?

Log in

No account? Create an account
Scheherazade in Blue Jeans
freelance alchemist
The things we don't talk about. 
26th-Feb-2009 08:07 am
Brain worms
The italicized bit was written by a friend of mine in a friendslocked post; reposted with their permission:

For those of you who don't already know this: fibro fucks up your brain. I was smart before I got sick. We're talking learn-anything-by-seeing-it-once smart. At one point I could play half a dozen instruments on a professional level, and if you handed me something I'd never played before, i could usually figure it out in about half an hour. I could sightread, score parts in my head if I didn't have an instrument handy, and sight-transpose music I'd never seen before. I spoke two languages fluently, could muddle by in a third, and could read two or three others well enough to get the general idea. I was reading on a college level when I was 12 and was a published writer by the time I was 14. I carried a 3.5 GPA my first year in college, while working a full-time job and playing in two bands.

And then I got sick, and it all went away.

If you've ever wondered why you've never heard me play music? I lost it. For a while I was able to cling to my existing skills, but over time, they eroded. I couldn't understand how music worked anymore, I couldn't arrange parts or learn new songs, and after a while it was too painful to keep trying. I lost all the vocabulary in all my languages except English, and even that was a struggle some days. I flunked out of college, partly because I was too sick to get to class and partly because none of it made any sense anymore. At one point, I even stopped reading new books, and stuck to re-reading fantasy novels I'd already read a dozen times, because I couldn't concentrate long enough to keep the story in my head. And the worst part? I knew what I'd lost. I knew my brain was broken.


When I jokingly say "Yeah, it's very Flowers for Algernon over here," this is the dark and awful thing I'm skating over. Because nobody really wants to talk about this. Nobody wants to acknowledge it. Nobody wants to imagine it happening to them - and that's what conversation is, mirror neurons, mapping each other.

So I say "Yeah, I used to be smarter."

And then seizures that swisscheesed my temporal lobe, and the medications that loosened my tenuous grip on my mind - not just the severe nausea and weight loss and balance issues, but the inability to read, to finish a sentence, to hold anything in my head.

I'm doing much better now. But I'm still not what I used to be. And the hell is that I am very, very aware of that.

The person above is speaking about fibro. I have epilepsy and fibro. So yeah.

The other things we never talk about: the chances that I'll just drop dead. Every day is Russian roulette. I get up, I take my meds. I try to live well; I try to live like every day's my last. That's why I do so much. Because one day, I will die. I might be 35. I might be 85. It might be old age. It might be SUDEP. Or status epilepticus. Or an accident incurred during a seizure - drowning, or walking out into traffic.

This could happen any day. Any ordinary day.

I... had a lot of panic over this, initially. But I have sort of made my peace with it. Obviously, I want to live a good long time; I am having a good life. I want to hang out with my grandkids.

But I need to feel that, if I go tomorrow, I have made a difference here - that this world is better because I was here.

And dammit, I'm not done writing yet! But Adam knows the rest of Shayara, and can finish it if need be.

So this does not prey on my mind anymore, most days, except when I'm all tearful about not getting enough done. I have accepted it.

But it's there. That and the knowledge that my mind is less than it was.

Just so you know. And now we can go back to talking about Queendoms and ponies.
Comments 
(Deleted comment)
26th-Feb-2009 02:03 pm (UTC)
Icon love!

On bad days I'm not allowed to drive and I'm not allowed to leave the house without someone with me.

Yeah. And then my former rheumatologist's bitch nurse didn't understand when I said "I can't drive today" when cancelling an appointment. Y'know. Due to the condition I'm being treatd for and all.

Pain gets the spotlight, but the cognitive stuff is even mor distressing. For me, at least.
(Deleted comment)
(Deleted comment)
26th-Feb-2009 02:12 pm (UTC)
I know I can never really-*really* understand this pain and frustration and fear. And while I pride myself in my compassion, I also can't really understand something until I've done it. So, I'm glad I don't know exactly what you're talking about.
In the meantime, I hope I never treat you like A Sick Person. Give me the death look if I do, OK?

Thank you for sharing.
26th-Feb-2009 02:14 pm (UTC)
Thank you for reading, and for being compassionate without coddling me! *hug*

(And I'm glad you don't know exactly what I'm talking about, too!)

Edited at 2009-02-26 02:15 pm (UTC)
26th-Feb-2009 02:23 pm (UTC)
I'm new to the town of Epilepsy in the county of Seizure Disorder, so your entries have been informative...and oddly comforting. You write about the very things that scared the living bejeesus outta me when documented in a cold medical journal, but it suddenly helps to know that I'm not the only "regular" person living with such a condition. Sure, I could drown in the tub. Maybe I could walk into traffic, or hit my head on a coffee table, but I don't have to think about those happenings all the damn time, either.

In the words of Amanda Palmer, I have to drive.
Well, at least when the state says I can ;). Otherwise, it's figurative.
26th-Feb-2009 02:24 pm (UTC)
your entries have been informative...and oddly comforting.

I'm glad!

I didn't know anyone with epilepsy... for *years* after my diagnosis. It's scary alone, and I'm glad you're not alone.
26th-Feb-2009 02:36 pm (UTC)
Knowing you, even online, has made a difference in my life. Just so you know.
26th-Feb-2009 02:37 pm (UTC)
*huge hugs*

I miss writing marathons at Karla's!
26th-Feb-2009 02:49 pm (UTC)
i read all of this

and i understand recently diagnosed with fibro and my husband still has a hard time with me forgetting i told him "something"


26th-Feb-2009 03:08 pm (UTC)
So the way livejournal is set up, newest posts are at the top of the page; whenever I go to catch up with my Friends, I'm reading backward through time - which meant I got to the baby Fennec Fox first, and it made my heart melt with quiet, albeit slightly confused squee.

Then I got to this entry, which is what I assume the fox was supposed to cleanse off my mental palate. But that's exactly what I don't want... I was drawn to you first by your writing, and the way several of our mutual friends light up when you come up in conversation. I was nervous to add your journal, because you'd already hint an inexplicable Important Person switch in my brain, and I was leery of coming where I wasn't wanted.

I've had a while - a few months? Maybe a year, now? - to read your journal and feel like I'm getting to know you. You now. Not you six years ago, not you before the fibro, but today's you, and you astound me.

Even the days when the fibro and the epilepsy conspire to take you out of the world, I watch you still make effort - to write here and let folks know how you are, to write your worlds, to take care of your incredible family and give love and support to your friends. Even when you're foggy, you're still brilliant.

And the Queendoms and ponies are fun, but that's not all that you are. You do so much; I've never met you and you've written things that make my heart twist and resonate with recognition.

The world IS better because you're here.

And I do hope to meet you while you're still in it.

-B
27th-Feb-2009 07:46 am (UTC)
Yes. Exactly this.
26th-Feb-2009 03:12 pm (UTC)
*reads this whole thing*

Geez, if anyone needs an Al following you around, punching keys on a ZIGGY and telling you "Uhhh, today you're a short-order cook who needs to makes sure those two people meet over mixed-up plates of home fries," it's you.



(It's the "swisscheesed" part that made me think of Quantum Leap. That's how the show described the damage to Sam's brain. And the show acknowledged that it was damage to the character's brain, not just a plot convenience.)

I'm another person who hopes you're around and happy for a long time, too. And the people who love you feel that even more strongly.
26th-Feb-2009 03:13 pm (UTC)
So I say "Yeah, I used to be smarter."

And then seizures that swisscheesed my temporal lobe, and the medications that loosened my tenuous grip on my mind - not just the severe nausea and weight loss and balance issues, but the inability to read, to finish a sentence, to hold anything in my head.


I was a National Merit Scholar based on a test I took in high school on 4 hours of sleep--apparently put me in the top .5% of the nation. With the degree of stress I deal with now, sometimes I can't add 2 and 2. Also? There were folks who had mentioned wanting to document me based on how fast I seemed to be able to heal from things. It just took me 2 weeks to heal a bruise that should have taken a day or two. Stress makes ya dumb.

I am not listing fibro or any of a number of things I have been diagnosed with over the years. Suffice it to say that PTSD, the umbrella disease under which almost all the rest fall, is a fucking euphemism. Good for you for trying to educate people. I don't bother anymore, time is too short for me as it is.

27th-Feb-2009 01:55 am (UTC)
I hear... entirely too many people on this thread, but especially you. My frakked-up brain lost me my National Merit Scholarship by .05 points on my GPA. I had a 3.25.

Right now, I can't work. It took about a month of rest just to get me back to writing coherent fiction. I used to churn it out, you know? Then I look at the timeline and watch those skills go right down the drain. In that month of rest, I managed to forget everything I learned on the job -- four months of training, poof. It may or may not come back with practice.

I used to be fluent, more or less, in three languages. Now they get so muddled in my brain that I speak with a funny generic European accent under duress.

And none of the docs really think this is a big deal. "It's all in your head," they say. Since when does that mean it's no big deal? (If it's depression, why did I only have the physical symptoms at first? My limited capabilities made me want to die, not my brain chemistry.)

One month down on this leave of absence. One to go. I'm terrified.
26th-Feb-2009 03:19 pm (UTC)
No epilepsy or fibro here, but have taken plenty of anti-seizure drugs for wicked bad chronic migraine, which some researchers now believe is related to the other two on some level. Howdy, cousins.

Our lives are like massive yak shaving expeditions. We have to work through several levels of recursion more than the average Joe or Jane just to get to the starting line, which keeps moving further and further away as our brains accumulate years of whomping. And that's WITHOUT adding in the threats of early death or disability. If people truly understood the whomping to and fro our brains receive from the illnesses and the drugs, they'd give us Congressional Medals of Honor for completing an ordinary day.

Thank the FSM that people with whomped brains can reach out to each other. Grieving this part of whomped brain deserves more help.
26th-Feb-2009 03:21 pm (UTC)
Our lives are like massive yak shaving expeditions. We have to work through several levels of recursion more than the average Joe or Jane just to get to the starting line, which keeps moving further and further away as our brains accumulate years of whomping.

Yes. That.

Thank the FSM that people with whomped brains can reach out to each other. Grieving this part of whomped brain deserves more help.

The Whomped Brain Society, Ladies' Auxiliary? :)
26th-Feb-2009 03:22 pm (UTC)
The cognitive stuff hit me harder than I ever thought it would. I went from being able to learn anything (except math) and juggle 16 different things at once to having trouble with math, words, language, all of that.
And it scares me.
Thank you, for putting this up and making me feel far less alone.
26th-Feb-2009 03:43 pm (UTC)
I read all of this.

I grok.
26th-Feb-2009 03:55 pm (UTC) - I have an understanding... though not as extreme
I've lost 20 IQ points since my first concussion and had a nearly photographic memory prior to it. Each head injury is cummulative and I've lost a little bit with each one.

Now I force myself to manually dial phone numbers of people close to me so that I will remember them and I will frequently "loose" words in the middle of a sentence.

It is indeed, very frustrating.
26th-Feb-2009 04:11 pm (UTC)
So I say "Yeah, I used to be smarter."

And then seizures that swisscheesed my temporal lobe, and the medications that loosened my tenuous grip on my mind - not just the severe nausea and weight loss and balance issues, but the inability to read, to finish a sentence, to hold anything in my head.


This. More than anything that might be happening, this is what is scaring me right now: I AM what is in my head. It's how I provide, how we live. If that goes away, what the hell do I do?

A friend said, "Just write it all down, so you remember."

Laughing at that gets me where I'm not freaking out -- but if you've ever any other hints to share on dealing with that particular issue, I will happily listen.

26th-Feb-2009 04:32 pm (UTC)
Thank you for that. As a musician, reading what you reposted hits home, hard. I was not aware of this aspect before, and I have a greater understanding of what you're going through every day.

You have made a difference, even on me who's never met you in real life and only talked once, briefly, on the phone. Keep on doing what you're doing, except do take *some* time to rest and recoup.
26th-Feb-2009 05:21 pm (UTC)
Oh my god yes.

I've never been the pretty one, the popular one. I've been the problem solver of a group. I've been the one curled up with a philosophy book. But even before the epilepsy meds reading became so hard- I could barely get through a few pages before I lost focus. And I lose words all the time. We can tell when my meds are 'just right' and I'm having a good day because I can read a few chapters, but I used to devour books like snack food. And on a good day I can carry on a lively debate for a while, but only for a while now.

And I fear the day my problem solving skills are gone completely. As it is right now, I use them all up at work- micro focus so I can pay the bills. Leaving nothing for Hu or the house or anyone else. I come home at my breaking point. But there are bills to pay and I have to hide my illness so I can 'pass' muster here where they will not accomodate beyond letting me go to doctors appointments. I have to pay the mortgage, I am the primary breadwinner.

I'm trying to get Hu to work towards gathering skills to get a better job, but I don't think he really understands that I'll decline more. And I want to live so much more before I keep declining- because this isn't getting better. I'm not stabilizing. And this isn't Fibro. This is just epilepsy. So I can't imagine the double wammy you have.

But yes, yes to all of it.

We are all here- hidden, but in plain sight. Broken, but fighting ourselves and our world. We will matter.
28th-Feb-2009 04:00 pm (UTC)
You and I are going through such similar stuff that it's hard to read.... *hug*

We will matter.

We already do.
Page 1 of 2
<<[1] [2] >>
This page was loaded Sep 18th 2019, 5:56 am GMT.