My parents, during the last year or two of my father’s life

It is no coincidence that when McLean Hospital diagnosed me a chronic case with poor prognosis and recommended a long stay in a state hospital, it was not long after my parents had stopped pouring money into my mental health care, and turned instead toward my father’s three-year journey with cancer that would lead to his death in April 1997.  McLean, and everyone else, had milked my parents dry, or let’s just say everything they wanted to give up.  My mom was sick of it, I suppose, and probably resentful.  So McLean had little use for me anymore, and once they finished using up my lifetime Medicare days, they weren’t very friendly.

My parents, meanwhile, had their own little life.  My mom said on the phone to me, “Dad’s main problems are with mobility and function.”  Function?  I wondered why she didn’t just call it piss and shit.  After a lengthy period of euphamizing in every way she could, she finally consulted with the medical profession and they got him some medication to help him with bladder control, and Depends with embarrassment.  For the first time in over thirty years, she found herself changing diapers, and still hating it just as much.  Or did she?

This became a complaint every time she got on the phone with me, in a very offhand way.  She coyly explained one day, “I control his diet so that he only makes a bowel movement every other day!  Less cleanup!”

McLean Hospital, of course, had ceased giving me good care, so I was very, very sick, and it took years before I realized what was going on with my parents.  My mom had my dad under complete control.  It was almost as if he was helpless, all his body functions regulated, always watched, always controlled and monitored.  She made sure he took all his meds.  He might as well have been in a locked ward on a “one to one” with the Nurse from Hell.

They say he asked not to go into a nursing home.  I wonder if he said this himself, or if my mom put these words into his mouth.  Before he died, he was in a hospital for a bit, probably less than a week.   I forget which one.  Maybe Brigham and Women’s.  Then a nursing home, a nice one, for ten days, where he died, somewhere between one and two in the morning.  I’m glad my mom wasn’t with him at the time.

During the last ten days, my mom showed off her athletic ability by cross-country skiing to the nursing home from her home.  I think she was trying out some of her freedom.  I think the nursing staff understood this, too.

A bunch of us went to see Dad in those last days.  He was kind of out of it.  Then again, so was I, in my own way.  I felt hopeless because the people at McLean had turned their backs, and I didn’t realize that it was all because of money.  But I didn’t say anything to anyone in the family about that.

Dad lay there with his eyes closed.  He didn’t say anything or do anything.  His arms and hands were puffy and I was afraid to touch him because I didn’t know what his skin would feel like.  My mom pranced around the room and waved her arms, speaking to the nurses in a sing-song voice.  They responded to her in whispers.  “Yes, Mrs. Greene,” they said.

My mom called me in the mornings, early, in the days following his death.  Or I called her.  I don’t know why.  These conversations were pretty much hi and bye, but I didn’t have anyone else to talk to.

That was April.  In August, I took an overdose.  My mom never found out.  McLean sucked out the last of my private hospital Medicare lifetime inpatient days, and then set me loose after three days.  They sent me back to their shit residence, which was soon to close down.  They made some excuse.  Blamed me, of course.  I started on another suicide plan and almost completed it.

I’m glad I’m the hell out of there.

At some point I made the promise to myself that I’d never let my mom change my diapers again.  Once was enough.  I do remember toilet training.  Most adults don’t remember back that early.  I remember my parents standing over me in our yellow bathroom, all of us staring at my soiled underwear, my shame, their disgust.  Yelling all around.  Booming, scary voices.  Never again!  Never again!  Never again!

I’m sure it happened over, and over, and over, just like I’m sure it happened to my dad when he spent his last year dying.  I can only imagine.

Now, my mom is so out of it that she can’t be alone anymore.  She can’t take care of herself.  I think she needs someone to help her bathe and dress.  She can’t clean the house and she can barely walk.  My brother took over the finances completely because she neglected all her bills.  Only a few months ago she was riding her bicycle around town.  Weird how these things happen.

Part of me is very happy about this, though.  Thrilled.  She has lost control.  She can’t even do her own food.  Well, well, mother.  Isn’t it about time you stopped controlling other people’s bodies?  Isn’t it about time you got a taste of what it feels like to be controlled?  Locked up, maybe? I think my brother is rather thrilled to be arranging for the nursing care.

In three days, April 10th, it will be the anniversary of my father’s death…I guess fifteen years.  Lots of stuff happened in those fifteen years.  His kid got married, he gained a granddaughter, and a grandson graduated high school and went on to college.  A son got tenure and both sons got promotions.  Me?  My bachelor’s degree, master’s degree, five books written, two of them published.

Yeah, Dad, I told McLean where to go and started a new life.  The saddest part about it was that you weren’t alive to see me do it.  I told them I didn’t need their locked wards anymore.  I didn’t need them to tell me I was “chronic” and that I had a “poor prognosis.”  You didn’t see me break free of their bonds.  You didn’t hear me tell them to fuck off.  Well, I told them.  And I’m going to tell the world again.

Maybe you will hear me screaming, loud and clear, very soon.  I don’t need their locked wards.  I don’t need their state hospital.  I don’t need coping skills or stress balls or bubble bath, you can take all that and shove it.  Freezing an orange is a waste of food, I don’t use that as coping skill thank you.  The crisis team can now go take a long smoke break and all us mental patients will go on parade and show off our Tardive Dyskinesia in the streets.  Look at how that one flaps his tongue!  Freaks!

Yes, Dad, I am breaking free.  I won’t let Mom control me.  I will speak out and tell others to speak out.  I believe that if you see something that you know in your heart is wrong, you should take action against it, even if it means doing something unconventional or unusual.  I’ve done some rather offbeat things because I believed that in doing so, I was saving others.  If you were alive today, maybe you would understand my actions, but maybe not.

We did not always agree.  In fact, I’d say, most of the time, we disagreed.  Most of the time, you were the one who was right about stuff.  You were more mature.  You were wiser.  You were a better thinker.  You took more time to think things through and didn’t jump to conclusions the way I did.

When I was in my thirties, I used to ask you guys for approval all the time, and then curse myself for being so childish.  Was it my illness that had caused me to become so dependent on you two?  Was I doing it to please you, to reassure you that you still had a little girl, someone you could control?  Was I doing it because I was lonely and had no friends, no one else to turn to?  I can still picture your nods and smiles, the exchanged looks with my therapist, the winks, the approval.

I guess I’m kind of on my own now.  If you were alive today, you’d see what was going on with my brothers and me, the way they more or less don’t even know I exist, and I’m sure you’d be disgusted.  Or maybe not.  I don’t know and I’d really better stop putting feelings into your heart or words into your voice.  The way things are is the way things are.  I’m going to tell the world again.  I’m going to tell them I don’t need their state hospital.  I’m not “chronic” and I’m not “poor prognosis” and I don’t need the mental health system lingo buzz words hollered at me over and over and over like I didn’t hear them the first time.

Dad, they told me if I hold a frozen orange, I would feel better, and I told them I refused to freeze an orange, because this ruins it as a piece of food, thereby wasting it.  Oranges are expensive as well, I added.  Would I feel better, for instance, squeezing a California orange, or a less expensive Florida orange?  The person leading the group told me maybe it was time to give someone else a chance to speak.  I said, maybe you just want to shut me up.  Later, I wrote in my journal that they could take their coping skills and shove it.

No one will shut me up, Dad.  I promise.  We may not have always agreed.  So you taught me.  Disagreement is all the more reason to never, ever, shut up.

 

Should adult mental patients be dependent on their parents? My experience

I grew up in a Boston suburb and my parents had enough money to send me to college where I could live in a dormitory.  Like many teens, I had a rough go of it and could hardly wait to be on my own.  I counted down the days.  The night before I left, I screamed at my parents that I would never come back.  In many ways, I never did.

I left behind the two most adorable younger brothers you could imagine.  I felt that I was letting them down.  I had cared for them and had been like a parent to them, loved them because my parents weren’t really loving parents.  I said goodbye to them.  Maybe they never forgave me for leaving them to the whims of my parents.  Maybe that’s why my brothers, now with families of their own, don’t talk to me now.

I brought a lot of stuff with me to the dorm.  I brought everything I owned.  I changed my mailing address, legally, that is.  I registered to vote in my college town, that is, my legal address was my dorm room.  I refused to call that place I once lived home.  Now, it was “my parents’ home.”

The kids at college thought I was a little nuts.  They all called their places home.  They even said they were homesick sometimes.  They called their moms and dads all the time.  I never called, and avoided talking to my parents, even lied to them and withheld information.

The other kids at college formed cliques and stuff.  I kept to myself after a while.  I didn’t really think I fit in.  I got laughed at a lot.  I didn’t like the drinking and partying very much.  I overheard them laughing and gossiping and saying mean things about me that I’ll never forget.  I got confused about what it really means to be a friend because of the things that they said all the time.  They talked a lot about the “good times at home.”  I didn’t remember home being “good times.”

I lied to my parents sometimes.  Why?  Because I felt that they didn’t understand me anyway, so there was really no point in saying anything or going into any long stories.  I just said anything I felt like saying to get off the phone quickly and get rid of them. My friends talked about how they could actually go to their parents for advice.  I couldn’t do this because my parents never, ever knew me.  They never bothered to get to know me since the day I was born.

I didn’t want their money, and I decided to become financially independent as soon as I could.  This was a little complex in the State of Massachusetts.  I couldn’t afford to pay full tuition for college.  That was loads of money, of course, even back then.  I had to get financial aid.  But I had to have received no assistance from my parents for a full year to file for aid as financially independent.  I tried to find a job and there were no jobs.  I went around and around on my bike from place to place, and finally got a job as dishwasher.  To keep my job, I had to do a lot of sexual politics with the manager and assistant manager.  Both were married and both of their wives were expecting babies.

One night, I got raped.  It happened inside the restaurant, after hours.  I was only eighteen years old.  No one had ever told me what this was.  I had no one to go to.  I didn’t know if I was injured or not.  I knew that what had happened was “rough.”  Was this okay?  I didn’t know.

When I sat on my bike seat, I felt pain, so I went to the university’s health services.  I told them a man had treated me “rough.”  A person stuck some instruments in me.  Another person made a disdainful face at me when I mentioned this man.  “You should be more careful,” she said.  The person examining me said something about swelling and about labia and about irritation.  I left.

I wondered if that was what having a job was all about.  Selling your body and feeling ashamed.  I wondered if that was how to survive as a woman.  I wondered if it was all about your body, if that was all men cared about, if that was what it meant to be an adult.

I had little jobs on campus.  This seemed like a gift.  I took notes for classes, typed them up, and had them mimeographed.  People bought them, and they said that they liked the way I wrote them in such an organized way.  I liked that I was valued for my intellectual ability and not for my body.  I got paid a little for this, too.  I got so good at it that they let me take notes for classes that I’d never taken before.  It helped, too, to have a straight-A average.  So the bonus was that I got to sit in on some new classes.

I survived the year of no money, and then got my financial aid package as independent student.  Eventually, I had apartments, and commuted from another town.  I had different jobs.  I was fired from a lot of jobs.  I wasn’t good at them.

I saw things that were wrong, and tried to speak out, and I learned that people don’t like this.  I worked at McDonald’s, a place where they threw out three out of every four burgers they cooked when it wasn’t rush hour.  There was a lot of waste in that place.  One day, I spoke about this waste right in front of customers, pointing out that they had made these perfectly good burgers that could have been fed to hungry people in the town, and then thrown them out into the trash because they couldn’t sell them.  I told the manager right in front of the customers that he should give these burgers to hungry people who could not afford food.

Right then, the assistant manager had a tantrum, right in front of customers.

I hope that any customer who didn’t have any money was able to get what they needed out of the trash that night before the rodents got to it.  But more likely, McDonald’s locked up their trash real tight to keep out anyone who might rifle through it looking for food, maybe even someone with an eating disorder, passing through in the night.

Eventually I had a live-in job.  This was really my last job before I became mentally ill.  I lived with a family and cared for their kids.  This was a good thing because I felt like I was valued as a person and that I had a role in the kids’ lives.  I was only twenty years old.  There were a lot of kids.  There were kids everywhere and I was a kid, too, in many ways.  I learned many things about families and about parenting.  When I thought something wasn’t right, I usually didn’t say anything.  I just let someone else say something instead.  The dad blamed me for things that weren’t my fault.  We argued often.  Maybe he thought if I weren’t there, his life would be better.

I left.  I stepped on the scale and ended up with this thing called anorexia nervosa.  I lied and lied and lied to everyone to keep everything secret.  I ate already.  I’m not really hungry.  I have a stomach bug.  I’m allergic to that.  Of course I’ve had some, it was delicious.  I’m full, thank you.  I’m going out later.  Oh no, I’m not on a diet, me?  I just doing a study on grapefruit for a research paper.  I haven’t lost weight.  It’s just that these clothes are hand-me-downs.

And so on.   So a year later, I tried therapy, and I found out that this wasn’t going to work real fast.

What did I do?  Here’s the shocker: I was twenty-three years old.  I had lived away from my parents since 1975.  It was  now 1981.  So six years.  I went running back to them.

It was very strange, and strained.  We didn’t get along at all.  Like it was horrible.  There was no discussion of finances.  Within a month they were paying huge amounts out of pocket for my mental health care.  I mean wicked.  So I went from taking nothing from them to them taking me in and paying full fee at a day treatment center.  We had family therapy and this is all in my book.  When it comes out in paperback in a month you can read it and see how trite and meaningless the sessions were, how hopelessly shallow any discussions with my parents tended to be.

My guess is that this is what it’s like for many people when they become ill.  They are doing fine and them boom!  Financially dependent on Mom and Dad.

I am wondering how much our moms and dads are actually delighted to have us back under their control again.  I think my parents were thrilled to see me come back to the nest.  I think my parents were thrilled to see me weakened and flawed.  I’m sure my parents were thrilled to take away my legal financial independence and make me their little girl once more, someone who could be their little doll that they could show off to the other people at Temple.  But now, I was kinda sick, and they really didn’t want the other people at Temple to see me.  I was a wild one, too.

I went off again out of state after day treatment, which turned out to be a big joke anyway.  It was a giant push-me-pull-you with my parents for years financially and otherwise.  They joined NAMI (National Alliance for Mental Illness), which was a blessing and a curse.  NAMI is for parents to get off the hook.  They had this support group, where my parents learned that I had this brain disease and that it all had nothing to do with the way they brought me up or the way they treated me.  All they had to do is to make sure I took my meds.  They learned from NAMI ways to ensure that I took my meds.  They learned from NAMI ways to get me into a hospital and ways to get me committed.  They learned ways to shut me up.  They learned how to support me, that is, monetarily.  They did not learn how to love me.  I don’t think NAMI teaches love.   I never heard my parents talk about love.  I never thought love had anything to do with it.

I got on disability when I was twenty-six.  I would say that this is a good thing.  Of course, I get very little, but it’s a step away from my parents and that was how I saw it.  Getting on disability was a no-brainer because I sucked at jobs to begin with.  You could give me shitloads of education and I’d still get fired.  Training is not the issue.  Morals is not the issue.  It’s not that I’m stupid and it’s not that I’m lazy and it’s not that I’m weak-willed and it’s not anything like that.  I’m super intelligent and I do make good moral decisions and I work my ass off (ask my grad school advisor) I just suck at jobs.

I lived out of state in an apartment for a bunch of years, in and out of the hospital and with this and that doctor, on meds, nothing worked, and then moved back to Massachusetts into an apartment I couldn’t afford and meanwhile applied for a subsidized apartment in the town where I currently live.  This I was able to get in 1993.  (I remember this because my dog, Tiger, was one year old at the time.)

Still, my parents pretty much ran the deal.  They knew my therapist and had communication with her.  I felt like they were butting into my business too much.  I didn’t like that they knew what my meds were.  Why should they?  They had no medical knowledge.  Why were they always complaining to my therapist about me?  Wasn’t I an adult?  I felt like my therapist was going along with my parents’ wishes and treating me like a child, too.  They were all in cahoots.

Because I now had subsidized housing, I was now able to pay my own rent and control my finances.  I had a credit card and made sure that no one declared me incompetent and that I held onto that credit card and kept paying it every month.  All my medical bills were covered by Medicaid and Medicare.  There was the phone bill and a couple of other bills, food, and I don’t recall what else.

For two years I had a job doing telephone surveys.  Everyone, that is, shrinks, make a big deal out of this job.  It was part-time and it was in my thirties and it was meaningless.  I’d sign up for three shifts per week, that is, twelve hours.  An hour and twenty minutes to commute to work.  Two hours before the shift begins, I get a call that the shift is cancelled.  This happened all the time.  After a while, I started to suspect that they were calling people that they were paying more per hour, that is, the people who had worked there longer (like me) and telling them not to come in, lying to them, just having the lower-paid workers come in.  Shit politics.  No, I didn’t say anything.  The real reason I left was that I was so depressed that I was incapable of continuing working.  Period.

Shrinks would harp on me and harp on me about this job.  Why don’t  you go back to being a telemarketer?

I would tell them, telephone surveys, not telemarketer.  I would also want to smack them.  Is that all they thought I was good for?  Is that what I have my MFA in Creative Writing for?  Telemarketing?  You fucking assholes.  Why don’t you go call people and sell your drugs.

Anyway, I never went back to that job, and left the therapist that was in cahoots with my parents.  All my care was centered at one hospital after a while, and my dad got real sick with cancer.  I took this opportunity to distance myself from them because they were pretty much into their own thing anyway.  I was really really sick and they were incapable of listening or caring.  My dad said he felt frustrated like I did, having a disease that never went away.  That was one rare time that we connected.  He was real sick and every now and then my mom would call me and bitch and moan about how she hated changing his diapers.  I was real sick but she never knew about me.  My dad saw me and asked why I was so skinny, and said maybe something was wrong with my metabolism.  My dad died on April 10, 1997.

Our family pretty much fell apart after that.  I talked to my mom in the morning on the phone but it was kind of stupid.  I didn’t want it to be this “mom and me” thing, seeing as I was her nearest relative.  No way was I going to be pals with her or even try.

Wonder of wonders, I did get better, when I turned forty, very suddenly, and wrote my first novel, went back to school, and did many things.  There hasn’t been much communication between my family and me.  So I guess you could say that I am independent in that way.  I cannot say that this is entirely by choice.

My mom fell one day.  This was back in February, and it coincided with the day I went into the hospital, or just about that time, the first week of February.  There was a lot of family stuff going on then.   I may or may not have talked about it here.  I got calls from my brothers about my mom.  I told them I can’t deal with this, I’m about to drop dead.  I didn’t hear from them after that.  One of them I got a message from about two weeks later, and apparently he hadn’t heard me when I had told him I was headed for the hospital.  Apparently he didn’t think it was very important that I was about to drop dead.  The other one I heard from maybe the night before last.  So I guess he didn’t think it was very important to stay in touch with a person who is hanging on by a string, either.  He patted himself on the back and washed his hands clean of me.

If I had my way, I would have loving brothers.  I would have brothers that I could call up and talk to like they were my brothers and not feel a lot of pressure like I do now.  I feel like I have to impress on them that I’m a certain way.

Since my mom’s fall, things have been better, I think.  She didn’t hurt herself.  They didn’t find anything wrong.  She’s just old.  I think my brother Phil really likes that she’s weakened and needy and dependent and helpless.  He is a person who likes taking charge.  He’s been able to take over her finances completely and found her unpaid bills in the nick of time (condo fees, electric bills, etc).  I’m impressed.  It’s sad that it had to take something like this…I will not say more.

Families change, I guess.  I don’t know if anything I’ve said has anything to do with forgiveness.  Sometimes I get scared when I think about seeing my mom again and I ask myself if I dare or not.  I’m scared she’ll call me fat again.  I’m scared that the words will stay with me forever and I won’t be able to erase them.  People have told me that she’s my mom, duh, go see her, but venom is venom is venom and if a weakened, sick, frail old lady tells me I’m fat….

No, I’d like to remember her the way she was when I last saw her.  We were in Starbucks.  She had forgotten her hearing aid.  Again.  Not that it ever made a difference cuz she never listened to begin with.  We had a meaningless conversation.  And then it was over.  I didn’t take off my jacket and she didn’t take off hers.  It was December.  And she didn’t call me fat or talk about eating, food, exercise, or weight, or put me down.  It was all very brief and she didn’t hear what I said or see that I was skinny or know that I was suffering from the illness anorexia nervosa.  She went her way, and I went mine, and that was the last time.

 

 

Some new developments, in brief

I’m going to have to write just the basics because I have very little time left till I have to go to bed.  There was a lot I wanted to say, much, much more than what I will give you presently.  But here’s the scoop, not in any particular order:

My brother called a bit ago, I think around 7pm, to tell me that our mother had fallen and injured herself, probably a hip fracture.  She was taken to the ER.  I told him that I am too ill physically at this point to be involved in her situation and requested that he not give my phone number to anyone.  I am aware that of course someone will probably get my phone number anyway, and most likely I will be getting a call seeing as I am the closest relative by far.

I had to tell him the facts.   I had to spell it out for him.  It went in one ear and out the other.   Dear blog readers, you know one hundred times more than my brothers know about me.  They are in such denial.  I told him about my blood levels.  I could quote the conversation but I don’t have the energy right now.  He didn’t want to hear it even before I started saying one word.  My brothers are good people with good morals and I highly respect and adore them.  But what’s with them?  Why don’t they fucking give a shit?

This is why I go to church.  Tomorrow will be great.

Anyway, yesterday.  I went to see Dr. K.  She looked at my blood work from the ER, you know the low blood sugar and dehydration and the precarious state I was in.  I wish I could remember her exact words.  Like that I was in a bad, dangerous place medically and that she was going to have to force me into a situation against my will.  That’s it in a nutshell.  So by next week, I have to weigh between x and x+4.  I had to eat at least x, which I have not done for months, and not binge.  So tell someone who is depressed to snap out of it.  It’s the same thing.

I am facing sectioning to a medical floor or eating disorders treatment, not sure which, within a week.  I see my therapist Monday and she may do it herself.

I felt like crap today and considered surrendering myself anyway if I started to feel worse.  Common sense.  I did not start to feel worse, just feel lousy.

I feel real lonely, too.  I went through my landline phone stored phone book memory and all the numbers on it were Puzzle’s vet, my doctors, the taxi…sure wish I could just pick up the phone and talk to someone, just shoot the shit and not worry about blowing another friendship.  I must be really, really scary.

I do love my Sundays.

Sometimes, I just get mad

I keep asking myself why I am posting so much lately.  And then it occurs to me that I want to get everything said, get all my words out of me, and I feel that I must do this all at once before the opportunity is gone.

And by that I mean that I am able to sit here still, and my heart beats inside my chest right now, and apparently it is a good strong heart, so I have in that sense been lucky.

Today I pictured myself as an adult in my 30’s or so with my family, that is, my dad was alive, and my mom and my two brothers and my grandmother in her 90’s or so or whatever…and I look at that person that I was with them smiling at them and I absolutely hate that person.

My parents were so freaking patronizing.  The mental patient making progress.  It was like they joined NAMI (National Alliance for Mental Illness) and I was kind of their little model child.  It was incredibly embarrassing.

“And who is YOUR little mentally ill child that qualifies you to be a member of this group?”  And my parents had me.  They stuck me out in front of them and said, “See?  See?  Ours is even talented!”

I have always wondered why I have felt such self-hatred whenever I’ve looked at photos of myself with my family at that time.  There are very few of such photos.  I think I destroyed them, or tossed them out.

Now I know why.

I resented it, but, also, I admired my dad for going out on a limb on the political scene.  I often tell my smoker friends that my dad advocated for the return of smoking areas for mental wards.  I have explained this here on this blog I think, his reasons for feeling the need that the smoking areas should be there, despite his strong belief…never mind belief…it is a fact that smoking kills.  But my father, unlike many do-gooder NAMI parents, saw all angles of the situation.  It is that ability to look and look again, to reconsider and listen and ponder and consider the rights and integrity of the individual…this was one of my dad’s awesome qualities.

I really don’t believe in the afterlife.  Or, should I say, it is my belief that it is really none of my business what happens to people after they die.   I have no right to claim that something happens to them other than that they cease to live.  But Dad, if you can read this…do know that it really meant a lot to me that for a couple of years you served as the head of the Massachusetts NAMI.  I am not wicked keen on NAMI and everything they stand for but I do believe in patient rights.  What you did for patient rights you did for me.  And I love you for it.

What brought those photos to mind….I don’t even have any of those photographs, or I hope I have none of them…the proud parents…I remember I had zits…my parents would sit in on my shrink appointments and complain to the shrink about me.  Or they’d complain about my meds, or argue back and forth and completely embarrass me.  My mother talks in a sing-song voice and flutters her arms around.   It’s in my book.  The chapters are called, “Family Therapy.”  Those chapters are from my early twenties.  We had these sessions right up through my thirties.  Then…

Then I more or less cut my parents out of my life.  I was sick of the patronizing, sick of the embarrassment, sick of my mom’s hurtful remarks, sick of being treated as though I could not fend for myself.  I no longer wanted them involved in my care.  I hid from them who my doctors were and what medications I was on.  My mom resented not being able to converse with my T and get information whenever she pleased.

So you have heard me complain that my mom knows nothing about me.  That is, she doesn’t know me as a person, doesn’t know what my personality is like, or what kinds of things I enjoy doing.  Well…perhaps, perhaps, this is because she has not, since around 1997 or so, conversed with any of my shrinks to find out anything about me!

Well, gee, Mom.  It’s been fifteen years.  Guess you haven’t been listening.  To me.  And why am I bothering to ask to be listened to, to be loved and cared for by her?  Why, after all these years, am I still wanting her love?  Why do I expect to get now what I never got from the beginning?  Why do I refuse to give up?  Why do I keep beating and beating on a door that never opens?

Maybe this is why I go hungry.

 

I am not going to spend my 54th birthday locked up in a nuthouse

It’s damn cold out.  I know cuz I was just out there.  I went grocery shopping.  I didn’t take the shortcut to the grocery store.  I went the long route both ways.  Luckily, I changed into my boots beforehand.  It was a good idea to check weather dot com before heading out.  There was a “strong wind warning” and a statement about potential resulting power outages.  I guess I’m lucky I didn’t get clobbered by a tree while out walking, or clobbered by anything else.   You never know what you might run into when it’s only ten days before your 54th birthday.

It’s been the Year of Hell.  I could write a book about this year.  Maybe I shouldn’t say that, cuz it’s not over yet.  Anything can happen in the next ten days.  I wouldn’t wish this year on anyone.  I keep on thinking of exceptions to this, people, really, really bad people that I might actually want to experience what I’ve been through at age 53.  My mother?  Nope.  Too old.  It would be pointless to put her through this torture.  She would not understand the meaning of it and would not feel the depth, or feel the turn of the knife.  It’s hard to explain to a stranger what I mean.  (Please don’t call me a sinner for saying what I’ve just said.  You don’t know me and you don’t know her and you didn’t grow up in my shoes.)

It was kind of weird Skyping with my T.  She wanted to know stuff, and I didn’t know where to begin, so I began with the Cable Guy.  It was hard to tell the story.  She “got it” right away.  Then, right then and there, it was simply unnecessary to tell her anything else.

I know what I have to do.  I am an adult.  I am ten days shy of 54.  On my 54th birthday, I do not need to be in a dining room full of fourteen-year-olds playing “Twenty Questions” while eating a “therapeutic meal,” carefully watched over by two well-trained staff counselors.  I have no desire to spend my 54th birthday with a tube in my nose.   I have ten more days of 53, and during none of these days do I plan to be in any nuthouse, or in an ambulance, or escorted anywhere by police.

I used my food stamps card for the food items, but for the coffee filters (which were on sale) I handed the cashier a ten dollar bill.  She rang up a one hundred dollar bill.  The cash register, and my sales slip, reads $98.14 change.  She handed me $8.14, apologizing for the error.  I’m just trying to sort this out.  She’s going to get into a bit of trouble I think.  I have never seen her before.  Maybe I will never see her again.

The people after me were in a hurry.  They scooted past me while I was filling my knapsack with my groceries.  They looked at me like I was crazy.  They were a mother and daughter.  The cashier noticed that they had forgotten their half-gallon jug of apple juice.  She called after them.  “Ma’am!” she called.  They heard her and came running back.  The daughter grabbed the apple juice and flew back to her mother.  They disappeared out of the store.

I took my time.  I wasn’t carrying much.  I adjusted my MP3 player and changed the music.  It was going to be a cold, cold walk home.  I was glad to be wearing boots, and that I had checked weather dot com before leaving home.

After my nap and before leaving the house to go caroling

I have noticed that human beings break promises, and I am no different.  I broke the promise I made to myself that I would not have caffeine today.  I didn’t have morning coffee.  I often don’t have coffee in the morning simply because I forget to make it or I make it and forget it’s there, and find it hours later still sitting on the counter waiting for me, stone cold.  I spooned down a cup of Roastaroma right before leaving for church this morning.  At church social hour, I drank herbal tea.  That’s a first because I always have the coffee there and I always pick the largest mug and feel that surely I am being selfish for doing so.  I came home and slept for two hours and then got up and felt groggy and headachy.  I took two aspirin and gave in and had my coffee.  I feel better.  Improved.  Not great though.

That’s not really what I wanted to talk about.  I was just at church as I usually am on Sundays.  I am going back in a bit and then a bunch of us are carpooling over to this place and then we are caroling there and then going back to the music director’s place for a get-together.  I am a busy girl.  But I felt it was important to write in here with the little time I have in-between.

You just don’t know anything about the future.  You can’t predict New England weather.  It is cold outside today.  I am cold, very cold sometimes.

After church–well, let me just say that church is different each time I go.  Each time is special.  We had the Christmas pageant today.

When the kids were up there singing, I thought I was going to start crying.  There I was, sitting in the second row.  I was scared the kids would see my crying, and not understand my tears.  Does anyone understand my tears?  No one really needs to understand them.  Many people cry at church for their own reasons and it’s none of my business why they do.  I put a smile on my face and held the liquid tears inside my eyes and did not let them fall.  I willed my nose not to run.

Bodily fluids.  Water.

I have decided that it is no longer a good idea to drink really fast or a whole lot at once.

I don’t have much time, because

I am leaving in a bit.

At 4:45, I have to be at church for carpooling.  But I am getting there early.  My mom taught me to be early.  She was notoriously late.  For everything.  Actually, it was a horrible thing that she was late.  This was one way that she neglected us kids.  It was gross neglect because her tardiness often put us in dangerous situations.  Or she would forget us entirely and not show.  By being chronically late, I learned.  I learned to be early.  Because it is better to be early, or to plan to be early just in case there are delays.  I am always on time.  Or sooner than expected.

Why am I poisoning this entry with talk of my mother?  I was just in a deep sleep.  I slept for nearly two hours.  I woke up and the edema was gone.  I asked myself if all the fluid had gone into my head and that’s why I had a headache.

I have been Doctor Greene all weekend.  Survival.

I have just peeked.  My legs are gross again.  When I left the house this morning I thought about how this really does a number on my self-esteem.  Actually, I read on a website that the common denominator among people with eating disorders is low self-esteem.

Imagine that.

I could use a shower after that two-hour nap.

After 31 years I am finally realizing what my anorexia is all about

Wow sometimes things happen in my head very, very fast.

I got out of the hospital Monday, that is, the 26th.  Today is Tuesday, so I have been out eight days now.  The first…how many?  Four?  were fine.  Except for lack of sleep…fine.  I slept an hour or two a night but there was so much I had to do and keep track of.  You have to understand that I hadn’t been home for 26 days and my Inbox was full of crap and that crap kind of symbolized the mess I had to take care of…practicalities of being a grown-up and living in the Real World.

Then, Thursday afternoon.  I have discussed this and dissected this with my T.  I came home from my therapy appointment and I had a snack planned.  I ate Snack X instead of Snack Y.

Well, let me back up.  While I was in the hospital….those of you who have been hospitalized for any, any reason are familiar with the way hospital kitchen menus work: you fill out your menu for the next meals ahead of time.  At the hospital where I was staying, you filled out Tuesday’s three meals on Monday, right after Monday breakfast.  Wednesday’s three meals you filled out after Tuesday breakfast.  And so on.  On the menu sheets they give you choices, whatever the kitchen is offering.  You circle whatever you want.  You hope that the kitchen doesn’t goof your order and that you get what you ordered.  If you are on a special diet, which could be any diet you can imagine, such as “allergic to seafood(or eggs or whatever),” “Kosher,” “vegetarian,” and the dreaded “ED” (eating disorder).  Oh, and let’s not forget “paper and plastic only.”  This is for the psych patients.  Plastic utensils only, no ceramic, no glass, no metal, nothing sharp or breakable or throwable on the tray.  On some psych wards, caffeine is not allowed.  On other psych wards, caffeine is heavily restricted.

So every day, in the hospital, I filled out a menu, in the morning, after breakfast, and got in the habit of writing down what I’d ordered.  If there was anything extra I planned to ask for, I made note of this, too.  If I wanted raisins in my oatmeal, I had to ask for these separately from the supply on the floor.  Believe it or not, I needed a doctor’s order to get food from this stock that wasn’t offered by the kitchen.  (This was fairly easy to obtain.  They did, when it all boiled down to it, want me to eat.)  So I would make a note to myself to ask for raisins to put into my oatmeal.  So every day, in my little journal. I’d have a page that listed “Food planned for Tuesday…..” and a page listed “Food eaten Tuesday…..” which listed what I actually ate.  Yes, there were discrepancies.  The kitchen made goofs.  On the ED floor, the staff made sure the kitchen was impeccable.  But on the psych floor, it wasn’t entirely imperative.  I was told that I should adapt and make do and the staff would do what they could to help out.  Actually, they bent over backward for me.   That plus sometimes I’d regress and not eat.

So I continued this when I got home.  I had all my meals and snacks planned out.  I had a list of food that I felt okay about eating.  This was a long list that is in my journal, a list I can turn to if I’m stuck for ideas.  I did at home exactly what I had done in the hospital.  I wrote down my list and followed the list.  It made shopping easy and it looked like I was going to shop wisely with careful planning.  You can really breeze through the grocery store if you have a list and know where everything is.

Are you beginning to catch on?  It’s my anorexia in a nutshell.

So, back to Thursday.  I had gotten out Monday, gone right to therapy, spent Monday night, Tuesday and Wednesday was busy with going to the library, cleaning, and catching up on things, then Thursday had therapy again, came home, and without thinking, ate a half a banana instead of Cheerios (one of those little single-serve thingies) for my snack.  Then I looked at my list and saw that I hadn’t bothered to look at what I had planned.

Was I getting careless?  Overconfident?  I knew that perhaps I had shopped ahead more than I felt comfortable with.  I had bought exactly what was on my list and my list was longer today than it ever had been.  It seemed like I had used up a lot of my food stamps today.  I wasn’t comfortable with some of the quantities I’d purchased.

I felt overwhelmed.  I felt like I was drowning in

I felt like I was being smothered by

I felt like I was being poisoned by

I felt forced by

I felt like I was being pushed over and crushed and I had to

I felt like I was being pushed over and crushed and I had to reach out and stomp my foot on the little, weak thing that was left and stomp it out and destroy it once and for all.  It is like when you wipe an insect off your arm and you injure it and you have that moment of deep remorse that you have killed a living creature and you  recall when, as a child, you struck out at an animal–the worst that you can recall were the spiders and their legs, this only a few times, and now you are hoping there were no higher creatures–

Destroy

Yeah, it’s just like flattening an insect

There is in my memory something about a boy I knew who beat a toad to a pulp

What scares me is that I could have been that child

I am that child now

…and I have been that child since Thursday at 4:45pm.  That’s Thursday, Friday, Saturday, Sunday, Monday, today.  My body is a pulp.  My ankles are huge.  This is dangerous, people.  I gained 20 pounds in five days.  It’s from edema, which is fluid in body tissues.  I can feel my skin stretched around my calves.

I went to see my primary care doctor today, Dr. K.  I asked her not to weigh me.  There was no need.  I saw the concern on her face right away.  All the baggy clothes in the world can’t hide 20 pounds of excess fluid.  All the baggy clothes in 100 worlds can’t hide the 20 pounds that are stamped in my head and in my shitty outlook on life right now.

I was honest with her.  I admitted that I haven’t taken my medication for a couple of days (why bother?) and had given up on myself.  We talked for a while.  I began to realize that my version of the story had changed its tone from “hopeful” and “looking forward to the life ahead of me” to something else.

Maybe just “beaten.”  By that child.

Before I mixed up Snack X with Snack Y and then the whole ripples of the destroying child, I wouldn’t have dreamed that this would have happened to me.

No, it was buried in my nightmares.  It was buried in dreams that I forget upon waking.

And I wasn’t even sleeping at night.  I wasn’t even allowing myself to have these dreams.  Maybe I was too terrified even to begin to dream for fear of the nightmares.

My anorexia: all that control, all the restricting, the dieting, the purification, the denial, the deprivation, the glory and worship of emptiness–

–it is all about terror of that child–

it is all about tiptoeing around in my hospital room so that I wouldn’t awaken my angry roommate when I got up well before she did

it is all about not tripping off an alarm in the dead of night while the crickets buzz incessantly

it is all about speaking in whispers

it is all about lying

to keep the peace

I have no written record of my first binge.  I have no written record of what I ate.  I know what I ate.  I have it recorded in my memory.  I shocked myself.  I had never done this before.  I was alone in my apartment.  It was August 8, 1980.  Over the years, I have committed this date to memory.

The date of the beginning of my anorexia is July 1st, 1980.  This is well-recorded.  It was planned far in advance.  Today, I will begin my diet.  I will lose…I think I planned to lose less than 10 pounds, certainly no more than 10.  I lost about 30.  My initial weight was within normal range.  Anorexia makes no sense.

I began this entry a number of hours ago and it has taken me a while to write all this.  What I realized was that I lived in fear of bingeing long, long before that behavior played itself out that August.  I think I lived in fear of the emergence of the child for an entire year…or, say, nine months.  This was why I set up the controls in the first place.  To rein her in.  To keep her locked up.

Locked up.

It is written all over my memoir, if you read into it.  I don’t know why I didn’t see it before.

In the book, Jane Eyre, Mr. Rochester locks up his secret wife, who is mad, in his own home.  She ends up burning down that home, and nearly destroying him.

He locked her within himself.

He is bound to her.  She is his secret madness, his secret hunger, his secret rage.  And he is all about control.  He is all about controlling that rage and keeping it secret…from Jane–unknowing, innocence, youth, the future, his new life, purification from the old life, which would be left behind.

Jean Rhys’ Wide Sargasso Sea is narrated by the child, Bertha.  In fact, she was taken as Rochester’s wife at a very young age.  She uses fire because it is the only power she has remaining to her.

Suddenly, the Biblical story of Samson comes to mind.

Destroy.

I am wondering, if I can tame the child before she destroys me (my ankle swelling, Dr. K tells me, is not the problem–the swelling is an indication of something inner, and this, she says, is the problem) then maybe I won’t need the controls anymore.  Maybe I won’t need to restrict myself to death, keep myself empty, punish myself for fear of getting too satiated, never allow myself a full meal for fear that it will turn into something horrible, never allow myself

never allow myself

never allow myself

My mother uses these three words all the time

Which tells me that all this time, she has been parenting a child far more important to her than any of us three that she raised.

That child in her denied her her menstrual periods for two years when she was a teen.

For two years, she was freed of rags because she denied herself

purified herself

she is weirdly pure now

of feelings

kinda empty-hearted

it’s very strange

we can’t figure her out.

She was always a little scatterbrained.  Distracted maybe.

She is quite deaf now.  My brother says she always had a listening problem, anyway.

Maybe she was busy listening to someone or something else.  An inner monster, a voice, something she had to hold down

but it never even came close to erupting because it was buried

years years years of cold

she was in the cold and you could only see her arms, flailing around, and hear her sing-song voice

which was supposed to soothe me.

No, Mother, you did not comfort me.

You never held me, never loved me, never nourished me

it’s called Absence of Love

It’s called the Void

I speak from the Void now

I roar from the Void now

I am the daughter that hungers for God

I am the daughter with the churning pain in her side

I am the daughter that cries out for more in the night

I am the daughter that grew to deny herself out of shame

The pain grew and the daughter was proud to endure the pain

I am the daughter that you shamed

You shamed

You shamed into self-denial

The daughter punished herself for hungering

The daughter denied her own cries until they became the cries of a child, another

The daughter chained the destructive child she saw in herself, locked it up when the destruction became so intolerable that it needed to be hidden completely

It’s not hiding now.  Dr. K saw it today.  My ankles are huge, huge, huge.  She asked me if I wanted to go over to the ER to be admitted again.  She heard the hopelessness in my voice.   She also reassured me that as soon as I stopped bingeing, the edema would slowly subside.  Meanwhile, she is very concerned about my physical health.  She asked me to restart my medication at least, before I ended up mentally sick again.  I told her I would take it as soon as I got home.  I didn’t.  I did take a dose tonight, though.  I took some vitamins, too.  She told me to put my feet up.  This will help my ankles get a little less thick, I hope.

That plus I think I’ve stopped bingeing.

I think it’s over.

I think it’s over.

I think it’s over.

The lid is closed for now.  You cannot hear her.  I cannot hear her.  She has left enough mess for me to clean up.  The mess gets worse and worse each time.  My fear of her–the health risk becomes more and more serious–and my controls…this is scary.  But seeing all this, knowing this

After 31 years I am finally realizing what my anorexia is all about

well, that is something indeed.

 

My second full day following discharge from hospitalization for anorexia nervosa

I didn’t sleep much after the hospital because I immediately went on a three-day binge that seems to be over now.  I do not throw up, so I was just piling it in and piling it in.  It is unusual for someone with anorexia nervosa to binge without throwing up.  Most professionals don’t even believe me when I tell them I don’t purge.  Certainly, they didn’t believe me in the hospital.  A single binge can put 10 pounds on me that I quickly lose.  My ankles get extremely swollen, my heart races and pounds, and I sweat like crazy.  My ankles didn’t always swell like this.  I don’t know when that started.

I ended up talking to my T today.  I hesitated to contact her on the weekend, but I was scared that I was in serious medical trouble, that maybe I had given myself refeeding syndrome, given that only a couple of weeks ago, I’d nearly starved myself to death.  But she said no, that I would be okay.

We talked for a while.  I was surprised that she actually wanted to talk to me, it being a weekend.  She was very helpful.  One of the first things she said was that we should find a “happy medium” between extreme highs and lows of intake.  I didn’t like the sound of that.  I don’t like medium.  I want to eat very, very little.  But I didn’t say anything.  I felt like I wasn’t calling her for help.  I was calling her to see if she thought I’d done something horrible to myself–again–and what to do about it, because I just didn’t know.  She told me I wasn’t going to die and didn’t need to get checked out at this point, which is a good thing, because I didn’t want to have to show up at the ER saying that I had been bingeing for three days.  “Another nutcase….”

I slept for the rest of the day after my conversation with her.  It’s hard to sleep when your stomach feels horrible.  We’re going to talk about it all when I see her on Monday.

I spent over two weeks being watched and cared for and attended to, and now I’m on my own.  I am reminded of getting training wheels off.  You might hate the damned things, but once they’re off for the first time, you’re pretty wobbly.

Tomorrow I’m gong to a local synagogue for a worship service.  Usual worship services at Jewish synagogues are Saturdays, the Sabbath.  But this one has services every single day, not just the Sabbath.  The chaplain at the hospital said I might want to find a rabbi I can talk to after I get out.  I like talking about God.

So tomorrow I’ll put on my “edema dress,” the dress I wear to hide the edema in my legs, and head over to the synagogue via a bus and two subway trains.  I am surprised that I am brave enough to be doing this.  I didn’t want to wait a full week.

My stomach feels pretty horrible right now.  It will for a while, for a long, long while until it finally settles.  I don’t know when I’ll start eating again.  I wish I never had to eat.

What shocks me is that I lived with this for most of my life in complete secrecy.  Bingeing, almost by definition, is done in secret.  My weight would drop and either I would hide it or no one really cared or said anything, and I’d have these horrible, disabling binges periodically.  Now, when I get it, it frequently lasts three days.

On July 1, 1980, I moved into my own apartment and started my first diet.  I had never heard of eating disorders and didn’t think a whole bunch of bad things would happen to me if I went on the diet.  I weighed 117 pounds and I wanted to lose 10 pounds.  One hundred seventeen pounds is a reasonable weight for my height.  One hundred and seven pounds is also reasonable.  When I entered the hospital in the end of July, I weighed 80-1/2 pounds.

Where is my family?  Why didn’t they help me?  Why did my parents not ever listen to me?  Why did my brothers turn their backs on me when they started raising families of their own?  Why does my mother continue to make rude comments to me about my body size instead of being supportive and loving?  One of the “sitters” at the hospital medical ward told me that I was a “sinner in the eyes of God” when I told her I wouldn’t allow my mother to know I was hospitalized and certainly not allow her to visit.  No one has the right to call anyone else a sinner.  My mother, who has eyes and can see, doesn’t know I have anorexia nervosa.  It is not because I haven’t told her.   I guess everyone sins, I have done my share of them as everyone else has, but I have every right to feel whatever I want to feel about my mother.

Well, I am getting tired, and will go back to sleep now.  I have slept all day, and plan to sleep all night.

Today is May 10th

When I was a child–maybe five years old–my mother hurt me.  She cornered me in the bathroom.  She hurt me more than once.  More than twice.  She sang while she did it and I was so little that I thought all mothers did it to their kids.  I thought that this was supposed to happen.  I knew I deserved it.

I don’t know.  Maybe I deserved to suffer from an eating disorder for 31 years, too.

I didn’t remember anything about what my mother did to me until yesterday morning while I was tying my shoe.  I was getting ready to take out my dog, Puzzle.

The puzzle pieces have been coming into place ever since.  There will always be missing pieces, but the images are very clear, and were from the beginning.

Today, May 10, 2011, my mother turns 85.  I am not celebrating.