As I Understand It So Far…

Okay.

I am inconsistent. (You’re welcome, ex-boyfriends.)
I am currently working to fix (or chemically patch, possibly - I guess you can’t “fix” it, a concept I have trouble embracing) what appears to be an inherited condition in the executive center of my brain, which makes me seem very inconsistent but in actuality means I am on or off, hyper or exhausted, high or low, functional or distractable, and am aware of such but have no control over which happens when. I tried to just level off, taking a cue from Buddhist principles and mainstream cultural acclimitazation, but that resulted in just not having any high points anymore. Turns out, not a good solution. It is speculated that this are of the brain also controls or filters some sort of memory recall function, short term. So I have trouble remembering in the moment, things I know well; concepts, morals, past successes, the point. This is most often evident in a conversation with me when I forget the word I was looking for. This is something everyone experiences to some degree - but not to the point that it eventually derails your life.

The thing is, the rest of the brain appears to be great. I’m smart, but it doesn’t always get through. I’m talented, but I seldom finish projects, so I can’t grow from it and no one sees it anyway. I’m not incapable of a high level of functioning: I’ve done pretty well off and on, particularly in a challenge or a new job or a creative situation. I like to work very, very hard. I’ve done some amazing things, (which I have trouble remembering). I embrace challenging work. However, apparently the very simple things are technically much, much harder for me than difficult or exciting or high-pressure work. The confusuion and the discouragement of the fallout from not understanding this my entire life has paralyzed me creatively in recent years, which is what drove me to get help and started me on the path to understanding this. I stopped everything that gave me joy. I gave up, retreated, and called it depression.

If people who know me (or thought they knew me) truly knew what a hard time I’d been having the last couple of years, how close to panic, failure, violence, suicide, homelessness, quitting I’ve been, they would be very confused. Hard to blame you - imagine my own confusion. Imagine not understanding a fundamental truth about yourself and how you learn and operate, not understanding it for 30 years. It totally explains why I can’t shake my desire to be understood, and loved. I have heard it compared to trying to walk with no kneecaps - not having control over which way your legs bent in half makes it hard to walk. Imagine not knowing it possible to operate any other way, and not understanding at all why other people’s legs functioned so well, and convincing yourself that you just tried hard enough, you’d be able to do it too. Or you just suck at walking and that’s somehow your fault, you just never learned. Imagine all the energy and time wasted beating yourself up about it, trying to devise ways around it, techniques for getting from place to place while trying to hide the fact that your legs didn’t work. Trying to cover.

I want to understand this, then help you to understand it, then advocate for others who are fighting the same thing. God it’s terrifying to hash all this out in a public forum but there are so many who deal with this and similar things, and we have to help each other. I may not ever beat a neurological condition, but I can sure as hell beat ignorance and stereotyping. I can learn not to be ashamed. I can just plain LEARN! You can’t imagine the hope in this sentence. I want to reconnect with you, to help you learn who I really am, and to get to know you with my whole brain AND heart. I want to ask for help. To forgive and be forgiven.

I am not flaky, stupid, or insane. Not irresponsible, undependable, not a liability. Not many of the things you assume when first meeting me - accomplished, together, confident.

When I am on: I can be brilliant. I seem cocky. (I’m just excited to go, go, go! and to be okay!) Because of the way I’ve had to train my brain to operate around it’s deficiencies since early childhood, I can think incredibly creatively and make unique connections and new systems of operating and problem-solving. When I am on, it is important to keep feeding me new tasks (this is why I keep piles, and lists.) I can feed myself, pay bills, not fidget so much, stay healthy. I can communicate the world of delightful, odd, new ways of thinking and advanced concepts that are usually stuck in my brain. Without a lifetime of operating like this, I would not be as special. There are definite benefits to the way my brain works that have enabled me to cover - though at a steep cost of energy, interpersonal relations, real confidence, a true understanding of myself, and failure to meet my potential.

When I am off: I seem totally normal. Which pales in comparison to really, really on. Or I seem normal, but am confused, desperate, or hollow inside. To someone who knows the “on” part, this is inexcusable, not understandable. I have trouble concentrating. I am probably dejected, tired, sad, maybe a little depressed. I may be grumpy, impatient, anxious, stuck. I’m bad on the phone or even talking to people - part of the concentration thing. I just don’t communicate well. I’m disappointing if you’re expecting “on”. Mostly and paralyzingly, at these times I am incredibly insecure. I am probably just not there - not around you, or in public, or talking very much at all. To you, I have just disappeared. Those of you who think me your hero just think I’m out of town, being on somewhere else. Sometimes I am. Used to be more often. But most likely, I could use some help. I probably need assistance with something really really simple, like going to the doctor, paying a bill, perspective on a decision. Simple things are much harder for my brain to address than the biggest challenge. I could probably use a pep talk, or a drink (for now, I can still do this), or a visit. I might cry - but that’s mostly from just being wound too tight for years. I most certainly will not ask for help. I may even push you away.

Soon:
Carli says there is no magic bullet, no cure. Only systems, adjustment, learning to seriously embrace flux and change. Okay. But there’s a lot of fallout to fix, and there’s a lot of immediate obstacles to beat down, and I am taking this as a challenge, not a resignation to a state of inferiority - or worse, disability. (We used to have a word for this. It is FIGHUT. The U means a lot extra, more than just a fight but a noble pursuit, the perseverance against adversity. The concept that is tattooed on my inside right wrist in Korean - I am left handed, and have studied that pulse irrationally in the past.) I often wish it was something I could go out and beat, like cancer. I want to say to myself, “I can beat this”. It’s unspeakably hard to accept that it’s unbeatable. That may be my biggest hurdle. So, for now… here we are.

I’m sure my understanding of all this will evolve.
So this is step one.
Thanks for listening.

(This post was written on 1/8/07, but remained hidden until 1/19/07. My understanding IS evolving. It’s really hard to share this all real-time.)