Friday, March 28, 2014

Even Knowing How It Will End, We Choose This Love. (Again And Again)

I’m posting this for a friend who is having her beloved dog euthanized today. You may have read parts of it here before.

This remains the only thing I’ve ever written about the death of one of my animals. I’ve never since been able to find words for that loss, so when it happens, (and, inevitably, after a few incidents of unproductive floundering around on the keyboard) I just go back and read this. When someone close to me loses a pet, I share it with them. It’s not much, but it’s all I’ve got.

It hit me hard to re-read it today. I haven’t lost one of my animals, but I am grieving the loss of my group of friends from that part of my life. It was my choice to step away from them, and I do not regret it. It hurts, but it’s the hurt of a healing wound…I forget about it for awhile, then something catches me just right and the pain flares, fresh.

When we mourn the loss of a pet, we also mourn the part of our life that they carried us through.

Bringing an animal into our life is an optimistic act. We know how it will end, but we take the risk again and again. Love, of anyone or anything, is the ultimate engagement with life. Life is going to end in death. We might trick ourselves into thinking that not loving will spare us pain, but that’s no way to live. Optimism in the face of death: what the hell else is life?

Lovers leave, or we leave them. Friends fall away. Animals are relentless companions, our ultimate confidants. They see and know what we cannot bring ourselves to show other people; sometimes the parts we cannot even bear to show ourselves. Animals remain mostly silent; we mostly see our reflections in them, and thus they refract all the unconscious choices that make up the profound minutiae of our lives. We know so little of their internal lives. When we mourn our pets, we mourn the people we were with them.

The good days in the sun are easy. It is when we are in pain and think ourselves alone that we reach out and feel breathing evidence of our not-aloneness. They romp along for the best of it, and stay steady at our side through the worst of it. What we cannot bear, they help carry.

So, go on, hug your pet. Remember the ones you’ve lost, and what they carried for you. And try to let it go.

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Dagaz was literally born into our hands. Asha followed a few hours later. Kalia (his mom) had a special relationship with him; she used to pick him up and carry him around by his butt. After awhile she would tenderly deposit him in the bathroom trash can. I think this explains why he always loved stuff in trash cans.

When he was growing up, he cost us a small fortune in vet bills; he ALWAYS had stitches for one thing or another. He and Asha and the rest of the Doberman 6-pack had fun up at our friends’ cabin where we all gather for sunshine and bonfires. We got to know each dog by the shape of their head when they came up to be petted in the dark; most of the time when I dropped my hand down it was Day’s oddly square noggin beside me. The dogs would bound through the woods, go for rides in the boat, and play hard with each other. Every morning I would wake up and think, Oh, no, it’s storming, and then be confused by clear skies…six Dobermans running is the sound of thunder. It’s hard to believe that  Asha is the only one left of all those sweet, sleek beauties. I love my Dobermans, but I sure wish they lived  longer.

Every animal is its own being, just like us, and my relationships with them are complex, aggravating and fulfilling. You can’t lie to animals. They teach me more about myself than I want to know sometimes. I have always had a close affinity to my dogs, but Dagaz saw me through the worst emotional and physical pain of my life. He learned to “stand steady” so I could lean on him when I had trouble getting up. When I was well, he followed me as I wandered around getting to know our land, or  sat with me on my late nights with books. No matter where I was, no matter the time of day or night, I could drop my hand down and find him there beside me. His presence was silent and constant. The room feels empty now, at 3am with only me in it.

I’m glad I played with Asha & Day today, took the time to watch them run down the hill and up the hill and jump on each other and grin at me. They are so much a part of this land. They were thrilled to have me spend a couple of minutes with them on my way out to the barn. I thought it might rain so I opened the door to the porch (our version of a doghouse) for them. Dagaz jumped up on the couch and looked happy. I headed out to the barn. When Urban came home he let the dogs into the house. I opened the front door a few minutes later, and found my dog collapsed at the foot of the stairs. He was gone.

I don’t know if animals understand or care about the concept of names, but my animals are named with care. “Dagaz” is Norse. It means daytime, the fullness of light, midday, midsummer, the high point of the cycle. They say every dog has its day; Day’s day was June 21, Summer Solstice. It’s not his birthday but it’s what his name means, what I think of as his essence. In the Elder Futhark rune system, the divinatory meaning of Dagaz is the spiritual path. The symbol looks like an angular infinity symbol, or, to me, like Shiva’s drum. I name my animals for what I see in them: I saw vigor and sensitivity in Dagaz.  I also name them for what they show me of myself, and what my relationship with them brings me. More than anything, Dagaz helped me both to face my pain and turn my back on it when needed. He taught me patience and emotional honesty. He taught me about the land, where the good shady spots are on the hill, and that possums really do faint when frightened. He brought me constancy and light. It’s hard to imagine this place without him.

But it’s not just me that has lost him. Urban is also grieving and sad. Asha is confused and whining a lot. She keeps running around looking for her brother. We are a little worried about her, but she is eating and drinking just fine. We will probably stick close to home for awhile, as she is unaccustomed to being alone. She will ride in the truck with us tomorrow (oh, well, today) morning when we go to the vet to take Day’s remains to be cremated.

I don’t know what we will do with his ashes, probably scatter them on the hill where he liked to run. I have been thinking of putting down some wildflower seeds, maybe we will scatter those, too.  It would be nice to walk in knee-high flowers next midsummer, and remember him. I will drop my hand down and find him there beside me, his presence silent and constant.

Monday, January 27, 2014

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.

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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.

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.