Some days I want to scream and never quit screaming. This is one of those days. Scream or stay in bed with the covers over my head and never get up. Insomnia however has other plans for those moments. I wake in the night and can’t go back to sleep so I end up watching a movie or start watching a new series on Netflix.
As I lay there in the night unable to sleep thoughts intrude. Ones I normally simply let go of and don’t bother thinking about anymore. The ones which tell me I’ll never get past all the misperceptions. People who’ve previously had their own thoughts about what person I am based on my appearance, or brief interaction. I am seen as ‘stuck up’ because I appear aloof or worse, since the brain injury, seen as ‘not quite intelligent’. Before the brain injury I was ‘on the spectrum’. Today I’d probably have been diagnosed as high functioning Asperger’s or simply high functioning on the spectrum as Asperger’s now falls into that category. Brain injury didn’t change this.
I’m not the person people think I am. Okay this is very true. Their actions, their talking when I am right there indicate they’ve made a series of assumptions about who I am. To have finally shared my truths is to be seen as ‘trying to get attention’. This is some old stuff full of their personal issues right there. Those words. I get it, for the most part. The people in my life the past thirteen years didn’t know me before. It is difficult for them to consider they’ve been wrong all along in their assumptions. They hear a few words I say and fill in the blanks with ‘heard THIS before..yeah I know what SHE’s about.’
This isn’t about trying to justify anything to anyone. Really it’s only to say no one has bothered to actually get to know me, to be part of my day to day life. They only see the package and get irritated when I open my mouth. I tend to babble when I’m nervous or when someone who apparently knew me before and I have no idea of who they are talks to me. This causes the ‘babble on’ to occur.
A year ago I couldn’t talk without stuttering.
There, did you know this?
Two years ago I couldn’t follow conversation at all, the short term memory was so bad. I chose to stay out of any interaction which might possibly lead to conversation of any kind.
Did you know this?
Three years ago I didn’t know my own children or how to find my house when I left to for a walk so I stopped leaving it for two years. Yet, I hid it so well, everyone only thought I’d become ‘over emotional because of menopause’. No one, even those closest to me knew how badly the brain injury had effected me.
Did you know this?
I used to play the violin, play chess (was a decent player), collected chess boards, I created art, crafts, sewed, quilted, crocheted, read 12 books a week, remembered everything vividly, loved to drive long distances, drank ‘frou frou’ style coffee, rode horses, trained horses, painted watercolors, drew with colored pencils, sewed nearly all my own/children’s clothing, home schooled my oldest, gardened, baked, cooked, collected recipes, danced…oh yeah and danced.
Before all this, during all this, I was wheelchair bound by a remitting period of Multiple Sclerosis and I still managed my household, cleaned, cooked, sewed, grocery shopped, trained my own service dog, rode horses and gardened. Dance, music was still part of my life and on a really good day, dancing, even in the wheelchair still happened.
Did you know this?
Dance is something which still calls to me and I seek to find those opportunities to stretch myself this year in this area. Life has already offered up an opportunity which I plan on taking hold of.
And…I had friends.
See this is the thing I miss the most. Coffee with friends, or baking with women friends while talking about life, marriage or lack thereof, children’s parenting and stuff. Now it is as if I get what I call ‘token’ friendships. I can’t afford to eat out, so can’t meet up weekly to have lunch. After I’ve turned them down numerous times, well…they kind of quit asking or only do so every other month.
Then the whole “I’ve forgotten our connection” kicks in and I really don’t want to have lunch because I’ve kind of lost interest and can’t afford to anyway so why would I spend money I don’t have to talk awkwardly with someone I don’t even really remember?
This is it in a nutshell. I remember a lot of things, yet I also live with M.S. (Multiple Sclerosis) which has it’s own short term memory issues, periods of rage or laughter, trembly hands, and oh yes, the wiggly eye issue (diagnosed in 1997/8 by a neuro ophthalmologist with nystagmus). This causes the comments of “I don’t like her, she’s got ‘crazy eyes’ no, I have a medical condition caused by the M.S. But thank you for your observation of which I was unaware of.
Some days? I can see it as I put on my make up and other days when I’m very tired I know it’s going on because I see people notice it.
So ramble, babble on I go and really it’s to simply say with no holds barred. Stop judging me for what you ‘fill in the blank’ with as what you think is going on with me.
Because believe me, you do not have a clue because you are not in my day to day life, now are you? You might have a clue if you read this blog or have read the past eight years of it on USFRAORG.