A Step in the Right Direction

I would like to tell you all what I did today.  A couple of months ago I was asked if I would be interested in being interviewed and photographed as a woman living with HIV.  I thought it through and decided that I would do it as an important step in my acceptance of this disease and my moving forward in shattering the stigma that surrounds me and others living with HIV.  This summer marks 5 years since the acute stage of my infection.  I needed to do something that would get me unstuck, and opened up to receiving more support, more acceptance, and to being a role model for others, as well as to put my face out there as someone who lives with HIV.  A very NORMAL someone.  I find that people have so many inaccurate ideas of what HIV looks like.  I want to be one voice, one image-in changing those stereotypes.

So I agreed, moved on, forgot about it.

As today moved closer I continued to think about my process.  Knowing that doing this photograph and putting myself out there MIGHT put me at risk of more stigmatization and a loss of some privacy.   But as I thought about it, I realized I have nothing to lose.  Right now, or before right now, I have felt isolated, alone, ashamed, stigmatized.  The worst part of that is that I have stigmatized myself.  I had decided that I was less than. Not worthy of a great and long life. Not worthy of health and happiness and love and success.

Last night I was a wreck.  I burst into tears as I told a loved one what I was doing.  Scared: yes.  But sure of what I was doing:  absolutely YES.

This morning I wanted to puke.  In the hours before the photographer arrived I kept reminding myself to take deep breaths.  Reminding myself that I am courageous and brave and worthy.  That I don't care what people think.  This is for ME.  This is the first meaningful thing I have done for myself in a long, long time.

Caitlin Margaret Kelly has been working on this photographic/documentary project for several years.   She is spending the summer driving around the US photographing and interviewing women with HIV.  I'm not sure what the full project will look like in the end, and I'll spare you all the details, because it is hers, and I am just a small part of it. But everything she told me this morning about why she is doing the project was really powerful.  I am so grateful for the work she is doing for me. For us. I know some of the other AGLM bloggers have been photographed or will be photographed by her.  It was a singular and remarkable experience.  I knew it would be and planned to have the whole day off of work so I could relish in it, feel it, process it, and now share it with you in my writing.

Caitlin arrived at 10am.  I told her I was nervous and immediately started crying.  If you know me, you know I can shed a tear for every occasion.

But as she started interviewing me, recording me and taking notes, my story just unfolded.  We talked for nearly two hours.  She wanted to know all about me, the HIV, the isolation, the stigma, but beyond that, just about me!  For the next hour or so she photographed me.

Yes I realize that my name, image and status will now be out there if someone searches for me deeply enough.  While this frightened me at first, in part because of my profession, what frightened me more was staying silent.  What would have been a worse risk was for me to continue living with this heavy secret.  I know there is a lot more coming out to do and other things to consider, but for now this was a step in the right direction that I needed to take.

And off she went.  On to the next state and the next courageous woman.

I can't even begin to tell you how at peace I felt when she left.  I know it will be a fleeting feeling.  But just that I felt it, if only for a few hours was enough for now.

I truly felt for the first time in a long time that I am very special, valuable and worthy.