Friday, December 23, 2005

going up?

well, that's it.

the day before yesterday i had to quit taking a very lovely anti-psychotic drug that i was on because i have this huge and very severe manic-depression and mood stabilizers just aren't cutting it.

so here's my story: i have just gone on vacation. i'm at home, but i'm on vacation. tomorrow is christmas eve and it's only been since july that i noticed the presence of God in the universe, and i'm pretty sure i've heard God speak to me.

it's hard to tell, because i'm a fruitcake already, but it's been three times so far that i'm certain it was the voice of God.

every time i go to church i end up crying and i'm so happy to be there i can't even form words. this morning i went to meet with the pastor about actually joining the church and while i was waiting for her i had a seat in the sanctuary.

"how did that feel?" she asked me.

well, there aren't words. it's like getting struck in the chest by a two-by-four, only somehow i feel i'm better for it.

but i just cry. not the kind of howling that i do when the mood swings come, but gentle crying. the kind you get when you realize you have by some small miracle ended up in exactly the right place.

i wandered from church to church for a while; i wasn't church shopping, not by any means. i had a hunch where i was going to end up, and why.

but i'm afraid of the unknown. and i spent a lot of my autumn on the road. and i'd been thoroughly unchurched my whole life. so i wanted to practice, to work out some of the jitters. and i wanted to come home with a whole block of sundays to settle in, not to come and go.

i intend to stay.

so for a while i went to church wherever i happened to be on sunday morning. people of God are everywhere if you know where to look. and i was welcomed everywhere i went: i was among presbyterians in the adirondacks and in central new york, methodists in southern vermont, baptists in central vermont. i went a couple of sundays to a conservative bible church in new hampshire; not a congregation to which i could belong, but the singing is pretty good and all i really wanted was to be among people who had gathered for worship.

there's also one congregation i am not mentioning, not even vaguely, for reasons that i'm not going to discuss, but i loved them. i will go back and back and back when i get the chance. i wouldn't be at home there, but to visit among them is pleasing and good.

but anyway, it gets to be the first sunday of advent and i really want to be at home, but instead i'm in central new york. i think maybe, just maybe i should go home for sunday and come out again on monday, but no.

and it turns out i'm exactly where i ought to be. come to think of it, the number is four. God has spoken to me four times. i'm pretty sure of it.

and God is weird that way, too, because apparently he's very good at giving only half the directions.

so by the time i get home, to what i consider my own church even though i have not yet been to a service there, i am practically starved for it.

it's hard to explain.

i think the pastor gets it, which demonstrates a fairly good ability to grasp some of the weirder concepts.

you want to know the first thing i noticed about her? her hands. i loved her the moment i met her, which was a long time ago for just the time it took for them to transport me from the end of my road to the ER.

talk about a string of lucky conincidences.

coincidences? i'm beginning to think there aren't any.

but anyway, i came home from a routine procedure out at the hospital - ironically i had told my mom in the morning that i would rather die than vomit- and i felt kind of jittery when my mom left me at home.

then i felt really bad, but tired. so i thought i'd take a little nap. but then i was having trouble breathing. i wasn't particularly alarmed; i have asthma.

but i couldn't get comfortable. and i thought i'd just toss on my shoes and go for a walk, maybe get some fresh air.

i have kind of a muscle spasm in my jaw. it feels like it's pulling a little to one side.

but i'm out in the driveway and my neighbor just happens to walk by and he asks me how i'm doing. it's just chitchat, but in the time it has taken me to put on shoes and walk outside, my tongue is swelling up pretty impressively and i tell him to call my mom because i don't know what's wrong, but i'm sick.

and he stays with me and he has becky make the call and she gets a busy signal which is lucky because by this time it's all i can do to choke out the words "too late. 911."

it's the last thing i'm able to say for hours.

and i hear becky arguing with the dispatcher about where to meet; oddly enough, the rescue squad prefers to pick you up where you are.

becky understood that there was no time. she put me in the car and raced me out to the end of the road to wait for the ambulance.

i am in the middle of a very severe and classic drug reaction.

by this time my jaw is pulling so far and so hard to the left that i have to hold it in place manually. i rmember hearing that the muscles of your jaw are powerful enough to break the bone, and it's not a little factoid that i'm enjoying.

i have this tiny little space i can feel at the back of my nose where my tongue hasn't yet swelled to fill the space and i'm trying to concentrate on that and the EMT is telling me not to close my eyes.

and she has these beautiful hands. there is a warmth to her voice, a depth to her eyes. it's a gentleness and calm that i very much need and do not ever forget.

i also do not forget the fear and the pain when considering introducing any new medication into my system. unfortunately, i need a lot of medication to keep me a viable member of the workforce.

with good management and good medication most of the time i look like anyone else out there, if just a little odd. without it i am held prisoner in huge swooping mood swings of almost incomprehensible frequency and amplitude. and at some point the waves come so rapidly that there's no tracking the frequency; it's more like a flutter.

it is painful and it is deadly and i howl like a beast and curse every last person who tells me that i'd be missed if i was gone.

i have a lot of drug allergies; you know, sulfa and a bunch of the usuals, but i also get lithium poisoned at very low dosages. the kind of lithium poisoning where they test you for narcolepsy.

and i went through the whole canon of mood stabilizers. either they didn't work or i couldn't tolerate them. depakote worked pretty well, but after i was on it for a couple of years i became very suddenly and severely allergic.

it's change of shift on a friday afternoon and my tongue is swelling and i have hives on the soles of my feet. not just the soles of my feet, but you get the idea. it's a roll-the-crashcart kind of reaction.

and the social worker (who just happens to be there) is wearing a pair of earrings that she made, and she takes one out of her ear and dismantles it, removing the coin from the bottom and pressing it into my hand.

she holds my hand closed around it and she says: "there. that's for survival". i do not let go of the coin for hours, maybe days. for a couple of years after that i carried it in my pocket until i had too many close calls with losing it.

i don't know what i would do if i lost it. i have lost a lot of things in this life, important things. but losing that coin would take a wide stripe out of me.

so they had to flush my system. no drugs. none. do you know what happens when you have a very severe manic-depression and all of a sudden you are removed from every medication you're on?

if you do, please don't tell me, because i'm pretty sure i don't want to know. sometimes by grace or good fortune you are allowed to forget a few things.

afterward, they started trying off-label drugs known for psychiatric side effects. one was so bad i went through weeks of full-blown room-spinning withdrawal.

apparently it's not uncommon for doctors to prescribe drugs for off-label purposes, and sometimes with very good result. a lot of the anti-seizure drugs are also good for manic-depression.

i was on neurontin for a while before the justice department went after pfizer. while it is legal and common for doctors to prescribe off-label, it is not legal for drug companies to suggest it.

and this is how i came to be on it:

my doctor says to me "well, you've exhausted the canon of mood stabilizers. there's an anti-seizure drug they're starting to use for manic-depression and there's not much in the literature about it, but i think desperation makes you a good candidate. i've only prescribed it once before, and that was this morning. you can try it if you want."

i did. and it worked really well for a couple of years. and then it didn't.

and they keep inventing new meds, ones that maybe will work and i started one (after a full-day allergy challenge test) and it worked better than anything else but sometimes the sheer strength of the beast overcomes the drug and it takes me over.

i stop sleeping. i go off the deep end.

and my doctor thinks an anti-psychotic is in order.

what? for me? aren't anti-psychotics for other people?

well, it has mood stabilizing properties. and sedative properties.

it's a powerful drug. and i refuse an allergy test. i feel like playing russian roulette. and i say so.

but the drug must be phased in slowly, which makes it less of a risk, and it also means you have to taper off of it when you quit.

but it works. it works really well.

and here's where the story kind of winds in on itself. it has been postulated that time does not function the way we perceive it, and if my life is any indication, i'm inclined to believe it.

because all of a sudden it's much, much later and due to another long string of "coincidences" i'm lying in a tent in new hampshire and i have just recognized the presence of God in the universe.

and i start writing to people and calling them and asking what they can tell me about faith and prayer, and for some reason i call that EMT whose hands and voice i had so loved.

she is one of the very few people who answer my call. she invites me to come talk to her. she is very patient and gentle and helps a lot.

if you're clever you already know that she is the pastor of that church in which i was sitting this morning.

it was kind of an interesting entrance to attendance there. i showed up one sunday, and you may or may not know that choir people are notorious for recruitment; they can smell new blood miles away. and they come and talk to me, not realizing what i am.

they joke about not recruiting me on my first day.

i do not intend to join the choir. it's complicated why not, and it will not help your understanding to know that i'm a musician by training and trade.

but after that first sunday, God speaks to me. the by-now famous "you will bring your gifts to that church" conversation. and i just show up at choir practice without warning. they take me in as if i am a gift to them and maybe i am, but i can't help but think that the gratitude, properly placed, is mine.

God did not say to me "join the choir", or "bring your gifts to church"; God said "you will bring your gifts to that church"

THAT church. gifts. plural.

so i kind of just take a place as if i belong there, and i do. it's kind of hard trying to explain to people in the congregation exactly how i came to show up. mostly i just deflect the question by telling them that it's a long story, which it is.

to PROPERLY tell it, i think i have to go back to at least 1963, a year before i was born, maybe even 1934. and to PROPERLY tell it, you have to assume that time is not linear.

so i mostly don't explain my presence, and in a very short while i've come to enjoy some interesting versions of the story of how i got there, all of which are made of whole cloth. it seems that when people don't have a comprehensible story, they make up something that fits their general world view.

i used to go visit a woman in the advanced stages of alzheimer's. i didn't know her before she had deteriorated so severely, but for a little while we were roommates.

because she had no short-term memory, if she was alone for even a minute it seemed to her that she had been alone forever. so i spent a lot of time holding her hand, and she liked it when i sang to her.

they released her to a nursing home. she wasn't long for the world, and i made them tell me where she'd gone. it was a clear violation of the rules, but they told me anyway. i kept going to see her, to hold her hand and to sing to her. in her mind, i was her friend from high school, her cousin, her neighbor. any idea she could understand. the staff somehow was of the opinion i was a devoted grand-niece.

no, just a friend.

but anyway, i walk into that church as if it is my home and it is advent. i get the general concept; i've heard the story. but i do not understand it writ large. i just don't. its magnitude, its transformative properties are too much for me to grasp and i'm doing my best not to package it up into a smaller unit i can wrap my brain around.

meantime, i have just put two and two together to realize that the reason i have been growing progressively more uncomfortable over the last few weeks is that i am developing what likely will be a deadly allergy to this new and effective drug. the one that needs to be tapered on and off. i have gotten to the point where i have hives and raw patches on my skin and i'm wheezing a lot.

and the realization dawns on me just after i've taken the night's dose. so i toss down a buch of benadryl and hunker down until morning.

of course, i have to discontinue the drug immediately. i am now left very suddenly at the mercy of howling, yowling, yammering mood swings and tomorrow is christmas eve and i can't begin to imagine what would have been working in me, even with drugs that work.

how do you face that moment, completely unprepared? i suppose if you are taught bit by bit from your childhood how to grasp the enormous expanse of God's entrance into our small flailing world, you might just move into it as you might move from winter into spring, or even as you might move from tuesday to wednesday.

me, i've never seen it before. not with any understanding of its importance, and i feel like i'm standing on the edge of something huge and deep, incomprehensible and completely central to my soul.

in short, i am coming home, only i've been gone so long that i don't remember what home is like.

i keep being reminded of that last part of james agee's knoxville, summer of 1915:

May God bless my people, my uncle, my aunt, my mother, my good father, oh, remember them kindly in their time of trouble; and in the hour of their taking away.

After a little I am taken in and put to bed. Sleep, soft smiling, draws me unto her: and those receive me, who quietly treat me, as one familiar and well-beloved in that home: but will not, oh, will not, not now, not ever; but will not ever tell me who I am.

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