experience vs expectation

Published January 10th, 2019 in 2019, hearts | No Comments »

Well guys, that thing I mentioned I might elaborate on later came to fruition, sending me into a bit of a tailspin.

So my experience with my first surgeries and the like traced back to that rowdy month, October 1995 when my first dissections ripped through my body and altered my path forever. When I first came to, they were trying to find the why because it was a teaching hospital after all. Marfans was thrown around a bit, and some other connective tissue disorders I didn’t really fall directly inline with–they thought I had Marfans but when I didn’t develop much aside from the dissections, well then it became a, well it probably is a genetic thing, and thinking about what I did know, being Dutch and all, the natural evolution of my thought was that it was my mother’s side that had the faulty genes. She had a story of a great uncle that had probably died of one, and she was kind of gangly and had too long arms for her body so some of physical affects outward didn’t totally deter me from thinking the Dutch side was directly responsible for the gene issue.

Now fast forward almost 25 years and the gene defect gets named, after literally years of me asking them to test the genetic component. It was the entire reason I even approached my birth family at all, me totally convinced that since they had me in their late teens, at the point I found them would have been the point some of their children would be turning my age and might have issues. I wanted to save people, not even invade their lives as such a surprise might do.

Now I had my birth mother’s phone number all of ten minutes before I decided to call her the first time. I think she was bewildered but somewhat unsurprised and for a long long time she told me she didn’t feel comfortable telling her family that I was around at all, my brother and sister never even knowing of my existence until really, a bit after that time. When I talked to my birth father the first time he had told his children either then or very quickly, and spoke with me as if I knew the figures he was referring to by name and by position in the family hierarchy, uncle this and grandma and all that. He told me that he tried to treat his kids as freethinking individuals, and though they were very young at the time I found him (say like what 10-12?)–my birth mother’s daughter, my sister, was older and closer to the age where I had issues. She was totally fine, of course.

Now this entire time since then I have never been made aware of anyone ever getting tested, let alone had any issues. When I did have the gene named and designated (ACTA2 people)–I told them all of course because, obviously. Now my maternal line stopped talking to me what, less than 6 months later, and though I am sure it was not exactly related to having an answer, it kinda felt like I was the bearer of bad news so fucking cut me off why don’t you? I am sure it was less that than, honestly, my constant urging for change and improvement, nagging as it were. I did try to solve the problem by actually doing something, but we all know how well that all went, though clearly they are still getting rent on an apartment my friends are still living in, unfinished.

This all changed Friday when I was haphazardly scrolling through ACTUAL news on Facebook of my friends (really I was looking for the good news over the bitching)–and I saw this posting on my sister’s page. Now this is my birth father’s daughter, my sister is now 28 and she was celebrating a New Year’s thank you for yes, having survived an aortic dissection. This was Friday and I was drunk so I kept re-reading it over and over, thinking, did I read that right? ALL this time I thought it was my Dutch side and could it be the other side? I mean, could it? Well I did speak with my sister IMMEDIATELY after that and related my experiences to her and she related hers to me and I mentioned the gene and even still. I thought there is just no way. I mean, talk about lines crossed, my maternal grandfather I think had an enlarged aorta so how could it be paternal at all? nahhh.

So she messages me yesterday that the test came back (she took it months ago now)–and it is the same gene issue. Now this doesn’t mean there might not be some issues on the maternal side, but certainly I doubt the catastrophic gene issue this one causes, which coupled with another squirrely one, is likely also VERY responsible for the numerous strokes I have already had.

So, moral of that story–NEVER assume a thing. EVERYONE is shocked who knows a thing about this at all. Good thing my birth parents never canoodled later on as there would be another kid who probably would have kicked it, what with her side’s knowledge of some aortic issues and his bunky gene pool. My poor sister—but suddenly we can make a little more sense to each other, maybe. I am no longer alone with the nightmare but now I have to worry about her. I am a rock, of course. I wrote my maternal side–mother aunt and sister. I had that news two hours this time before I emailed. That being the human and humane thing to do.

As it is I realized that this is one relationship I can try and foster a bit in terms of birth relations–I certainly wouldn’t have felt comfortable trying to understand what is going on over there especially since everything really has gotten progressively better to the point where I do feel pretty protective over it all. He and I did this pretty much alone since we legitimately saw no one socially for more than a span of hours last year–3, 4 times maybe. In total. So all of this we have been able to maintain was certainly not assisted with the intervention of really anyone.

We got some help when we needed it, but all in all–this is what happens when you cut out the bullshit, largely. Not that people are bullshit, but the situations I spent my time trying to remedy over there were certainly in hindsight, definite opportunities for me to spend time improving my life over spending it doing it for people who did not appreciate it. Granted they never did ask for it–just seemed ridiculous and I always said to her I wanted her to be better for knowing me, that her life would be helped with my help, I had hoped. What a load of shit that was, right–but my intentions were true. I was trying to help her get freedom and make some money to improve her immediate surroundings and help my sister have childcare help since I knew it was both of their dreams. I even told them that, so other ruminations aren’t worth my time. I already spent enough wondering, and wandering through life down in Cap Hill.


What we are doing here is a whole other thing and the facts I need to remember support a more protective stance over everything I care to keep. 

<3 you, world–sometimes you absolutely suck the life out of me, but I fucking love that you exist. for me right now

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