Flashback to August 14, 2012 where I'm in the bathroom looking at a positive pregnancy test, and surprised by the first emotions that are welling up inside of me. Not joy. Not elation. Not excitement. But BITTERNESS. SADNESS. REGRET. A sense of deep regret that it took 14 years to end up where the journey first started...with the idea of taking a pill to reduce risk associated with exposure to HIV. I felt (and still feel) that the medical community failed us. And said failure was caused to some extent by the stigma of HIV and by people being scared to put themselves in my situation and do so without their own expectations or ideas being projected onto us.
When I began seeking information about how we were going to have a baby of our own...I did not think it was going to take 14 years until we had the answer. In that first meeting with my boyfriend's (now husband) doctor, she told me to research something called "sperm washing" as the only way to safely conceive a baby of our very own. I recall asking her if I we could try unprotected sex to conceive, and then have her prescribe the medications that medical professionals take after an exposure to HIV (It is called Post Exposure Prophylaxis or PEP). She told me she didn't think she could prescribe it to me because the exposure had to be accidental in nature....and it was usually only prescribed to the medical or law enforcement community, in case they were accidentally exposed to HIV as an outcome of working in their fields.
I recall thinking that if I could advocate for people in my situation to have access to PEP, it would be a good place to start...and it seemed hopeful and logical that it could be available to the general public someday.
I am eternally grateful for all those who helped us have a baby...but can't help but feel sad...deep deep sadness that it took so long, so many doors closed in our face...and so much suffering to end up where we started. With me in a doctor's office, asking about a pill that could be taken in the event of exposure to HIV. Why did it have to take 14 years? 14 years! Over a decade!
I've been reading and re-reading the book Positively Negative by Heather Boerner, and find that it has caused me to think and re-think about some of the aspects of my journey. I also find that I've been getting emotional and crying because I realize the struggle is finally over.
It is finally over.
No more brainstorming about how I could get my insurance company to pay for sperm washing, or how I could get the CDC to hurry their timeline in developing guidelines for IUI with HIV washed sperm, or how I could get $30,000 to afford 2 rounds of IVF. No more wondering who I could talk to, which websites to visit for more information. No more looking for a support group or forum with other women and families in our same situation. No more aching and feeling actual physical pain from the lack of holding a baby in my arms.
No, the journey is over. The seeking is over. That chapter has been written. The trauma of feeling that deep yearning, with no solution in sight is all in the past. I have to heal now. And I guess that's what the crying is about. Time to stop warrior-ing, time to stop fighting.
Time to close my eyes, smell my daughter's sweet sticky cheeks, smile....and heal.
Saturday, August 30, 2014
Saturday, August 16, 2014
"Permission to be Female Please"
I'm going to apologize now for this post...it is a rant. It is me venting and processing...it is the reason I started this blog. To share my journey of venting and processing. So....
A few weeks back, I was part of a TwitterChat, and @HeatherBoerner asked me if I considered Pregnancy and PrEP (Pre-Exposure Prophylaxis) to be a feminist issue. I was quick to respond that No, I didn't see it that way...for me it was a personal issue.
Well you know what...I changed my mind. It IS a feminist issue. And the more I think about it, the more angry and offended I become.
When I think back on this journey of trying to get pregnant, my lowest point was the day my primary care doctor told me she would not prescribe Truvada for me, because it was an "unethical" thing for her to do, nor would she continue to treat me as her patient if I engaged in such "risky" behavior. I now understand part of why that was my lowest point...being shut out because I am a woman. I knew my anger had to do with the injustice of it all, but I thought the injustice was because I was at the mercy of a system that requires one to have a lot of money to conceive in a way they perceived as "safe." I thought it was a human issue, an elitist issue, an insurance issue, a medical issue.
But it was a feminist issue. I was not being prescribed Truvada because of the fact that I was using it to try to conceive. I was being judged for my sexual choices, my maternal calling, for my own decisions about my own body. That's a bunch of bullshit.
How different things would have been had I told that doctor I was just trying to stay negative. She probably would have prescribed it because she would have agreed with that logic. Or, what if I told her I had sex with my husband and the condom broke...she probably would have prescribed it, because it would have been "unethical" for her NOT to give me Truvada. What the hell?! Here I am trying to be open and honest, trying to lower my risks, asking for help to stay negative, asking for help to get pregnant...pretty much asking for permission to be female...and the door is slammed in my face! So rather than lowering my risks...she increased them...How "UNETHICAL" is that?
I am beginning to think that honesty may not always be the best policy when it comes to my choice of marrying my husband, and having a baby with him. People have asked the weirdest and most personal questions...as if they have a right to ask about my sex life just because I've shared with them that my HIV+ husband and I had a baby. And I've let them. I've answered those weird and personal questions because I didn't want them to feel awkward with a response of "That's personal" or "How is that relevant?" And isn't that the feminist issue...giving away our power, or having that power stolen, and as females, always fighting for our equality? How does being a woman determine how I can feel about something...how you can feel about me...or how you can treat me?
Ugh. I could go on about this, but you get the picture right?
I am not a human-sized uterus. I am a human sized HUMAN.
A few weeks back, I was part of a TwitterChat, and @HeatherBoerner asked me if I considered Pregnancy and PrEP (Pre-Exposure Prophylaxis) to be a feminist issue. I was quick to respond that No, I didn't see it that way...for me it was a personal issue.
Well you know what...I changed my mind. It IS a feminist issue. And the more I think about it, the more angry and offended I become.
When I think back on this journey of trying to get pregnant, my lowest point was the day my primary care doctor told me she would not prescribe Truvada for me, because it was an "unethical" thing for her to do, nor would she continue to treat me as her patient if I engaged in such "risky" behavior. I now understand part of why that was my lowest point...being shut out because I am a woman. I knew my anger had to do with the injustice of it all, but I thought the injustice was because I was at the mercy of a system that requires one to have a lot of money to conceive in a way they perceived as "safe." I thought it was a human issue, an elitist issue, an insurance issue, a medical issue.
But it was a feminist issue. I was not being prescribed Truvada because of the fact that I was using it to try to conceive. I was being judged for my sexual choices, my maternal calling, for my own decisions about my own body. That's a bunch of bullshit.
How different things would have been had I told that doctor I was just trying to stay negative. She probably would have prescribed it because she would have agreed with that logic. Or, what if I told her I had sex with my husband and the condom broke...she probably would have prescribed it, because it would have been "unethical" for her NOT to give me Truvada. What the hell?! Here I am trying to be open and honest, trying to lower my risks, asking for help to stay negative, asking for help to get pregnant...pretty much asking for permission to be female...and the door is slammed in my face! So rather than lowering my risks...she increased them...How "UNETHICAL" is that?
I am beginning to think that honesty may not always be the best policy when it comes to my choice of marrying my husband, and having a baby with him. People have asked the weirdest and most personal questions...as if they have a right to ask about my sex life just because I've shared with them that my HIV+ husband and I had a baby. And I've let them. I've answered those weird and personal questions because I didn't want them to feel awkward with a response of "That's personal" or "How is that relevant?" And isn't that the feminist issue...giving away our power, or having that power stolen, and as females, always fighting for our equality? How does being a woman determine how I can feel about something...how you can feel about me...or how you can treat me?
Ugh. I could go on about this, but you get the picture right?
I am not a human-sized uterus. I am a human sized HUMAN.
Sunday, August 10, 2014
The Story of Her
When I opened my very first bottle of Truvada, the first thing I noticed was a small cylinder container of silica beads. (Put there to keep the Truvada moisture free) I didn't know what to do with it, but I felt an urge to save it for some reason, so I decided to set it on the edge of a shelf in my hallway closet. I was certain I would get pregnant immediately, so I didn't think much more about those silica containers in my closet. Of course, as the months wore on, and I opened more and more bottles of Truvada, I ended up with quite a collection of those little containers. When I ran out of room on the edge of that shelf, I put the little silica containers in a decorative box that was covered with shiny bronze fabric and metallic rivets. I saved every single one of those silica containers from every single bottle of Truvada that I ever used. I realized I was saving them to show to my future child, a visual aid of sorts, for telling our little one the story of how badly we wanted them to come to us that we spent years and years chasing information, chasing options, chasing doctors...chasing our dream.
When I found out I was pregnant, the silica container from my last bottle of Truvada was already in that box, and I didn't give it another thought until just a few nights ago. I was with a group of people, talking about the book, Positively Negative and the memory of those containers came to mind. I looked for that box in my closet today. It took some digging around, but I found it. Here it is!
I opened it up to find 17 of those little silica bead containers. I took them out, counted each one. Studied each one as I slowly spun it with my fingers. Shook them next to my ear, listened to the tiny beads shake around in their cylinder cases. And suddenly, all kinds of memories flashed in my mind, like a slideshow...different scenes and different moments of the journey.
When I found out I was pregnant, the silica container from my last bottle of Truvada was already in that box, and I didn't give it another thought until just a few nights ago. I was with a group of people, talking about the book, Positively Negative and the memory of those containers came to mind. I looked for that box in my closet today. It took some digging around, but I found it. Here it is!
Funny thing is, there were other things inside that box. A scentless Lavender satchel envelope, an old pair of my husband's sunglasses, and 3 disposable cameras. Kind of ironic, that box is full of old, irrelevant, and expired items.
Are those little silica beads irrelevant now? In theory, yes. But they serve as proof of our journey, proof of what my mind remembers. Sometimes it feels like a story to me, not moments lived...just words that portray the sorrows, the longings, the unquenchable desires. The moments of promise...of grace...of elation, all sprinkled throughout the story. They are all that's left of the long journey. I'm so glad I saved them!
Here's my daughter playing with them. She loved to shake them, and listened to the sound close up to her ear. She doesn't know it yet, but those little containers contain the story of her.
Wednesday, August 6, 2014
Pictures of Us
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| 9 months pregnant! |
Hope you enjoy!
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| Our first glimpse! |
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| Family Photo...she is 13 days old here! |
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.
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 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.
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