Project Kengikat

What A Change

// August 9th, 2010 // HIV and AIDS

Tomorrow I have an appointment with my Dr. to get my HIV lab results, last month I went for my blood draw ans tomorrow I will know where I stand. I’ve been going to this Dr. for over a year now and all I can say is that things are no longer like they use to be. I am no longer stressed over HIV, nor I am worried that my HIV will lead to AIDS and then to my death and this is all because I now have a Dr. and a clinic who I trust without question. I have people who care for me and will do all they can to keep me healthy and alive. This is such a huge change from the way things use to be.

I’ve heard many people in the HIV arena say “there are no barriers to care here in Los Angeles” and each time I have heard this it has come from a someone who is white and has no clue what it means to live on the street or even struggle just a little bit. I am not playing the race card or making this about race, I am just calling it what it is. I’ve not once heard anyone other then a white person say such bullshit.

I was diagnosed with HIV in Carson/Torracne at Harbor UCLA Medical Center, this is a county facility, I was homeless at the time. The hospital discharged me to Bell Shelter way out in the city of Bell. Nearly three hours away by bus. I was then expected to come back to the HIV clinic for my HIV care. They knew I was homeless and they knew I had no transportation, so how was I to get there? Not once did they offer other options for my care that would better suit my situation, not once did they ask if this would be a problem for me getting to appointments. I know you are saying, “well you should have asked” The answer for you is that I did ask, I did raise concerns, I did ask for other options and non were given.

There was a time I just knew I would be dead soon from HIV leading to AIDS, not only could I not get to appointments I had no clue of just how sick I was. I had no idea why I wasn’t on meds and everywhere I turned there seemed to be more of the same “just be patient” How can you be patient when you’re told you have HIV and you now have to try to get to a clinic that is miles away. Furthermore I still had this huge staff infection on my lower back and could barely walk.

I dreaded Dr’s appointments because they would only lead to more doubt, more concerns and more unanswered questions and concerns. There even came a time where I felt I wished I never even knew I was positive. I wished I didn’t find out until I had full blown AIDS and it was too late. I felt all this even as i was doing all that I could to remain in care and be fully engaged in it. But “care” was not fully engaged in me…….”care” wasn’t engaged at all.

Thank God that nightmare is over and now when I have to go see my Dr. there are no tears, no sleepless nights before, no fear of being told that I now have AIDS and no fear of being told things that are completely wrong, no screw ups with my cart, no nursing case manager reading someone else’s chart to me and telling me it is mine, no having to have a U.N. headset to communicate with nurse and no Dr. shaking my hand with gloves on or not making eye contact with me. There is no guilt or feelings of shame for being homeless or poor and not able to pay and there is no shame in being HIV positive.

Anyone who says there are no barriers to care here in Los Angeles or any place in this country has their head up their ass and refuses to see things for what they are. Furthermore they have no damn business pretending to care for people with HIV or AIDS. This may sound a bit rude and even out of  line, but when you are in line to help someone you have no fucking right to tell them the way things are when you have no damn clue what that person is up against. You have no damn right to say how easy things are when you don’t walk in their shoes. There are plenty of barriers to care and simply because you can’t or refuse to see them from your high horse does not mean they are not there.

I’m no longer stressed about HIV and all that goes with it. I don’t worry about when I will start meds or if the meds will make me sick or have side affects. I have a Dr. I fully trust and each and every day I educate myself on HIV and together with my Dr. I will cross the each bridge when I get to it. The amazing thing is this, I now know that I will not have to cross that bridge alone or find my way over it because i have an awesome team in place and as a team I know everything will be ok.

The stress, guilt, hardships, stigma, shame and anger from being HIV positive came from the places that were supposed to help me deal with HIV.  I know I am not the only person who has had to deal with this and I know I wont be the last, but I will do all that I can to make sure less people have to deal with all the shit I had to deal with. Not because I didn’t care and that I wasn’t fully accepting my HIV status, not because of lack of education or the heavy load of stigma, but from the lack of compassion, care, dignity and respect from the very places poor people have to turn to for support.

Most people that are in the situation I was once in are not as strong as me, dont have the same level of faith that I have, do not have people like Brian, Tiana, who refused to give up on me, who saw the best in me when so many others only saw the homelessness. People like  Tina, Andy, Ryan, Moina, Eric, Willow, Patrick and Krystal who refused to let me sink, refused to let me end my life, refused to allow me to give up on myself. Most people dont have the awesome Dr. I have, the awesome clinic and care team in place that I now have.

I guess what I am saying is that many people only reach out once, some not at all because of all the shit they will need to deal with besides being HIV positive. Many times the stigma, guilt, shame, hurt and harm comes from the places that are supposed to help and those are barriers to care.

My life is not what I thought it would be at 41 years old. I dont not live where I thought I’d be living, I dont have the fancy things I thought I’d have at this point in my life, people I use to call friends I dont even call anymore. But even in all of this, even through the fire and through the storm, I am alright, my ship my be a bit battered and my soul is even wounded, but I am ok, my life is far better, my friends mean far more but most of all, through the adversities in my life, from going from the top all the way to the bottom, I’ve found peace, I’ve found my “nia” (purpose)

Right here is where I belong and I am finally back from no where, a place where a smile from me was so rare. I am back from a place that was dark that I nearly gave up the fight for my beautiful life, but from where I sit right now, the awesome people in my life right now, the amazing things I’ve been able to create and make happen for other people is humbling and for this I am so thankful.

I can truly say that I walked to the edge and was about to jump, but path was not complete and God said “not so fast. You have not done the task that I have given you to do.”

My life is in a far better place then I could have ever hoped for, the peace I feel is awesome and joy in my soul can never be taken away. Some people will never understand how I can say this at this point in my life and that is because they have yet to learn what their purpose in life truly is. Once you know it, then you will fully understand what I mean.

Victory is so sweet!!!