The second time

I had been having trouble with being tired, and being out of sorts a lot.  Couldn't figure out what it was, exactly, but it seemed like I was just short tempered. 

That day, I felt dizzy while walking down the stairs. I passed it off as jitters about going out, needing to eat.  It wasn't the first time.

Less than half an hour later I came to, sitting on the sofa, surrounded by firemen and paramedics, having just had my first tonic-clonic (grand mal) seizure, and then heading to a local hospital.  It was New Year's Eve.  I spent it in the ER.

That was the first of the seizures, and the first of the strokes. Altogether, there were 3 strokes, and 5 or 6 major seizures, and innumerable minor ones.  They figured out it was Lupus, with blood clotting disorders, central nervous system involvement, seizures, obviously, and I got a bunch of new medications. 

That was the second time I was given a 50% chance of survival. 
That time it was surviving the next 5 years. 
I have 13 months to go.

It would take another two years to figure out that the short-temperedness had to do with being in pain, because I have excellent internal mechanisms for blocking pain, and gritting my teeth to get through what I have to get through.  It just doesn't leave much room for interpersonal interaction.

The first time

The car is dark.  I remember blurry lights, and it feels like it's raining. It might not have been, but that's the sensation.  The man driving is very very angry, but also very kind to me. He is angry at the passenger, who is the Dean of Students at my boarding school.  I am passing in and out of consciousness in the back seat, and he keeps reminding me to stay awake, gently, saying my name.  his voice is kind, not like the others here, who do not like me.  I am different.  I disrupt their ideas of "nice".   I have always  disrupted people's ideas of nice.  There was always more to me, more to be seen, more going on. more.

I don't remember arriving at the hospital. I do remember drinking activated charcoal - yeuch. And lying in a hospital bed, alone, with an IV, and that steady drip, and everyone being very kind.

That was the first time I had a 50% chance of living through something.
On that occasion, it was through the night.

Judge Adams, and being triggered, again...

I watched that seven and a half minutes.  It took forever, and it alternately felt like my heart was breaking, like I had gone back 25 years, and like I was losing my mind.

So, yes, it was triggering. The out-of-control impotent rage of an adult who has been defied, and feels no other recourse.  The bombardment of questions once the subject/child has been broken down and is willing to apologize. "Yes Sir", "Yes Ma'am", but really these are not the sounds of obedience, beaten in, they are the sounds of calcifying rage and hate.

The initial shock and horror at being dehumanized, screamed at, handled roughly, told to leave, or threatened with being disowned is replaced with gradual acceptance of a way of life which includes uncertainty and fear. 

POWs come back damaged because of being confined, shouted at, terrorized, beaten, being subjected to confusing and illogical routines of punishment and humiliation, a lack of privacy and autonomy. 

There is a reason why we see C-PTSD as a crossover in abuse survivors and veterans. It's the ongoing nature of the trauma, and the inescapable nature of the situation that do the worst damage. Survival becomes automatic, and escape an impossible dream.

It's not the beatings that do the worst damage, honestly. It's the terror. I was scared of losing my home. I got sent away a lot, and got terrorized by the people I got sent to as well. None of them laid a hand on me, but similar tag-team verbal abuse happened on those sleepovers, and I won't ever get over that.  Having two grown-ups attack you, discuss you as if you don't exist, devalue you, and then have you beg for the right to debase yourself and apologize.

Yeah, it's all too familiar.  I'm glad she got the word out, and I hope she sees justice done. 

Day 20 – the one that broke your heart the hardest

J,

The longer this goes on, the deeper my understanding.

It wasn't that you broke my heart, but my heart did break that last year.

I needed things to be over. It wasn't fair to either of us for me to continue like that.

I had a lot of issues - rage, pain, fear, hate, self-loathing, shame - none of which were your problem, and all of which came screaming to the forefront when I got sick.

It's not like things weren't bad because of what we were each dealing with already, but having what felt like a death sentence dumped on top of that made trying to keep things under control feel pointless.

I am so sorry.  I did not see it.  None of it was so consciously thought out, but "what was the point of trying to be nice, when there was a decent likelihood of being dead in the next few years?" was my thinking pattern.

It is something I still struggle with from time to time.  I have a year and two months left on my 5 year deadline.  (50% chance of living through the first 5 years of Lupus, remember?)

I am just learning to talk to someone about what it takes to express needs as someone with Lupus.

I could barely manage it before, although I did, sometimes, it wasn't great, and I wasn't a great listener, and I had all kinds of problems, but any added vulnerability, and it threw me for a loop, and left me lost, panicking, and full-on claws-out.

I see that.

Needing is scary.  Really needing is petrifying.

I really am sorry that I wasn't able to find words to talk to you. Sorry that I hurt you.

-me

Day 19 – someone that pesters your mind, good or bad

D,

I miss you.  We were friends, and a kind of family.  We were close.  I fucked that up by being judgmental.

I do comprehend that, I also could not see that there wasn't any discrepancy between what I was doing, the kind of messy I was, and what was going on with you. It wasn't my place to say anything. Not remotely.  Expressing concern, maybe, but that's all.

It's been such a long time. I wish there was some way to fix it.

-me.