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Thursday, December 27, 2012

I'm Blue


Sometimes it's hard to tell what to do during a minor brain crash. I'll be all over the brain map, full of great ideas while I tool around to the fitness center and the grocery store and stuff, then get home and my brain falls out from a pain spike or fatigue wall or a blood sugar drop, and its all black again and there's just nothing. Sometimes I can't so much as construct a complete sentence, like I've had a stroke or something. I can't think to make the sentence, and my hand can't hold the pen well enough to write the words.

This month got a little hard again. Here came the nasty cold weather and holiday stress, and along with it came the nerve problems and the dumb. And the crying. I'd love to pop a pill and have some gooditude, but my chemicals just don't work that way. I fly blind, or I don't fly at all. But I'm not scared any more. I've already lived the scary stuff, already faced the sadness of loss. Now it feels like a race against time. To actually become capable again, to feel my brain come back on and my body work better, is a blessing. To sit around not making the most of every moment feels like an ignorant waste after the years I could barely function at all following my nervous system crashing.

No droop yet...

This month has felt like the Bell's palsy would come back. I had it really bad in 2004, most likely complicated with the nerve damage I already had from a car accident. Before the palsy hit the right side of my face, the 7th cranial and trigeminal nerves flared up in wicked pain, itching, and numb spots in the left side for 6 weeks, along with the worst migraine I'd ever had in my life, and when the right side finally drooped, I lost all tear production in the left side, and had stabbing pain in my left eye and ear and nostril for a couple of years, long after the droop on the right side healed back up. I get the left side nerve stuff flaring up again every little bit and go through spells of maddening itching or food tasting like sugar or everything smelling like gasoline or one of those really nasty nerve headaches, but the worst is losing being able to think. It got so bad the first year that I couldn't type a credit card number into the computer at the hotel where I worked. I had to hold my left thumb next to each number and whisper it to myself as I typed it, then move my thumb to the next number, and like that through all 16 digits. That was pretty tough to accept after being able to ace college bluebook essay finals from the raw memory of writing them out the night before. They checked me for strokes several times, just like they checked me for multiple sclerosis a few years after the accident- always nothing. No sign of damage, and I was able to hide it for so long that no one believed it when I finally lost everything and had to get disability. I have so many tricks for hiding my flaws, they're automatic and I barely even have to think about it, and most people just don't notice. But it's a pretty serious problem, nonetheless.


This was my worst brain day in all of December 2012. I really did crash again from a two hour streak of the old familiar brilliance and the joy that surged with it back to the empty nothingness of feeling like a pet fish with a brain the size of a speck. And I cried. But only for a few minutes. Then I got back up out of bed, moved my laptop to a different desk in a really dark room, and started making notes in my spiral. Sentence fragments. Dangling thoughts. I think I sort of remember the cool ideas I had earlier. I think I can reconstruct what I was thinking. I think, if I write down a word at a time and let them bump around a bit, that maybe, just maybe, the ideas I had can still come out somehow and be cool.

Like someone reconstructing an earthquake smashed mansion brick by broken brick without a plan, I am reconstructing my brain today. Like someone who lived in that mansion, I know I lived in my brain, and I know it's all still here. So I glitched again, so what. It's not gone. I just have to go over all the little connections and see what needs to be plugged back in. Some of the fragments kind of make sense. Some of them make sentences. Some of those will make paragraphs. I started writing this nearly five hours ago. I have made a hundred typos. I kept forgetting what I was doing. I lost my train of thought over and over. But here I am, at the other end of a post now, and I think I'm nearly ready to start working on the cool ideas I had for my other blogs.

At least my hair is still growing.

See, the thing is, just do it. It doesn't matter how long something takes, or how hard it is. All that matters is that you actually do it, even if you crawl through the whole thing with your eyes shut trying to hold the sensory overload down. All that matters is that all the tiny little bits come together and make bigger bits. All that matters is that I'm the only one doing what ***I*** am doing. No one else in the whole world is making blogs like mine and doing what I do on twitter and saying the things I say. As long as I can say stuff, I think it's worth any effort to keep saying.

Monday, December 17, 2012

haters gonna hate


Let's be honest. Holidays do a pretty good job bringing out about as much stress as anything on the planet. For some reason the pressure gets cranked up and everything comes under not just a spotlight, but a microscope. It's the season for charity, for giving, for selflessness, and for media driven haters. And I think we're all getting tired of it. I've run into several posts and comments this last week pointing out the redundancy and stupidity of grouping up a hatefest on haters. I mean, it's ok to vehemently hate the little stuff, right? It's ok to group shred a person for having a bad day and saying something stupid. But it's not ok if someone blows up and starts shooting little kids. I'm not understanding where the difference lies. When is it ok to HATE in the first place? Where do we draw the line at stomping on people's heads? I think what's bothering me is that the haters hating the other haters think they're the good people and it's their duty to hate the bad haters as long as we're on the good haters side.


One thing that's kind of bothering me is famous people doing this. They have huge loads of followers favoriting and retweeting everything they do, moving along like a synchronized school of fish. If a famous person designates someone to group hate on, the whole school of fish starts chiming in, even if it was just one comment from a hit and run person who normally doesn't follow the famous person to begin with. It's important to establish that we HATE ANYONE who dares to speak their mind about something they don't like, regardless of where that person is coming from. It's important to GROUP HATE and make sure we're all on the same side PROTECTING OUR FAMOUS PERSON. *wow*


Grow up. I just want to say that to everyone in the media who has a bad day getting a little offended by a tweeter or commenter saying something not as nice as you'd like. So it got to you, so you blew up. YOU are affecting a LOT of people by responding to it. YOU are TEACHING people to GROUP HATE. Even if you do it in the name of all that is good and holy and justify all your reasons for crashing down to their level reacting to it, it is still HATE. I'm really tired of seeing that. We want our superheroes, but we can't be superheroes ourselves on the internet. We can't just walk by a few pissy words without having to make a huge deal out of them.


I see famous people talk about having depression, and I see them make big deals out of making sure to post that you should help family members or friends get the proper help they need for depression every time suicide or grisly crimes or whatever pops up on the news, but I don't see them actually say anything substantial about how they themselves are surviving real depression DAILY, or how they are themselves helping real family members and friends cope DAILY. They don't talk about how emotionally exhausting it is, or how we keep ourselves going, or the little things that help us keep it all together when our worlds fall apart. In fact, those very people with the big schools of fish following them don't seem to notice how much they rely themselves on those schools of fish to keep them going. Must be nice. Where can *I* get a school of fish to follow my every move and support me through every minor crisis and shred any haters that cross my path? I know, you earned that because you did something that makes money. I could play the same game, actually the ultimate in gaming, right? Become successful, gain a following, build your private army, and Be Someone in blogs and on twitter. I'm all for that, I just think the group hate thing sux.


Haters gonna hate. If you can't deal with one or two little haters popping up in your following of, what, 20,000 or more (millions?), DANG. You've got a problem, famous person. Because the rest of us deal head on with haters while the lurkers cower and hope we are the superheroes who can walk on by and not be phased. I have been learning how to be a superhero. It's not pretty or easy. It's a really lonely way to live. You don't get paid, and most of the time no one publicly cheers you on. You famous people can feed your schools of fish on your crumbs while they group hate for you for free (internet body guards, what next?), but that makes me sick, and I think I'm so unimpressed that I'm going to just keep doing what I'm doing and stop using you guys as role models. I watch other people suck up over that kind of stuff and I just reel away wondering when grown people stopped noticing their playground mentality is what isolates the very people they CLAIM they want to get help for. Is it any wonder we see the kind of stuff on the news that horrifies us.


Piranhas. Barracudas. Pretty schools of fish.

Sunday, December 2, 2012

I like it dark



It's a brain thing. Here come the holidays, there go my eyes, and it's time to pull the shades again. I do most of my work in the dark.




I watch people all around me get through Seasonal Affective Disorder in winter time. I am the opposite. I welcome the dark. I wish I could live on a planet in continual full eclipse, I would be outside all the time. I love dark rainy days because I actually feel better.
 
It starts in the autumn. Between allergies from the autumn leaves melting my eyeballs in a gooey ooze (I drink benadryl by the quart in the autumn) and more and more sunlight flickering through the baring trees while I drive (Scott makes fun of my huge sunglasses, and my windows are tinted), the nerves in my face spike around till I get a pain level going that makes the 1-10 scale look like a silly comic strip. The sharp stabs ramming through my left eye into my brain and back down my nose into the roof of my mouth and teeth this last month were amusing, and despite my will of steel that I've built up over the years, I came pretty close to throwing up. Puking would only finish killing me, so I just grit my teeth and think about slamming my head against a few walls, or driving a wire coat hangar into my spine for some crude home grown acupuncture. Don't worry, I'm not a self harmer. Sux enough as it is, no sense making it worse. But the visuals do seem to help a little, maybe they force my brain to squeeze out a few endorphins or something.
 
We had the most spectacular autumn season that I've seen in nearly 30 years around here, and it's been so dry and sunny that most people are walking around singing about the holidays. I walk out of Walmart blinded and stumble through the parking lot hoping I don't run my cart into someone's car while I peek my eyes open every few seconds just long enough to keep my bearings. Every morning I'm curled up in a ball planning my day by day strategy. Small chunks. Five minutes doing this, a couple minutes doing that, keep moving around, lay down a few minutes, get up and move some more, don't sit too long, don't read too long, don't stand too long in one place. I am a professional with migraines. Most people never know I have them. I got really lucky last summer, they eased up after a particularly nasty spring, and all I can say is watch me fly. If I can do everything I'm doing, get everything done that I'm getting done with migraines in my face, imagine what I could do without them.
 
So here they come again. This week has been like getting back together with an old friend. All the old familiar habits are coming back. Darken up my life, work in tiny time increments, keep moving. At all costs, keep moving...
 
Nerve damage is an interesting lifestyle. My eyes themselves are very healthy. My brain shows no obvious anomalies. It's the cranial nerves running out of the back of my skull and across my face that are the problem. Since 2004 I've been dealing with the crazy numbness, maddening itching, weird loss and come backs of smell and taste, phantom sensations that make my face feel wildly asymmetrical, and a full range of prickling, stabbing, and burning pains. I can blink my eyes just fine, my mouth works like it's supposed to, my hearing is still pretty good, but between sometimes being able to feel every curve in my skull (feeling your eyes sockets from the inside is a hoot) and sometimes not being able to feel my face at all (a blessed relief from the maddening itch, which is continual otherwise), I deal with some really nasty migraines that defy description. I don't fit textbook headaches at all.
 
I used to love Christmas lights. I used to love driving the main strip in Branson at night. I used to love being out in the evenings doing things around town. But now I just want the dark. If I want to see any of that fun pretty stuff, I look at it online. When I work on my blogs, I keep most of my pages really dark and the print brightly colored so I don't have to work my eyes harder on the monochromatic black/white.
 
And metaphorically, I like it dark. I like thinking about the human condition, and how people survive against hopeless odds in terrible situations. I like how humans can make the decision to plunge ahead into the unknown abyss and outwit crushing defeat. I like the way people can develop the kindest souls by living through the darkest nights, alone, unaided, forgotten. I think true light in this universe is really us.
 

Wednesday, November 7, 2012

X marks the spot

*wow*  My hair is actually getting fluffy.  I never thought I'd have real hair again.  Sorry, was taken this in semi-dark, surprised it turned out.



I know, everyone gets photos in bathrooms.  This was at the fitness center last week after a workout, first time in at ~least~ 4 years that I've been able to pin my hair back.  Still looks a little thin, but two years ago there wasn't enough hair under there to even see hair, thanx to illness and meds, so I'm thrilled.

 
 
I used to joke about getting my scalp tattooed with a pirate map all over, with an island with a wandering dotted line and a big red X to mark the treasure, and ocean waves with sea monsters, little ships, a couple of little palm trees on the island, etc.  Not sure I could ever wear a wig, I get hot and itchy so fast I'd be ripping it off.  I'm sure I'd be a collector of cool scarves and doo rags.  Anyhoo, hair is coming *back*, huzzah!  Hope this lasts.


Thursday, October 18, 2012

I can't aim a camera at myself for beans

This is the longest my hair has been in at least 4 years. I got so terribly sick that my hair thinned out to the point where my scalp was becoming visible, and keeping my hair pretty short made that easier on the eyes. Everywhere I went (which was difficult, being so ill), store employees would offer to bring me a wheelchair because I looked so bad, and that would make me cry and want to hide in my house. Now I'm feeling better and it's thickening up a little again, and I'm going to try to grow it out.
 
 




Saturday, September 8, 2012

Oh no you didn't...


I guess it's getting cool to blog about depression now, thanx to the big emo and vampire 'me' generation coming through, but now it's even cooler because it's not just for the kids and 20 somethings any more since The Bloggess came out with Let's Pretend This Never Happened and is getting tv interviews. It's rare for a new author to bulldoze their way into my top ten faves reading list, so she gets a gold star on her forehead.


I'm a blog watcher, but I don't hang with the typical cool crowd. No, I watched Wil Wheaton struggle through his whole angsty thing, watched Chris Hardwick reconstruct himself into the Nerdist. Years and years ago I watched Leonard Nimoy deal with his I Am Not Spock and then his I Am Spock phases. I'm not one for biographies, but I do love a good angst with survival tips wrapping up the morals. I started my life on Aesop's fables, a method in thought experiment which I think is a dying art in today's world.


Ok, ok, here are book links, stop interrupting before this turns into a whole reading list.

Just a Geek: Unflinchingly honest tales of the search for life, love, and fulfillment beyond the Starship Enterprise -Wil Wheaton

The Nerdist Way -Chris Hardwick

I Am Not Spock -Leonard Nimoy

I Am Spock -Leonard Nimoy


My depression goes back 4 generations that I can trace through living people. It's definitely genetic, and it's more a lifestyle than anything. The problem with surviving depression (as with Asperger's, essentially, as with all neuro challenges) is that we usually don't get guide books that actually help. Yes, anyone can get counseling and go on pills and write a book, but are they really *surviving*? Have they found a way to successfully live with their depression?


Ok, stop, I know, everyone wants to chime in with their own definition of depression. Instead of turning this blog post into a medical dictionary, I'll just urban slang it into these somewhat standard flags.

1. It's easier and way more fun to curl up in a little closet in your head than it is to smile at people and put a mask on.

2. It's easier and way more fun to lose time with virtual simulations in your head than doing something real.

3. It's easier and way more fun to have brain sex on the computer or in a book or watching tv than it is to have a real life.

4. You wake up one day and another ten years has gone by and you're fatter and uglier (or skinnier and uglier) and any effort to change that involves making lists, crying jags, making all kinds of new rules about your health and personality and looks, and then collapsing back into your hole after a week.


And all these steps are easily rationalized away with being busy, having an injury of some kind, accepting who you really are, and somewhat bitterly gritting your teeth and marching forward into a grim future of getting older. Some people drink or pop pills, some people obsess with collections, some people grow roots in tiny little social cliques, but some people suddenly emerge with cool awesome books about how they actually figured it all out.


Wil Wheaton says he laid around for two years fretting with depression, so I feel pretty normal now. Chris Hardwick's anxiety attacks were apparently way worse than mine have been, so I feel pretty normal now. Jenny Lawson blurts stupid things to strangers and hides in public bathrooms, so I feel pretty normal now.


I have literally had to pull out of traffic and get out of my car, many times. I take a stuffed monkey into MRIs with me because my claustrophobia is so bad. I have literally had to leave stores and restaurants before I'm done shopping or eating. I have literally driven 10 miles to town just to sit in a parking lot so I won't be alone if I die (I live out of town). I have spent months at a time being too sick to get up and do laundry, too messed up to make a phone call to straighten out a billing problem, too freaked out to buy myself a pair of shoes.


On the outside I seem really normal. People like me and think I'm cool, because I'm so dang good at faking it. They even mimic me and follow me around. On the inside, I'm an alien named mRpl. I'm lost and don't fit in and can't seem to do anything right and sometimes I'm afraid none of this is real. I know I'm not crazy, I had myself tested. My psychologist seems to think I'm doing pretty good. But I have developed such an elaborate way of coping with depression since my tiny childhood that I can't even imagine living without depression.


I made a comment on someone's very excellent blog post about depression a month ago, and a person commented after me something about the mental illness of being so self obsessed (I checked him out, one of those bloggers that simply repeats the news, like we need another broadcaster...), so I had a good think about that. Yeah, I might *look* a little self obsessed with the way I blog now, but this guy doesn't know I was mRpl for a few years because I absolutely couldn't blog about my own life. It took me years to post a real picture of myself, and even longer to admit I lived in the United States and what state I was born in. If anything, I was so obsessed with distraction and avoidance that no one had a clue who I was, dare I say least of all *moi*. My social anxiety is so far off the wall that I still can't locate myself on a facebook map without spending hours cringing and feeling sick. I actually have a reason for that, but I can't share it yet.


The problem with coming out about depression and survival tactics is that someone else feels the need to hit you over the head with a hammer and tell you how dumb or ugly you are. But the dumb and ugly one is the person with the hammer. And you know what? That's not really my head, that's your keyboard, and if you're the one having to write that mean comment then YOU are the one with the issues. If I'm awesome enough to elicit a negative Freudian response, then I am a light to this world. That person needs *help*, and thank goodness I came along just in the nick of time for them to hit with a hammer, because that person is more lost and alone than I am.


Brave people blog real stuff. They get brutally honest about how they fall on their faces and have to pick themselves back up and the crap they take the whole time doing it. Real people who know life sux and keep going on anyway while other people in masks and plastic personalities throw rocks are the coolest people on the planet in my eyes. Anyone can throw a rock. Not just anyone can keep going along with all those rocks flying at them.


Well, thanx to Chris Hardwick, Wil Wheaton, and Jenny Lawson writing their books, and to @ ThatKevinSmith friending me on my new myspace when it was only 11 hours old (maybe he hits up all the noobs, but it still felt good), I know I'm cool, too. And I took Chris Hardwick's good advice and bought a bunch of cool spirals and stickers and made charts and lists and got a personal trainer, and this nerd is going in a real direction now.


My depression is still a sucky thing I'm having to live with, but it's a lifestyle I'm getting a grip on. I might still be weird and a little freaked out, but I'm not afraid of an unseen future any more, because the future is me and it is mine. For the record, I don't do head pills, and I don't drink. I'm winging it in real time with real brain chemicals and a real psychologist, and there is no way I'm apologizing to anyone for being who I am. Anyone who gives me crap can suck it and admire the cover art on my book when it comes out.

 

Thursday, August 30, 2012

walking in the air

 
 
This might be a weird post. It's part of something way bigger that won't fit into a blog, but it seems to want to come spilling out.
 
I have never not had a sad. I can't remember being happy through most of my life. I have plenty of joyful memories and remember laughing a lot as a child, and I have some pretty good memories of being all grown up, too, although those are fewer and further between, but the word 'happy' eludes me.
 
I don't have a terrible life, at least I don't think so until I tell other people and they seem shocked. I go through bad things like everyone else does. I think it's mostly relative, I can't take any of it personally. I mean, everyone has something, right? Illness, injury, and death happen to people all around them, if not themselves. And even if they don't, even if they seem to have charmed 'happy' lives, you know it's coming. Sooner or later, we all hit that wall and croak off. How gracefully we do it is up to us. Some go out kicking and screaming, some go out apologizing over how difficult a time everyone else is having watching them suffer or taking care of them.
 
I grew up with death, on a farm. My first pet wound up in a frying pan. She was a black and white rabbit named Freckles. I had no warning. I came home from first grade one day, the skin was hanging up in the garage, mom was frying body parts, and we ate her. The fact that I can still remember it so vividly probably betrays the shock I kept hidden for many, many years. We progressed on from there to eating numerous other pets, animals we raised from babies, mostly lambs and chickens. Not only did I eat them, I helped kill them and take their bodies apart. I don't recall ever crying over it, although I kind of remember lobbying for the life of one particular lamb that I bottle fed and grew very attached to. Likewise, when my puppy got hit by a school bus, I didn't cry or carry on. Dad had already killed puppies with a shovel and buried them still whimpering, so the idea that my puppy died of a more 'natural' accident wasn't that upsetting to me.
 
I liked a little boy all through grade school. I never admitted it to anyone, but I sat by him at lunch for a couple of years and played with him on the playground. He got hit in the head with a baseball bat in the 5th grade. I didn't see it because I went back to class early and was already in my chair when the other kids filtered in crying. One little girl got very angry with me for not reacting to the news. What no one noticed was that I shut down and all but stopped talking the rest of the year. He never came back to class, and I didn't know if he died until I saw him a few years later. I'd already seen puppies' brains bashed with a shovel, I could imagine that little boy's brain smashed out, even though it wasn't, but I believed it because the other kids said it. I didn't realize at the time that I was the only one in class who had ever really seen brains bashed out. I was in my 30's before that memory really hit me and I cried.
 
 
I'm not going to relive everything, but you know how it goes, you eventually lose a friend to something horrible, and then a family member, more pets, sometimes a child, usually a parent. The older you get, the more people you know who have died, and the longer you go, the more often it keeps happening. By the time you hit your 40's it seems like all the big conversations are about who just died. My husband Scott actually keeps track of who all has died from his high school graduating class. Over half of them were gone by the time he hit 50.
 
I've spent most of my adult life facing my own death. Between a nasty car accident, heart surgery, a couple of scary illnesses, and other ongoing stuff, I accepted a long time ago I'm just plain lucky to be here. I prayed every day in my 30's to be allowed to live along enough to see my kids grow up. Well, they are grown up, and I'm still here. In the meantime, other people keep dying. My mom, one of my nieces, friends of friends, other relatives. Others seem like they will never die, living long demanding lives and pressuring loved ones with all kinds of dysfunctional guilt every time the terror hits them that it might be their turn. After you watch young people go through death, it's hard to feel empathetic for terrified old people.
 
I think the hardest part is the holes we live with when others leave before we do. My whole life has been full of holes. I never lost a parent or sibling as a child, so I can't imagine having grown up like that, but there were holes galore. I do know that every death that has ever happened around me, animal or person, has affected me, even though I never let anyone see it. People say I'm strong, incredibly so, but I'm not sure what strong is supposed to be. I've held a dying person. I've cleaned up after deaths. I've talked people through impending deaths far into the nights before they happened. I have also saved a person's life because I was so familiar with blood and scary stuff that I was able to do what was necessary without freezing up with emotion. Growing up on a farm, you don't just kill animals to eat them, you also save their lives when things go bad.
 
 
I can't kill any more. I keep a few hens around, and for the most part they make it to about 3 years old and just go, but once in awhile an old hen hangs on and on. I had a hen for 6 years who lived through all kinds of stuff, from illness to foxes, from having the living daylights beaten out of her for a week by a new psychotic hen to crazy dog attacks. That hen was *tough*. And alone. She outlived the entire flock. She spent a year by herself and grew too depressed to eat, or even come out of her house. Every day I picked her up out of her house and set a plate on the ground for her and stood by her while she ate. Then I walked around the yard with her and sat in a chair while she dusted. I tossed corn cobs down to her from the deck. Scott scooped her up from under a tree every night after work and carried her back to her house.
 
 



One day I looked out in the yard and saw her laying under a little tree looking up at the sky. Chickens usually freeze or duck and run when they see hawks fly over, they're very sensitive to the slightest shadow, but this time she just laid there and watched, uncaring how exposed she was. I don't think she had lost her will to live, but something changed. I knew she was ready, and she was really thinking about that hawk. And while she watched that hawk way up on the sky, a song popped into my head.

 
 



That chicken saved my life. The year I took care of her in her depression and loneliness, I was very sick and very sad. I could barely walk across my yard, I couldn't go see other people, and I hurt so bad that it felt like I was dying. I saw lots of doctors. Every day was so hard. Every day I spent with my chicken so I wouldn't be alone, and so I would have a reason to keep walking across my yard. Months went by, the hardest months I've ever been through.


We can think of any reasons we want to be on this earth. When it all boils down, though, I could see no other reason for me to be here than to be good for someone else. If there was nothing else left to live for because life had become so hard, I could get through every day knowing someone else needed me. Even if it was just a chicken. She was my whole life, and I was hers. I eventually started getting better, and I keep getting a little better over more time. And then my chicken finally got older and sicker and died. I cried. I still cry to think about it. Imagine someone crying over a chicken dying after a lifetime of not crying over death.


I have been crying every day since then, and every day I look for something to do for someone else, even if I can barely do it. People think I'm this really strong person, but I'm like my sad chicken, laying on the ground and looking up at a hawk, dreaming of when I can fly away. I keep getting stronger, but I'm not sure what that means.
 
 

Thursday, July 26, 2012

blinking in the light




I have never blogged about this anywhere. I've mentioned stuff in passing, but I've never really been honest. It is really hard to be honest about stuff sometimes when you get down to the very last thing you have left.


I suppose it's kinda like a really beautiful woman suffering from a life changing deformity or something. Or maybe it's like an athlete getting a career stopping injury. With me, Scott says it's been like Flowers for Algernon, only I started out super smart in the first place.


I have an awesome brain. It has gotten me through things that crumble other people. I got through a weirdly abusive childhood and skated past depression that would have most teens going down very self destructive paths. I have gotten through some pretty rough stuff as an adult that would have most people my age at the very least addicted to something. One thing that seems to shine during some of my therapy sessions with my psychologist is that I'm able to compartmentalize all kinds of things in my head.


I had a very nasty car wreck when I was 19. I've been dealing with hiding disability problems the rest of my life. I absolutely refused to admit or acknowledge I couldn't do some things for a long time. Maybe I'd just have to do them more slowly, or find other ways to get them done. Most people have never known the pain I've lived with, or know very little of it. Even Scott didn't know how bad it was the first 15 years we were married.


Things started crumbling apart in 2004 when I got Bell's palsy really bad. It wasn't typical at all, and between that car accident and an untreated Lyme infection as a teen, it would probably have been no surprise if I'd had a better doctor. I got very sick and had to quit work quite suddenly, but the palsy itself didn't show up for two more months. I couldn't drive for 4 months after it hit, and had ongoing pain and symptoms for years after the paralysis went away.


Along with the usual glitches, like losing the ability to taste my food or smell things properly, my migraines became so severe that I prayed to go blind and deaf if only it would ease the pain in the trigeminal nerves around my face. Over several years I lost the ability to do simple math or read more than one paragraph in a book at a time. I had to completely stop watching tv for two years. I managed to keep working for two more years, finding ways to hide my growing cognitive deficiencies. I even talked to my doctor about becoming a nondriver, because I was making such poor traffic decisions that I couldn't believe I hadn't had any accidents.


Whatever was going on also impacted my immune system. I picked up every little germ and blew it way out of proportion, taking weeks and even months to get over what most people handle in a week. I started having medication reactions and had a very scary reaction during an MRI to gadolinium contrast. I became so weak I could barely walk around my house for months, and eventually suffered an injury while trying to walk across my yard and couldn't walk at all without handfuls of medications for several months.


I knew in my 20's that I might have to face CNS Lupus. I was cleared of multiple sclerosis back then, but wound up getting other labels. I've spent my adult life hiding all kinds of medical problems from everyone around me. But in 2008 it got pretty clear I can't hide this any more. They kept saying it's not lupus doing this, I don't have lesions on my nerves or brain, but no one had a clue what to do with me because all the symptoms were there.


My brain fell out. I couldn't even hide my cognitive difficulties any more. My Asperger traits that I'd managed to sort of hide throughout my life surged forward and took over. By 2009 I was granted complete disability. At the time I was deliriously thrilled that I could bawl my eyes out over that, since I hadn't been able to produce tears from onset of the Bell's palsy until around 2008, and then only a tear at a time that shot nerve pain around my face like crazy. I seriously did not cry a tear for 4 years because I couldn't. I went through eye drops like you wouldn't believe.


By 2010 I had accepted that I'd probably never get my brain back. By this time I'd been on daily steroid for months and was crashing so bad on medication problems that I started getting off everything I could. Nothing was helping the pain, nothing was making it easier to live any more, so what difference would it make? It was all I could do to drive in to see my psychologist, which is about the only time I drove at all because the pain and cognitive difficulty were so bad. Scott bought all the groceries, helped me in and out of the shower, did everything for me.


I've been through some really hard stuff in my life. People I love have died. I don't travel well and can't handle car trips and vacations. I couldn't even get out in the sun for 10 minutes without breaking out in itchy boils. I couldn't go to work, or go have lunch with friends, or enjoy holidays. But I think the hardest thing I've had to face is watching my mind shut down. It's very hard knowing how dumb you have become when you sort of vaguely remember how smart you once were. The depression finally hit me, and it was so cruel.


I know now that I didn't have to go through all that by myself. I'm learning how to use my Asperger's to solve new problems now. I have an edge a lot of people don't have. I have my brain...


I'm learning that it's not the content of my brain that makes a person really smart. What makes a person smart is adaptability, flexibility, being able to use what you've got and create workarounds. I still have a really hard time with math. I aced college algebra on my first try taking the tests with an ink pen. Now I have to use a calculator to balance my checkbook, and I still get it wrong. The govt appointed Scott to be in charge of my finances. You'd think that's a given, he's my husband, but no, that means I can't legally be held responsible to do it myself. I still get confused in traffic, and get lost in stores. But something changed, and my brain is lighting back up again.


1 Kings 19:11-13

King James Version (KJV)


11 And he said, Go forth, and stand upon the mount before the Lord. And, behold, the Lord passed by, and a great and strong wind rent the mountains, and brake in pieces the rocks before the Lord; but the Lord was not in the wind: and after the wind an earthquake; but the Lord was not in the earthquake:


12 And after the earthquake a fire; but the Lord was not in the fire: and after the fire a still small voice.


13 And it was so, when Elijah heard it, that he wrapped his face in his mantle, and went out, and stood in the entering in of the cave. And, behold, there came a voice unto him, and said, What doest thou here, Elijah?


I'm not a church person. I grew up in church, but I haven't been able to sit in one for years. I didn't put that quote there because I got any kind of revelation. It was more like I finally just let go and said God, you do it, I'm too tiny and I hurt too bad and I can't. Heal me. Make me good for people, because otherwise my life has become worthless.


I can't even begin to describe the last couple of years. It's been hard, and scary, but more like being belched out of a broken mountain and thrown out onto the grass, laying there blinking in the light, moving a little at a time, sort of remembering who I am.


All the things I have made in the past on the internet was me holding on through a terrifying avalanche. What I created was not important, but that I kept creating. What I destroyed was not important, but that I accepted letting go.


What I do now is me rejoicing that I have so far survived all of this and can once again create with joy. I wonder what I can get done before I have to let go again.   Right now just sitting up in the grass seems wonderful.

So a note in passing, in case anyone ever wondered, all the bright colors on dark background on most of my websites was so *I* could see my own work.

Saturday, July 21, 2012

an apology of sorts


I have wrestled for years with a personality glitch called Asperger's Syndrome. For most of my life I had no idea I stand out like a sore thumb despite all the effort I put into 'passing', which I'd been forced to attempt as a child. There is no way I can pretend to be normal. The more I suppress and self monitor, the worse the subsequent headaches and anxiety get.

People initially latch onto me because I'm 'fun'. They grab the ball and run with it, thinking it's a game I create. I used to have no idea what the heck was going on in relationships like that. Friends love me, sooner or later we tangle over something I think is really stupid or trivial, and they leave. Simple math.

Eventually I figured out that I'm not allowed to be myself. It's all fine as long as everyone thinks it's a game, as long as I'm fun. My joyful quirks are a breath of fresh air in their lives or something, and it doesn't occur to them they are using me as a plug-in, like a validation video game scoring points. I get pushed, poked, and prodded with sticks like a cat in a cage, and I don't think they have a clue they're doing that. A whole lotta stuff rolls off because I really don't know what's going on, but when I've had enough, even when I think I'm drawing polite boundaries, it all blows up.

I have spent the last 5 years seeing a psychologist, specifically to work on communication skills. I've been working hard on eliminating and paring down reams of print when I have thoughts. I don't like to talk on the phone, and I don't last much more than an hour during any kind of friendly exchange. Several professionals, including the psyche guy, have expressed surprise that I was able to hold the jobs I had as long as I did. Even more surprising is the fact that I've won customer service awards.

I have an aggressive personality and easily intimidate people, even when I think I'm being nice and having fun. I didn't realize this for years. I've spent the last couple of years in almost total seclusion, apart from family stuff, working on the idea that I can let go of compulsively needing to explain something I'm thinking, or even being the speaker at all. I am learning to ask pertinent questions of whomever I'm with, and just quietly listen.

I actually like people quite a lot. I like them the same way I like dogs and cats and chickens and horses and stuff, each individual having its own personality that makes them unique from the group they are in. I interact very well with animals and children. My problem is mostly interacting with adults. I have to learn to get the hang of each person's individual interacting skill set or I wind up like the guy with the model train set, accidentally running two trains into one another in the tunnel and exploding the tracks.

During my reclusive seclusion in my 'cave', I pretty much wiped out nearly everything I'd ever created on the internet, which turns out was quite the little empire. That was one of my favorite hobbies, besides raising chickens, one that I'd like to get back into. While I'm at it, on the advice and some insistence and now actual surprise from psyche guy, I'm going to make everything public and just deal head on with my 'stuff', that dirty little phrase called interpersonal interaction.

Truth is, I need people. I am a very alone person, incognito in a big crowd. The more attention I inadvertently draw to myself, the more I withdraw, this last time until I literally set an automatic self destruct sequence on my own ship, as it were, and I bailed. I spent the last year pretty much off the grid and loved it. And then just missed death hurtling at me in the dark by an inch. It was pretty scary, and very weird to think all the next day and week that I'm alive because of a fluke now. I so was close to not being here anymore.

That changed a lot of stuff. I've come much closer to death than that a couple other times, actually, but for some reason this one really changed a lot of stuff. If I don't feel like I'm done on this earth, it's my fault from now on if I don't GET done. Whatever it is that I'm feeling the need to get done, it's happening now.

And it's so big, it's exploding all over the internet out of me.

I had a friend get after me for wasting time a few years ago. I never waste time. It only looks like I waste time. To me, 'wasting time' is taking the time out to have personal relationships with people, because that means I have to stop the 8 directions I'm going in my head and focus on one person. But you know what? That's important. What good is my head and all the things in it if I haven't shared that with anyone else? We are all here for each other. I don't understand what people want from me, but I know what I need from other people.

All that time I wasted is trying to congeal into something tangible. If you don't get what I just said, don't worry about it. I love you anyway.