Saturday, July 26, 2014

Minus the Stigma

Lately, I've been thinking a lot about the stigma of HIV.  Specifically, my battle with it.  I really admire people who are open with their status, to me it appears so effortless how they own their truth.  I wonder if the more confidence a person has about a decision they've made (HIV related or otherwise), the less room there is for shame and stigma. I experienced this kind of confidence when we decided to be honest with people about how we got pregnant. I was so proud and so ferociously protective of the life growing in me, that it didn't matter what anyone thought about our decisions. And I feel that same way even today...I really don't care what people think about the decisions and risks we took to conceive. You'd be amazed at the sort of emails I get from this blog...people who are really upset with my decisions, people who tell me I was/still am careless, reckless, selfish, sinful, etc.  It doesn't phase me because before this life was my reality, I would have thought the same thing.
Its not really courageous or brave of me to be "thick skinned" with the awful emails I get. Anyone can be brave when they're anonymous. But ever since Heather Boerner's book Positively Negative was released, I've been wrestling with this issue of stigma.  And its been good.  To be honest, for the past decade or so, in my pursuit of conception, I have not thought about this critical issue. Now that I have a child, and since there are so many women and families in this same position, I just can't take the luxury of pushing it off anymore.

So...not sure where to really start making sense of it.  Probably should see a therapist about it. Probably should talk to my husband about it. Funny how its so simple...and so complicated.

From the very first post on this blog, I have found the process of sharing my struggles with you to be helpful to my own journey.  Just to get my thoughts out there has been liberating and refreshing. I know that my perspective is not always politically correct, or medically correct, but I know that I am always striving for a deeper understanding of all things HIV, especially as it relates to my own life.

So...about that stigma...whats at the root of it? I know the root is Shame for my husband...but is it Shame for me too?  Probably. Shame with a little fear of the assumptions others will have about my husband and I.  Shame with a little fear of rejection that comes from people's ignorance and judgement.

Guess it all boils down to Shame with a little bit of fear what others will think of me.  (But really...who doesn't fear what others will think of them?)  And what would it look like for me to let go of this HIV stigma? Maybe it would mean you'd know my real name, and know what I look like. Maybe it would mean nothing would be different...

I hope I figure this out.  I don't want to be battling with this when my daughter comes to an age of understanding prejudice and intolerance. I want her to know her parents as people who took charge of their own life's narrative, instead of others narrating for them.

I want her to live the truth, her family's truth, her own truth...minus the stigma.

Friday, July 18, 2014

Positively Negative...READ IT!

I am so excited to announce and introduce you to an amazing new book, just released today!  It is called Positively Negative: Love, Pregnancy, and Science's Surprising Victory Over HIV.

Heather Boerner, the book's author contacted me way back when, to ask if we'd be willing to tell her our we met, fell in love, journey to conception, pregnancy, and finally a baby.  It was the first time I had told the story to anyone from start to finish.  It brought up many memories and emotions, but mostly it brought up a deep sense of satisfaction.  Satisfaction that I believed in this love, believed in the hope for a baby of our own, and believed in people like Heather-who continued the fight when I could not and carried the message when my strength wavered.

As I read the book today, I re-lived the journey...this time with my darling baby girl toddling around, finding entertainment with a cardboard box and her favorite doll in the red dress...

And when she pressed her baby soft and honey sweet cheek to mine, and looked into my eyes with her long eyelashes fluttering so...I wept.  I wept because Heather captured the emotions of the journey so beautifully in her book, and so graciously described our little Pom-Pom, and so eloquently intertwined human emotions and storytelling with medical facts and scientific jargon.

I feared admitting to you all that we're one of the couples featured in the book because some of the details take away from my anonymous-ness...but I feel okay about that.  I'm grateful that Heather allowed us to tell our story anonymously. Its a real sacrifice to the integrity of a story when three of the main characters are faceless and nameless, but she never pushed and never judged.  And...I find strength in that. Strength to let you all in a little bit more.

To keep this conversation going join the Twitter Chat Book Launch Party on July 19th at 1:30 PST.  I'll be tweeting along with you all...just follow #HIVLoveWins.

Also, next weekend on CNN, Sanjay Gupta features the Hartmanns, the other couple in the book!  Will let you know more details as I get them.