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.
Saturday, July 26, 2014
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 story...how 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.
Heather Boerner, the book's author contacted me way back when, to ask if we'd be willing to tell her our story...how 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.
Sunday, June 22, 2014
Room to React...again and again
If you've read through this blog, you'll notice I say something over and over....you have to allow people room to react. I learned this after my husband and I told my family about his HIV status when essentially a bomb went off in our entire family that didn't heal until my daughter was born.
I came across this quote today from author Pema Chodron (from her book When Things Fall Apart), "We think that the point is to pass the test or overcome the problem, but the truth is that things don't really get solved. They come together and they fall apart. Then they come together again and fall apart again. Its just like that. The healing comes from letting there be room for all of this to happen: room for grief, for relief, for misery, for joy"
A few weeks ago, my husband and I took our daughter for a visit to see my parents. We have all come a long way from the days when they wouldn't speak to me because of my choice to marry my husband. Both my parents have come a long way in letting go of their fears and expectations, and have truly come to accept and love my husband as part of the family. I have been very happy with their progress, and thought they had really come around. My best friend from high school just had a baby, so my husband and I were going to visit the newest little bundle. And then my dad made a remarkably offensive comment. He said "Do you think your friend will feel comfortable having your husband hold her new baby?" I was completely taken aback...and said "Yes dad, she's fine with it, she invited us both over to see the baby." My father replied "But maybe she's not comfortable saying that he shouldn't hold the baby...you know....just in case the baby could catch it."
I was stunned. I was frustrated, I was angry. Here I thought they made all this progress with their fears and ignorance, and then all at once, we take 5 years worth of steps back. I replied, "Haven't you learned by now that you can't 'catch' HIV like that? Why don't you educate yourself before making such an ignorant comment?"
My heart broke all over again and honestly, I felt like packing all our stuff and storming out of their home for another 5 years, and vowing to never let them see my daughter again unless they were ready to fully accept our circumstance and stop being so ignorant.
It took a couple hours but I cooled off. I had to remind myself..."give him room to react, give yourself room to react, remember we all need room to react." Eventually I let it go. It allowed me to understand exactly what Perma Chodron means when she writes:
"...the truth is that things don't really get solved. They come together and they fall apart. Then they come together again and fall apart again...the healing comes from letting there be room for all this to happen...."
This has been my life's greatest lesson. I hope you will allow room in your life for this lesson as well.
Saturday, June 21, 2014
Still Processing
A while back, I spoke with a person who was writing a story about our journey to conceive. She asked about the medication I was taking, Truvada, and in talking with her I realized that I had not processed the fact that I was taking an HIV medication during our attempts to conceive. When I first heard about the possibility of taking Truvada as a way to reduce the risk of transmission of HIV during unprotected planned intercourse, I asked my primary doctor to prescribe it to me. My doctor not only refused to prescribe the medication, saying it would be unethical for her to do so, but she also told me she'd refuse to see me as a patient if I was going to engage in such risky behavior.
Needless to say, I found another doctor who was willing to prescribe me Truvada. The only thing was this new doctor was a doctor at the HIV clinic where my husband was a patient. It was an unconventional approach...but I was willing to do whatever it took to conceive a child.
So...now to the "processing" part.
I'll be honest here...it was not a comfortable feeling for me to go to an HIV clinic for my primary health care needs. It was like trying to fit a square peg into a round hole. The advantage was the doctors at this clinic were very mindful and supportive of our desire to reduce risk of transmission, but since they were specialists in treating HIV patients, I didn't get the comprehensive health care that I really needed. But it was the only place I could be prescribed Truvada within my insurance network so there I was... monthly visits and blood tests at an HIV clinic. It made me face my own prejudice and notions about HIV. I felt ashamed. I felt humiliated. I realized that everyone in this clinic, thought I was HIV+. The receptionist, the patients in the waiting room, the medical assistants, the nurses, the custodial staff, the lab workers....I felt angry that in this modern age of medicine, this was how it had to be done. But the real reason for my anger was my shame.
I thought I had processed it all...thought I had come to accept my husband was HIV+, but it became clear that I had not. I finally understood why my husband battles so much with shame, and social anxiety, and self-hatred. It is because he lives in a world where having HIV is still judged, still shamed, and still feared. And...he joins his voice to the rest of those that spew judgement and hatred...in fact, his voice may be the loudest of all. And I am ashamed to admit, and still processing how to rid myself of the judgement and fear that I thought I had overcome. I know now that it is different when you are a patient. It is different when you are the one living with HIV.
I also know that I rose above my own shame, and I faced what I thought was judgement from others...because I knew it was temporary. I knew I was not HIV+, and once I became pregnant I would not have to go back to the clinic. While it took resolve for me to check in and sit in the waiting room of an HIV clinic, it was not brave or courageous. No, the brave and courageous ones are those who live life every day with HIV...who boldly face shame, and fear, and rejection each day.
Needless to say, I found another doctor who was willing to prescribe me Truvada. The only thing was this new doctor was a doctor at the HIV clinic where my husband was a patient. It was an unconventional approach...but I was willing to do whatever it took to conceive a child.
So...now to the "processing" part.
I'll be honest here...it was not a comfortable feeling for me to go to an HIV clinic for my primary health care needs. It was like trying to fit a square peg into a round hole. The advantage was the doctors at this clinic were very mindful and supportive of our desire to reduce risk of transmission, but since they were specialists in treating HIV patients, I didn't get the comprehensive health care that I really needed. But it was the only place I could be prescribed Truvada within my insurance network so there I was... monthly visits and blood tests at an HIV clinic. It made me face my own prejudice and notions about HIV. I felt ashamed. I felt humiliated. I realized that everyone in this clinic, thought I was HIV+. The receptionist, the patients in the waiting room, the medical assistants, the nurses, the custodial staff, the lab workers....I felt angry that in this modern age of medicine, this was how it had to be done. But the real reason for my anger was my shame.
I thought I had processed it all...thought I had come to accept my husband was HIV+, but it became clear that I had not. I finally understood why my husband battles so much with shame, and social anxiety, and self-hatred. It is because he lives in a world where having HIV is still judged, still shamed, and still feared. And...he joins his voice to the rest of those that spew judgement and hatred...in fact, his voice may be the loudest of all. And I am ashamed to admit, and still processing how to rid myself of the judgement and fear that I thought I had overcome. I know now that it is different when you are a patient. It is different when you are the one living with HIV.
I also know that I rose above my own shame, and I faced what I thought was judgement from others...because I knew it was temporary. I knew I was not HIV+, and once I became pregnant I would not have to go back to the clinic. While it took resolve for me to check in and sit in the waiting room of an HIV clinic, it was not brave or courageous. No, the brave and courageous ones are those who live life every day with HIV...who boldly face shame, and fear, and rejection each day.
Sunday, February 9, 2014
Lavishing Love
My own family has long struggled with accepting my husband's HIV status. When we first announced we were getting married, there was a huge blow-up...nasty words were spoken, bitter tears were shed, and many years without contact were spent. None of my family members attended our wedding. I came to understand very quickly, as I've said in this blog before, that you have to allow people room to react. And you have to let go of your own expectations of how people should react or behave when you make the decision to disclose something personal. This realization saved me from staying bitter and resentful toward my family. I understood they were reacting from a place of fear and lack of knowledge.
I spent many years pursuing them...rebuilding our relationships. We could not engage in healthy discussions, so for 5 years, we stopped speaking. It was a good decision on all our parts...giving each other room. (We lived 2,000 miles apart so that helped us give each other room too) I mailed cards on holidays and mailed gifts on birthdays. And after a couple years, I'd leave voicemails on holidays and birthdays...they never picked up when I called. Once we hit our 5 year anniversary, they suddenly understood that my relationship with my husband was not- negotiable. They realized they could not control my choices and decisions. My sister came for a short visit from out of town. Then we flew to them for Christmas...and slowly but surely, we began rebuilding our family dynamics. We would never be the same, none of us. We spent the 5 years apart, and now - suddenly - we were back to being a family, but we were all different people.
Through all those years, everyone would tell me, "Wait until you have children. They will come around." And they certainly have come around. Big Time.
It is amazing what this new child has done for our family. With her chubby cheeks, and wispy hair, she has rebuilt us all. She has brought us to a place far better than any of us could have dreamed of or imagined...our family unit has been made whole. They lavish their love upon her, and upon us too. And it feels like we never missed out on those 5 years. Don't know which is the greater miracle, her birth or our family's healing.
I spent many years pursuing them...rebuilding our relationships. We could not engage in healthy discussions, so for 5 years, we stopped speaking. It was a good decision on all our parts...giving each other room. (We lived 2,000 miles apart so that helped us give each other room too) I mailed cards on holidays and mailed gifts on birthdays. And after a couple years, I'd leave voicemails on holidays and birthdays...they never picked up when I called. Once we hit our 5 year anniversary, they suddenly understood that my relationship with my husband was not- negotiable. They realized they could not control my choices and decisions. My sister came for a short visit from out of town. Then we flew to them for Christmas...and slowly but surely, we began rebuilding our family dynamics. We would never be the same, none of us. We spent the 5 years apart, and now - suddenly - we were back to being a family, but we were all different people.
Through all those years, everyone would tell me, "Wait until you have children. They will come around." And they certainly have come around. Big Time.
It is amazing what this new child has done for our family. With her chubby cheeks, and wispy hair, she has rebuilt us all. She has brought us to a place far better than any of us could have dreamed of or imagined...our family unit has been made whole. They lavish their love upon her, and upon us too. And it feels like we never missed out on those 5 years. Don't know which is the greater miracle, her birth or our family's healing.
Friday, August 16, 2013
Self-Love
Now that we're nearly 4 months into life with a baby, I am noticing my husband has a particular way he interacts with our daughter that I think is related to his HIV status. It just breaks my heart to see, but the shame he feels is manifesting in a way that prevents him from fully enjoying life with his new daughter.
Just simple things like a reluctance to touch her, kiss her, or even breath on her. I hope he can work through his shame and fear because as she grows older, she will interpret his reluctance as rejection.
It all comes down to his lack of acceptance about his status. He is so afraid to face it and accept it because it would mean having to face the bad choices that caused him to contract HIV. He is ashamed of his choices, and ashamed of his status, and until he can forgive himself, he will continue to feel that way.
I wish he could know...truly know...how much I love him. I wish he could know how his smile, his smell, his touch is a source of happiness and contentment for me. I wish he could love himself as much as I love him. And I wish he would love himself as much as his daughter will love him. Children pick up on our vibrations....she will know that he doesn't love himself, and in turn, will struggle with her own issues of self-love.
I can only hope that with her every smile and giggle he comes one step closer to accepting and loving himself, and teach her to do the same.
Just simple things like a reluctance to touch her, kiss her, or even breath on her. I hope he can work through his shame and fear because as she grows older, she will interpret his reluctance as rejection.
It all comes down to his lack of acceptance about his status. He is so afraid to face it and accept it because it would mean having to face the bad choices that caused him to contract HIV. He is ashamed of his choices, and ashamed of his status, and until he can forgive himself, he will continue to feel that way.
I wish he could know...truly know...how much I love him. I wish he could know how his smile, his smell, his touch is a source of happiness and contentment for me. I wish he could love himself as much as I love him. And I wish he would love himself as much as his daughter will love him. Children pick up on our vibrations....she will know that he doesn't love himself, and in turn, will struggle with her own issues of self-love.
I can only hope that with her every smile and giggle he comes one step closer to accepting and loving himself, and teach her to do the same.
Friday, July 12, 2013
Baby Girl!
Our beautiful healthy baby girl was born in April 2013. She is beyond what my wildest imagination could have conjured...far beyond.
The labor and delivery went quickly with no complications. It was a beautiful day.
The greatest miracle of all is how my family has reacted to her. For all the years of heartache, years of rejecting my marriage and maintaining their distance, it turns out that my parents are incredible grandparents.
I can't tell you all how much I appreciate your support and encouragement. I read all of your emails and comments, and feel honored that you would tell me intimate and personal details about your own relationships with HIV+ spouses/partners. It was a scary journey with many ups and downs, but my heart led me to this point, and I am filled with deep gratitude.
And so the journey to conceive a child has ended.....and the new adventure of parenthood begins.
The labor and delivery went quickly with no complications. It was a beautiful day.
The greatest miracle of all is how my family has reacted to her. For all the years of heartache, years of rejecting my marriage and maintaining their distance, it turns out that my parents are incredible grandparents.
I can't tell you all how much I appreciate your support and encouragement. I read all of your emails and comments, and feel honored that you would tell me intimate and personal details about your own relationships with HIV+ spouses/partners. It was a scary journey with many ups and downs, but my heart led me to this point, and I am filled with deep gratitude.
And so the journey to conceive a child has ended.....and the new adventure of parenthood begins.
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