Monthly Archives: August 2010
I step off the scale. Another stupid, meaningless number. I “passed” this week. That means no hospital. At least not this week.
Dr. K says to me as she’s gathering my chart and getting ready to leave the room, “Dr. P tells me you’ve been water-loading. We discussed this….”
Then she says something and I haven’t a clue what she is talking about. Maybe I don’t want to understand. Maybe I don’t want to listen.
Then she clarifies and says it’s okay if I water-load so long as it’s the same amount each week.
Later, I step off the hospital shuttle and thank the driver. The #73 bus is already here, but the door is shut while the driver is having his break. He is discussing some bit about his work conditions with another transit employee.
Wow, another world.
I hop onto the bus, thinking, how much longer can I continue to lie and cheat? Who am I really lying to? Who am I deceiving?
Myself, obviously. But here’s a question rattling around in my mind: Is it the eating disorder that’s deceiving me, or has it gone beyond that, and is it now me that’s the liar and cheater? Have I become my eating disorder? Am I nothing but a living, breathing ED? Am I nothing else now?
These are very stupid, stupid questions. Maybe the hospital gown I was wearing actually weighed three and a half pounds. But a number is only a number.
I desperately want to tell my therapist that therapy isn’t helping. But at the same time, I want to tell her that therapy is one of the things that is keeping me alive. Without my twice-a-week therapy sessions, which I never miss, I would descend rapidly into Anorexia Hell. Yeah, life seems to get better, get worse, get better, and there’s this downward trend, but therapy is keeping me above water. I may be moving further from shore, but I am not drowning.
Yeah, therapy isn’t making me improve. No “treatment” is making me better. I don’t think “treatment” is the answer. Something else is the answer, and I’m not sure what.
I do have a life outside of these three-times-a-week appointments (twice-a-week therapy and weekly weigh-ins, plus monthly check-ins with Dr. P). These appointments take up…let’s see…about two hours a week, plus another two hours and 15 minutes in waiting rooms (I come early). That’s four hours 15 minutes. There’s a lot more time in the week than that for “non-treatment.” At least I don’t go to a day program, which is 30 hours a week.
Some people center their lives around treatment. At this point, with the threat of hospitalization looming, it is hard for me to avoid constant worry about my treatment fate. But it is time to stop worrying and start living.
How do I quit this worrying? Well, eat, obviously, and get them off my back.
I step off the #73 bus. The $71 bus comes immediately. I still haven’t taken off my fleece jacket. It is 85 degrees out. Jeez. What the heck am I wearing a fleece jacket for in this heat? Is it because the bus is so friggin’ cold and I have no meat on my bones to keep me warm? Is it because I want to hide my body?
The $71 bus leaves me off across the street from the CVS, where I buy toilet paper and dental floss. Neutral items, not food related. Relieved, I pay for these items. I do not remove my fleece jacket until after getting out of the store, because I’m afraid of running into a former neighbor in there. If I do, she’s bound to make some rude “comment” about my body. Why do people do this? Am I supposed to answer, “Wow, you’re so fat!”?
I cut through a parking lot, through the park, and down a walkway in the woods and a dead-end street, coming out across the street from my home. I look both ways before crossing the street–several times, back and forth, back and forth.
Why do I look both ways so many times? Why do I stand as far away as possible from the train on the subway platform? Let me tell you something: Anyone who has ever thought of jumping–I know this–does not stand on the edge. They stand as far away from the edge as possible, for fear of accidentally/on purpose falling off. I always look both ways over and over, because carelessness/purposefulness can strike anytime. And Puzzle desperately needs an intact mama.
After looking both ways, cars stop for me, on both sides. I wave–happily–thanking both of them, and cross to the other side. I ask myself if I should put my jacket back on before venturing into my building, to hide myself, but–now this is wicked stupid–what if someone saw me doing this? Wow, is this paranoia? What is it?
I enter the building, and peek into the dining room. Nope, there are people there. Not safe. So I go up the elevator instead. Quickly, I turn right, rush down the hall, arrive at my apartment, put the key in the lock, open the door, and I am safely home with Puzzle.
Safe. For now.
I went to Tedeschi’s again to buy a 2-liter bottle of diet cola–their brand–99 cents plus five cents MA deposit–total $1.04. I brought with me–that’s right–a dollar bill and four pennies. I didn’t intend to buy anything else.
This embarrasses me. I go in there frequently, too frequently, to buy a 2-liter bottle of diet cola and nothing else. Well, why the heck does this skinny girl buy diet cola and nothing else? Does she drink diet cola instead of eating? What’s the scoop here? And why doesn’t she buy root beer, something with calories in it, for godsakes?
Yeah, I’m embarrassed. I try to hide my body. I calculate: If x employee was working at 11am today, will he still be working at 7pm, and see me buying yet another 2-liter bottle? Or will the shift have changed? I calculate: what is the likelihood of my running into a former neighbor at this hour? Once, former neighbors caught me hurriedly stashing not one but two 2-liter bottles of diet cola into my knapsack. I ask myself what they thought of me. Probably, nothing, my logical mind responds. But my ED mind is all over the place.
Yeah, this heavily reminds me of something: Binge Eating Disorder. BED, the days past, when I went to stores and bought cakes–Entenmanns, frequently, cookies, M&M’s, candy bars, cheesecakes, pies, everything, came home, and devoured it all at once. Sometimes, I had no choice, being a desperate pedestrian, to go to the same store several days in a row, and yes, I suspect the employees did indeed wonder what I was doing. At the city drug stores, and places where I didn’t go frequently, or at supermarkets, where I could be anonymous, no, they didn’t know, though always I worried that everybody–customers, cashiers, baggers, passers-by, everyone–knew my vile habit. But at the tiny convenience stores–yes, in hindsight, they knew. They knew exactly who I was.
As I sit here today and look back on that hell I went through, I wonder how I survived it all. I wonder how I made it from day to day, trying nonstop to avoid the next binge, the next trip to the store to buy foods I gorged myself on, the next nightmare stuffing the food into my mouth until my stomach was full and my throat would accept no more. I remember the shock I felt afterward at what I had done, the sheer horror of it, the shame and guilt and knowledge that I was Evil and that I had done and felt and seen and known something Evil and had been to Hell and deserved to stay right where I was.
Compared to this, my guilt over buying a 2-liter bottle of diet cola, and having people witness me doing this, seems minuscule. Yet the obsession I have about my weight, and about food and calories, and my drive to starve myself–these are powerful indeed. Someday, I hope, I will look back on this and either laugh or cry. Or maybe I’ll be relieved. Relieved that I don’t have to cross Main Street to stop at Tedeschi’s anymore for anything–junk food or diet cola–nothing at all.
Sometime in 2008 I crossed over an ED Main Street, and haven’t returned. I suspect I won’t cross back, because crossing the ED street is too scary, but maybe there’s a bridge somewhere, and I can somehow find it, or someone will show me the way. Maybe the bridge is a gentler, softer walk, back to the other side, back home again, back to the way I was before, back to me.
Is there a bridge? Will you show me the way? Will you guide me, take my hand, lead me to the entrance, up the incline, and down the other side? Will you help me be strong and brave and steady as I walk across? Is there such a bridge? Maybe not. But maybe, just maybe, there is.
There are many kinds of ED treatment available today. People who develop ED’s in this decade are indeed fortunate that the knowledge and experience of professionals is much greater than it was when I first developed anorexia and subsequently binge eating disorder in 1980.
Those of you old enough may recall that Karen Carpenter died in 1983 of anorexia nervosa. Some of you are young enough that you don’t even know who Karen Carpenter was. She was one of the best-known singers of the 1960’s and 1970’s. She had an angel’s voice. All the money and fame she had did nothing to help her. Her friends were desperate and didn’t know what to do, as nothing was known about the disorder. She kept it hidden from the public throughout her career. Her solo album was released posthumously. I was in the hospital (for my mental disorder, not the ED, which doctors ignored) at the time, and was deeply affected by her death. The nurses didn’t understand how I could be so devastated over some celebrity I didn’t even know personally. But in a way, I did very much know her.
But I digress. There are many treatments available today. There are hospitals and various treatment centers that specialize in ED. You can see a nutrition specialist. There are therapists and psychiatrists that specialize in ED. You can go to various levels of “step down” programs for ED, which include “residential,” which is like an ED halfway house, where you go to live. There are ED evening programs, where you bring your dinner, and have groups. These generally meet 6-9 at night several nights a week, and are designed for people fairly along in their recovery who work during the day or go to school. These can be fairly long term. There are “partial” programs, that get people back on their feet again after the hospital, which meet 9-3 generally. You still have to take time off of work because six hours of the day are taken up by this program. These have a “supervised” snack and lunch. The rest of the time is taken up by groups. It is short-term, just a few weeks. Another form of ED treatment includes various types of independent outpatient groups that you can go to, generally run by a specialist. There are also self-help groups and support groups that don’t have leaders, including 12-step groups. I don’t think there’s such thing as ED long-term (over three weeks) day treatment in my area, and I don’t know if it exists anywhere as a treatment option as ED alone, but a general mental health day program, such as the one I tried to get into as an alternative to hospitalization…because, as I said before, I was desperate to avoid hospitalization. But I have been successful at avoiding hospitalization…for now, anyway. But I have told you this before, so enough of that.
Correct me if I’m wrong about all the details on treatments, also if I’ve left one type out, please let me know.
What is available to me: Therapy, with my therapist, twice a week, who has a lot of knowledge and training in ED but is not an ED specialist. My psychiatrist, who is an ED specialist, and once headed up an ED program at a top hospital in the area. I can see an ED specialist, but I don’t. I saw a nutritionist and it didn’t work out. I see my primary care doctor once a week. I don’t go to a group, but I could, and in fact I saw one–an expressive therapy one (art therapy, etc) for ED–that interested me. I tried to get into another group and got turned away because they said I was too sick for it and not “recovery-oriented.” Imagine that. Psychiatric day treatment–I was turned away. I was reasonably certain it wouldn’t help anyway. An ED partial is available to me, and I haven’t even bothered to tell my T that they take my insurance because I know it won’t help me. Again, group programs have never helped. They make me worse, generally. Plus, what good will just a couple of weeks do me? I heard from five or six sources–people that have been there–that the program is terrible, just not a very good program, and not really worth going to. I’ll play this “wild card” only if I desperately need to–if I need yet another alternative to hospitalization.
What about these evening programs, and the halfway house? Can’t do. None in my area take Medicaid and Medicare.
Do I really want “treatment”? Do I really want to get better, to rid myself of my anorexia? Or do I want to stay in this hole I’ve dug for myself that everyone steps over, where no one sees me? People walk around it sometimes, or try desperately to pull me out, and cannot. The hole usually feels like a safe, warm place. Often, though, it feels like my grave.
But do I bank on the knowledge that treatment, right now, isn’t helping? Nothing is working, and that’s a fact. Therapy isn’t making me eat. Meds aren’t making me eat. I am getting turned down left and right from other types of treatment that won’t work anyway. No amount of statistics and physical symptoms I have seem to scare me into eating. Do I like this? Or do I desperately want help?
You know something? I think I want help. And as I write these words, I weep. I want to be helped, gently, out of the hole. I want to be invited, not pulled, out of the hole. I don’t know what it’ll take. Maybe it’ll be the faithfulness of my friends and all the love and caring they are giving me, and the way they listen to me, and I listen and share with them, and how we quietly spend time together. Maybe it’s the satisfaction I get from making progress on yet another sweater for my beloved Puzzle, knowing I’ll keep her warm this winter. Maybe it’s writing here, communicating, which I do with such desperation these days, knowing that people are actually reading my words and hearing me.
And maybe it’s the look in Puzzle’s quizzical eyes, when she tilts her head and wags her tail, and I remember, “Puzzle needs a mama!” and know that I must, must plod on, if only for one more day, and then maybe for another. And I am suspecting, believe it or not, that my faith in God, which was eradicated when my anorexia returned in 2008, may finally be peeking from behind the clouds, just a wee bit, and although I cannot catch it, and it may disappear again before I can grasp it, this hint of something–anything–gives me a sense that maybe, just maybe, something is going to happen.
As it turned out, I was not admitted to the day program.
Get this: they don’t want me until I’m more “stable.” A lotta sense that makes. Don’t people go to programs to get stable? Well, when I do get stable, I sure won’t need or want day treatment, that’s for sure!
For a change, my therapist agreed with me.
Thankfully, nor do I have to go to the hospital. This issue seems to be resolved.
My therapist is still encouraging me to voluntarily agree to get locked up, have my rights taken away, get force-fed, and forced to gain weight at an inhumane rate in a “hospital.” She wants me to do this so that I will “gain weight faster.” IMHO, rapid weight gain alone is not only unnatural and taxing on the body, it is cruel and unusual punishment. So I told her, “Maybe some other time.”
No, I’m only kidding. I told her, “No way!”
She said, “Well, then, you have to eat.”
I said, “I suppose I do.”
In an hour, I go off to therapy. As I figure it, there’s a good chance my therapist may choose to hospitalize me. It all depends on how I play my cards. And I want to play well. Very well.
I want to appear as put-together as possible. I want to look toward the future, not focus on my present decrepit condition. I want to keep the focus off of my poor eating. I want to ask about when this interview will be for my new treatment, and talk about the next step, and the supposed optimism I have that the treatment will work, or at least the glimmer of nonexistent hope I have that it will. I’ll take out my snack and eat it right in front of her before she even asks about it. I’ll tell her my eating has improved. Never mind when or by how much. That I have eaten today and yesterday. Never mind what the portions were. That I have no intentions of cheating the scale Monday. And you know something? I have no plans to water-load at all. Not this time.
Why do I see my treatment team as the enemy? I have seen them as the enemy for a long time now. First, it was just my psychiatrist and not my therapist. Now, it’s both. They are on my case all the time. Accusations of lying. Accusations of not eating. Threats, at every session, to put me in the hospital. I get out of it by the skin of my teeth. And the hospital, a place where I am supposed to be made welcome, and get healthy, I view as worse than Death Itself. What’s wrong with this picture?
But who is it that sees my “treatment”–both the team and the hospital–as the enemy? Is it my starvation? Or the Julie within? Is it my anorexia, or me that views the team as against me all the time? Are they trying to squelch me, or my starvation? Are they only trying to keep me alive, trying to keep me from losing more weight? Is it the part of me that wants to lose more weight–is it that part that hates them?
Where–where am I? What on earth has happened to–me? Is there anything left to me besides starvation? I am shrinking–my body is shrinking–is my soul shrinking, too? Am I anything more than a walking, talking, thinking, obsessing ED? Will I ever get my life back? Will I ever get my mind back?
All these questions are swirling in my mind as I pack my stuff for therapy today, as I write these words, as I glance at Puzzle, and remember that she needs a mama, and that mama is me. Today, at least today, I have choices. I’ve got to remember this.
I thought I’d post Max Ehrmann’s “Desiderata” by itself because it deserves just that: its own place. I first encountered the poem–a prose poem, actually–in I think 1971, and it struck me as beautiful even in my 13-year-old eyes.
It is morning here on the East Coast.
Here’s something to ponder: I think if you’re in a tight spot, it’s important to seek out people who may have experienced similar sorts of things and understand what you are going through. Sometimes, they are the only ones with whom you can share your true emotions.
In my case, they understand why I don’t eat because they’ve been through it themselves.
The comfort I feel in knowing this carries me through my day.