one truly in control. Health, eating habits, friends they were in the front seat and negativity, drama and grudges they were dropped, just like the ball in Times Square.

So I celebrate not only the arrival of each year but also the ability to awake for each day. I truly am blessed and when the ball drops this year I recognize my gift and will join the chorus of others and shout out loud....

Happy New Year!!!

Thursday, December 22, 2011

Coal for Christmas


Do you remember when you was a child and you dreamed that underneath the Christmas tree amongst the wrapped packages was the one toy item you've been hinting at wanting. You truly felt you deserved it as all year you've been on your best behavior and followed all the rules, so in your heart you hope you're being rewarded for your efforts.

The time comes to unwrap the gift and instead of the action figure or doll you receive a pair of tube socks.

Damn!

All that hard work for nothing!

Well this year the New York City Department of Health and Mental Hygiene handed out not tube sock but something even worse than coal. For many HIV prevention organizations in NYC, they gave those hard working HIV agencies a fifty percent cut in funding effective 2012.

The cuts were based on the CDC's recognition of achievement in testing, prevention and linkage to care. In other words, "Since you're doing so good, you don't need much of our help' So because HIV agencies came up with creative initiatives to get people aware of their health they are in essence getting punished for it.

A question can be asked, especially if you're looking at NYC what neighborhoods are you looking at that rates are going down, Chelsea? Because in other areas of the city, especially improvised neighborhoods, HIV rates for young African American and Latino men and women are going up.    

Research indicates that HIV and Syphilis rates are 140 times higher among MSM in NYC compared to other populations. HIV rates are also increasing for women of color, representing 95.3% of new HIV infections, yet somehow, somewhere, somebody who has alphabets behind their names and have never set foot in the affect neighborhoods, except maybe for a photo op, has decided that the sun is out so we can all put away the umbrellas.

This is a huge step back and a slap in the face to people who have hustled to get people in to test, learn about stigma and invest in their care. Many soldiers stood on the front line in this battle and because of the cuts in 2012 already some of those soldiers have been fired or relieved of their duty just in time for the holidays.

As an agency that receives funding from NYCDOHMH this can be seen as biting the hand that feeds you, but I truly feel that if these cuts are implemented and attention is not made then all the work that has been done will slowly evaporate and if it means biting that hand, then so be it as this cannot go unnoticed.

And I'm truly not trying to go there but if it was gay white men dying and experiencing growing rates of infection, would we even be having this conversation. It seems the bus for marriage equality is the engine that drives most attention and funding while HIV amongst people of color is trailing in the caboose, an afterthought if thought at all.

So thank you NYCDOHMH for the coal this holiday season and maybe you'll have a visit by the ghosts of Christmas past, present and future and in that future you will see the mistake you're making.

One can only hope.

In the meantime for those affected by the rising rates, don't drink the Kool-Aid and think we can let our guard down. This virus is still here and it's not going anywhere anytime soon despite what is said from the mountain tops on high!  

Tuesday, December 13, 2011

Where the F#@K Am I At?


I remember a time when online was a big part of my encounters, or to be politically correct, my dating life. Young people may not relate to the old form of technology before connecting to the internet where web pages loaded in seconds. They may not know what the sound of a modem connecting to your phone line is as a high pitch screech welcomed you followed by a web page that took literally minutes to connect. You could put in a web address, go get coffee and make a sandwich and still come back to see its loading. Those were the early days of the internet.

It was also a time when meeting others had transformed. No longer did you have to go to clubs or hang around a park or bookstore. You now had AOL which provided you virtual room of choices of people looking to connect.

For those who were HIV positive it was a great tool to overcome the face to face rejection of telling someone your status, as if they ended the conversation, you knew them by only their screen name so there was little emotional attachment. At the same time it was also a place to meet other people who were HIV positive as they had exclusive HIV positive chat rooms along with other interests you may be into.

That's how I met Phil. He lived in Texas and I was in Minnesota. We started chatting and sent pictures of what we looked like back and forth and soon a friendship started to form. It was also a time when I was looking to be in a relationship and having that one person I could connect with on more than a friendship level.

Phil and I had that connection and although he lived in Texas and I was thousand miles away, my cup was so empty that his words quickly filled it up. There was hesitancy because I knew that the way we were talking and getting closer one of us would have to make the sacrifice of moving from their location. Long distance relationships can happen but are usually not always successful or comes with sacrifices.

After the umptenth conversation and knowing he had a pool in his backyard and I had brown grass in mine, the conversation came about making that next step. Coming off of a cold Minnesota winter, I was willing to make that trade.

So after a quick yard sell and loading whatever I could fit in my car, I was on my way to start a new life with someone I knew only by mutual conversation. Was I in love? Especially someone who I knew from a computer monitor? Questions I should have asked myself before driving down the highway through traffic.

Unfortunately when you look for that connection to be with someone you stop listening to you inner voice. Your let your heart lead the way and put your brain on mute. Even today in our search of not wanting to be alone we leap into the waters before knowing how deep it is and what lies beneath. Yet dealing with the rejection or distance people give you based on your HIV status you sometimes settle for what you can get.


At the time I didn't think I was settling with Phil but when we moved in together, the dialogue we had on the computer was still there but that was the only thing we had in relation. I quickly learned we didn't have a physical or emotional connection and the brain finally found its voice as it helped me to realize our interest was in different places. He liked going to Home Depot every weekend (which I hated) and I liked going to the theatre (which he hated). It literally took me waking up in bed one day asking myself, "where the F#@k am I and who is this?”

This isn't to discourage online dating as there has been many successful cases of people making it work. Yet you have to use all your senses and listen to that inner voice. Words typed on a screen are only a small representation of a person. Phil was not a bad guy it was just that in person we didn't click and it took us both taking a chance and realizing that it wasn't going to work.

Everything in life is a learning lesson and shouldn't leave one bitter. Just take it for what it is. But for myself I learned that online dating is like reading a great romance novel where the language of the book is good but you don't necessarily want to sleep with the author.

But that's the great thing about life and love, we all have different experiences and without those experiences we'll never grow as a person.

Whether you're positive or negative, in the end, just like the modem we used to use, we all wanted to feel one thing; connected.

Wednesday, December 7, 2011

Zero Tolerence


A new initiative is looking at how we reach zero tolerance when it comes to HIV. So many definitions can fall under the zero tolerance umbrellas. There’s zero tolerance in people continuing to get infected, zero tolerance in people not accessing mental health care or zero tolerance in having an unhealthy lifestyle and watching your t-cells drop. When I think of zero tolerance first I thought about how I get older my tolerance get lower and lower, but in a serious note I think one thing that needs to be revisited is reaching zero tolerance when it comes to HIV stigma.

Although stigma has been talked about, it can never be enough as it’s still a burden that many face as well as a barrier to understanding of how to live healthy with HIV.  

25 years ago I was introduced to this disease as I discovered my status.  I was introduced to stigma early by a health nurse who visited me as at that time there were not that many infections. It was a time when I thought only white people got ‘the Monster’ (another stigma) Along with telling me how to live with HIV, she then had me get some bleach to show me how to wash down my silverware and toilet seat. Those behaviors still exists as people with HIV probably have had one incident of eating off of plastic silverware and paper plates.

In a funny way those many years ago I was less fearful of the disease and more about how people would see me and stigmatized me. It used to be that if you lost weight or were skinny you had the bug. My fear was so pronounced that even though I was always a skinny person before my HIV status, I was fearful of people seeing me and associating my weight with HIV. So I doubled up on everything. I wore two pair of pants and two shirts. I used to drink Ensure just so I could gain wait and can’t tell you how much pasta I ate. So much I’m surprised I’m not writing this in Italian.

Stigma prevented me from telling anyone, even myself. I was diagnosed by the army when I tried to join the army reserve. Even after they told me I didn’t go to the doctor because I didn’t want to walk into a building that serviced people with AIDS. I felt I wasn’t one of them. You have many people who get tested on these mobile vans and come up positive but don’t take the next step because of the stigma of walking into a building and sitting in a waiting room where just by being there; you feel they know your secret.
You don’t want to get your prescription filled in your neighborhood for fear of stigma. You may choose to not have it fill at all. Or you may choose to travel 45 minutes on subway to see your doctor when you have one just as good two blocks away from your house.

Stigma kills because you keep it your secret and it eats you up as you can’t share your condition for fear it will get out. I remember the weight of my secret and the feeling of being scarred as I couldn’t share the pain I was going through. When you have HIV you have many battles; Battles with loneliness. Battles with your faith as you ask God, why me? Battles with depression and anxiety issues. Living in pain.

We have to have zero tolerance with HIV stigma within our community, our homes and ourselves.

Zero tolerance in the community involves talking about it and not pretending it’s not there. This is specifically for the churches that operate in silence. There are many churches that water the garden of stigma each week and twist the words of God from love to hate. Churches are in the epicenter of this pandemic, and your silence or mistruths feed the beast of stigma. Churches need to be open and not hypocritical meaning you can’t hate us during the day but love us at night. No more.

Zero tolerance must happen in the home. We have to start talking about it. Turn off all the TV’s, the X-Boxes and Playstation and all those LCD gadgets and start talking about and learning about this disease that lives on your block. No more of turning your back on your children or kicking them to the curb because we choose to live in a house of ignorance.

Finally zero tolerance must happen with us who are HIV positive. We have to stop stigmatizing ourselves and blaming ourselves for being positive. We have to stop thinking God is punishing us because of our moral choices. Sometimes we’re so focused on dying we forget how to live. We become the walking dead. We have to be honest with who we are and unafraid to state our status. Some people say “I have HIV but HIV doesn’t have me”. If you’re going online dating sites and you’re putting down negative when you’re positive, HIV does have you. And we can’t stigmatize people who are negative because not all are close minded and not all are unwilling to be in a relationship with someone positive.

We have to have zero tolerance of people whispering their status. By living in truth we can make the stigma of it go away.  I used to ask God why me? I used to ask why I was given these rocks. I was looking at what the rocks in the wrong light. When I looked at the rocks in God’s light I saw diamonds.

We all have to say I have zero tolerance for stigma.