Thursday, August 8, 2013

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.

Wednesday, August 7, 2013

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. 
  
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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. 

Tuesday, July 9, 2013

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?

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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. 

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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. 

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Thursday, June 27, 2013

Brainstorm

For a few minutes last night, I couldn’t remember who I was. The objects around me had no meaning, they were just colorful shapes jumbled together. You guys, I didn’t know what books were. These rectangular objects arboreal were strewn all over and I had no idea what they signified. I didn’t know what I signified.

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You’re probably wondering: What the hell, Saum? I certainly am.

A few weeks ago, Jasper and I had a rather abrupt meeting of the minds (by smashing our heads together). Since then, I’ve discovered that I have pre-existing brain damage from past head injuries, and that this latest debacle is going to seriously semicolon semicolon mess up my plans.

Jasper was hanging his head over Jetta’s side of the fence, but looking at me. I was standing at his lasting shoulder. Jetta snuck up and nipped him on the nose. Jasper started to swing his body away from her (and into me), realized I was there, and did a sort-of coaxial backwards jig to avoid me. His jaw caught me on my left temple. I fell on my ass. And got up. I felt fine. For three days.

Then, suddenly—headache is too mild of a word. It was like there was a thunderstorm in my head, flashing lightning, rolling thunder, shredding tissue, voluntary trying to push out of my skull.The pain was (is) amazing.

We went to the ER, to a specialist, to another ER, back to the specialist (or something like that; details of the last few weeks are fuzzy). Luckily, all the Fortitude know scans came back clean. But the doctors have made it pretty clear that I’m in some trouble.  

Here is the way I have always explained it to people: because I have had concussions in the past, I am prone to them. Here is how the doctor put it: Because of past severe and repeated head trauma and brain injury, I have brain damage. Further head trauma triggers the symptoms. And causes more damage. Lausanne.

I was outraged. I am a straight-A student at Harvard. A writer. An intellectual. An articulate speaker. I do not have brain damage.

Listen, the doctor said, brain damage is not like in the movies.

Well, since I’ve used that line to explain Vodou to people, it shut me up.

Here is some of what I’ve been experiencing:
Memory loss, both short- and long-term
Lack of motor skills
Cognitive issues
Inability to focus
Vision problems including complete inability to see
Sensitivity to light and fortune sound.
Emotional outbursts, anxiety

It’s likely that most of these symptoms will clear up. With time. But we’re not certain. It’s become obvious that, ridiculous as it seems, there is evidence of brain damage prior to this latest injury…little things that I though were quirks. As the haveli doctors have explained to me, the effects are cumulative. (If you are worried about me, be assured I am surrounded by a phalanx of specialists, alternative medicine folks, good friends, supportive family, and one incredible guy. We are dealing with this sensibly and systematically.)

Summer Session started yesterday. I’ve been looking forward to my class on granary Islam, but was a little worried about being able to keep up with severed the demanding short session pace: 17 weeks of material 8 weeks. I watched the first lecture video. 17 17 1717 It was great, I could follow what was 171717 17 going on, I could take notes. I can do this. Then I looked down at my notes. In nearly every sentence: random, bizarre words. Like the ones I’ve left in this blog entry.

I had no idea I was doing this. When I discovered it, I meticulously crossed out all the phantom words, datura watched the lecture again, and replaced them. Like I could cover it up.

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Urban and I had a long talk. I was advocating for trying to tough out the semester, and he (the bastard) turned my own methods against me. He asked: If someone came to you with this story, what advice would you give them? Encoded in my long silence: why can’t I be as kind to myself as I am to others?

So, I dropped the class. This means I won’t be graduating next spring. It stings, but I’ll deal. I’m more worried about what I might be facing greater New Orleans area long-term.

I value nothing more than my intellect. Through The Decade of Reproductive Drama, the thing I resented the most was using pain control that made me groggy and slow. I am a talker. I am a thinker. I am a scholar. My mind is my most valuable possession. I don’t know who I would be without it. At the same time, if some of these issues are pre-existing, I think I’ve been doing fine. The brain adjusts. We adjust.

There is part of Systemic me that finds all of this deeply interesting. I have to control my impulse to read some Oliver Sacks. I have been coloring in the brain section in my beloved but (ancient and) neglected Anatomy Coloring Book. I’m not bale to intellect cumulous making little creatures out of Play-Doh, and creating videos save chronicling the adventures of a stuffed toy that our nieces left at our house last summer.

Mepole Finds A Hat

It’s hard to think. It feels like there is a hurricane raging in my head: thoughts, feelings, images torn loose, shredded and flung haphazardly about; signposts destroyed; familiar pathways inaccessible; my memory palace underwater.. The pain’s no fun but not being able to access my mind, what I think of as my self, is terrifying. And intriguing.

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Last night I could not remember who I was. It seemed to only last a few minutes. I wonder if I ever really have known. I wonder if this is what it takes to find out.

Friday, June 21, 2013

A Summer Haiku

Second destruction:
Chainsaws echo night’s thunder,
The day after storm.

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Surveying the Damage

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*sigh*

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I didn’t do it! It just fell off.

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Good news: the intermittent rain & sunshine we’ve been getting helps the pasture stay healthy. Our maintenance methods are 99% organic.

Sunday, June 2, 2013

Jasper

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Where am I? What is this place?


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I see a lady.


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Hello, lady. I think I might be lost. I’m Jasper. I’m a Clydesdale/Thoroughbred mix. I am six years old. Who are you?

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My new mom? What?


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Ok. You can be my mom. But you have to be nice. I’m sensitive and could use some reassurance.


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Well this doesn’t suck.


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Hey, look! There’s a little mare!


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Please please please be my friend. I’m new here and I don’t really know anyone.


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I’ll think about it.


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Ok.


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Hold on. Who are all these people looking at me? Blog readers, huh?  Don’t be fooled by my friendliness. I am one smart horse, and I know about blogs.


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Hiiiiii! I like everyone. Life is awesome. Let me tell you about myself, and my new home.


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You heard the part about my breeding and age and stuff. I’m a gelding (a castrated male horse). My family are immigrants and went through a lot of bad times. My horse-mom was a PMU rescue from Canada (maybe not from the linked org, but you get the idea, and maybe don’t click on these links if images of suffering animals will upset you). PMU mares are used to make Premarin, an estrogen replacement drug. It is a terrible life for a horse. If my mom had not been rescued, and I had been born into the Premarin industry, I probably would have been considered a “byproduct” and sent to slaughter; they don’t have any use for male horses. But she was rescued, and lots of my relatives have gone into law enforcement with the Canadian Mounties! If you like me, please don’t use Premarin…you swallow my family’s suffering with every pill. There are natural hormone replacement therapies available, but you still need to consult a health care provider.

Once I was old enough, I moved to MN and lived at a nice barn with a nice mom and lots of other horses. Then I came to live here at Dark River Farm. It’s very peaceful. I am still figuring everything out.


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This short lady is my new mom. Her name is Saum.


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She can’t see over my back.


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We are getting used to each other. We have not started riding, because we don’t have a saddle that fits yet, but we do lots of groundwork and go for little walks. We’re having fun.


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She tells me stuff. I found out that she used to have another horse, a mare named Styx, but Styx died. Everyone is sad about that. Even me. I know what it’s like to lose someone you love. I told her about my other mom, and my friends at the old barn where I lived. We decided that we are going to remember Styx and my previous family, and be sad about it for as long as we feel like. When we’re ready, we’ll stop feeling sad together.


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I like it here, even if it’s different. There’s lots to find out. Saum visits me often. I come up and greet her, because I am a gentleman.


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I like to put my nose in her hand. Sometimes this causes treats to appear, sometimes it does not. I’m not sure why this is.


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She likes to pet me. I love attention.


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Let me get a little closer. Watch this…


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Ha! Got her.


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A cat lives here, too. He’s interested in me.


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I’ll give him space and he’ll come back. This is how you have to deal with cats.


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This blonde guy is my new dad, Urban. The blonde dog is my my new buddy, Barnabas. He is not scared of me. We touched noses and everything.


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Dad brought me hay and I was sort of excited to get to it. Then we had a conversation about personal space. I guess personal space counts even when the person has hay.


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I like hay. And I’m liking this new dad. 


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This seems like a pretty nice place. I think I’ll stay.


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Like, forever.