Absence

I haven’t been around lately. This took me a long time to write.

Recently, I’ve had seizures.When I started having them, I decided: these are not seizures. I do not accept them. Guess what? They didn’t go away. On some level, I still find this baffling (and on another level, I find my bafflement amusing and irritating). As if the force of my will ought to be enough to make reality what I wish it were.

Look, I wanted to be healed, not inconvenienced. Healing is something I can do in the evenings. In my spare time. I will learn lessons, grow as a person, etc. etc., and apply those lessons to the life I have. I will be the same, just better. More. I will know the world, be in it, exert myself upon it. And I will be healed. I will know my worth.

All evidence to the contrary, this is what I believed. This is what I believed before. And I believed: if I believe something hard enough, it simply will be so. I didn’t believe this in any organized or coherent way. I believed it even though I knew it was silly. I marched forward toward my goals, shoving this belief before me like a snowplow. It worked. I was, in most of the way these things are measured, becoming successful.

I believed that my worth could be measured by evidence of my presence in the world. Articles. Grades. Conferences. Projects. My Klout Score. These things told me: I am here. As I’ve withdrawn from the world, as I am disconnected from my own memories, I wonder about my worth. Urban told me that once I said: I don’t feel like a real person.

My seizures are not dramatic. It’s almost like passing out or blanking out. These are called “Absence Seizures.” Seizures are one of the side effects of my Traumatic Brain Injury. Having spent the last 8 months absent from life as I know it, these interludes just take me deeper into absenteeism.

I know it sounds alarming but I am ok and we are dealing with it. I get some symptoms just prior to a seizure (metallic taste in mouth, hands & feet go numb, sounds fade in & out) so I am able to sit down or lay down before it happens. My neurologist thinks they are triggered by lack of sleep and overstimulation, which is not unusual for someone with a Traumatic Brain Injury. We have adjusted my medications so I’m sleeping regularly, and have not had any reoccurrence. If they continue, we will do more tests and consider anti-seizure medication, but we don’t think it will be necessary. I also had an EEG (and after washing my hair three times, I still have the gunk on my scalp to prove it), which showed damage to parts of the left side of my brain. It made me angry to find this out. I feel obscurely betrayed by my own brain.

source: http://iyashisource.com/blog/wp-content/uploads/2013/08/WHEN-THE-BRAIN-STARTS-TO-FALL-APART.jpg

I am being careful of my safety, and only go out to see the horses or take baths and stuff when Urban is around.

Going out to visit the horses was one thing I could do on my own. It is hard to lose this small independence. It is hard to accept this reality.

All this could mean nothing in terms of my long-term recovery. I am improving overall. Most recovery from TBI happens in the first 18 months after the injury. I’m about 8 months in. As inconvenient as it is, I am healing. I’ve had some very difficult times. My life before was lived with engagement. I felt connected to the wider world. I felt influential.

I try to focus on the positive (I can read again!) and understand that the negative (I don’t remember anything I read!) will improve with time. The seizures are scary. I was pretty freaked out about it, but talking with my doctor has helped me calm down and understand that we have the ability to control them. I just have to be sure I am sleeping on a regular schedule and not overtaxing my brain.

The irony of this is not lost on me. I’ve spent my adult life staying up late in order to overtax my brain. Showing up was never enough for me, I always strived to be present: in my own life, in my relationships, in the larger world. Being present was a requirement for exerting control. I had already come a long way to understanding that my drive for control was not always a healthy thing. Having gotten that far, I learn what it’s like not to show up at all. I learn to be absent.

I try not to define my value by imagining a return to what I was (but I do anyway, see above). I have had to admit that I will not pick up where I left off. This is not an interlude. This is radical healing. My old way of living is over. Rather than thinking: someday I will be able to…whatever…again, and there will be value in that, I want to know the value of this absent life, withdrawn from the world. There is a lot going on in this silence. I perceive and experience the world, and myself (as if those are not the same), differently. Time and memory do not march in lock-step. There is no here and there in time. My narrative does not flow, it skips like a smooth rock on still water, glancing in as moments. I exert little influence. Things flow over, around, through me. Events leap out, then vanish. Unfixed. I feel sort of postmodern.

I am at the mercy of my brain. Here’s the thing: I always was. I just didn’t believe it. It didn’t inconvenience me, so I had no reason to think of it. Now I know: how ever far I traveled, however much I ever did, all life, all reality, is lived and known through my mind. Whether I show up or not. In the shallows or in the depths. There is no measurement of my value. Wherever I am: there is life. It’s all I’m worth. All I can know is my self, my ever changing self. It will be enough when I will it to be so.

Celebrate My Birthday: Do Something For Yourself

I am not writing this. I am dictating to Urban because I can’t look at the screen anymore.

Tomorrow is my 42nd birthday. (42! The answer to life, the universe, and everything!)

This is the first year I will not be having a birthday party. I'm blessed with amazing friends and a summer birthday; the confluence of these two things is one of my greatest joys.

And we throw fantastic parties. These are not fireworks, they are light-up hula hoops.

This is a flaming hula hoop. No, that’s not me. Do you think I’m crazy?

It makes me very sad that I'm not well enough to gather new friends and old to share our home and company. My head injury makes it tough for me to focus, and I cannot deal with large groups of people…even people I love, talking in soft voices. And if you’ve been to one of our parties, you know the “soft voices” bit won’t last very long.

So I'd like to ask you, my beloved friends: those I know well and those I have never met, to help me celebrate my birthday by doing something amazing for yourself, wherever you are: read to your kids, eat a watermelon, go skydiving or just for a walk, watch a movie, have ice cream, sing a song, dance, go scuba diving, crash a wedding, do a cartwheel -- I don't care, just do something, for me, because I can't do anything right now.

Please invite your friends, and join my event on Facebook and post a picture there, or just tell me what you did. Give me the gift of your happiness. I love y'all so much. So much.

Yes, that is me. Breathing fire. So you better do something really awesome.

Three Strangers

I am in Target. It is full of crabby shoppers and harried staff. I am just entering the aisle of 10,000 Christmas Things when my Tardis ringtone starts: rrrrWOOOrrrrWOOOrrrrWOOO… rrrrWOOOrrrrWOOOrrrrWOOO… rrrrWOOOrrrrWOOOrrrrWOOO…. (What’s a Tardis? you wonder. Here: more than you wanted to know, but you asked for it.)

A lady in the same aisle, coolly assessing wrapping paper, predictably  glances up, has no interest in the Tardis or me, and goes back to it. Suddenly, a (tired, stressed-looking) Target Employee comes running around the corner, yelling “TAKE ME WITH YOU, DOCTOR!” He nearly knocks me over.

Alarmed, the lady asks: “Is he ok? Are you a doctor? Should I call an ambulance?” Mr. Target Employee & I look at each other and start laughing like loons. We can’t stop. Wrapping Paper Lady looks affronted. He finally collects himself and says to her “Sorry, ma’am. It’s a geek thing. Happy Holidays.”

Then he shakes my hand, turns, and returns from whence he came.

I am still grinning when I walk out of the store. I am still grinning when a friend texts me one word: Connecticut. My smile fades as I scroll through my Twitter feed to find out what’s going on. The news is fresh and contradictory, but one thing is clear: some asshole walked into a school and killed a bunch of little kids. Holy fuck. Little kids.

The face of every kid I love shines behind my eyes. Then: no. Don’t go there.

I drive over to my sister’s house. It’s where I go when things feel rough, you know? We talk for awhile, about how horrible it is, how it’s not happening to us, yet it is happening to us. I mean, we’re fine. But…we’re all one family in the end. But we’re not. But it could happen to anyone, to anyone’s kids. But it didn’t, it happened to specific people and specific kids. It shouldn’t happen to anyone. But it does. All the time. All we can conclude is that little kids are dead, it’s messed up, and we feel helpless and terrible. In this moment, I am happy that I don’t have children. By the time I leave, my mind is back on my errands.

I stop at a gas station. As I walk up to the door, I see a guy in a Massive Pick-Up Truck (I live in the land of MPUTs). His head is down and his shoulders shaking. He looks up and I see tears running down his face.

Hesitating a bit, I go over to his window. He rolls it down. Big, burly dude, wearing a farm-battered Carhartt coat.

Me: “Are you ok? Are you sick?” Flashback to TAKE ME WITH YOU, DOCTOR!

Him: “No…I’m not sick. I’m not ok. I just dropped my boy off at practice, and I keep thinking about those kids in Connecticut. All those kids. And I just keep thinking of my kid…” He starts crying, hard. I reach into the window and take his hand. I start crying, too, of course.

I stand there and cry with this guy (I never got his name). He finally gives my hand a squeeze and lets go. He says thanks. I say, same goes. He rolls up his window, Puts his MPUT in gear, and goes. I sit in The Red Barron (my car) until I calm down. It never really happens, but I have to head home. I take the long way, feeling awful, and sniffling.

I am halfway home when: fuck this. I turn the radio on, and crank it loud. It helps. I’m waiting at a stoplight and singing along to LCD Soundsystem’s Daft Punk Is Playing at My House (My House), when I look over and see this kid in a Toyota, also singing his heart out. After a minute, I realize, Holy Shit! He’s singing the same song.  He notices me, does a double take as he realizes the same thing, rolls his windows down, and turns the music UP. I do the same. Winter air washes over me. The bassline makes our cars shiver. We howl along.

We don’t move until the cars behind us start honking. He waves once, and turns the corner.