Monday, August 29, 2011

Heart and Wings

Why We Must Struggle
-Kay Ryan


If we had not struggled
as hard as we can
at our strongest
how will we sense
the shape of our losses
or know what sustains
us longest or name
what change costs us,
saying how strange
it is that one sector
of the self can step in
for another in trouble,
how loss activates
a latent double, how
we can feed
as upon nectar
upon need?

I carried a copy of this poem in my wallet for years, reading it every time I pulled out a dollar bill, a constant reminder, a necessary impetus pushing me to struggle, to live, to call upon my own "latent double," the stronger, stable, life-loving, life-giving self.

That latent self might dress herself in the mystical garb of Julian of Norwich, professing the necessity of a love that fully-encompasses the senses, that loves life and limb (no self-flagellating rending of skin on the forearms); a love that floods the body and the soul, a love that weds desire with completion: Love Yourself, through and through--bony feet and knobby knees, stretch-marked thighs and flabby stomach, deflated breasts and that often-self-maligned face that stares back at you in the mirror, but most of all, the large heart concealed within, beating and beating, struggling to keep pace, to keep compensating for all the bouts of starvation, all the times it has been split in two, all the times it has been filled with lead weights, pulled down by the suicidal dive of depression to the bottom of the deepest ocean trench. But that tired, wounded heart beats on, struggles on, despite all efforts to surrender to a self-proposed end.

That latent self, too, might dress herself in the wings of a Zebra Swallowtail butterfly, swooping and diving into sticky nectar, knowing that loss, while inevitable, can be contained and delayed--flap the wings into headwinds, seek out the sweet honeysuckle, drink sustenance even with the knowledge that there will be an end to the glorious flights on the tradewinds, that one day the black-and-white striped wings will beat and beat, then flutter, then eventually fall still, but not from a lack of trying, not from having lived a strenuous, heroic life in the face of predadtors and storms and obsessed lepidopterists, but will fall still of their own natural, end-of-life accord.

Why must I struggle? I must struggle for the 8 ounces of heart that beats and beats within me, trying to sustain me, forgiving all the damage I have myself inflicted, healing all the losses I have myself hollowed out. I must struggle for the invisible wings that beat and beat on my back, lifting me time and again from the bottom of the well, flying straight for the sweet nectar of food and love and forgiveness and grace.

This morning, I did not want to struggle. I actually said a small, desperate, non-sane-mind prayer, that I wouldn't wake up from anesthesia I'd receive from this morning's ECT treatment. I was overwhelmed by the sheer exhaustion of this struggle, by the dailyness of it, by its thiry-year grip on me. I prayed my heart and wings would stop beating, that I could simply just drift off, literally, into the ether.

Thankfully, that was not to be: I woke, shocked back into my struggle, into the necessity to do my absolute best to see it through, to persevere and return home to my children and husband and dogs and cat and Chinese Water Dragon, and friends and family. To promise them all, at least in this very moment, I will struggle, anchor myself to NOW, to what the present moment offers: that I love and am loved; that I need and am needed.

Because the only alternative, is one unfolding before me right now: a fellow patient, twenty-five years old, has been in and out of Eating Disorder hospital units for the past eight years (she was here, in fact, when I was here one and one-half years ago). Now she is on a feeding tube, her body reduced to the rubble of severe, what seems to be an almost-irreversible end to her anorexia. She is trying to get admitted to hospice care: "I won't ever recover," she said. "And there is no one to recover for, least of all myself. I'd just like to be allowed to die."

So I must keep my struggle close to heart and wings, beating, beating, beating.

Saturday, August 27, 2011

Notes from the Inside

A quick update for those who have been following my attempts at finding cohesive treatment as my computer time is limited (for reasons which will be revealed):

After failed attempts to gain admission to the New York ECT program (I must say, I wouldn't have minded some in situ Hurricane Irene action), I have been interred (oops, wrong word), I mean, I have chosen to place myself once again in the research hospital in Pittsburgh where I spent several weeks a few years ago. I apologize in advance for my irony; a defense mechanism, surely, as I am merely exhausted and frayed by the three week process of trying to find some comparable therapeutic program to that I was receiving under my now vanished psychiatrist Dr. B.

Initially, I was told the Pittsburgh program had a waiting list weeks long; as a result of circumstances, I waited weeks. Breathable depression skidded into its black chokehold. My therapist up at the Partial Program wrung her hands, at a loss as what else she could do except to suggest that maybe the time had come for me to try to circumvent the waiting list and simply "present" at the Pittsburgh hospital's ER.

"After all," she said, in genuine concern, "I'm worried you really are at that crisis point now."

Once again, I had to climb into my big bed with my kids and explain to them that Momma had to go to a hospital in Pittsburgh for a few weeks because the doctor who had been doing her procedures up in Erie was no longer working at that hospital. I pulled Sophia and Alexander close to me, holding them as tight as possible because I could see their eyes widening, realizing that their hold on me at home was tentative once again.

"I'm so sorry," I whispered. "You know I would stay here at home with you if I could. But you also know how bad Momma has been feeling these past few weeks?"

Sophia stroked my hand. "Yeah," she said. "Like when you and Daddy are on the couch talking serious and then you start yelling and crying."

"Mommy's just having a hard time feeling like her inside feelings are okay these days. I'm tired of being sad and mad for no reason," I said, "because you are the two best reasons I have to always be happy."

Alexander, solemn and thoughtful, sighed. "Who will take me to my first day of Kindergarten?"

His first day of real school with the Harry Potter lunchbox we picked out together. "A BIG BOY lunchbox," he'd demanded.

And then Sophia, in tandem, realized, too: "That means you'll miss my first day of Fourth grade?" Sadness, but more--fear and loss. All summer long, she'd been hyping up the transition to Fourth grade--worries over friends, water bottles, hair styles, eyebrow thickness, wanting to get "perfect" grades in "every" class because she intended to study hard "every" night. And she wanted me with her, still holding her hand--not too grown up yet for that.

But then Sophia hugged me harder, and said, "Don't worry, Momma. We love you always, even when you're sad and mad. You're the best Momma ever."

Whew. How's that for suicidal antidote?

So, last Sunday, Christopher and the kids dropped me off at the pearly gates of the Pittsburgh Hospital--they couldn't come in. I didn't want them to come in--the kids didn't need to hang around a psych hospital admission intake waiting room for hours upon hours, watching me pace, wring my hands, grind my teeth, prevaricate, minimize, and attempt to be honest about where I am, body and mind.

To make a long afternoon's story short, no beds in the general psych floor, BUT, according to the staffs' evaluation (and based upon my previous admission history there), I was well-qualified for the Eating Disorders Unit again. I was assured that my ECT treatment would still be considered top priority, though. After all, the ECT team there already had all my records waiting, as those self-same records had been waiting on the official Outpatient Waiting List for the past three weeks.

Seven days under my belt. This past Friday was my first ECT treatment in the grand corridors of this ECT research facility. Very different from my experience with Dr. B.. He was not there to offer any words of comfort, anything to soothe anxiety; he was not there to reach out and, literally, hold my hand as anesthesia began to take its effects. A different ER psychiatrist for each day of the week; assembly line process: a line of patients packed, sardine-like, on gurneys, wheeled, one after another, into the ER, then wheeled back out, one after another, into recovery.

I woke up with complete and utter memory loss. Bewildering and frightening at first. Of course, I've had some minimal, occasional memory loss associated with previous ECT sessions, but nothing so pervasive, nothing that lasted for hours upon hours. I truly had no recollection of where I was or why I was there. Indeed, in retrospect, while that aspect was frightening, what I also felt was a complete absence of an inscribed self.

What do I mean by this? A blank self. A self that has not yet been written on by decades of depression, no shameful, guilt-fueled suicidal impulses or attempts, by the ravages of an eating disorder, by the grapevine of scars on her arms (or at least, no memory of how they got there), no traumatic abuse history at the hands of a former boyfriend. Nothing. Nada. Relief.

Now, two days later, as you might probably guess, I'm racing a bit from the immediate and temporary manic uptick ECT can bestow. But I also realize, that with that complete absence of the inscribed self, I lose the hieroglyphs that matter, too: the past that gives substance and meaning. And I miss the story that I am writing now with my husband and my children.

As the ECT treatments progress over the next few weeks, the memory loss should wax and wane, always, for the most part, temporary, as Friday's was: I woke from my very deep, post-ECT sleep, and my Life came rushing back. What ECT promises in the long run, is not erasure or negation of the DEPRESSED SELF. I'm not seeking do-over, just a do-better. Though, as Sophia reminded me as she kissed me goodbye before leaving me at the hospital, "You are always the best Momma, no matter what."

--typed, hastily from "the inside"

Monday, August 15, 2011

Hole or Heaven?

“You can bury yourself in a hole, or walk your way to heaven.”
-James Reedy, my Yoga Master Extraordinaire

Two weeks and still no clear cut treatment direction. My now attending psychiatrist seems hopelessly hapless. Today, he tells me he will make the referral calls to the programs I’m hoping to find placement in ASAP for continued ECT treatments after his lunch break. One program in particular seems custom fit, like those elaborate, turn-of-the-century ballgowns wealthy aristocratic women were painstakingly sewn into for one evening of wear only by their maidservants: Columbia University has in inpatient research program dedicated to treatment resistant unipolar and bipolar depression with an ECT-focused approach. So the Doctor in charge wanted all my records sent by today and my referring doctor to call her by today.

Were the records sent as promised?

Non.

Did my attending psychiatrist call as promised?

Non.

Am I desperate?

Oui.

Even he knows that. In his own words? “If you continue to decompensate further in the next day or two, we’ll have to look at admitting you to the hospital.”

Decompensate. The inability to maintain good, functional working order in the face of psychological stressors. The image I always imagine when psychiatrists casually interject this word in their conversations with me is that of Mount Rushmore and all those famous, resolute, impervious, stony faces crumbling in a slow, dusty rockslide until there is nothing left but the gray impressions of what once was but never will be again.

I hate to think that I am edging toward the rockslide again. That I might have to disappear from home again, leaving my kids to wonder why I am THAT sick again, if I will be coming back, when I will be coming back, if I will ever be coming back to them again. If this program happens and admission happens soon, it probably means that I will miss Sophia’s first day of fourth grade, her BIG year, the transition year she’s been worried about all summer.

“Momma, you can’t send me to fourth grade with juice boxes anymore. It’s embarrassing. Only waterbottles.”

“Momma, do I have a monobrow?”

“Momma, can I get pregnant if I hold a boy’s hand for too long?”

“Momma, I want to study really, really hard every night so I get really, really good grades.”

“Momma, do you think my stomach is fat? Do you think I need to go on a diet?”

She needs me here, to help with all the messiness of these negotiations between the dream of dragons and the first blush of boys. Of course, the irony is she needs me HERE, alive, and for the past few weeks I’ve been vacillating about whether I should be here or burying myself in a hole in the ground.

And then there’s Alexander and his first day of kindergarten that I’ll be missing. That first walk to school with his backpack, that first kiss at the door to his classroom, that first day home with the proud, crazy energy, his breathless recitation of new friends and rules and the cafeteria and how he managed to wipe his own butt after he pooped at school and tried his best, but could I check just to make sure? Surely he needs me to kiss him goodbye in the morning and surely he needs me outside his classroom door so he can run into my waiting arms to kiss him hello? But again, if I’m burying myself in that hole in the ground, my kisses will surely be cold, without feeling.

And Christopher, beginning the new semester. The insanity of classes, of writing his book, of chauffeuring kids, of cooking breakfast, packing lunches, cooking dinner, scrounging up snacks, laundry, cleaning, dog walking, litter box cleaning, lizard feeding, bill paying, lawn mowing, loving the kids, protecting the kids, reassuring the kids, loving me, forgiving me, taking care of himself, washing, shaving, breathing, sleeping. How do I leave him with all that to take care of if I am being zapped in a New York City hospital? Of course, if I am burying myself in a hole in a ground, that is his job, without hope for relief, for good.

Bury myself in a hole or walk my way to heaven.

Tonight, tucking my kids into bed, my big king-sized bed, I held them against me, breathing them in, kissing them over and over. Their cheeks warm and soft. My son purses his lips; he wants mouth to mouth.

“I love you, Momma,” he says.

My daughter sighs. “You’re the best Momma. Now can you get me a snack? I’m hungry.”

Heaven. They are my heaven. They are why I keep walking. Even if I am crawling on hands and knees right now, breathlessly inching my way up Everest. They are why I aim for the summit.

Tuesday, August 9, 2011

Glaciers, Droughts, and Worms

To take my mind off the uncertainty of my immediate future--my present hospital, due to a lack of foresight in their hasty termination of my doctor, has no ability to offer ECT, and the ECT alternatives they suggest, Cleveland Clinic (2 hours away), does not want my referral, and Western Psych, in Pittsburgh, has long waiting list—I have been devouring books. Is there a limit to Kindle’s storage space? If I am not happy these days, Lord knows Amazon is ecstatic at the One-Click buys I seem to be making on an almost daily basis. Perhaps a psychoanalyst would argue that my ingestion of words and images are a substitute for the ingestion of food. The alphabet rolls across my tongue; I swallow sentences whole; paragraphs quell the hunger pangs; stories stuff me silly.

Over the past few days I’ve read several intelligent murder mysteries by Scandinavian and Icelandic writers, which means they tend to be set in icy, snow-covered landscapes. Rigid, blue bodies, frozen blood. Nothing warm; all breath crystalline and jagged. Imagery that seems to run parallel to part of my internal landscape. Even though it is summer and mosquitoes and humidity persist, I feel like I’m walking naked through a barren, arctic plain, the vise of depression cranked tighter and tighter, toes and fingers aching with cold, my heart, too, aching with cold. Looking at all the people I love and believing it would be better just to turn away and continue walking into the white-out conditions ahead.

Then there is the book I’m reading right now. Rose Tremain’s TRESPASS, set in Cevennes, France, during a decimating drought, and concerning two sets of siblings: one pair, consumed by a damaging love for each other; the other pair by a vitiating hatred for each other. Here, the landscape is mountainous, craggy, windy, planted over in lavender, grape vines, and apricot trees. Once upon a time, the main village was home to a silk worm industry, so there was the background noise of millions of silkworms, chewing and chewing their way through tons of oleander leaves. This, too, seems to run parallel to the other half of my brain’s emotional hemisphere. Scorched, burned over, the dangerous bipolar landscape, up the hill and down again. Maybe depression’s drought conditions: brain parched of serotonin and dopamine. Then there are the competing forces: love the world, hate the self; love the family, hate what I do to them. And the constant background chewing-- IT chewing ITs little wormy holes through my brain’s intelligent sponge, leaving me with less resolve, less resilience, less belief that the cisterns will fill again.

But I’ll finish this book tonight. So what do I read next? Too many of the treatment programs I was in suggested the pat, sentimental, inspirational, affirmative drivel (Tell us how you really feel about “100 Ways to Heal the Ironic Woman’s Soul”). What can melt the glacier? What can end the drought? What can drown the worms, stitch the holes?

Maybe the answer is not what I should read, but what I should write. Maybe I need to start feeding the imaginative fires myself. Using my imagination = an act of hope = believing I will see tomorrow.

Maybe I need to smear rainbow paint on my cheeks, strip down naked, glue feathers to my ass and hoot and holler my own rain dance. End my own drought = fire up the synapses = my own version of ECT = write my novel.

Maybe I need to follow my own daughter’s lead and kill my own worms. Sophia has a Chinese Water dragon and feeds it a diet of superworms. One of the more disgusting things that she has to do though, is crush the head of the superworm before hand-feeding it to her lizard, otherwise the worm could chew its way out of the lizard’s stomach, thereby killing it.

Sophia, fearless daughter of mine, champion of what is necessary and practical to sustain life, takes the sharp edge of a soda can tab top, pinches the worm between her fingers, holds it still on the table, then squashes its brains flat. Couldn’t I approach IT and Its wormy ways with the selfsame unsentimental determination to make IT a mash?

Maybe I need to stitch my own holes. Language, the logic and magic of one word after another = the thread of narrative = the story unspooled, soon sewn.

Thursday, August 4, 2011

Hell Week: Hazing via Head Shrinking Hospital Administrative Imbeciles

Let’s just say that I am teetering on the twin edges of Fuck-It devastation and Bleak depression, the incurable smallpox varieties. I am trying to keep my stitches from unraveling, keep the hem from dragging along the floor, keep my dress on, buttoned, panties up. Because really, what I long to do, in extreme maudlin, exaggerated, hyperbolic fashion, is rend all fabric from my body, run stark naked into the nearest, deep body of water, and take a deliberate, long, head first dive.

I apologize in advance. But this has been a shitty, shitty week, and it’s not even over. Last week, I was barely hanging on, but managed to stay afloat, buoyed by my perspicacious, compassionate psychiatrist, the doctor who has served as astute manager of mood as well as empathetic therapist this past year, not to mention the careful administer of the electrical voltage to my brain circuitry. Literally, the only psychiatrist capable (and credentialed) to do all this, to understand and treat ALL of me (the Bipolar Disorder, the Eating Disorder, the Alcoholism, the Self-harm), ALL at Once, in the entire northwest Pennsylvania area. *This is an important detail that you need to have at the ready in a mere few paragraphs.

So. My psychiatrist saw the warning signs, the rapid depressive descent I was taking over the past few weeks and decided an immediate course of ECT would be effective and we would start on Monday.

“Okay,” I said. “I can hang on until then. Hope that things will get better even against my natural pessimistic inclination.”

“And no cutting? Because you know the consequences.”

“Yes,” I sighed. “I lose you as my doctor.”

“And no trying to kill yourself between now and then? And if you seriously consider it, you will call me regardless of time?”

I shrugged. “I don’t want to be a bother.”

His pointed stare.

“Okay, okay. Regardless of time.”

“And you will eat something. Protein. I need something to work with in order for ECT to work. Yogurt, granola, some fruit? And no throwing it up?”

I nodded.

“Say it,” he said.

“Okay,” I said. “I can do that for you.”

“You matter, and not just to me. You matter to a lot of people. Your family, for one. Your kids. You decided to bring your kids into the world. You’re responsible to them—you have to stay alive for them. For them, not for me.”

And then he was gone for the rest of the week at a conference and I was left to hold on to that hope and promise he offered once again. ECT worked before, last Fall, when I fell and fell and fell. Surely it could work again.

All last week, even though I struggled every day with urges to cut, with darker urges towards the implacable Furies, I held onto my doctor’s words. His words, his instructions are the first that I’ve really ever listened to, or respected, or truly acted on from a mental health professional. In part, because he calls me on my b.s., sees through my irony and defensive self-deprecation, pokes and prods and sometimes shoves in all the right (wrong) places. Generally, when he tells me to do something—not cut, eat an apple, call or email and tell him I’m still alive—I do. So I held on all last week—to my kids, to my husband, to my friends, to AA, by my fingertips.

On Sunday, a strange, late afternoon phone call from the hospital: screw-up with insurance, ECT delayed. I immediately sent my doctor a desperate text. He was equally confused as everything was in place and ready to go before he left for the conference.

“Don’t worry,” he said. “Be ready to come up in the morning. I’ll figure it out.”

7a.m., he calls. “You’re good to go.” Miracle worker.

When I get up to the hospital, with husband and kids in tow, we have a quick, but direct conversation. It would be best to admit me as inpatient as he believes I should probably receive 3 treatments, rather than 2 this week, and with the possibility of Christopher and the kids gone from home for a few days, he would feel better with me under observation, i.e., SAFE. The plan: Go home, come back up on Tuesday afternoon, check-in, stay the rest of the week.

Really. Once he said those words—SAFE here, under (his) observation, I felt relief, felt the struggle leave my body, felt like I didn’t have to be vigilant for myself for a few days—could cede the constant, anxious watchfulness over to his more capable hands. Just give up the 24 hour guard duty for a few days and close my eyes, try to turn off the thoughts, the voice of IT, yield, surrender, be literally under his trusted watch.

Tuesday: I arrive at the ER to check-in as instructed. Anxious, chewing my nails, trying to breathe. But still, absolutely certain I am doing the right and necessary thing.

“Dr. B. sent me here to check myself inpatient for ECT.”

Administrator: “Dr. B. doesn’t work here.”

“Of course, he does. He told me this yesterday. I had ECT yesterday and he decided I should do this today.”

Administrator: “No, Dr. B. doesn’t work here anymore.”

The long story short? Dr. B. came back from his conference to the “shock-and-awe” campaign of the hospital administration. Immediate termination. He was hired last summer as Head of Psychiatry to create a new vision plan for the hospital and psychiatric resident program. Apparently, the vision required re-vision, which meant pissing off the old (provincial) guard, likely getting his (better, smarter, more efficient) way most of the time, and expecting change to happened yesterday.

I can’t really imagine what this means to him, but I know that he is a conscientious, empathetic, responsible doctor, so this is not how he would have wanted to leave his many patients.

In my own selfish, narrow world?

ECT has been suspended. No one else is licensed in the hospital. No one else is licensed between here and Cleveland or Pittsburgh, cities 2 hours away.

I have not been given a contingency plan by the hospital, no substitute. They made no plan for what would happen when they couldn’t offer someone like me who had started ECT the rest of her ECT treatment. An analogy? Like starting a medication and then abruptly withdrawing it without regard to side effects, withdrawal symptoms. Not to mention, medications cannot substitute for ECT as I am medication resistant. Tried them all—the anti-depressants, the neuroleptics, the anti-psychotics, the anti-anxieties. Nothing else gets me out of the hole as effectively and quickly as the current of electricity resetting neuro-pathways. Not immediate bliss, not innocent happiness, but it provides respite, a refuge from the Furies, restful shelter from the helter skelter.

Now? Nothing. Not even a phone call from the next-in-line doctor in-charge as to what has been put into emergency placement for me. Of course, this next-in-line doctor is still in training, isn’t fully credentialed anyway, so I don’t expect real, complex help there. Nor do I expect a doctor to work with my nutritionist like Dr. B. did on a weekly basis.

Oh, there’s that issue, too. Dr. B. ordered a bone density scan and blood tests to check up on some nutritional issues he was concerned about. No one seems to know where those results are; no one seems to have the time or professional courtesy to pass them on to me so that I can pass them on to my nutritionist and perhaps gain other clinical advice.

But really, what is most devastating, and I mean truly sobbing-off-and-on-all-day devastating is the fact that I have lost the one doctor I have trusted with my life for the first time in my life. Despite however terrible, shameful, humiliating, terrifying, or self-condemning my thoughts or actions have been over the past year, I told him everything BECAUSE he listened to it all, did not humiliate or shame me, but offered clear, concise instructions as to what I could do to improve my stability, to extend the periods of a quieter mind, to change deeply entrenched and seemingly unchangeable thought patterns, to learn to choose higher cognitive functioning (“You’re smarter than that!”) over impulsive, lizard brain (“You don’t need to cut your arm over and over anymore! Just talk to me. “), to begin to imagine that I might be able to make peace with all that plagues me and find, miraculously, a cure: mind, body, and spirit pulled together; medication, ECT, therapy, balance, forgiveness, love, self-smarts, and a clinical, clear understanding of my own particular brain chemistry—its triggers, its basement of horrors, its strange proclivities and obsessions, its passions and joys, its despairs and its necessities.

And now he is gone. And I am left, bereft. I don’t know how I can do it all again: find another doctor somewhere within 150 miles that can tackle all of IT, a doctor that I can fully trust, a doctor who has his integrity and confidence, his professional brilliance and humane empathy.