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.

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.

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.