Saturday, November 27, 2010

Remembering my Tumor Without Family Medical History

It is two days after Thanksgiving and my parents are still here visiting.  We were sitting in the living room, watching TV.  Well, they were.  I was watching the pictures flip through my digital photo frame my dad got me.  I have seen those pictures a million times but I still love looking at them.  One picture in particular caught my eye.  I was holding my son, sitting with my head turned to the side.  You could see my scar; the one from the tumor (benign) surgery. I suppose I am not used to seeing the scar down the side of my neck and face because the surgeon specifically made the large incision to follow the curves of my neck and face so that it is not apparent when looking at me or talking to me.  But there's no hiding it when my neck is turned to the side.

My scar always makes me think.  It makes me remember how this one experience in my health care made me reflect on all of the, at-the-time, adoption-related unknowns in my life.  Not just that I didn't have a family medical history, but because I hadn't known about my life pre-adoption, or met my mother at that point.  It makes me think of how terrifying it is to not be able to tell a doctor what runs in my family when I am having a health crisis.  It makes me think of all of the individuals still in that place and how I know how that feels.

I thought about how my paternal aunt had just sent me our family medical history and how I felt when I read it.  Cancer....cancer....cancer....cancer....cancer.....I lost track of the cancers.  A few types of cancer were extremely well represented.  These were intimidating pieces of paper to look at.  I cannot neglect to say that I am thankful to have had good health thus far.

So at some point that evening, I asked my mom if she wanted to see the family medical history my aunt had sent me.  I know my original mother's medical history because I know and am able to talk to those family members and receive updates from them regularly.  My connection with my paternal family is different; I am only connected with one aunt who was kind enough to share with me a thorough list of our close relatives and their medical problems.  She looked at it and said something to the nature of: 

"Gosh, maybe it was better not to know."

"Not knowing family medical history does not make it go away or make it irrelevant," I said.

She then mentioned how we knew about my maternal family medical history.  What an adoption worker wrote down, removed identifying information from, and passed it along to my parents after interviewing my mother as a teenager was not family medical history.  I knew what was recorded of my mother, aunts, and uncles at the time of my surrender--all who were in their 20's or younger.

Knowing my grandparents had "this" or "that" at that time period still added to the mystery because I had no information or observation of family patterns--were their ailments more likely to be from lifestyle choices or from genetics?  I had no way of knowing.  Even before I began on my reunion journey and before I began my journey of allowing myself to think and voice my feelings from my adopted perspective, I refused to accept this family medical history.  I left my family medical history forms blank at doctor's offices.

Someone who is biologically-raised might understand how important family medical history is but perhaps in a different way.  Being able to grow up surrounded by relatives and gradually, over the course of your youth and lifetime, receive updates about various things going on in the family does not seem like it would be all that shocking to the system (not to dismiss those who feel it is--I am writing from a place where that was not my experience so I truly don't know).  Going through reunion and finding out everything everyone of the previous three generations has had and died from is overwhelming.  It's a difficulty that comes along with being adopted--but family medical history is no less important to know for us than it is for someone who grew up gradually gathering that information as a part of their upbringing and interaction with family.

One of the most mind-boggling things about this is, I had a mother who was more than willing to share and update her information and my parents would have accepted that information.  The willingness for openness didn't matter to an adoption system that was designed for secrecy.  It still is designed that way, really.

My thoughts and prayers go out to those today who still struggle because of that secrecy.

Photo credit: jscreationzs