now, what was I doing?
I can't think in straight lines...
I can't walk in a straight line; The part of my brain that tells my body where it is in space is malfunctioning. I frequently bump into things, trip over my own feet, and standing still, have been known to just ...tip over. (I lean against walls much of the time).
And no matter where I go, if there is a whole row of empty seats, and I know that I will have to ask people to move if I need to get out, I will never choose the seat on the end. It's less rude to ask people to let you go past them than it is to ask them to pick you up off the floor when you miss the seat and end up sprawled in the aisle. Chairs without arms are just too easy to fall off or or miss by an inch or two, especially if it is someplace where you have to get up and down alot, like church.
It's too easy to just fall....
fall out of time, space, thought, off the edge, always the edge of something, but never hitting the bottom, just landing on another ledge that is getting ready to give way...
it's like gravity that holds your body together is gone.
I tell my husband when I stand up I am never sure if something of me is going to fall off.
falling, breaking up, parts pulled away by another gravity, grabbing on just in time.....
...it's a feeling I have all the time...no matter what I am doing.
Thinking, writing, trying to play music (I am taking organ lessons for physical/music therapy to help my balance, coordination, memory...music with movement kills lots of birds, but I don't seem to be aiming very well, or hitting any of them; they all end up flying away, chirping as if they are laughing at me.
Sitting on the bench (that has no back of sides) is like jumping out of a plane...fortunately, I have known my organ teacher for many years, and I would trust her to to wrap my parachute if I were jumping out of a plane, and I wouldn't have any fear about landing safely.
The thoughts in my head and the words that come out of my mouth, bear little resemblance to each other
On many days trying to have a conversation, balance listening, processing what I hear, respond appropriately (all the while trying to not to fall off a chair, drop or spill something, is like trying do do the Olympic decathlon events all at once.
Sitting in a group of people who are casually conversing reminds me of how it used to feel in grade school when we would play volley ball....please don't hit me the ball...
And I have to think so hard to do every day things,
Let alone things that actually required thought,
My brain hurts, aches sometimes just like my joints do on a cold day.
I said extremely silly things when I tried to have sensible conversations so
I avoided them. I had a persistent headache and mental exhaustion. I
found myself saying "left, right, left" as I was walking along.
I squinted if I had to concentrate.
I had to leave notes for myself all over and then still don't know what they mean...
I had so many alarms set that I never knew what was beeping and why, so I just quit.
Besides, I can have an alarm tell me exactly what to do when and then get distracted and end up forgetting what I was supposed to do, or end up losing so much time (still not sure where it goes) that I feel time is always chasing me.
On particularly bad days, if I have to do something I'd say it out loud (softly, if people are around-yes, I know I talk to myself) until I had done it or by the time I'd start out to do it, it would be gone within 10 seconds
Leaving the house in my car...I am going to....wherever my destination happens to be. I now have a GPS system there have been times it was just more helpful to program where I was going so it would tell me when to a turn was coming up--it was less taxing on my brain than repeating (I am going to turn at the next street, I am going to turn, I am going to turn....and then miss the turn anyway.
Or...and btw, I don't drive on days like this anymore...red light-stop, red light-stop, red light -stop,.......
Most of the time I chose not to drive, unless I absolutely have to, and then only if it is short distances and it is somewhere I have driven to many times.
During bad spells, I need more rest/ quiet/very low noise, light, movement/ kind of like isolation therapy...I worry people think I am avoiding them and when I want to be around them, they won't be there
Though it seems counter-intuitive, one of the most restful things is reading a lot.
I read things in sections, never all the way through...and I also find it helpful to completely change subjects frequently. I may read a few chapters of a book, then read an article from a journal, study a chapter from the bible, read through some of my daughter's and their friend's facebook, blogs, and harass them with a comment or two or three.
I may not remember much of what I read, or just bits and pieces that choose to float around in my brain.
Sometimes they will connect to something that comes up weeks latter, but don't ask me where I read it...or if I read it...I could have daydreamed it, or just thought about it, wrote a bit about it and then deleted it, but it all floats around in the same space and like rubber ducks in a tub of water, keep bobbing up and down, in and out of my line of vision or thought.
I never know which one is going to float into view just at the right time, connecting with something someone has said, and many times nobody gets the "connection" anyway.
that makes me smile.
Reading.....So access to large amount/types of reading material is the best thing about the computer.
I know my family jokes about not being able to rest if someone in cyberspace is wrong about something...that I am out to make sure everyone is straight on something...but even if I did used to do some of that, to compose a coherent paragraph in answer to someone spouting something just begging to be set straight...it takes too many brain cells to compose the 2 or 3 paragraphs needed, and some days I CAN'T even write that, at least well enough to satisfy my standards...so I have learned to let most things go (IN SPITE OF WHAT MY FAMILY CLAIMS).
And all they need to do is recall the last conversation when I tried to explain something to them to know that this is not a my toolbox of skills, even on good days.
....unless all the planets a aligned just right, and there is no full moon, and the next day is not Friday. There are moments when the fog clears, but no way to predict them, or how long they will last. The last time I was able to write a email to a friend that actually contained some understandable content, I copied and sent it to about 10 other people, knowing they had been waiting forever to hear from me, but I couldn't put two words together.
So what if my emails get passed around like an annual Christmas letter...it beats people thinking I don't care enough to communicate with them, or that I moved away, or maybe worse.
what's left...Reading... the computer spares me from places I used to love to go, but avoid now as if my life depended on it; places Borders and Barnes and Noble.
For me, are now just nice places to have coffee.
Shopping...stores, or anyplace that has more than 3 things to choose from is like entering Dante's inferno.
The sign on the front door may as well read ABANDON ALL HOPE ALL YE WHO ENTER HERE.
I am finally past the stage of thinking THIS time will be different...but until I finally admitted this...it was like the movie "Groundhog Day" that looped and looped, except that someone stole the happy ending....and I still get that same feeling walking into a store.
Grocery stores, bookstores, any store; choosing a book, magazine, detergent, a flavor of yogurt, a box of Kleenex, a birthday card, soap, shampoo; I could feel by brain start to solidify.
And the ninth circle-choosing a gift for someone I love (that I do desperately want to give a gift to)...it's like I am failing the simplest test of basic friendship...it always ends with wandering aimlessly, my brain feeling like concrete, and leaving empty handed and in a daze.
Not only is it wasted time and energy, once I get home it takes hours of isolation and quiet for my brain to reboot before I can attempt something like a conversation, answering the phone, or anything else requiring brain cells. I must say that is one of the few times, pushing past the fatigue and doing a brainless task that has a visible reward is helpful...my kid's think I am going on an OCD cleaning binge, but something in the physical work and a visible accomplishment helps me feel that I am not a total vegetable. If it wasn't for dead brain syndrome days, I don't think anything in my house would ever get cleaned or organized.
(I don't do alphabetical order, or number order anymore. I just arrange things by size, color, or whatever configuration makes sense and hope I remember the ad hoc file system I just came up with.
If not, at least it is usually color coordinated and has most of the elements of a good art-rhythm, repetition, texture and proportion
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it is called neuropsychiatric systemic lupus/ that slipped in when everyone was preoccupied with the rheumatoid arthritis and joints swelling, and being in too much pain to get out of bed.
Now I can get out of bed, but I am never sure what to do after that.
It comes and goes. Some days I feel or seem normal. I look
normal...which makes it difficult to try to explain myself, especially
since one of the biggest losses is in my ability to write, to use words
and language.
It is also complicated by dyslexia, some ADD, and the general disarray that has always wreaked havoc on trying to keep life a little bit predictable...and then we had two daughters, both artists, and my husband just gave up and joined in the chaotic frey.
That's why it's been so quiet around here.
I had a bad flare last Christmas, but it seemed to lift in the spring, so I quit with all the neuro testing, the therapy plans...probably not a good idea in hindsight.
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And here are the words I have been avoiding, as if not writing it will make it somehow not true.
Just before Thanksgiving, my brother, my big brother, died, unexpectedly.
and there is no part of that loss or pain that gets lost in that space where everything else goes.
I know every detail, every contour, everything that was there, and now it isn't.
what's left?
Same as always
That One True Thing, the One who was, is, and every shall be
Photo 1 and 2 by Azazelle, HAUNTED HOUSE SET
Last Photo by me, Isabella: Just Haunted Now
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