Project Kengikat

One Year

// June 16th, 2010 // HIV and AIDS

It’s hard to believe that it has been a full year since I’ve had the amazing doctor and care clinic I now have. It’s hard to believe that the stress that came from being HIV positive is no longer something I am the least bit stressed about.

April 3, 2008 is when I was diagnosed HIV positive. I was at Harbor UCLA Medical Center which is a county hospital here in Los Angeles. I was already over a year into homelessness, so for me HIV was nothing I could cry over. There was simply no time for that and it would serve no point. My 11 day stay at this hospital was the worst. The first few days, maybe longer in the hospital all I was served was jello, cottage cheese, milk, coffee and fruit, even though I was on a “regular” diet. The staph went from bad to worse while there and there were days when it was not cleaned at all. I finally had to threaten to hurt myself before anything was done. I was later dumped in some hell hole way out in bell.

I had absolutely no faith in the care I would get from the HIV clinic there at Harbor, but I was still very sick and still dealing with the staph infection to try to find another clinic. It was on my second visit where I was told not to come back until I could pay the over $300 bill, so I had no choice but to find another clinic. Someone who reads my blog told me about 5p21 (USC’s HIV clinic) Things there were not much better, but I knew I needed to keep going. The only good thing that came from USC’s HIV clinic was meeting Charles who was my first nurse. He was the only person I trusted there and he was the only person who made any effort to answer questions and try to help me find my way through HIV. He always treated me with respect, always made sure I my appointments didn’t cause conflicts with finding a place to sleep or meals.

I was at the end of my rope, done with trying and sick of all the shit i was dealing with from being homeless and having to beg for medical care for my HIV. I was tired of jumping through all the hoops, dancing all the dances and kisses all the asses I had to kiss only to get nothing but doors closed in my face, people who were supposed to be helping me treating me like shit and getting away with it. Since the government says I needed to be sicker in order to get care, then I was going to do just that. I was going to fall out of care until HIV became AIDS and I was then sick enough to get care.

I recall many people telling me that there are no barriers to care. It’s always funny how people can tell someone else how things are for them and they have no fucking clue as to how things really are for the person they seem to know so damn much about. It’s funny how people think simply having a case manger magically fixes everything and all things fall into place. I know from experience that there are plenty of barriers to care and having a case manager is many times more trouble then they are help.

HIV was a complete nightmare for me and I wasn’t even on meds. Everything was going south and the only person who was doing all the hard work, day in and day out and getting no place was me. The only person left in the cold was me. My friends Tina and Andy did all they could do without putting housing or anything else in jeopardy for me because homeless people cant get help from anyone, because then their needs are being met. How screwed up is that?

I was done fighting a system that is designed to fail and I was done trying to fight something that is supposed to help me. I blogged that I was going to drop out of care, but as soon as I typed it my tears began to fall because I am not a quitter and to give in to this would mean that it was better and bigger then me. I cried all afternoon, because I didn’t know what else to do.

My friend Tina reminded me that I had been through far worse and I could get through this too. Andy told me to take a break and try not to let it get to me. He too reminded me that I had been through worse. “You can do this Kengi” is what they told me and shortly after the tears and anger I reached out one last time my friend Brian and he came through for me. “I cant walk away from care. That would be stupid and would destroy all that I have worked so hard to build” is what I said in an email to him and just like my awesome friends Tina and Andy, he too refused to let me simply give up. Because of Brian I now am in what seems like a whole new world.

Friday June 12, 2009 I spoke with Ruben from North East Valley and he was very kind, not something I was use to from a clinic, at the end of the call I was in tears and I think he heard it in my voice because he asked what was wrong. I told him that I would not get an apartment if my housing form was not signed. I told him what was going on and then I really broke down, I just couldn’t help it. He told me to calm down and assured me he would do all he could to make sure I was able to get the apartment. He told me to come in on Monday.

I met with Phillip, my new case manager on Monday, June 15 and by the time I walked out of the appointment I felt like I had people who truly cared for me and cared that i was suffering. I cried as I walked to the bus stop because from April 3, 2008 until June 12, 2009 I felt so lost, so alone and I knew I would die from AIDS. Not because I wasn’t willing to do all the work to live, but because many of the people who were supposed to be helping me live made me feel like my life wasn’t worth it. Ruben and Phillip made me feel like my life was worth fighting for and they were going to fight right along with me.

I met Dr. Moe a week later and right away she too made me feel like I mattered, like she cared about what was going on in my life. All I could do was cry when she signed my housing paper because in that moment I knew my life was going to get better. In that moment I knew that I could make it and AIDS was not going to ever be a reality for me. I that moment I felt like someone else besides me was going to do all they could to prevent me from being another number….excuse me, another Black man on some damn CDC report.

I remember calling Tina and Andy and telling them I met me new doctor and how kind she was. How she answered my questions, but most of all it was how she treated me like a human being, with respect and care. She shook my hand and did not wear gloves, she made eye contact with me and for the first time I knew I had a fighting chance. For the first time I knew I wasn’t going to be the only person willing to fight damn hard for my life.

I can’t say enough about the care team that I now have. But think about this, year ago I was at the point of dropping out of care, trying to think of ways I could make myself sicker so AIDS would come. I was so stressed out from HIV and I knew I was going to die from AIDS and today HIV is not something that I stress over, not something that keeps me up at night crying, not something I feel lost about. I went from having a doctor and clinic that didn’t even know my name, much less give a rats ass about me being homeless, to having a doctor who knows my name, knows the community work I do, remembers what we talked about the last time we saw each other, a clinic that treats me with respect and cares for me.

I look at pictures from a year ago and I see the circle under my eyes, the stress in my face and fear behind my eyes. Smiles from me were so rare and now I can’t keep them off my face. I’ve been able to grow my outreaches to homeless people as well as people with HIV and AIDS.

I spent tonight with my best friends Tina and Andy at Hollywood & Highland listening to the legendary Barbara Morrison. When I think of where my life is right now, all the amazing friends in my life and gift of life that God allows me to wake up to each and every day, I cant’ help but be thankful for all the good and all the bad, I can’t help but say “THANK YOU” to everyone, even to those who made my path a bit hard at time, I must say “THANK YOU” because all of it has made me a better person and I am damn proud of who I am, where I am and amazing man God created when he allowed me to come through my wonderful parents.

Tina and Andy, thank you so much for always believing in me, even when I didn’t believe in myself, thank you for always standing with me in good times and bad, you two have been there for me with out fail and with out question. You two show me what real friends truly are and how friends stay in the storms of life. I will never be able to repay you both for all the love you’ve extended so freely without conditions and I don’t know why God blessed me so richly with friends like you, but I am so glad he did.

Brian, you’ve seen me at my lowest points and you never gave up and refused to let me give up. You’ve been there to encourage me and he me see all the good in me. Each time I reach out to you, you are right there, if I have questions, you are right there. In my darkest hour you came through for me and I will never forget that. You helped me hang on. There is a gospel song that says “late in the midnight hour, God’s gonna turn it around” In order words right when you think it’s over God will show up. June 11, 2009 was my midnight hour and God sent you to turn it around and it worked in my favor. Part of the reason I am still fighting is because you threw some punches for me when I was down. THANK YOU

Dr. Moe and North East Valley you have been my wheel in the middle of wheel. You restored my faith in HIV care, you’ve showed me there are people willing to fight for me just as hard as me. You showed me that I do matter to someone other then myself. You epitomize AWESOME HIV are and for this my life is so rich, so blessed and HIV is no longer something that I fear, nor is it something I stress about, cry over or worry about. THANK YOU.

Charles, I will alway be so thankful to you. To this day you are someone I can call on, someone I love, respect and trust. YOU will always be the best nurse I’ve ever had the pleasure of meeting. You are my friend and I am so thankful to have you in my life.