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 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 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. to the "processing" part. 

I'll be honest 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 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.