Some comments on binge eating, starvation, inpatient treatment and my life before and after…this is kind of heavy

While I was in eating disorders treatment, nothing was discussed about bingeing.  Nada.  Zilch.

We’re talking about state-of-the-art treatment.  They do state on their website that they treat binge eating disorder, but they don’t address this behavior in the groups or talk about how to stop this behavior.  No one talks about bingeing.  Ever.  The focus is on purging behavior.  The staff go to great lengths to prevent patients from purging in the bathrooms after meals and snacks.   Patients are watched during meals and I assume that hoarding behavior is generally prevented, because patients are not allowed to wear garments with pockets in the dining room.  To accumulate enough food for a binge, at least a binge that is big enough to qualify as the kind of binge that I would do…it would be impossible.  There are no drawers and no space to hide items.

I finally inquired about bingeing after I’d been at the Alcott Unit of Walden Behavioral Care, the inpatient unit where I was staying, for over a week and nobody had even mentioned what the heck I was going to do about bingeing once I got out.

Of course, I have talked to you guys a zillion times on this subject and I had told the doctor why I was on, specifically, Topamax and Imipramine.  Actually, I have barely had the opportunity to discuss the whole Imipramine ordeal with you over the past couple of weeks…it was beyond the point of toss-up…let me back up and explain….

I have been on Imipramine since November.  It is a fabulous drug for binge eating.  This is the original drug used to treat binge eating, believe it or not.  This research was done by some shrinks in the early 1980’s and was written up and published in a book calledNew Hope for Binge Eaters. I own this book.  It is a very, very important book and I am angered, actually angered on a very deeply personal level that the research was dismissed by so many people…maybe because it put therapists out of business or made binge eating using treatment using Imipramine, as some called, in protest, “male doing to a female behavior” which is very bullshit because of course binge eating is not a female behavior and research on “chemicals” that influence brain activity is not done by only males…(this research and knowledge is something that is passed on not only in the pharmaceutical industry but in traditional “folk” cultures and within family units since the beginning of the species and is written in the earliest recorded history).  I latched onto this book and after all these years still buy into the notion that binge eating is a brain response.  I know this in my gut of guts.

I say this with tears in my eyes, not tears of sadness or joy or anything judgmental on myself certainly, but feelings of observation only.  I also say to you, beg of you not to take this away from me or judge me or conclude that this is a bad thing or a sad thing or tragic.  There is nothing tragic about it and I am not dying any more than anyone else is dying.  I am getting older.  Each minute, I am a minute older.  So while I am typing this, each letter passes by.  So let me establish that before I say the following about my eating disorder and let me say again do not take this special knowledge and experience and love and ownership in my body and soul of my eating disorder or judge me as immoral for saying this:

I have unique knowledge of my eating disorder that no one else has.  I know it better than anyone else.  I am the only one who has lived with my eating disorder for 32 years.  No one else has lived with it.  I have lived with it in secret for just about all of this time.

My eating disorder is not a living entity, does not have a gender, and does not and never has spoken to me and I have never given it a name, such as “Ed” or “Ana,” nor does it have a “voice.”  Because of its non-entity as living, I have never been married to it or in any kind of personal or social or sexual or abusive partnership or codependent relationship.  I don’t talk to it either lovingly or defiantly, ever, or refer to it as “you.”

As a matter of fact…let me say further that those books out there that tell you to think of your eating disorder as some kind of person called “Ed” are completely lost on me.  These books sorely disappoint me.  It is so…cliche to call it Ed.  I mean, how fucking over-used.  Even my therapist disappointed me and called it Ed.  I told her that in calling it Ed, in giving it a name, a name normally given to humans, I am giving it way, way too much power.

At the same time, in giving it this name, I am acknowledging that this so-called Ed is actuallynotme, that this Ed isseparatefrom me.  However, let me state right here that according to the laws of logic, in which I was trained way, way back in high school math class and I think junior high as well, and yes, I was on the brainy side and loved logic and still love logic in all its forms on all levels and yes I do believe in God I feel God in my heart and know that there is a God and to me this makes all the logical sense in this Universe that I live in as I type these words that pass by, letter by letter….according to the laws of logic, just because I do not call my eating disorder “Ed” and just because I insist on not thinking of “Ed” as a person, because doing so would empower my eating disorder..does not necessarily mean that I am integrated with my eating disorder to the point of it being me and my living as it and doing eating disorder behaviors automatically, not by choice.  I don’t know the logic symbols for this equation but trust me I am right.  This implies a certain largeness of the eating disorder within me to the point of robotic takeover.   I did not state this at all.

There have been times that I have felt taken over by my eating disorder on an emotional or spiritual level.  There have been times that I’ve felt that my eating disorder behaviors have taken over so much of my time that I have time for nothing else.  There have been times that my eating disorder has rendered me unable to do daily tasks or take care of myself on a very basic level.  There have been times when I have struggled to stay alive and have nearly died because of my eating disorder.

There have been times that I have only lived due to sheer luck.  Some people may say that that God kept me alive.  Some people may say that there was a reason for this.  I don’t think there has to be a reason why I am alive.  I am alive.  Did God play a part in it?  Does God “play parts”?  Did God want me alive?  Does God “want” things?  I don’t really think God has a “plan” for me.  I can pray and pray and pray to have this “plan” revealed to me.  But in so doing, what would I expect?  A list?  Do this, do that?  Adam’s wife Sarah wanted a child.  God told her to expect one.  She was old and well beyond childbearing age.  She laughed at God’s plan for her.  She bore a child, Isaak, which means “laughter.”  I absolutely love this story and I don’t know why I love it so much.

“Plans,” are up to me at this point.  Before I was in the hospital, I knew that I would die.  I did not merely plan for death.  I knew that I would die without question, so I had no future plans for myself.  I knew that this would happen very, very soon…within days…it didn’t happen and didn’t happen.  I made it to Sunday…then would go back into the dark of the weekdays and disappear, only to re-emerge on Sunday at church…on time every Sunday.

This was my life and this was  how I lived it.   I am alive now.  I have the memory of having lived the way I did for those months.  I have the memory of the sensation of my soul walking away from my body, then returning, on a handful of occasions, possibly three times.  Yes, three times, I think.  These went unrecorded.  I did not physically die.  My heart did not stop and I did not stop breathing to my knowledge.  To my knowledge.  I was not asleep or even close to it and I am absolutely positive that this was happening.  In my heart I have no belief in an afterlife or no feeling on a gut level that there is an existence for me after death in any way or consciousness or continuance of “soul” as entity.

I had read about this happening to people who were near death.  I read it with fascination, mostly because I have this curiosity about death.  Many people are curious about death.  As for “body leaving soul briefly,” had I ever thought it would apply to myself, I would have thought it might be a bit of a bullshit notion.  But I truly believed that in my soul, the life-ness in me, had died, or was slowly, slowly dying, and might as well be dead, and that my body…it was this useless, dry, pale, flaccid thing.

“God’s plans”?  Somebody might tell me to pray for God’s plans.  I don’t think it’s anyone”s business what I pray for.  What I pray “for,” that is, what is uttered in prayer is between  God and me and is not up to another person, though sharing a prayer is awesome…that is not the same thing as religious persecution.

I am strong.  I am 54 years old and suddenly, suddenly I am so assertive and I have a voice and never in my life have I ever had such power.  I am able to speak for myself.  I am able to think my own thoughts and think for myself.  No one controls my thoughts.  I am a writer.  Through my writing, I have a voice and I tell my story through written and spoken word.  I have a story to tell and my story is worth telling.  My story should be told and needs to be told and will not go untold and I will not be forgotten and my story will not be forgotten.  I am a person with an eating disorder experience and that experience will be told in words and so that experience will be shared with the world so that others may know what this illness is and is not.  I will give other people with eating disorders a voice.  I will give people with eating disorders rights and an end to discrimination on all levels and an end to invisibility and an end to ignorance and fear and misconception.

As soon as I entered the hospital, I began to eat.  I was surprised that I did this.  Or shall I say I was beyond the feeling of surprise and not surprise by anything I said or did, at that point.  I consumed a bite of this thing now and then.  Please do not judge me.  I was not “restricting.”  I was not “counting calories.”  I was way, way beyond that point.  I was extremely weak and at survival level.  I was mentally disoriented.  All I could do were bites.  I focused on what was in front of me.  I concentrated very, very hard.  I needed to be in the hospital.  I say this without question.  In the very physical and practical sense, I was completely unable to do this without being in this setting.  A person who doesn’t have an eating disorder can argue, “You can do this because you are physically able to put fork to mouth,” but they do not know the actual condition that I was in at this time.

Not only that.  I was not “losing my relationship.”  I was not “losing my wife and kids.”  I was not at risk for “losing my job” or my “reputation.”  My problem was not a “feeling of ‘out of control of my life'” and my parents were not kicking me out of the house and therefore I was not knocking on the doors of the hospital out of having no place else to go.

I had no relationship to lose.  I had no wife and kids.  I had no “job.”  I had no reputation at risk.  I did not live with my parents and had no family to speak of…my family (mother, two brothers) didn’t and doesn’t give a shit about me anymore, and there was no life left in me to feel out of control of.  I called the hospital and asked to be admitted because I had stopped eating altogether and was about to drop dead.  I was and am 54 years old.

Somehow, a starving 54-year-old woman got on a bus with barely any luggage, stumbled into a cab, over-tipped the driver, and made her way to the third floor of the Admissions office of Walden Behavioral Care on February 8, 2012, and lived.

I wonder if the cab driver bought a Diet Mountain Dew with the extra money.  I wonder if the cab driver double-checked the label to make sure that there are actually zero calories in Diet Mountain Dew.  You never know.   Sometimes, those labels are weirdly printed, and a zero can look like an eight.  When you are 54, you sometimes have to take off your glasses to see how many calories are in things because the print is so small.  This can get embarrassing out in public because it looks obvious that you are reading the calorie count on labels.  It is a dead giveaway and when I do this in public I worry about strangers suspecting that I have an eating disorder…or thinking “funny” about me or scrutinizing what I buy…like judging me because I don’t buy, for instance, frozen French fries.  I can’t believe how many people waste money on frozen French fries.  Wow I am having fun with this.  On the other hand, maybe the cab driver saved up the extra tip money and put it in a jar, and it went toward paying the bill for his family’s health insurance.  Cab drivers have to pay for their own health insurance.  I feel sorry for those guys.

So I’m going to swing way, way back in subject matter here.  I was talking about Imipramine and bingeing and how well I know and own my eating disorder.  I went on to say something that highly relates, and this is that I own the experience of my eating disorder.  I own all 32 years.  I own the right to tell the story.  I own the duty to myself to tell the story.  I feel that I am doing others a huge favor by having This Hunger Is Secret: My Journeys Through Mental Illness and Wellness published in paperback at last.  I feel that I am doing other people with eating disorders a huge favor to tell the story of my eating disorder.  I feel the need not to tell a “recovery story.”  I feel the need to tell an “experience story.”  I feel that telling an “I lived happily ever after with wellness” is doing the world a terrible injustice.  I did not show up at Walden to recover.  Duh.  I showed up to live.  If you have gleaned anything from this article by now, you know this already.  You don’t come out of there recovered.  You leave and you’re only at the beginning.

I’m going to be straight with those of you with eating disorders right now.  At Walden, they did not want me to be straight with people about this.  Well, bullshit.  Look up the statistics online.  You deserve to know the facts.  Statistics vary because each organization collects data a little differently, but they will all tell you a few basics that are the same: Anorexia nervosa is the most fatal of all mental illnesses.   A majority of people with anorexia do not, I repeat, do not make full recovery.  By this I mean definitely fewer than 50% fully recover and no longer struggle with these issues that people with anorexia nervosa or other eating disorders struggle with.  The earlier you start, the lower your chances are of full recovery.  The longer you have the disorder, the lower your chances of full recovery are.  Relapse is very, very common.  I believe the “recovery period,” or shall I say average “rehabilitation period” is nine years.  Yes, nine years.

The following statistics I did not read in all sources but did read in several sources regarding adolescents and I’m not certain that I am wording this properly so I’m going to be very cautious about how I say it.  Eating disorders and adolescent suicide are highly linked.  Bulimia is found…I think in 50% of female adolescent suicide attempts.  The figures on males are probably difficult to ascertain and I imagine the data is poorly researched and poorly gathered and  inaccurate due to gross ignorance regarding eating disorders in men and boys…but I’ll bet it’s also 50% as well.  In adolescent suicide attempts the figure likewise for anorexia and binge eating disorder is 30% equally.   The figures were not all the same exactly…don’t quote me…but let me say that all the figures were extreme and they were all shocking and they were all very, very clear.

What these figures do tell me now…now…now…is that these kids…these beautiful, unique kids that I met in the hospital need to speak and live and act and think and be their own person and have rights and have a voice and be listened to.  Many of them were stifled by their parents and by their friends and by their schools.  Many of them were force-fed by society and told by society how to live, act, and think.  Most did not have their own voice.  Most had lost that voice along the way.  Many spoke in a whisper.  Many spoke literally inaudibly.  Some spoke in a mumble, not due to malnutrition but out of habit.  Many of them had taught themselves to be givers and had given themselves to others and not allowed themselves to be loving to themselves.

But I am getting off track of what these figures do tell me.  They tell me that people with eating disorders need to have a voice.

People with eating disorders need to have a voice.  When I went into the hospital and realized very shortly afterward that I had a future, this weird thing called future, I vowed that helping people with eating disorders have a voice was something that would be in my future.

I am not saying that I am committed to do this.  I am not saying that I plan to do this.  I am saying that this will happen.   Maybe I should add something to this because nobody can predict the future.  Nobody.  You can’t and I can’t.  This will happen if I live to see it happen.  And yet I am doing it right now as I type these words, letter by letter.

And so, I have my new book in the works.  I am working on it and I am writing it.  I have more plans and these I will get into soon enough.

Again, I have drifted away from Imipramine…I got on it in November…as I said, I know my eating disorder and after 32 years, I know in my heart that this “binge” behavior is brain-based.

If ever I am “taken over” by my eating disorder it is during this behavior.  I do not plan this behavior.  It is pure reflex.  It only happens at certain times and is not a response to hunger.  It is not a “coping skill.”  It doesn’t seem to be an “addiction.”  Sticking to a “meal plan” does not work and never has.  It has nothing to do with “crisis” behavior.  I don’t do it to “numb emotion.”  I do not do it as “self-harm” behavior although the English word “destroy” runs through my head while performing this act.  No therapy has helped.

Ignorant people, both ignorant professionals and ignorant lay people, have said, “Don’t do it.  You probably are weak-willed and need to go on a diet.  Just binge on fruit.  Don’t take the first bite.  Why don’t you just binge ‘a little’ and not ‘a lot’?  I wish I had anorexia…I need to lose weight.  You are doing it to control your parents and need years of family therapy and day treatment.  You obviously don’t have an eating disorder, but are doing this as a way of manipulating your therapist and are trying to get controlled substances from the psychiatrist.  You must be lying because I don’t see any weight gain.”  I still do hear quite frequently the line, “I wish I were anorexic.”  Don’t jump to conclusions on this one.  People say this for many reasons.  Many people say this because they want to lose weight and say it for very stupid superficial reasons out of ignorance and think it’s fun to be this way and that it’s a disease of vanity and fashion.  But many people who say this already have serious eating disorders and wish to “trade” their eating disorder for anorexia and change their weight.  I am not one to judge.

So in November I got on Imipramine.  Dr. P didn’t tell me the side effects but I read up.  Not good.  Not good at all.  The Imipramine stopped my bingeing so this was good.  But immediately my breasts got huge.  No eating disorder thinking here they were huge and only two days ago…I have been completely off the drug for a week now and they are diminishing…finally I am noticing a positive change, some size reduction…finally.  It was ridiculous and I was so miserable over it, not to mention hormonal danger.  I wasn’t worried about breast cancer, just whatever hormones were possibly messed up, this plus whatever overproduction of breast milk was happening.

This plus ridiculous vital signs.  Borderline very high blood pressure, diastolic near and sometimes above 90 ALL the time when normally it is either 80 or 70 or so…completely normal…pulse always running 90, generally above 90…this is ridiculous.  Risk of heart attack on Imipramine no question…the insert stated that this is doubled.  I am not kidding you…risk of heart attack is doubled.  This and 1/3 chance of permanent, I repeat, permanent movement disorder.  I did not want to stay on this dangerous medication.  Just couldn’t.  This plus perpetual dry, dry mouth and perpetual thirst.  The headaches started when I got on Imipramine and no doubt it was contributing to increased need for water.   I am off Imipramine, by choice.  I asked for my Topamax, the other med I’m on to control bingeing, to be increased.  Unfortunately, I’m at the maximum dose.  I’m on Lamictal.  Lamictal increases Topamax availability by 15%.  I’m on 350 Topamax and the max is 400 so essentially I’m close to that dose considering I’m on Lamictal.  Topamax alone might not help without the Lamictal and this I can’t explain fully it has to do with a long history I have…regarding the effectiveness of Lithium for bingeing…etc etc.  I ended up figuring out that taking Lamictal at night is by process of elimination and careful examination of my records THE cause of insomina that I am experiencing, so I am moving it to morning. Technically, I need to divide it up into a split dose and I have no clue why this wasn’t done in the hospital.  I hadn’t split it up myself before the hospital because I was taking meds by habit and only did them in such a way that I would most likely not forget them.

They didn’t discuss bingeing in Alcott.  Nada.  Why?  I asked.  About five minutes of private discussion with the nutritionist and that was all I got.  Nothing in groups.  This was all I got.  All the help I got.  No suggestions.  Nothing.  I guess treatment for binge eating…where is this treatment?  Does it exist?

I don’t really know what to do right now.  I asked for help and didn’t get it.  I am off Imipramine.  I binged.  It was automatic.  I did everything the nutritionist suggested to “help” the Topamax do its thing by using food to help my meds work well.  This did not help.

I binged yesterday afternoon.  I am bloated still.  My ankles and calves are huge from it. My wrists are enlarged and my hands also have edema in them though they are not bubbling or anything scary like that.  My stomach is enlarged quite a bit still and will remain so for a long time.  Never mind my face…I touched it once for less than a second…that was enough.  I am so embarrassed by this that I cancelled therapy.  Or shall I say that this is one of the reasons.  I don’t want my therapist to know that I binged.  She will say, “Told you so.”  She will say that I should not have left the hospital, that she was right and that I was wrong and that I am the sick one, etc.  I refuse to show up for an appointment with my primary care doctor like this even if it means waiting for a week for the resulting edema and stomach enlargement to go away.

No.  I typed something and then deleted it because I thought you would think, “How tragic it is that Julie has not”…I say this with disgust in my heart…”How tragic it is that Julie has not recovered.”  Well, fuck you.  If I have to fast for a week…yes, I did type, “a week” and I will not apologize for having typed this,  I will do so to rid myself of the horrible edema and swelling that has resulted from this binge.  I refuse to show up at my primary care physician’s office looking like this and I refuse to show up for therapy looking like this.  I am not going to show up if I have to cancel appointments for the next month and a half.  And no, I am not planning to fast for a week, simply because I don’t think it’s going to take a week.

No one, no one no one no one no one at Walden told me what to do if I binge.  Not one person.  So yesterday I was in the kitchen and it came over me.  I boiled up maybe six or seven cups of dry dog food and gulped it down.  Then I went out and bought food.  While I made this trip I was in a complete trance and gobbled up food while I was traveling on foot.  I kept the food in my pocket secretly.  Well, you have read in my blog many times about these binges and you know how I have lived and lived and lived with this misery.

Not one person told me what to do after a binge.  I feared stomach rupture.  What is the thing to do?  What is the safest thing to do?  Should I lie down? On my stomach or on my back?  Is it really safe to allow myself to sleep?  I generally pass out…I honestly don’t know how much is known about the combination of long-term severe starvation, underweight, and severe, chronic, difficult-to-treat bingeing combined with complete inability to vomit and suppression of gag reflex.  How many cases of this do they really run across?

When I was in my thirties, they told me this bullshit, “Go right back to your meal plan.”  I immediately canned this idea.  They deemed me uncooperative.  Obviously, they completely lacked understanding of my disorder and thought that what I was doing was overeating.  I was not overeating.  I was bingeing.  You can’t eat three gallons of ice cream and two large pizzas and finish them at 4pm and then at 5pm get out your freaking fork and knife and eat three proteins, one starch, eight ounces of milk, etc etc etc…it is fucking stupid and illogical and they expected me to do this?

What I need to do after I binge I need to teach myself.  Walden provided no answers whatsoever.  They did not tell me how to handle it emotionally or on an eating level.  I do know that if I resume eating way too soon, I will automatically trigger another binge.  It is a brain thing and it can’t be helped.  So I know to stay clear of food, any food, for a certain amount of time.  Actually, this is not so much an amount of time but an amount of fullness.  I have to wait until my stomach is emptied a certain amount so I have to wait before resuming eating.  Try to explain this to a therapist.  Well, fuck you.  I know my body and I know my brain after 32 years of dealing with this.  I have learned to save myself from yet another Hell.

But…I do need nourishment.  I have to evaluate this situation.  I have some serious thinking to do.  I am not going to show up at my primary care doctor’s like this no way, even if it means canceling for a month.  Even if it means canceling for six fucking months.  I refuse to show up at therapy like this.  I refuse to be weighed like this.

I refuse to be weighed at a weight that is elevated due to bingeing.  I will tell you exactly why.  The time I went to see my primary care doctor…this I explained to you out loud but I will tell you again.  I had just binged the night before.  She weighed me.  She said, “I want you to stay at this weight.”  I was at the time ten pounds heavier than usual due to the binge.  Well, fuck you.  I fasted and within an extremely short period, like about 24 to 36 hours or maybe 48 hours, I lost all the weight.  I told her in the office, “What you are weighing is the food in my stomach, the crap in my intestines,  and water weight.”  She said, “I can’t believe you have ten pounds of that.”  I said, “After 32 years, I know my body.”

After 32 years, I know my body.

I know my body more than you do.  I know my body better than any doctor or hospital.  I know my mind and my eating disorder better than my therapist does.   I have lived with this disorder, this unique disorder that I don’t think these treatment centers see very often, and no one else has lived with my disorder in my body for these 32 years so no one knows is and knows what it feels like to be me better than I do.

It is not your place to judge me or make conclusions based on my eating behaviors as to the extent of my so-called “recovery.”  It is not your place to pass moral judgment on me.  I made a stern statement while in the hospital that how and how much people were eating in the dining room said nothing about how hard they were trying or what their attitude was or why they were there.  This hit hard but I had to say it.  Please, dear readers, do like they did in the dining room.   Keep your eyes on your own tray and I will keep my eyes on mine.  I will write in here about my life, though, and give you a window, a peephole, into it.   I hope you enjoy my peepholes.  I enjoy pecking them out.

 

 

Feedback and comments welcome!