So this year, I was chosen, as one of Poz’ magazine’s 100 Long-term Survivor List … and I guess, oddly enough you can say that I am very grateful. Twenty-seven years of living with this disease is nothing short of miraculous; but the miracle goes way beyond me, way beyond those living today. I feel the recognition belongs to many other people.
People like those who contracted this disease in the early 80’s who had no idea what they were up against. They had to fight for understanding, those foot soldiers of ACT UP, who fought the government for action and answers. They deserve thanks for paving the way for us with their very lives.
For the Poz Survivors List event, I was asked to share a little about my life… so I will just say this: my childhood sexual trauma began the ball of confusion. I am a survivor of domestic violence, 27 years in recovery for crack and alcohol, I have been homeless for a time and I am living with depression and anxiety. As I told my bishop upon applying for seminary: “There’s no shame in my game”. That’s a very important component of living positively with HIV… there has to be no shame. Shame in and of itself can be a killer: a killer of the spirit, a killer of any semblance of positive thinking.
I received my diagnosis after my husband died of an AIDS-related complication. I contracted HIV from being homeless and living in the streets. After receiving my diagnosis, it took me quite a few years to internalize and accept. You see, I self stigmatized myself. I thought of myself as contaminated and dirty. As Charlie Sheen stated the when he came out: “HIV is a hard 3 letters to absorb”.
A hard 3 letters to absorb indeed!
When Charlie came out, a lot of activists were busy trying to rectify the language the media was using on social media. Such stigmatizing language hasn’t been heard since the beginning of this fight. It was heart wrenching to see that people still had horrific things to say. No one deserves HIV.
I must admit that I do not know Charlie Sheen. I don’t condone his public life and choices he has made. But hey, that’s Charlie’s life. I don’t like how he talks about sex workers; basically vilifying and demonizing them. I don’t condemn Mr. Sheen for things he has inadvertently said… this early in the game, he probably doesn’t know better himself. We all have made bad choices. For whatever reason Mr. Sheen came out, it can be viewed as ‘a positive’ for our community.
He is a public figure and as he says: “I have a responsibility now to better myself and to help a lot of other people.” Time will tell if he lives up to his responsibility as a spokesperson in the HIV field. For that reason, I stand behind Charlie Sheen (some of his remarks, not withstanding).
But I digress…
How does it feel being a long-term survivor? It has been 34 years of fighting stigma, fighting fear and rejection, fighting stereotypes, fighting against the perceptions and expectations of others “moral values”.
Because I am a person of the cloth, I particularly pay close attention to how we are treated in the religious institutions. The religious institution has done a lot of damage to our community. To many communities; myself included.
Many fear the church because some people in the “church” have yet to fully understand what Jesus means when he said to “love one another.” Some in the church play at compassion while hiding behind what I call the “sanctimonious flapping of lips”doing whatever they need to do publicly to “show that they are doing something”, but really doing nothing — instead worrying about the sexual behaviors of those who dare to disclose their status. I must say this is not the church on a whole….and yet…I hear stories.
“Longterm survival” for the most part, has been 34 years of dealing with ‘society’s feelings’, while WE were and are the ones fighting for our very lives. Many are still living in secrecy.I give thanks for my husband. His shame propelled me to be as transparent as possible, and to be a vessel of people’s shame.
My longevity can be attributed to the medication we have access to. I began my treatment with that monster drug AZT. I give thanks for being able to go from 13 pills twice a day to 3 pills once a day. I give thanks for my family. One cannot walk this journey without some sort of support. My family has supported me and has learned as much as they can from day one. I also give thanks to my Facebook family of HIV positive brothers and sisters. I have two groups, one open and one secret.
Living with HIV this long, simply means doing what I need to do to live, having a great relationship with my doctor, and my therapist who helps me with issues from my childhood, and integrating the different parts of me, into the whole of who I am.
I get strength from helping others along the way, remembering how my early days felt. I reach out and make my self approachable to those who are newly diagnosed and filled with that initial fear. I encourage. I let them know that they ARE loved by their Creator, whomever they chose to call it. I remind myself that: “I praise my Creator because I am fearfully and wonderfully made; your works are wonderful; I know that full well” (Psalms 139)
It is by the grace of God I am still here. I know that full well, too!
As we go forward into the next decade, we need for everyone to get tested. HIV is still here, and is not going anywhere. Our special focus along with young people from 13-24, is the 50 and over generation.
I’m supposed to have some inspirational slogan to pass along, which has helped me: “HIV is not a death sentence”: Grab on to life, and live it … and love those you meet along the way”.
For the general public: get tested, know your status. Protect yourself and your partner(s). You can do it.
There’s a 100 (and more!) long-term survivors out here to help you and each other along the way.