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


Von said...

Yes indeed and how sad that a system stops people doing what they instinctively feel is right.

Jules said...

I am a 40 year old adoptee that contacted the adoption agency shortly after the birth of my first child looking for any medical history information they might have. Really it was more for my son than anything. I received a letter back with a lot of "non-identifying" information and it basically stated that when I was born in 1970, and everyone in the biological families were young, they were also healthy. Then the last sentence of the letter stated that there had been no contact with either of my biological parents since the time of my adoption when I was three months old. End of story. No more information available.

I understand if the biologicals don't want contact but do I really not have a right to my medical history? Shouldn't the adoption agency be required to continue contact with them to update that information for me? It is so frustrating. I pray I won't have a medical emergency with one of my children that I could have at least been aware of much earlier and prepared for it somewhat.

And just a side note - and an odd one too - not only am I also an adult adoptee but I also had a tumor (benign) removed from my neck. Mine was on the right side, the scar is in the fold on the side of my neck. I'm scared to death that little lumps and bumps may be huge, horrible things because of all of my unknowns.

Real Daughter said...

Our lives are put at risk because of outdated medical histories. Just another way adoptess are discriminated against.

Lori said...

Please don't be offended, but I am not adopted, but the mother. I found things in our medical history, in the last decade, that my parents did not see the need to tell us about...including mental illness and heart problems...That was the way back in the day.

I am also a mother and I offered my daughter a complete medical history, including maternal cancer issues, and she did not want it - I was of no consequence...

Realistically it should be a given, the medical information bieng shared...but it isn't.

Angelle said...

Jules: are you sure "the" biologicals do not want contact? 1970 was a different world view and perhaps the trauma of your adoption being hidden in secrecy is overwhelming to them. It has taken me a while to take in the loss of my son in 1967 and even though we have a great relationship at times I find a have a moment of doubt. It is so much to assimilate.

Amanda: First, I love reading your blog!
When you said "...we knew about my maternal family medical history" I bristled a bit because your adoptive mother was taking ownership of your medical history and as a first mom It sounded as if your first mother was being marginalized. I am so aware of the dance my son is forced to do to keep his adoptive family happy that I am probably over sensitive to these nuances.

Keep writing!

Amanda Woolston said...

Jules, I don't want you to take this as me urging you to seek information or reunion that you're not ready to seek. But I do want to let you know that you can't always rely on an agency to relay information accurately. Mothers have explained that many of them never contacted the agency again or sought their descendants because they were told not to or were made to feel like they should not. Many mothers, especially from that era, were told that they would be disruptive if they sought their descendants out.

I was born in 1985. I contacted my agency a year or two ago looking for information and they got the "names were not exchanges, the last address is no good, please pay us $135 and we'll do a search and ask her if she wants to be contacted." Turns out, she had stated she was open to contact and info release when she surrendered me and called to restate that close to my 18th birthday. The agency chose not to pass that along to me.

To gain more knowledge about the experiences of the mothers in that era, I recommend "The Girls Who Went Away" by Ann Fessler

If you'd like to try going through whatever route the state has for access to information, rather than using the agency, I might be able to point you in the direction of the code of law in your birth state if that would help :-)

I have only met one other person who has had surgery and a tumor in their neck like that. Small world!

Lori, I'm not offended :-)

Angelle, thank you :-)

Yes, and she and I have talked about that. She is struggling and working through how she felt and thought about my adoption pre-reunion and now post-reunion and feeling like she's being replaced or isn't important any more. It's been quite a journey.