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 As I’ve withdrawn from the world, as I am disconnected from my own memories, I wonder about my worth.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

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.

The Witch of Endo, pt. 4: Surrender

No. I say to my doctor. In fact: Fuck, no. You can’t have my cervix. Let’s just schedule another laparoscopic clean-up. Go in, find the Endo, zap the Endo, and I’ll be home by noon. And it has to be early in November because I have travel plans.   

My OB/Gyn  has known me since I was 18, when I had my first surgery for an ovarian cyst. He does not take the swearing personally. Over the years, he has cut me open, soldered me up, held my hand. He’s the one who told me I was unlikely to have children. I have chronic pelvic pain and this is the guy who has to poke at me and ask me to describe the pain. I can be very descriptive. (The ultrasound tech his office once told me that he’d heard worse language from women on the ultrasound table than he had in his many years in the Navy.) Besides all this, my doctor respects my choices on how I live with and manage this disease. But when Urban comes up to the scheduling office so we can cram a surgery onto our calendars, Doc says to him: She made me a liar. I said the next time this happened, we were taking the cervix out. I said that the time BEFORE the last time. And the time before that! She’s not listening to me. You try talking to her.

You always did call me your problem child I say sweetly to the Doc, who I really am very fond of. He throws up his hands and walks off.

Ok, Toni, I turn to the surgery-scheduling lady, what’ve you got open?

We schedule the surgery for the second week of November. I’ll start getting back to work a week after the procedure. I’ll take it easy for a few weeks but it’s ok. I’ll have plenty of time to recover before heading to India for the holidays, so it won’t screw that up. I can live with this. I’m used to maneuvering around it.

On the way back from the appointment, I sit grimly in the car, gritting my teeth against the pain, absolutely certain I am doing the right thing. I will not have my cervix removed. My doctor thinks I’m insane. He believes that the Endometriosis has eaten into the tissue of the cervix and that these superficial solutions – going in with a laser and cauterizing the Endo on the surface of organs-- have outlived their usefulness. Whey they took out my uterus, it was riddled and veined with Endo (technically, once it eats into organs, it’s called Adenomyosis). I don’t care. I didn’t give a damn about my uterus: it was nothing but trouble and I wasn’t planning on using it anyway. Giving up my last ovary was angsty but not a hard decision to make, just a hard one to accept. But I will not have my cervix removed. Anyway, it’s a major surgery. I would have to be in the hospital for a couple of days, and it’s a longer recovery. I don’t have the time. I have a life, goddamn it. 

My last surgery was in January. I brood over this and watch the familiar scenery slide by on 394. I want to turn on the radio but I’m afraid I would snap the knob right off.

Instead, I review the facts with Urban, and ask him: What do you think?

It’s mostly rhetorical; I know I can count on Urban’s reassurance. But he is quiet for a long time. Then he says that he thinks the reason Gede told me to do the series of ritual baths (which I’m in the middle of) was to help me reach a more open emotional state so I could hear what I needed to hear, and accept it. (Huh? you’re wondering, Who said what? Ritual baths, wtf? Sorry, darlin…that’s a post for another day). He keeps his eyes on the road, but reaches for my hand.

I want to yank my hand away. This is not what I needed to hear! But I feel a truth in my body, in the beat of my blood, the vibrations in my pain seem to resonate a yes. He’s right. I shut my eyes and don’t say much. Urban drops me off at my sister’s, where it takes me all afternoon to talk myself into what I already know. My cervix has to go. I can’t keep putting it off. At this point, I’m just being stubborn.

The idea of this surgery terrifies me. I don’t know why. I’ve had so many other bits cut out, one at a time: appendix, gallbladder, left ovary, uterus, right ovary. I’ve had more surgeries for Endo than I can count.

But this. This.

 

It’s a pretty major surgery, since they are cutting out an organ. The cervix is the lower part of the uterus; sometimes it’s removed with a hysterectomy. Also, it’s connected to the top of the vagina (the cervix-bone connected to the vagina-bone!), where there are lots and lots of nerves; my doc says it may be more painful than the hysterectomy. So, yeah. Not fun.

And what if… oh, crap, what if? Some women have “decreased sexual function” (i.e. are unable to have an orgasm) after having their cervix removed. Of course, constant pelvic pain also decreases sexual function (duh) so my chances of having an orgasm right now are roughly 0 anyway. When I brought up this sucktastic, potentially life-altering side-effect with Urban, he said…well, sorry, what he said is private but let’s just say I’m not so worried anymore.

That leaves the worst, the real: what if this doesn’t help at all?

For all these years, this has been the last step, the one thing we could do if nothing else worked. Well, nothing else did work. We’ve tried it all: conventional, alternative, metaphysical. I’m better than I was before but it’s still pretty bad. What if I have this surgery but I don’t get better? One of the things Gede said is that I have to believe I can recover. Deep inside, I don’t know if I really do believe that. I’ve lived with this pain so long. It seems…inevitable. When I try to imagine or envision a life that is pain-free, I come up blank. I have vague images of being able to drive again, and ride my horse more often…but it seems suspect. Have I been holding off on this surgery because I’m afraid it won’t work?

Here I am, coolly assessing one of my organs and deciding whether to kick it out of the club of Saum. Trying to figure out what I’m really feeling. I talk to my sister all day. I talk to Urban all night. I go out to the barn and lean against Styx for so long that she dozes off. Then I call my doctor and tell him to schedule the whatever-the-medical-term-for-cervix-removal-is. I expect him to gloat a little. He doesn’t.

I hate breaking myself into pieces. I want to think of myself as whole, entire, not made up of disposable parts that can be excised and thrown away.

I don’t get any better at this. I WANT MY CERVIX. I’m not exactly sure why. But I do. It’s me. I’ve imbued it with meaning.It’s the part of me where the inside meets the outside. It’s one of my thresholds.  In sex, when so many other boundaries blur, this is where you becomes me. This is what holds me in. I feel like if I keep giving parts of myself up, it will all come spilling out: guts and organs, everything raw and essential. What will be left of me? This fear feels simultaneously terrifying and ridiculous.

I also feel failure. Aren’t I supposed to heal myself? Or something?

Maybe not. Maybe I’m meant to be unhealed and raw. Open wounds are passageways. Burden is a door. I feel like I’ve been braced in this threshold for so long. What am I holding on to?

I remember something the Doc said: Saumya, this is not something you did.

One of my other doctors (I have, like, a whole panel of them) once said: This disease has put so many limits on you, but you do so much. I’d like to see what you’d be capable of if you were healthy.

You know what? So would I. So would I.
Fuck yes. Let’s find out.

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.

The Witch of Endo pt.2 : It only hurts when I laugh

*I know a lot more people are reading this blog, so be warned: I swear. And I’m crabby. If that will bother you, go away. For inspiration and non-swearing, read my HuffPo stuff or look at pics of kittens.*

It’s time for the unique Haas holiday held in January: SAUM’S SURGERY-FEST! Practitioners of this tradition explain that its purpose is to drive out the malicious spirit “Endometriosis.” In ancient times, it was celebrated several times a year, but modern innovations such as controlled diet and Cranio-Sacral therapy have reduced this once quarterly observance to a mere annual event. The surgery in a hospital is only the beginning of this holiday; the bulk of the festival is observed at home and goes on for a week or two. It is characterized by curtailing professional responsibilities and social interactions, imbibing analgesic narcotic substances, and taking part in activities resonant of childhood: eating soft foods, reading comic books, watching animated cartoons and being cared for by a responsible adult (Urban). This way, the whole Haas family can celebrate together! 

Ok I’m done trying to be funny. Here’s the deal: the Endometriosis is back, I’m in pain all the time, and I’m having surgery next Thursday: one day shy of a year since my last surgery. My goal was to make it a year. I know, I know…almost. It should count. But still. ONE FUCKING DAY! Come ON.

I have no reproductive organs left so how come I still have a reproductive disease? 

Actually, that’s not true. I do have a cervix, although they want to take it out. I’ve drawn the line. Leave my cervix alone, you bastards. It’s mine and you can’t have it.

So, it’s nothing life-threatening or even organ-threatening. We are just doing another laparoscopic clean-up surgery: I think of it as being vacuumed out, but it’s much cooler because there are lasers involved! I’m like a superhero!

All-Natural Cleaning Supplies

It’s no big deal: I’ve done it at least a dozen times. But you know what? It sucks. I have health insurance, an incredibly supportive husband who takes care of me, I won’t get fired for being sick (plus I don’t make any money anyway), and it still fucking sucks. Every time.

My body doesn’t give a damn what I do or don’t have time for. I resent this. You’d think after all these years I’d have gotten a little better at acceptance, a little more graceful. Nope. I bitch and swear and stomp around (well, I cant really stomp right now but I would if I could.) I listen to loud music and sulk. I stay up all night and worry. I draw: traditionally, this has helped. I try not to lose my shit. I breathe. But still…

I took this semester off to focus on work. I have a huge amount of paperwork to do to get my 501(c)3 (non-profit organization) off the ground, the Healing Center is opening this spring which means I have to start paying rent, which means fundraising—Headwaters/Delta has a grand total of $20 right now. I can’t afford to lose (at least) two weeks of work. But I’m going to and that’s that.

And don’t give me that “my sister had a laparoscopic procedure and went back to work the next day!” crap. Fuck your sister.

Hair-Metal Wisdom

The worst part of this? I don’t like surgery, but I hate needles. I HATE hate them. My veins hate them too. When I was in the hospital in 2002 (or 2003? it blends together), they wanted to put the IV thingy IN MY JUGULAR because my other veins were so surly and uncooperative. I was like…nope. Sorry, before that happens I’m going home and I’m taking my un-punctured Jugular with me. Figure something else out or find someone else to operate on. They figured something else out. I still have the scar in the bend of my elbow.

Luckily I have surgery frequently enough that everybody in pre-op at Abbott knows me now. It’s wonderful to be greeted enthusiastically by my surgery team (“Spending much time in New Orleans these days?” “How’s school?” “How are the horses?”) but it’s sort of depressing, too. At least when I come in, they know to get Scottie: Magic IV-Starter Dude. Scottie begins with a massive shot of Novocain in my arm so he is free to dig around without me shrieking at him. So, that’s not too bad.

Ok, I’m tired now & I’ve had enough of trying to hammer this out in a way that might be comprehensible to other people. I don’t know if I’m trying to be expository or descriptive or what. If I could tell you one thing it would be: the absence of pain after sustained pain is not the lack of something. Being-without-pain is a full feeling. 

When I come to after surgery, even through the immediate pain of having my guts yanked around, I will feel a gorgeous sensation which signals that Endo is no longer eating me from the inside. I will be free. It will fucking rock.

For a year, at least.

The Witch of Endo

The Witch of Endo, part 1

This just in: It’s really hard for me to ask for help. I’m sure you’re shocked.

I had a midterm due at the beginning of the week; I have been dealing with pelvic pain from the endometriosis and feeling crabby and useless. I had every reason to ask for an extension on my papers but…I felt like a loser. I didn’t want to ask. It was hard to admit that I *couldn’t* do it. I hate “can’t.” I hate it in myself. I would never judge another person who asked for an extension on a paper because it felt like their pelvis was eating itself (and, actually, with endo, that’s not far from what is actually happening) but oh no, not ME. I can do anything, dammit. Except I can’t. It was humbling to look at my notes strewn around me, books piled up, Word doc open and ready to go, and realize: I can’t fucking do this. I need to go to bed.

I have two choices when I’m in pain and have a paper/project due: I can grit my teeth and work through the pain, or I can take a painkiller and work through the narcotic haze. The pain pills work pretty well but they make it hard to focus, retain information and express myself coherently. In short, everything I need to write a paper.

I have learned the hard way that the pain will not just go away because I ignore it.  Ignoring it will make it worse. So although I am capable of working through it, I will pay for it when the work is done. Often that payment is more than I can afford and --listen to me! I feel like I have to justify my decision to not stay in pain. It’s a little excessive. I have such little sympathy for myself.

There is some crazy part of me that believes that if I wish hard enough, or do the correct breathing exercise, or stop eating dairy (for the record, I’ve tried: it’s bullshit) or something, this disease will go away. So if it doesn’t go away it must mean that I don’t want it gone enough. Some strange part of me thinks I should be able to wave a magic wand and make it all go away: some part of me believes I can do anything, so why can’t I do this? It’s like the dark, distorted side of empowerment. I’m always hearing how tough people are, they beat cancer, just fucking kicked it to the curb. I don’t even have a life-threatening disease and I can’t kick it out of my own way, never mind the curb. It makes me feel inadequate and weak. 

Now I know that makes no sense, but at the same time I don’t know it. I remember being at the pre-op appointment before my last surgery, going though the litany of diet, meds, everything from the previous few months, trying to figure out where I went wrong, when my surgeon, who has been my doctor, therapist, advisor and friend for the last 20 years (yeah, I’ve had surgery often enough that I’m buddies -–good buddies-- with my surgeon)-- looked up from his note-taking, waited for me to stop, then said “Saum, this isn’t something you did.” I burst into tears. Because I needed to hear it.

I don’t have magical powers (Or if I do, they’re not that kind of magical power, but only good for conjuring 80s power ballads and rain). What I do have is a disease with symptoms I can’t predict or control. I have issues with giving up control –- and, baby, it is allllll about giving up control.

I also have a TF who rejected my request for a 48-hour extension on my midterm but instead gave me 5 days... and said if I needed more time it was not a problem. I burst into tears then too. Luckily I was just reading an email so there were no witnesses.

Something else my surgeon said that day has stuck in my head: Men are stronger, but women are tougher. They are also tougher on themselves. I don’t know if that’s true, but it certainly resonates. I doubt that it has anything whatsoever to do with my gender, but I have high standards for myself: I push myself, I love a challenge, and I do stuff that I am afraid of doing. I don’t give up. I think those are all good things. But, I also judge myself very harshly. I would never speak to another suffering creature the way I speak to myself.

Sometimes I think I’ll never be enough for myself. I construct and overcome hurdle after hurdle: going back to school wasn’t enough, I had to get into Harvard. Getting into Harvard wasn’t enough, I had to maintain a 4.0…and ok I’ll admit it, there’s times that I think my 4.0 at Harvard is worthless because all the really smart people are over at MIT.

There is a part of me that, assuming I get an A in this class, which I will move heaven and earth to achieve, will feel like I don’t deserve it because I got an extension on my goddamn midterm.

It’s telling that while pain is part of my everyday life, it’s not something I’m comfortable talking about. It hurts everyday, and I don’t just mean physical hurt. I have not ridden my horse in over a month. I live to ride, and I cannot ride.

I have blogged about pain it in the past but it’s something I struggle to express. I avoid writing about it. I avoid talking about it. I’m not registered with the disability support office at school although I ought to be. Ignoring it doesn’t make it go away, but it does keep anyone else from knowing about it, from witnessing my vulnerability. I want to be tougher than I am.  I want a life that is miraculously free from “can’t.” I don’t want to need help.

But I’ve realized, while writing this, that needing is good for me (sorry, Buddha). It opens a part of myself that would otherwise remain closed. It humbles me and introduces another kind of empowerment: one that acknowledges that maybe I can do anything…just not on my own.

I titled this post The Witch of Endo, part I The “part I” is a promise to myself. I will keep writing about this. I will keep needing, too.

Thanks for your help. I appreciate it. I couldn’t do this without you.

A Night at the Temple

Concerts. Kirtan. Vodou ceremonies. I don’t care, as long as there’s music.

My body is caught in the current that flows over and from 18,000 people screaming along to Tool. I had a bad day, but that’s gone now. When the music starts, the music is everything. It both brings me completely into, and totally out of, myself.

50,000 people fall silent at the opening chords to The Smashing Pumpkins “Disarm.” We are sitting on a hill on Harriet Island, back when Lollapalooza was a tour. 10,000 people chant ancient hymns on the huge ghat steps leading down to the river in Varanasi. The whole city is lit by oil lamps on this sacred night. The State Theater is packed for the Black Crowes. We have balcony seats. I will talk about this night for the rest of my life, but right now, my whole world is Chris Robinson, on stage, wailing and dancing barefoot on a Persian rug. Over the course of two hours, 1400 people at the (old) Guthrie slowly lean forward more and more and more until we are all perched on the edge of our seats, breathless, as Ali Akbar Khan first caresses, then strums then totally fucking shreds on the sarod. All these experiences were distinct, but they are all the same.

Music usually raises a fierce joy, but there have been grueling times I endure only because music protects me, insulates me, wraps around me, and keeps the world out. Sometime the only thing that keeps me from being alone is a song that express what I am unable to articulate. Music lets me know that I am not the only one to feel something; it both helps me feel it more keenly and to overcome it: with music, the only way out is through. Sometimes I think that in buffering me from the reality around me, the music somehow absorbed it. So when I hear that song again, a little of that reality leaks out.

Music has always been something that frees me. At First Avenue, 200 people dance to P-Funk. George Clinton swings his multi-colored hair in a circle and yells “Are we LIVIN?” We roar back an affirmative: yes, we are livin. 100 people on a River boat chugging along the Mississippi jump up and down in unison to Michael Franti telling us to “throw your hands up high, ‘cause you never know how long you’re gonna live till you die.” The boat is shaking. 40 people crammed in an unfinished room at The New Orleans Healing Center groove to the Afro-Jazz rhythm of Kora Konnection from Senegal. There is no room to dance. A dozen people dressed in white do have room to dance around the center pole of a Vodou temple, as the drums call the Spirits. I am barefoot on the sand, under the stars, listening to music played by gypsies. We are deep in the desert of India, and I dance with my oldest friend.

Live music is best, but my everyday life has had a variable soundtrack coming from the radio, records, tapes, CDs and now our ever expanding digital collection. I love discovering new music, but I treasure the old stuff too. It can take me back to moments, places, people I have not seen in twenty years. The beat kicks in and suddenly I am there again, the memory stored in the music.

My husband and I, and most of our friends, slamdance to Ministry’s “Jesus Built My Hotrod” in the ballroom at a Marriot: he is wearing a tux, I am in my ivory silk wedding gown. We are grinning, young, drunk. I plug my headphones in and listen to Guns and Roses. Axl Rose is the only other human being who might be as pissed off as I am right now. I am in a car with my three best friends when  Prince comes on the radio. We crank it up, pull over on the freeway, and dance. We laugh like loons, and hug each other. My mom puts on a Peter Tosh record and we move to the sound of the Caribbean. Outside, the Minneapolis streets fill with snow. I must have been about six years old.

This is the story of my life. Then, now, always.

Bands I have seen live (as well as I can remember): 
Pixies, Beck, John Mooney, Smashing Pumpkins, Twilight Singers, Tori Amos, Ministry, Dead Can Dance, Flock of Seagulls, PJ Harvey, Bela Fleck, Ani DiFranco, Stanton Moore, Beastie Boys,  Sade, Black Crowes, Blink 182, Fall Out Boy, Sean Johnson and Wild Lotus, Panic! At The Disco, Gypsy Kings, The Decemberists, INXS, Beck, Billy Idol,The Killers, Liz Phair, Gypsy Kings, Modest Mouse, NIN, Roxy Music, Rage Against the Machine, They Might Be Giants, The Black Keys, Tool, Jewel, Ravi Shankar, Trombone Shorty, Jimmy Eat World, Aerosmith, Trip Shakespeare, Lenny Kravitz, Burning Spear, Alice in Chains, Ziggy Marley, The Breeders, Ali Akbar Khan, Babes in Toyland, Tracy Chapman, Michael Franti.

I would see every single one of those bands again, with the exception of Lenny Kravitz, who was so surly and wooden that he has the distinction of being the one artist who managed to make me dislike his music, which I previously liked, after seeing him live. Maybe he was having a bad day. But come on, man, you’re opening for Aerosmith. Have some humility.

Bands I hope to see:
MIA, Primus, Santigold, Lady Gaga, White Stripes, Red Hot Chili Peppers, The Rolling Stones, Snow Patrol, U2, Gaslight Anthem, Arcade Fire, My Morning Jacket, Muse, Gutter Twins, Wolfmother, Rob Zombie, Vampire Weekend, The Strokes, Ozzy, Sleigh Bells, Prince, ZZ Top, Marilyn Manson, B.B. King,  Pink, Godsmack, The Cure, Atmosphere, Black Eyed Peas, Arctic Monkeys.

Bands I wish I could have seen:
Ramones, Queen, Johnny Cash, Joy Division, GNR, Led Zep, Patsy Kline, The Clash, The Beatles, Nirvana, Bob Marley, The Doors, Peter Tosh, The Grateful Dead, Jimi Hendrix. The thought that I will never see Jimi Hendrix live in concert sometimes depresses me.

I almost didn’t go to the last show we had tickets for (Modest Mouse at the Orpheum) because I felt crappy. I have endometriosis, which results in chronic pain. I’m not in pain all the time, but when I am, I’d rather be curled up on the couch at home. But I wanted to go, so, fuck it, I went. There was a great crowd, everyone on their feet, screaming, cheering, singing along to the music. I look around at the wonderful cross-section of goateed, pierced, vintage-clothes-wearing Minnesota geekdom, and think: these are my people! At first I just stand there, sort of bouncing, listening to the show. But music comes in my ears and out my hips, so pretty soon I am swaying and grooving. Tentatively. Pelvic pain and pelvic motion do not go together. But after awhile, the music just…takes me, and I stop caring. I dance. I stop feeling anything besides the music. I stop being anything besides the music.

When the music gets going the beat comes up through the floor and pounds through the air, pulsing my sternum like another heartbeat. Everyone is moving, jumping up and down or swaying in place. I feel the life coursing through me, those around me, the universe. There is no difference. How can there be? We share a heart.

Pain

This is about my relationship with pain, which has been my close companion for about 8 years now. It’s excerpted from something I wrote awhile ago for a relative who who was having painful health issues, to try to help them and their family deal with the ongoing crisis. One of the worst things about pain is how alienating it can be: most people don’t get it; how could they? Another family member, who is also a psychiatrist, recently asked if she could share it with some of her patients, so it’s edited to remove personal info. I hope it can help people.

When I am in pain, I am not rational. Pain distorts and amplifies every minor stress and moderate worry into insurmountable disasters. Thinking about the state of my lawn/inbox/whatever can reduce me to a hysterical frenzy at 4am. The worse the pain, the worse the irrationality. Telling someone who is in pain that they are being irrational is not helpful, though.

Pain makes me feel like I am going crazy. It’s a constant murmur/noise/shrieking in my head that can drown out everything else. It never really goes away, but it can be better or worse. When it’s not bad, it’s like background music; when it’s bad, it’s like being up front near the speakers at a packed, loud concert: I’m jostled around helplessly and feel it thump in my bones. When someone talks to me, I see their lips moving but I can’t hear what they are saying.

When I am in pain, all I want is for it to stop. I will say or do anything to make it stop. If moving makes it hurt, I will say or do anything not to move.

The same way an animal in pain will curl up and ignore everything, or bite out of reflex, I will either lock up and ignore or verbally lash out at my husband. I can’t help it. Pain kicks in adrenaline, and takes the “thinking” part of my brain off-line. The “reflex: fight/flight/freeze” part takes over, the same part that takes over in anger or other strong emotion. I panic. Everything feels like a threat I want to run away from, but the threat is inside and I can’t get away. There are times that I have banged my head repeatedly or pulled my own hair. Watching me be in this much pain is scary for my husband.

Pain is not just a physical thing. It is extremely emotionally traumatizing. When I am in pain, my husband has to be very gentle and speak very softly. If he is agitated, upset or loud, it terrifies me and I go into a panic (see above). When I am in pain, what I need first, MORE THAN ANYTHING is for my husband NOT to problem solve, but to come and gently put his arms around me and tell me he’s there with me and everything will be ok. Usually at first I yell back “No, it won’t be ok!” but after awhile I can calm down. Sometimes when he tries to hug me, I feel claustrophobic and push him away or yell at him; it’s again like being an animal in a trap. He might just hold my hand at first, then hug me. I need that comfort first, even just for a few moments. Physical contact is not just nice and cuddly; it also releases endorphins which alleviate pain and help me relax.

Because I am still in pain and not thinking clearly at this point, now my husband has to problem solve. That usually means getting me a heat pad & helping me position it on my abdomen (otherwise I will just sit there and hold it in my hands like an idiot), a pill and something easy to eat.

Now comes the waiting. The 45 minutes it takes for a pill to kick in seems like HOURS when I am in pain. I often start to panic: Why is it taking so long? What if that pill was a dud? What if it doesn’t work? Sometimes I work myself up so much that by the time the pill does kick in, my body is so tense that the medication doesn’t work as well. So relaxing while waiting, even a little, is important.

I HAVE TO keep my brain/mind engaged and keep those endorphins coming, or I just goes down the pain>panic>tension>more pain spiral. Sitting around in pain doing nothing makes pain WORSE. Sometimes I get so desperate that I get up to do something like the dishes, just so I’m not stuck on the sofa with nothing to do but feel in pain. If movement causes more pain, this is ultimately foolish! So, what to do?

1. Put on some not-too-loud music that lasts at least as long as it takes the pill to kick in. This gives me something to focus on. If it’s an album/mix I know, it also helps me to think: “by the time “Unstoppable” comes on, the pill will have kicked in & I’ll feel better. Only four songs to go!” I also put on music to help me get to sleep if I am in pain. It really helps.

2. Gently pet the dog. It is very calming and the quiet that surrounds animals is relaxing to me.

3. DO SOMETHING! I can never think of anything at the time, and I never think some stupid game could possibly help…but it always does. I have to do something uncomplicated that has a finite result in a short span of time. Small jigsaw puzzles, origami, a coloring book, acting out the bamboo forest scene from “Crouching Tiger, Hidden Dragon” with a bunch of cilantro and a couple of tiny devil ducks. If My husband can sit with me, easy games like Connect-4 or Trouble work too (he has to pop the Pop-O-Matic for me, which is always a little disappointing); sometimes he reads to me. Vague, open-ended things like just drawing don’t work because I have to come up with an idea. If my husband puts a piece of paper & pencil in front of me and says “Draw something” I just freeze up. If he says ”Draw a picture of our dogs in the small appliance section at Target shopping for an ice-cream maker,” that would work. My husband & I also play Dungeons & Dragons because it can last for hours, so if I’m having a bad night I have something else to focus on. TV helps, but only a little. The drugs I take give me headaches & nausea that get worse from the computer or TV. And sometimes it’s just too disorienting and confusing. Some Wii /computer games help too, but again, after awhile the glowing screen is just too much for me.

5. Talk to someone. If it’s late at night and my husband is too exhausted or has to work in the morning & I can’t find an awake friend, I call a crisis hotline. I was embarrassed the first time I called but it they were really nice, and it helped distract me.

When I am in pain, I swing between being brave & stupid by not asking for help, and demanding & childish by being very selfish. There is middle ground but it’s hard to inhabit. Pain makes me feel alone and like my husband does not care about me. I spend a lot of time feeling ashamed of not being able to tough it out, and of having to ask for help. It makes me doubt myself and feel weak. Getting through it requires faith, and not the religious kind (although my experiences the last 8 years have deepened my curiosity about the Great Whatever).

What I mean by faith is, it’s the belief that I will get better, that I can endure. Even when I feel trapped in an endless moment and can’t remember or imagine any other way of being, I have to believe that the pain will ease, it will pass. It’s the faith that although I can’t stop the pain from coming, I don’t have to keep it or own it or find some great meaning in it, I can just let it flow through me like water. It’s knowing that my husband can’t understand what I am going through and will say the wrong thing and act like a dick and walk away when I need him, he is still doing his best and I’m never alone. Even when he is not next to me holding my hand, even when we are not getting along, I am cradled in the home and the life we have made, and that life is real and true and funny and gorgeous. It’s the faith that I’m not alone, the pain will pass and I will still be here.

Our Lady of Morphine

Every time I go in for surgery, I say a prayer to Our Lady of Morphine, the Patron Saint of Pain Control, the Angel of Analgesics.

I drew this  self-portrait (ink and sparkly pen on recycled paper)sometime in late January/early February 2002, while in hospital in Dehradun, India, where I almost died. It’s where, raging with infection and gallstones, I would experience what the doctors called “episodes;” it always made me wonder why I was stuck watching this crappy show. It’s also where they fed me such large amounts of morphine that when I got back to the US, my doctors thought the hospital reports were loaded with typos. But, man, that pain was CONTROLLED!

I remember the Doc at Abbott—O, blessed Abbott, with your uniformed nurses, sterile gloves, and well-lit, pristine bathrooms-- looking at me incredulously over a clipboard and saying “You travelled commercial in this condition, while taking these doses? I assumed you were airlifted.” Nope. I was so out of it that my sister, standing in that 2 am fog outside of Delhi airport (mingled smells of jasmine, diesel and Jet A) had to gently steer me towards the bright airport doors;I was wondering off into the mist. She had to insist I get a wheelchair. “No, no.” I remember saying vaguely, “I feel fine.” The look on her face!

Changing planes at Schipol, sisterless, was a little more traumatic. I’ve had wonderful experiences in Amsterdam (who hasn’t?) but I’ve found that Holland, or at least it’s main airport, is not the most brown-skinned-people friendly place on the planet. I couldn’t get anyone to take my request for a wheelchair seriously. I wandered around, in tears, clutching my carry-on and a mysterious little ceramic house (it sloshed!) handed to me by the flight attendant in the First Class cabin. Ok, so I wasn’t airlifted but I honestly don’t think I would have lived through economy. I sat down, in considerable pain, self-pity and confusion, at a deserted gate, and started paging through my journal for my flight info. I came across Our Lady, and sat staring at her. Pills are scattered everywhere. Massive syringes drip. Doctors and nurses cavort. Our lady sits, serene, amid it all. I started to laugh.

I made it home, to encounter such wonders as Abbott NW Hospital, a husband nearly obscured by roses, a singing and dancing pig wearing a chicken suit, culture shock in the form of mac and cheese, and hippies in the basement. But that’s a story for another day.

I’ve had what I like to refer to as “health challenges” since then (I blame the pig). But just to be clear: the dimly lit, slightly grubby hospital in India saved my life. The non-uniformed nurses, who had a distressing habit of setting loaded syringes with unprotected needles down on my crowded bed-side table, would hold my hand and sing to me until the drugs kicked in. There are many kinds of pain control.

But also: when someone in my family is having a health crisis, we say: Hell, at least this isn’t happening in India.

I dug this picture out of The Grey Cloth Journal, April 12, 2000—February 15, 2002 –a big fat one, and a pain in the ass to lug around. But it’s a treasure trove of narcotics-inspired art.

Our Lady has been letting me down a little lately, so I thought maybe she’d like it here. Feel free to leave an offering.