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 As I’ve withdrawn from the world, as I am disconnected from my own memories, I wonder about my worth.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

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.



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.



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.



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.

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.

 

The Witch of Endo, Pt. 3: The Companionship of Pain

(Ok—look, I’m fine. I had a rough couple of nights and needed to get this out. It’s fairly melodramatic. But I am not alone. Please don’t worry about me.)

Sometimes the pain gets to the point that you cannot sleep. It wants your company and just will not let you be. It’s as if your whole body is on red alert: unresponsive to drugs, deep breathing, visualization exercises or any combination thereof. You toss and turn, or (if it’s really bad), grimly lay as still as possible. You get up, read for a bit (1am) drink soothing teas (2am), go back to bed (3am), check your Facebook (4am), cave in and take more drugs (7am). Go back to bed (9am). Try some more deep breathing. No dice. Your body is convinced there is some sort of immanent crisis and you cannot talk it out of its stubborn and pointless readiness to act. 

Nothing is going to happen. Ever. The pain is just going to go on and on. This is the crisis. At 11am you give up. You get up.

You feel terrible. You feel weak: no one ever died from Endometriosis. People are starving in The Horn of Africa, being shot and killed in the Mid-East. People have Cancer, MS, AIDS. Your pain is inane. It means nothing. It fills the world.

There are all kinds (not just one kind!) of pain. They are distinct characters, and you know them well: their shape and tone. their foibles and preferences. You’ve spent a lot of time with them. They are reliable company.

1. The Drum: This is pain that can creep up on you. It starts out quiet, distant. Sometimes it stays that way, and you only notice it when the wind is right. Sometimes it get closer. It’s still background music but it has a beat and you dance to it. Your body knows the rhythm and you tread carefully. Then you realize you are standing in front of the big speakers and the music is so loud it actually occupies space and shoves you around. People’s lips move but you hear nothing.

2. The Lava: This is pain that oozes tendrils of heat through your pelvis. Sometimes you can feel the point of eruption. It craws and burns and spreads. It is slow but relentless. Everything in its path catches fire.

3. The Seams: These are the places that the pain is dug in. It can feel like seams of a rare mineral running through bedrock, foreign veins burrowing into bones and organs. It is hooked into everything and you imagine if you could ever grasp it and pull it out, your whole bloody dripping pelvis would be dragged along with it. You think it might not be so bad to be rid of the damn thing.

4. The Lighting Storm: This is electric, and comes out of the clear blue nothing. You are going about your day when BOOM! Shots and shards of sensation vibrate through your abdomen. You are wide-eyed, stunned, shivering.

5. The Weasels: You seem to be inhabited by tiny, sharp-toothed rodents with ill intentions. They scarper and claw, around and around and around. They trigger a similar hamster wheel in your brain: around and around and around you go. You get going so fast it’s as if your mind develops a centrifugal force: your pain is the only still point, and everything else is flung out, away from you. Nothing gets through.

6. The Orgasm. I think this is what they call “breakthrough pain.” Other symptoms lead up to it, and at some point you realize that everything else has been foreplay and you are choicelessly headed for something bigger and there is no turning back. It is as encompassing and immediate as a climax. You clutch a pillow and scream. Afterwards, you are left trembling and vulnerable, clinging to whatever flotsam of self you are able to salvage. If you are lucky, the pain rolls off you and leaves you alone for a bit. If you’re not, it’s an all-nighter and that bastard is tireless. You hate every second that he rips into you but there’s no stopping it. You’re his, and you are helpless.

Like sex, you don’t really want the general public to witness this. Any of this. Sure, people know you have it, but that’s no reason to share the reality of the event. It’s too raw, to private. Too revealing. So you take a shower, get dressed, and fake your way through another day. You find a smile that fits. You tell yourself that this does not have to be a bad day. When people (who are not as stupid as you’d like them to be), inevitably ask how you’re feeling, you conjure up something vague, like, “I’m a little worn out.”  You say this as much to fool yourself as to reassure others.

You tell yourself that the work will at least distract you. It doesn’t. You are pissed off—at the pain, your own weakness, everything. Rage keeps you moving when nothing else does; you grit your teeth and think something along the lines of “You might have fucked me all night, but you are not going to fuck up my day.”  You tell yourself this is not the best habit to get into.

When you write about it, you can’t even bring yourself to be you.  You write for the second person, for someone else who is you. You do this because it makes it easier to admit to, but also because the bastard has half convinced you that you are utterly isolated and even when you are writing alone at 11am after two nights of no sleep and giving the pain faintly ridiculous characteristics to somehow break it down into a manageable reality, you mostly write for the second person because you want to believe there is one. You would wish this on no-one. But you don’t want to believe that you are the only one. You don’t want to be alone, with only the pain for company.

There Will Be A Slight Delay

I was washing my hair yesterday when suddenly, I thought of my NSOMNIASAUM blog. I couldn’t remember the last time this had happened (not the hair washing, silly!). So I looked at my blog, and…Holy Shit! I haven’t posted anything since April 1. Is this a joke? What happened? Where have I been? Why haven’t I been writing?

Well, to be fair, I have been writing loads of other stuff. I wrote articles for Points of Light Institute, State of Formation and Huffington Post. I wrote a long, boring document for the IRS explaining why Headwaters/Delta Interfaith ought to have tax-exempt status. I wrote 140 character tweets for various purposes and organizations. Mostly, I wrote to-do lists and then did the stuff on them, crossed the stuff off, and added more stuff. Lather, rinse, repeat.

But, still…April?

The other thing going on is that I feel like shit. I had surgery in January but by mid-April, my Endometriosis was acting up again. I don’t like writing about it. But I also don’t like NOT writing about it—you know, writing around it, pretending it’s not happening when it is happening. Plus, being in pain limits my energy so by the time my “real” work (whatever that means) is done, I’m pretty much done. Spending more time in front of the computer just to keep everyone up to date on how miserable I am…hmmm…that’s strangely unappealing. Go figure.

Also, as y’all know, I get pissed off, so I took an Anger Management class, and was SO excited to write about it…then (at the facilitator’s request), I sort of promised not to. It felt awkward to write about my life when I wasn’t able to discuss all the interesting internal crap that Anger Management stirred up, confronted, and redefined. But the class was a useful experience, and I met some marvelous, inspiring ladies. And OMG! Something profound happened, I didn’t blog about it, but…it was like it still actually happened! Who knew?

On top of all those lesser excuses, I’ve been incredibly busy being in love. Urban & I have been together for 17 years or something; now and then we’re ambushed by infatuation and can hardly tear ourselves away from each other. We stay up too late, have long deep conversations, make kissy faces, ignore our friends and exist in a goofy, magical bubble of our own. We stagger around feeling dazed, neglecting everything but each other. It’s awesome. And, right now, unexpected.  

When I’m in pain for a long time, it wears us both down. I’m shaky and exhausted for obvious reasons but it’s also a strain on him. Here are some things I can’t do when I’m in pain and/or doped up from being in pain: the dishes, feed/turn out/bring in the horses, cook dinner, drive myself anywhere, run errands, mow the lawn, weed the garden, vacuum, change the sheets, do laundry…and so on. When I’m not well, Urban picks up where I leave off, often after he’s worked a 10 hour day and not gotten enough sleep because I’m worse at night and he hates leaving me alone when I’m suffering.

Normally, by this point in my pain cycle, we are strained, crabby, and making an appointment to see our marriage counselor. But none of that is happening. Instead, Urban is being incredibly sweet and unbelievably strong: taking care of me, taking care of our animals and 10 acre property, keeping track of everything, and doing it all with grace and verve. He humbles me.

So despite the pain and the angst that inevitably accompanies it, we’re ridiculously happy. I’m sure some of that is because we are already missing each other: we’re going to be apart for 8 weeks while I’m visiting family & attending Summer Session out East. 

I’m both dreading and looking forward to the semester. I’ll admit that I’m worried about my ability to keep up with work and writing commitments and school while my body is screaming at me (SHUT UP AND SIT DOWN, SAUM! TAKE A NAP! STOP MOVING AROUND YOU BITCH, THAT HURTS!). But I love the luxury of being in a classroom rather than taking classes online, the challenge of Summer Session (16 week courses crammed into 7 weeks), and, face it, the libraries at Harvard are heavenly. Nerdvana! Besides the academic stuff, being in Cambridge is lots of fun, and I’m excited to (re)connect with some wonderful people I know in Boston, as well as make new friends. I resolve to socialize more and not to push myself so hard at school. I’ll let you know how that goes.

What I’m not resolving to do is blog here at NSOMNIASAUM. If I blog, I blog. If I don’t, I don’t. If you miss me, you can keep up with my rambling at State of Formation and Huff Post Religion. I’ll see you on Facebook and Twitter. You can call, too; anytime! You know me…I’ll probably be up.