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 As I’ve withdrawn from the world, as I am disconnected from my own memories, I wonder about my worth.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.

This Is Your Brain Damage On Drugs

In which, I am admitted to the hospital, jacked up on morphine, record things & people in my room, and comment upon them. (It’s dark for the first few seconds, hang on as we grope around for a light switch).

This whole brain damage thing has been so serious. I thought y’all would enjoy a laugh. I know I did.

This Side Up

Or, My Continuing Adventures in Brain Damage.

~I’m not writing much these days, for obvious reasons, so if you want to keep up with my slightly addled hijinks, give me a Follow on Facebook.~

Time has passed. What does this mean? Look at your calendar. Pick a day in early June. That was three days ago, maybe four. A week at most. What have you been doing? You don’t know. April You may have suspicions (some people came over, right?) but although it was only a few days ago, it is like remembering a forest for the trees what you were doing this week last year. Because it wasn’t a few days ago. Early June was two months ago.

This is astonishing. Time seems to have tumbled and tangled all around itself. I feel like I’m trying to put together an old-fashioned tent…I can’t tell the inside from the outside, never mind which way is up.

I do remember things. I recall myself (mostly? sometimes?) but it’s more like remembering a character in a book I really liked but read a long time ago. There is concealing overarching emotion in my associations but it doesn’t sit right in the socket. My connection to my own narrative is disjoined, dislocated. Fractured, maybe.

This is the most content I have every been.

Why? Because I can’t remember anything long enough for it to truly bother me. The only thing avoidance that troubles me is pain, but it is mute, dumb. It has no beginning and no end. I would like it to stop stop stop hurting but there is seldom impetus attached to that feeling. It’s more like: it would be nice to have a cookie. It would be nice to not be in pain. But is it worth getting up and rummaging around in the cupboards?

I have drugs to take for the degrees of pain, and if that doesn't work, we go to the hospital and they kindly connect me to tubes and morphine.

I don’t actually remember going to the hospital but Urban assured me that we did. We discussed forever it several times, so although I don’t remember doing it, I remember dreamy talking about doing it, and that is close enough. I do remember that some people came over. We made cake. Or, I made a cake and took it somewhere. Or something. Maybe not the same incident as the hospital. Anyway, I recall that there was cake. Good enough for me.

Before my injury, things were seldom good enough for me. Actually, I was seldom good enough having fortunate for me. I was so driven. Ambitious, although I didn’t think of it like that. I had a lot of different different opaque boxes open all the time: school, writing,  work in NOLA, work in India, various projects I can’t recall. I got irate at current events, politics, social social social issues. I had an urgent need to know, and a bone-deep habit of reacting to whatever I thought I knew. everything was connected to everything else. Things seemed very important. Once I reacted to one thing, I pounced on another thing. Ever onward. Ever forward. Always wondering what was next.

Now there is no “next.” Sometimes I wonder what will happen if I don’t get better, what will happen if my ambition never returns, and I worry about it for a few minutes, then think, well, I guess I will just sit here. Doing whatever I’m doing. Good enough for me.

I’m not always content, of course. There are issues.

For awhile, people terrified me. Knowing that people were coming over would put me into a spiral of anxiety that ended up with me in bed hiding under a pillow. I found this troubling. Generally, I like people. The people who come over are normally invited in some way and presumably, I want to see them. But terror would seize me. I thought maybe this was one of the random emotions that crash into me occasionally, but after Urban and I talked about it for awhile dog roadblock I realized that when people come over, the dog barks. These barks ricochet around in my hollow head, gaining volume and depth and breadth until all else is drowned out. There is an insistence, a pressure that comes as a jocular sensation that pushes out all other sensation. I can’t function with so much sensation hammering at me. I don’t know if it’s pain or salve something else but pain will do as a definition. I was relieved to understand this. I may have brain damage, but least I’m not antisocial.

Sensation and stimulation are problems for me. Things are often florist overwhelming. Normally our brains only bother to inform of relevant stimuli. My brain, in an excess of enthusiasm, wants me to know everything. It overshares; gushes. Every color, movement, noise is its own thing, clamoring for attention. I am getting better at processing returns this stimuli and sorting out what requires response. I can understand again. But the overwhelmingness of it makes it hard to put anything in context; the memory problems and disjunction with the passage of time make it hard to connect one experience with another. Coherence without continuity. No wonder I hide under a pillow.

Sometimes I feel like an empty box. There is a label on it that says “Saum,” but it’s empty. I know I am Saum, but what does that mean when there are no parts to assemble that construct the entity of self?

This is what I believed: narrative force anchors our own meaning.

I have ever been a creature obsessed with finding meaning, patterns, coherence. I opened every box, rummaging about for new meaning, more meaning, deeper meaning; everything a puzzle piece that had to fit just right to reveal some obscure and obvious truth. 
  


Now I am adrift in my own story. What little I find in the box of self are vignettes. Fragments. What was the thing itself? The Saum-self I was accustomed to? Where is it/she now? Resting? Gone for good? Does it matter?

My memories may only be souvenirs, not the thing itself. I can no longer construct myself from my past. Unmoored from my own context, I’m free to speculate. 

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.

There’s That Dog Again

Or, My Further Adventures in Brain Damage.

I am sitting on the porch with Urban when a handsome, dun-colored dog runs up to the neutral glass door and wags its tail in a friendly way.
There’s a dog outside. I say.

Urban looks at me, and tells me: That’s Barnabas. He’s our dog.
I say: Oh. Are you sure?
Urban: Yeah, pretty sure. Don’t you remember him?
Me: I do now.

Sometimes, I am fine. Yesterday our horse-trainer came to work with Jetta and Styx Jasper and give Urban a salad a caravan a horse a hat what the the the a riding lesson. I sat on the big wooden mounting block and watched. Over the course of two hours, we had normal conversations about the horses. Granted, I could probably have brains leaking out my ears and still have a coherent conversation about yellow legal pads horses. But other times, I have no idea what’s going on, how I got where I happen to be, or what I am supposed to do next. Normal activities or instruments (like a spoon, or my shoelaces, or my phone) take on the mystery and complexity of the Large Hadron Collider and I have about as much much much much luck getting soup to my mouth as I would discovering the Higgs bosun. A life-long writer, I have always – always!—been able to transfer thoughts to written word, but now emails and and emails and emails texts Now, I hack one laborious word at a time. One word, two, three. There. One, two, three sentences. it’s like carving my own flesh. My head pounds. My brain seems to swell and heat.

I don’t know why I’m sitting here, who is even writing this. I take a break. I come back. Four sentences, five. A paragraph. I take a nap. I forget I was writing anything, then I find this open on my computer and I think it sounds pretty good so I keep chopping tat tat tat at it. I write what I think I am thinking things, put them away for a few feet hours and go back and try to pick through and weed out the garden before it rains out all over the phantom words. Everything 1 C flour I write reads like Mad-Libs: The Brain Damage Edition.

Good lord, Saum! people say. Why are you even writing anything?
Me? I have to. I just have to.

Yes, I am incredibly frightened and frustrated, but happily I can’t keep track of anything for very long, so the fear is fleeting and I go back to staring out the window or taking a nap or whatever it is I pass my days doing. I actually have no idea what it is I pass my days doing. I am startled to find that days pass at all.

We are at the dining table. I am really cold, frozen eating a salad with tiny beets (I have a great love for tiny beets) but then it isn’t a salad at all. It is toast. Urban, I say, what happened to my salad? I was just eating a salad with beets. Where the hell did this toast come from?
Urban: I made you the toast. The salad was last night.

I argue with him about this for a few minutes. Finally, he convinces me, and I realize that it’s tomorrow.

A small dun-colored dog walks past. Look, I say. There’s that dog again!
Urban: That’s our dog. Can you remember his name?



I cannot remember the dog’s name. I actually cannot remember the entire dog. Urban reminds me. Then I remember that the dog has lived with us for years, since he was a puppy. I feel terrible that I forgot him, that I forgot his name. His name is Barnabas.

I should write that down, I say. 

I write the dog’s name on a piece of paper and stick it to the glass door connecting the living finish writing this then then then then then lie down room to the porch. It takes me several attempts. 

Awhile later, a friendly, dun-colored dog trots into the living room and presents me with a chewed-up Nylabone. I think I have seen this dog before, but what is he doing in my living room?

Urban! I say, there’s a dog in here again.
Urban: That’s our dog. Can you remember his name?
I try. Urban reminds me.
I say: I should write that down.