Pages

Showing posts with label Coping. Show all posts
Showing posts with label Coping. Show all posts

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 As I’ve withdrawn from the world, as I am disconnected from my own memories, I wonder about my worth.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

WHEN-THE-BRAIN-STARTS-TO-FALL-APART
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.

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.

Friday, December 14, 2012

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.

 

Tuesday, January 3, 2012

Riding Home


From the gate of your mother’s house, you could swing up on a horse, clop down a few quiet streets, cross the river and then there was nothing but packed dirt roads good for a gallop, tiny temples perched on mountainsides, villagers gathering firewood and grasses, miles and miles of rice paddy. You would come around a hill and see the paddy rising in terraces from the valley floor, marching ponderously up the slopes, shrinking as they go.

These hills are as big as some mountain ranges. They are foothills only compared to the sweep of the snowpeaks that float behind them: The Himalaya. When you saw the mountains you would finally feel that the city was behind you. It’s not that you could relax: things here require your full attention.  But something in you eased, a little.

You would follow broad forest paths through the hills then take goat tracks that clung to the mountain and shed pebbles into steep drop offs as you rode by, going too fast on an unpredictable horse. You would pass through villages, and tiny old ladies would call to you from the fields. They would ask you to have chai and chapattis (flatbread) with them. You would sigh, because it meant dismounting, which meant remounting. The mare would stand steady and quiet while you held her, and walk like an angel when you took a village kid up in the saddle for a quick pony ride, but when it was time for you to mount up she basically tried to kill you. If she knocked you down, she would then trample you. You had to vault up quickly, hauling her head around to the right so she didn’t give you a bite on the ass to hurry you into the saddle. She was sinewy, tough, and quick as a snake.

You get to know the villagers. You help haul firewood, you carry packages and messages between the scattered settlements. You are given chai and admonitions. They joke and call you “Kalki didi,” after the last incarnation of Vishnu who will come to end the world, riding a pale horse. It is better than what they call you in the city.

You mount up (quickly), turn your body toward home and the horse beneath you follows and carries you at the same time. You ride her like a current. You go home in the dusk to the sound of temple bells and prayer call. Cows are coming home, plodding and lowing. 

Many years later you read a book by a woman returning to India after an absence and she describes this time of day and what haunts you is her line “the air was dust and jasmine.” Haunts, because you read her words and you feel warm dusty air and breathe in jasmine. You hear hoof beats. 

*  *  *  *  *

You have been gone for 10 years now, and these memories are even older than that. Now you come back, and there’s an airport with a glass elevator. There are luggage trolleys, a gift shop. You get in a Toyota and the driver takes a back way home because Rahul Gandhi is speaking at the Parade Ground and there are crowds. You remember when his grandmother was assassinated and there were riots and killings. You remember when his father was assassinated, too. You were in the States by then, and you remember thinking: that bloody country. You think about this as you take the back way home. You are excited to be here. You know it’s going to be different. You’re ok with that.

The roads you take are packed with vehicles: trucks, cars, putt-putts, scooters. Everything has an engine. Traffic is both lumbering and nimble. Car horns sound, not in complaint but orientation: a wolf howl, saying: I am here. I am here. You swerve and bully your way through. You parry and dodge.

The roadsides are packed with stalls and carts selling: pyramids and piles of oranges, apples, red winter carrots, potatoes, T-shirts, shoes, and everwhere everywhere plastic plastic plastic: buckets and bags and baskets and toys. There are no sidewalks and no parking lots, the traffic and the bicycle guys and the pedestrians come together with the inevitable and irresistible force of the sea meeting the land. Road verges foam like surf. Everyone is in motion but nobody gives ground. Pedestrians in jeans and dhotis, leather jackets and shawls, weave and thread through moving and parked vehicles and talk on their phones. A dog sits down and has a good scratch. Everyone goes around him, not even looking down. The dog trots off.

Behind the pedestrians and the carts are the shops. Steel shutters on cement block and plaster buildings, built to last. They are streaked and mottled with black monsoon stains. Above are apartments and homes, washing hung out to dry, kids hanging off crumbling railings. The buildings are solid, the doors and windows square and steady. Everything else: doors, curtain rods, shutters, is askew. The city is festooned with electric wires, a snarled canopy of current. A festival of lights.

Amid this are shanty tarps and tin roofs. You have no idea if the rickety shack you are looking at is a shop, a home, or both. These structures look fragile but seem to have stood for a thousand years. Here and there a massive tree survives, propping up the world.

You pass by a man squatting on the ground, his head tilted back. There is another man behind him, holding a straight razor to his throat. Only after they vanish in the dust of your wake do you figure it out: a barber, shaving a customer on the side of the road.

The road is curvier now, you take disorienting turns onto side streets with less activity and fewer crowds. It is still wall-to-wall buildings but the noise has lessened. Now and then you catch a glimpse of the hilltops: a familiar confluence of peaks catches your eye. You ask the driver what the massive cement building under construction on your left is, and he says they are building an IT park and call centers. You feel a sense of dread. The road curves left, right, left again. You look around, crane backwards, look up at the hills, look at the city surrounding you and think: no. No. It’s not. But the next curve is a sharp one to the right and you are descending towards the riverbed and then you have to acknowledge that you know where you are.

These are your dirt tracks, your goat paths. These are the fields where you helped gather grass for winter forage. There, where the IT center is rising: that was the maze of camelthorn bushes with their small, bright flowers and vicious thorns that left your calves bloody when the damn horse swerved into them. This rusty steel bridge, this is the shallow curve of the levee over the riverbed, hard packed dirt with a good sight line so it was safe to canter. 

Beyond the next curve, finally. This, here, is the straight open stretch where you could leave off the battle and let her run, full and true at a gallop, nothing between you, nothing holding you back, nothing before you but the hills. You had to remember to slow down before the next rise and look for rare but lethal trucks barreling over the hill: you could never hear them over the reverb of hoofbeats, the wind in your mount’s lungs and your own. The beating of your hearts drowned out the world. 

This is your refuge: built upon, populated, grimy. Strewn with trash. Crumbling as though it has been like this for a thousand years. As if there were never anything else here at all.

*  *  *  *  *

Some days later, you walk down to the Ganga during arti, the evening prayers to the sacred river. You have to stop at the market first, to buy offerings: little leaf-boats are piled with marigolds. A rose makes a scarlet ruffle amid the orange petals. There is a rough clay dish with a hunk of camphor to light, and two graceful incense sticks leaning out at an angle. The whole thing is about the size of a soup bowl. Although you are in a hurry, you raise the leaf-boat up to examine the construction. It is woven together by the fragile stems. Nothing more.

Priests are waving towering oil lamps at the river, and chants are broadcast on loudspeaker. There is a crowd milling around the priests and their dramatic accouterments but the verges are peaceful. Most people are carrying garlands of marigolds and roses, or little boats like yours. People spread out into clumps, then groups, then families. Some young guys strut around. The beach is rocky and the water is swift. It is not the color of any North American water you have ever seen. Not clear blue, this, but jade and opaque. You have journeyed to the source of this water, high in the Himalaya. There, it is white as milk.

You all huddle around and try to light the lumps of camphor in your flower boats. It takes some doing, what with the wind tearing down from the hills.

You take your shoes and socks off and wade in. It is cold. Offerings buck and scurry past. Rocks shift under your feet and the current urges you downriver. You stub your toe, plant your feet. You offer prayers for others, but when you light your own you don’t have anything to pray for. Everything seems ridiculous. Well, I carried it this far, you think, lowering the bright cup towards the water, so, here…just, take it. 

It is dark now. The flame of your offering mingles with the reflections of electric lights. The priests are wrapping up their ritual. For now, their voices cannot reach you. Take it away, you think again. The river rushes on, ignoring you. The river rushes on, unchanging. Because of this, you will never be the same.

 

Rishikesh 2011 076 copy

Saturday, June 18, 2011

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.

Friday, January 14, 2011

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!

art 020All-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 001Hair-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.

45 mins -- 001The Witch of Endo

Saturday, October 30, 2010

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.

Saturday, September 11, 2010

Sunrise: 6:55am

Urban had an appointment on the 80th floor of the South Tower at 8am on September 11th, 2001.

I was going to tag along (to NYC & the Twin Towers) and take a tour of the building. On September 8th, the overseas colleague he was scheduled to meet got sick and said he was unable to make the trip. Everything was cancelled. No NYC, no tour, no visiting friends, nothing. I remember we were both quite irritated. Urban ran his own business and last-minute, out-of-state cancellations cost us money. It was nobody’s fault.

We had planned to be away, so we went to Wisconsin instead. We were at The House on the Rock when we heard the news. Now, if you’ve ever been to The House on the Rock, you can imagine what that must have been like. If you’ve never been there, I’m not even going to try and explain. Maybe another time.

Anyway, we made it back to our hotel and sat horrified in front of the TV with the rest of the nation. It was many hours before either of us remembered where we had originally planned to be that morning. I can still feel the look on my face.

9/11 tore a hole in the world. I don’t know why I’m here to peer through from this side. I can’t believe that “someone was looking out for me.” That implies that someone was not looking out for the thousands of people who died. The thousands of people that we watched die. I just don’t believe that The Great Whatever is a micromanager, or maybe any kind of manager at all. I also don’t (like to) believe that my entire existence is mere chance. Some guy in Japan got the flu. I got to live.

We all remember where we were. We don’t often get the opportunity to remember where we weren’t. Life is unfathomable. We never know where it will end (up).

One thing is sure...every 9/11 around 6am, having been awake all night remembering, wondering and praying in my own weird way, the sun will come up and the sight of that rising light, the re-brightening of our world, will make me burst into tears. 

I search for words I don't have…and feel the life that I do.

Sunday, July 25, 2010

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.

Friday, May 14, 2010

Svaha~I make this offering

*Here is another one from the archives, circa 2000.

I am not this, consumed by flame; I am not that, washed in water;
I am not that which drew air, nor am I that which walked upon the earth.
I am the earth, I am the air and I am the water.
I am the fire.
All that which is impermanent, I leave behind.
Svaha svaha, svaha, it is no more mine.

My father is dead. I watched it happen, as he performed his own funeral service on the banks of the Ganges. I have heard that Sanskrit phrase, svaha, it is no more mine, over and over again, my entire life. It is said with every offering given on the altar, into a consecrated fire or sacred river. In my family, it is said with humor and resignation, over opportunities or items lost. Our mental shrug, Oh, well, its gone.

That ceremony transformed my father, my Tata, into something else: a Swami, beyond definitions of family, gender, religion. He began a journey away from of me and mine, and sought a life of service. Swamis were not a mystery to me; I grew up with Baba, a guru who initiated me into our tradition when I was six years old. I felt lucky, even as a kid, to know him. He made a family of everyone who needed one. He made the world magical.

When I was nineteen, my dad, struggling with diabetes and a heart condition, was given a last chance by the doctors: a triple by-pass. This was back in the days when heart surgery was a thing of fear and miracles. In the voice that lulled me to sleep as a child with countless guided relaxations (oh, how I relished being able to make him yell when I was a teenager!) he told me that his life was coming to an end, one way or another. He wished to survive, but if he did, it would not be as it was. It was time. He would begin the process of transition towards Swamihood. My mother would care for him after surgery. They would live together as brother and sister for a time. They would part eventually, husband and wife no longer. Not divorce, he stressed, as though I didn’t know. He would renounce his former life, his family. Our father was leaving us for God.

It seemed natural that this was happening. When he said that he would need his children’s formal blessing, I was startled, as if he was asking our permission to stay out late. I must have talked about it with my siblings, my friends, but I have no recollection. I don’t remember feeling rejected or abandoned. It was actually kind of exciting, as if he had won The Nobel Prize or something. Tata was ours, but never only ours. We always shared him with so much, his books, his disciples and his mission. Much was shared with us in return.

Watching him chant his own funeral prayers was another thing. His familiar voice rising and falling, rising and falling as he sang the ancient hymns. I remember sitting in the mild mountain sun, catching my brother’s eye, and thinking, our father is dying.

I am grateful for the Swami who rose from that pyre, although it took awhile to sort things out. What do I call him? (settled on “Tata Swami”) How do I introduce myself? I can’t say “I’m his daughter” anymore, can I? Or can I? There were a few awkward years where no-one was sure how to behave, what was acceptable. This was new territory for all of us. I avoided him.

My relationship with Swami Veda is very different now, but that’s to be expected, I’m not a teenager anymore. I got over my joy of being able to make him raise his voice. Instead I have found pride, solace and inspiration in watching him become. My father had always been a teacher, but a Swami is something more. And he has become more to me than a father. I look forward to the few times a year that I see him, long nights when we sit up and talk. We have an ongoing debate: Are things as they always have been or does the world really change? We argue but also laugh a lot. He still loves to tell jokes, most of them based on awful and elaborate multi-lingual puns. Through Swami Veda, I have finally gotten to know my dad.

No matter what paths I walk, they are extensions of an ancient tradition. I believe the teachings of the mountain sages, teachings repeated in the Bible, Koran, Torah. Teachings spoken by priests and shamans and druids, wisdom based on experience of living: Know thyself. Let go of what limits you. Respect others. Swami Veda has brought that to countless people. He has acquired the weighty title of Maha-mandalashvar, a Swami among Swamis. He has been responsible for bringing the leaders of Buddhism and Hinduism together for the first time in twenty-three centuries, to be the first ambassador of Hinduism in China in I don’t know how long. I may only see him a few times a year, but when I am really in trouble, it’s his phone that rings in the night, where ever he is. When I sit down to meditate, it is his voice in my head…relaaax your shoulders…breathe deeply, slooowly, smoooothly. The echo of the father I let go.

I don’t think it will be so easy to let Swami Veda go, which is ironic.

Not today or tomorrow, not in the next six months, but, holy or not, he is going to die, to make that final life change. I have seen it, under the mountain sun. This time, I am afraid. When Baba died, I knew there was no-one who could replace him; but we had Swami Veda. I had Swami Veda. When he is gone, who is left? Who will be there for me?

And I find when I ask that question, I have trouble meeting my own eyes; for who is left is looking back at me. You skirt around it in your own way; for me it comes down, bluntly, to selfishness. I want mine, my life, my choices, my freedom. I wanted my father. I want the illusion of owning my life…even if I know it’s an illusion. But I am a child of our tradition; I am my father’s daughter. The voice in my head has become my own.

There is no “one” who will take over, who will be Our Father. Who will be mine.

It is exhausting to fight your own truth; I imagine it must be a great relief to finally, totally, just be yourself. I understand why traditions of self-knowledge are not so popular. Revelation can be very disruptive. Compassion is hard work. Surrender takes some getting used to. Our voices are useless if we don’t share them.

I grow tired of the bondage of mine. I know I am not this that walks, breathes, which someday will be washed and burned. I hope that I will have the strength to look at this life I have hoarded so selfishly and be able to someday say, with relief, svaha, it is no more mine. And then live it.

Friday, March 19, 2010

All Who Wander

I wrote this in bits and pieces between 1999 and 2002. Usually when I read something I wrote a long time ago, I wince. It always seems slightly foolish, poorly written and melodramatic; I have to resist the urge to rewrite it completely.

Although I think the writing holds up pretty well, this one was especially hard to read: not only was it was written during a time of particular melodrama and deep personal uncertainty, but the newborn puppies mentioned at the end are long grown, and gone.

These days I’m trying to have some compassion for my younger self, drama and all, and let her speak for herself.

* * *

I set forth into the mysterious, crumbling beast of the city just as the morning haze is dispersing under the sun. Delhi awakens: flower-sellers set out bright baskets of marigolds and roses; shawl-muffled taxi drivers huddle around small fires, steam rising from strong brewed cups of chai; diesel belching trucks careen along deserted streets. The buildings are dingy in the rising light, caked with decades of soot. There is no bustle to detract from the filth. Refuse is everywhere, the atmosphere nearly post-apocalyptic. My taxi stops at a light and I look out the window at  worshippers traipsing into a 15th century temple with an AT&T ad painted on the side. It is all so…Indian; for a moment it looks alien, a dirty leftover country, and I have a fierce and sudden desire for the clean, predictable lines of the West.

I wonder what I am doing back here, why the tide of my heart draws me, again and again to return to the country I fought to leave for so long. I hated India when I was dragged here by my parents, and spent my years tense and snarling like a dog on too short a tether, straining for release, for home, for America. At what point did the meaning of home slide in my mind from the west to the east? The irony of it sits uneasily on me; I suspect that returning to America gave me the luxury to feel unfulfilled.

The taxi drops me at the faded sign for Lodi Gardens. Once a glittering example of Mughal decadence, the sprawling, unsafe acres are now overgrown with wild vines and towering Eucalyptus trees, their bark as white and smooth as bones. I creep along a narrow maze of trails through walls of brambles. It is just after the monsoon; nature is riotous, lush and green. I relax as the smell of city fades into the overpowering scents of jasmine and magnolia.

I have not explored these acres for nearly eighteen years, but memory leads me to a decaying pavilion standing amid scattered stones and slumped column fragments. I clamber around the ruined walls, picking my way through refuse and broken marble screens, and finally settle myself on a cool, pockmarked block of sandstone. I have a partial view of a Frangipani tree, waxy golden blossoms weighing the delicate branches nearly to the ground.

I survey my surroundings cautiously, wondering if I really have sat here before, if this view moves me with its beauty or if some chord of memory resonates, too low to be heard by my conscious mind. When we arrived in India, I was ten years old, and saw these gardens from the hotel where we passed the first hazy, crazy days. My father took us for walks in these gardens, droning about history and culture while I straggled behind in sullen confusion. The gardens were maintained then, and I had to struggle against their beauty.

The sun has climbed higher, straggling rays waver through the canopy to illuminate the journal laying open in my lap. I have not written anything. Suddenly, I become aware of the haunting notes of a bamboo flute drifting over the abandoned gardens. Startled by the sound of the mountains here in the metropolis, and relieved to be rescued from the accusing glare of blank paper, I scramble down to begin a mostly aimless search through convoluted undergrowth for the source of this melody.

I burst into a grassy expanse of a small clearing; there, squatting under the spreading limbs of a Sal tree, sits the elusive flute player – an old, wizened, saffron-clad sadhu, one of India’s wandering sages. His matted dreads hang down his back, forehead anointed with rune symbols, begging bowl at his side, bare feet look hard as cracked earth…eyes closed as he draws fantastic music into the air. I hover, fascinated and afraid of intruding.

He looks up after a moment, and regards me without surprise. “Sister,” he speaks in oddly accented Hindi, “look, I have come upon a brother who is without his family. Come and sit, that we may send him out of this life with comfort.” For the first time I notice, laying on the ground, breathing in harsh panting gulps, a half-bald, filthy stray dog. The sadhu reaches over and caresses the  animal’s sore-ridden flank. “Sit.” The old man speaks again, dark eyes snapping, “He has no family, Sister, and he is afraid.”

There is no way I am going to touch that animal. I open my mouth, but everything I consider sounds too petty, so I sink down to the dog’s side. The sadhu shuts his eyes and keeps playing. We sit as time passes around us, the music from the scarred bamboo lifts and trembles. Green parakeets wing through the trees, luminous streaks against dark foliage. I fell utterly disconnected from myself, yet painfully aware. Life ebbs slowly from the shivering dog who has somehow ended up in my lap, and as I look at him, this nameless animal of the streets, I feel a sense of vertigo. I am spinning away from myself, into myself, and I realize what this is to me, a dying dog in my arms, and I am taken, unwillingly, to memory.

* * *

Ruby was my first. First love, first death.

When we finally settled into our small town in the mountains, I began to fight bitterly with my parents over many unremembered things, but oh, I wanted a dog, needed one, as only lonely children can. My festering dislike of India had only grown with time, especially when I, the outspoken, sociable one, was unable to find much common ground with other children. My parents eventually relented, and I procured an unlikely companion: a 70 pound, military bred and trained Doberman Pinscher, the legendary Ruby Tuesday. She personified my rage: stubborn, protective and unpredictable.

We went nearly everywhere together, into the ancient hills, through the bustling bazaars. It was in the market that I often felt I had a glimpse of Ruby’s world, amid the varied and overpowering scents, I felt a kinship with her madly twitching nose.

It was not until after I had escaped India, finally, that she died of poisoned meat thrown over the wall by neighborhood thugs. I got the call from my mother in the middle of the night, waking in a cramped studio apartment next to my first lover. Like my rage, Ruby had been forgotten, buried deep. When I heard how she died, convulsing and vomiting blood, my anger overtook me and I realized how quietly things sink below the surface of life.

I had something of India taken away from me, and I wanted it back. I wanted to return to my wandering in the hills, easy in the saddle and my big, disreputable dog at my side. I wanted back eerie pine forests that filtered light into gloom, the impossible neon green of young rice paddy, and the serene sweep of the high Himalaya rising white and cool beyond the hills. As I sat sobbing on the edge of my bed in Minneapolis, I wanted, desperately, to have come home for her, just once more. The idea of her dying, waiting for me, was overwhelming. As I cried alone after my boyfriend rolled back over into irritable sleep, I realized the truth of every cliché about dogs. Ruby and I had been each other’s; in a way that only India had borne witness to, only India could understand.

I am back now. She is still gone.

The dog trembles once, spasmodically, and finishes dying.

I gingerly push the filthy carcass from my lap, thinking about fleas and communicable disease, and face the holy man’s shrewd face. He creaks to his feet and motions me to follow.

We wind our way through a corridor dressed with bold red slashes of hibiscus, talking about nonsense – Delhi traffic, crime, politics. I am in a daze and unable to contribute much. I cannot place the cadence of his speech, although it seems very familiar. I imagine he must be from some remote village with some dying dialect, perhaps raised by a family of priests, learning chants under the ancient pillared pavilion of a Banyan tree. I ask him where he from, and his native language.

He turns to me with a mischievous look, and says, in crisp, precise, unmistakably Oxford English, “I was raised to speak the Queen’s own, little sister.”

I gape. He ignores my stammered questions and explains that he was born in England, of Indian parents, educated at Oxford and practiced law. He never married, and he tells me, with an emphatic shake of dreadlocks, that every year seemed greyer than the last. He realized that he was living a life he hated. He sold everything, bought a one-way ticket to India, and has been wandering the sub-continent for the last fifteen years. The clipped accents of England emerging from this spiritual hobo totally disorients me.

“I was rich and comfortable, but ill at ease. I felt a lack without knowing what I longed for.” He speaks gently, as if to soothe a frightened animal.

I am still unable to speak, and only stare after him as he touches my head in blessing and dismissal. He moves off into the deep green shadows, empty begging bowl at his side.

* * *

It is a long time later, and halfway around the world that I find the image of the old sadhu reoccurring in my mind. Another dog is lying in my lap, breath rattling. Kalia is five, and has lived with me as long; she is in labor. Her usually sleek form is obscured with the bulk of pregnancy, her sides ripple with contractions. Her usually calm eyes are round and startled, as if she has no idea what is happening. I am exhilarated and terrified for her. It is a messy business, the bringing in of life, but with surprisingly little fuss, Kalia delivers nine wet, squirming Doberman puppies.

In a rare moment of accord, my husband and I sit next to the new family, proud as any grandparents. Urban glances over and gives me a wide, uncomplicated grin. I forgive him everything, for a moment.

So much has happened between us since I sat in the lush Indian garden, taking part in an experience that I think I have understood. We are on the brink of disaster, he and I, my mind spirals outward to the future, which has stopped being about us, and started being about me. India pulls me again, and I find myself looking at him and wondering what I am doing back here in America.

I have told Urban the tale of my strange encounter, read to him from my scarred old journal. When he looks thoughtful and says, “I understand.” I look at him with furious contempt, thinking, you couldn’t possibly.

* * *

Kalia looks very dark against the white walls of the waiting room, her attention focused completely on the plastic laundry basket full of puppies. They are three days old, blind and mostly ignorant of the world beyond their mother, who submits patiently to the prodding examination of the vet. There is something wrong with her, and I have forgotten India for the time being.

When the vet says “Lymphoma.” my hostility to Urban is also forgotten, and we reach for each other. Kalia, unconcerned, snoozes on the floor between us, nose pointed at her future.

I take her for a walk later, leaving the husband and the puppies to their own devices at home. The light has a peculiar bright cast, like deep water. Brilliant colours have bled the green from the leaves. The air feels alert with autumn. I climb around the crumbling, shabby cliffs of Minnehaha Park, slipping and scrambling against the rough, wild bark of oaks and maple. There are a few late wildflowers clinging through the season. I do not know their names. I wish Urban were here, and I long for the simple comfort of his presence.

This is our favorite place. My family used to come down here with a raucous band of neighborhood kids, chaos on the move. Urban and I have been coming here since we started going out, but this is my first walk by the creek since my return from India.

We come to the place where creek meets river. I haul myself up the twisted roots of trees, exposed by tenacious erosion and unreliable sand. The roots are over ten feet tall and look fantastic, otherworldly, as if the trees were in the process of humping themselves elsewhere. I am pleased with my perch. These trees have been here a long time, and the rate at which the sand has worn away from the roots has happily coincided with my growth. They are one structure I remember from childhood that has remained in proportion. Kalia cranes her head up and wags her stumpy tail uncertainly. When I pull out my journal, she huffs and trots off in disgust.

I have been scribbling for some time when I feel a sudden, familiar, dislocation, and look up, confused. For a moment, I swear I hear it, the deep notes of a flute, then I realize it is only my mind, memory plucking a note that resonates through me. I take a breath and look around, at this sweeping part of the world where I have lived, left, returned; at my dog, unfettered and flying across the beach; at the page open in my lap and the names of the two pups we are keeping, names chosen before we knew of Kalia’s dwindling days: Dagaz, the rune for the peak and turn of the cycle, and Asha, hope. I am drawn back to the image of an unlikely holy man, and of midwifeing a death in the garden of my childhood.

For the first time, I begin to understand.

Thursday, March 11, 2010

Thaw

Spring is ugly. It is cold and muddy. The yard is sloppy and muddy, the driveway is flooded and muddy, the dogs are stinky and muddy, the horses are shedding and muddy. Even the sky manages to look muddy. I am muddy too.

All winter, I imagine a Technicolor spring. I long for little green shoots bravely poking out of the ground, returning birds, blue skies, a photogenic season. After months shut in the house with my thoughts, I want to picnic in the pasture, to lay down on warm earth and throw my arms open to the sun. I want to thaw.

Instead there are endless days of rain, fog and drear. Roadside snow turns icy, black and toxic-looking. The receding ice age reveals eternally bright plastic bottles and flattened paper artifacts stripped of color. On our farm, five months worth of horseshit is exposed. It drives me nuts. I stand at the paddock gate and assess. Half the paddock is still under a foot of snow, the rest is boot-sucking bog. I’ll have to live with it awhile longer.

The horses, wet, mud-splashed and apparently balding, are itchy and irritable. Jetta glares at me. Styx widens her eyes in an I-really-don’t-LIKE-this stare. They look like a Humane Society ad.

I bring them into the barn for grain and to dry off. Jetta hustles for her stall, the dogs hurry to get out of her way. Sabbath purrs around my ankles and avoids wet mud on my boots. Styx plods in, then stops in the middle of the aisle. We all turn and look at her. I can hear water gently dripping off her coat. She plants her hooves, stretches out her powerful neck, and gives an almighty shake. It starts at her head—her ears flap wildly-- and works its way down neck, shoulders, body, butt and tail. Muscles and skin ripple and blur. Styx weighs a thousand pounds: this more like watching an earthquake than an animal. Muck flies. Everything in a ten foot radius is splattered. Sabbath vanishes; I hear the cat-door on the tack room slap shut. The dogs, frozen in place and stippled with fresh mud, look impressed. Jetta, safe in her stall, chews hay and takes no notice.

Styx, wet hair spiking out in all directions, lowers her head and regards me with one dark eye. She does not move. I step forward to wrap my arms around her neck; her coat is cold and dirty but underneath she is warm, steady and strong. I lay against my horse’s heartbeat. After a moment that seems to last a season, I straighten up and step back. She blows out a breath and clomps into her stall. I wipe God-knows-what off my face and go get the grain.

Thursday, February 25, 2010

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.

Monday, February 22, 2010

February

icicles 2010 008

There are so many other things I should be doing right now besides writing this. My house is in disarray. My horses need grooming. My tack room is dusty. Work is  piled up, minor crises  balanced atop teetering piles of everyday tasks. My personal life resembles my Inbox: requests, problems, crucial  projects and spam all jumbled together and overflowing like a junk drawer that, after years of jiggling and shoving and swearing and cajoling and I-really-need-to-clean-this-shit-out-ing, finally can’t be forced shut. It protrudes, half open, and later that day you bang your hip on it. It bruises.

This time of year usually finds me brooding and angsty. It’s a little known fact that this is the shortest month because, here in Minnesota, we wouldn’t survive another three days of February. Never mind the calendar, this is Midwinter. The snow is deep. The cold is steady and endless, purgatorial. I’ve seen some wretchedly hot summers. It can be miserable, but where heat pushes us outward to our baking skins; the cold draws us low into our brittle bones. Heat smothers us; the cold takes our breath. Heat saps but cold strips. My life is in as much or as little chaos as it is in July, but it looks different now, with the leaves ripped off and bare limbs showing. It gets dark so fast.

When I’m troubled or angry or confused, I look for the sense in it. I examine, dissect, assess; clear the way for the wild flash of insight. I reach for wisdom that transcends the mundane: the true, spiritual meaning behind the everyday chore of emotion. What’s the message, the lesson? What am I supposed to be learning? I’m convinced that whatever-I’m–going-through is a reflection and mysterious aspect of the Great Whatever. I want my suffering to be significant, revelatory, ameliorating.  What I want from life, more than anything, is to understand. I lust for illumination.

There are no answers for me in the cold, just endless tasks performed in the dark. In the absence of message or meaning, the only option is to embrace the mundane. Bereft of spiritual revelation, I notice that commitment and experience do not come through insight. They are earned. I cannot analyze or express or understand this. I can only know it.  And the only way of knowing is in doing. Answer email, groom the horses, dust. Put my house in order. Keep going. This is February. This is the lesson of winter: endure.

And for pity’s sake, book a vacation.

Thursday, February 11, 2010

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.

Our Lady of Morphine copy

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.