Are you the black sheep of the family?

Are you, as a person with a mental illness, the Family Embarrassment?  The person never invited to family events?  The person who isn’t included?  The person who always “embarrasses them in front of their friends”?  The one they don’t talk about?  The one who doesn’t show up in the family photos?  The one tucked under the rug?  Covered up?  Lied about?  Washed over?  Forgotten about every birthday?

Do you spend holidays alone, without your family, because they don’t want to include you?  Or, instead, are you the “tagalong,” the one included “just to be nice,” the “extra”?  The one they always ask at the last minute so as not to hurt your feelings, but they’d rather not have to (and of course you know this)?  Are you that “spinster aunt,” or “spinster daughter,” the “add-on,” the one kept in the attic?

Oh wow, do I ever know how it feels, when you call and they say their phone is just at the end of its battery and they have no time to talk.  They have used that line too many times now and it’s getting old, just as old as the rest of their excuses.  Why don’t they just come out with it: They are embarrassed to be seen with you, embarrassed to be associated with you, embarrassed that they have a relative such as you.  It’s a messy deal they’d rather not face.  So why not keep that door shut tight and hope there are no leaks.  Hide it in a place where the kids can’t get at it.  God forbid they ever find out they have a crazy aunt, or all hell will break loose.  It might be contagious, you know.  This has to be contained and kept very, very quiet.  Hands washed clean of it all, contained and buried, keep her in her place, with her kind, for godsakes medicated, tied up, and neatly packaged, on time we hope so we can get on with our affairs.

So I’m supposed to turn 55 in January.  I imagine this is not a “landmark birthday” because it gets overshadowed by 60, the big deal.  But that’s another five years off, and if 60 sucks as badly as 50 did, where does that leave me?  For people with families that have forgotten them, these “landmark birthdays” are about as lousy as you can imagine.  The Big Lonely Day Just Like Any Other.  Dang.

Yeah, smell the fucking roses.  Go ahead.  It’s a beautiful day and all that.  Tell me about it.

I phoned my bro the other day to wish him a happy birthday and he barely thanked me.  He got off the phone real fast.  Wow, honestly, that blew me away.  Broke my heart.

I got a photo of my niece in the mail the other day, and it occurred to me that I’ve never really conversed with her, like, ever.  She could be on a bus and I’d walk on and have no clue.  I looked at the photo and said to myself, “Huh?”  Just didn’t even know who the kid was.  Now, if she ever called me up and asked me in any sincere way for help, I’d welcome her into my heart with open arms.  I’d love to get to know her and would do anything to help a kid.  You readers know this.  But it isn’t happening.  My brother doesn’t want his daughter knowing she’s got a crazy aunt hidden in Massachusetts.  I embarrass him, see.  I suppose that’s the story.

Then again, it could be true, it could be that for 20 years or so they actually could have had no time for me, that ski trips have taken precedence, that the cell phone batteries really were running out every time I called, or dinner was burning, or another call was coming in, or every bullshit line was true.

As our church accompanist said to me once (I really love this line), “That’s show biz.”  I asked him if I could quote him, and he said it wasn’t his original line, and of course it isn’t, but I love that he’s said it more than once, so I’ll attribute it to him.  He meant that gigs don’t always work out, audiences don’t always love you, the pay ain’t always the greatest, and you sometimes screw up, but that’s the way it is, like it or not.  The music will always be there and there will be another gig, more audiences, another day, another sheet of music, another empty or not-so-empty hall to play for, another night when you close the door and walk out of there alone.  I remember my music days and music nights and I remember seeing the janitor sweeping the dust off the floor when the audience had left and gone home.  I remember sitting in practice rooms alone with a piano and music paper and a pencil and eraser, late into the night, plunking out tunes, writing down what I thought sounded decent, note after blessed note.  They said I went crazy one day, and no one knew why.  Maybe it was all that creativity, they said, it got to my head, you know, too much too fast.  Naw, no one really knew, and no one cares now.

Please don't ask me to rate the quality of my day on a scale of one to ten

More often than not, I feel kinda embarrassed or even ashamed mentioning “progress” I’ve made with my mental health.  This is not usually because I’m afraid to speak too soon.  Sometimes, though, I’m afraid my “progress” will be stolen from me.  What I mean is that it will be denied or made trivial.  I’ll mention an example of progress robbery and you’ll see exactly what I mean in a flash.  In brief:  I was 26 and wicked discouraged an no way did I expect help right at that moment.  No one listened, no one cared, and no one that was treating me knew anything about eating disorders or cared that I had one, so I’d long since stopped talking about it, and given up.  I had no faith in the doctor.  He decided to give me Lithium.  I took it.  Right away, my eating disorder improved.  Nothing I had tried even compared to how much this pill helped me.  I said to the doctor, “This Lithium has helped me very much.  It feels like a miracle.”  He said, “This is not true.  Lithium doesn’t work that fast.  You couldn’t possibly be better.  What eating disorder?”

So theft is one reason I hesitate to reveal progress.  I have had progress denied and stolen from me many times.  Folks don’t see the change in me even though I feel it deep inside me and know it’s there, or they claim it’s not possible.  Well, it’s my body.  What I feel is what I feel.  You don’t feel what I feel.  What in fact isn’t possible, Doctor, is for one person to feel another person’s feelings.

The other reason I hesitate to mention progress is due to embarrassment.  This goes way, way back, probably deep back to early childhood.  Oh, I could probably go on and on about progress with toilet training and go into making poops and getting praised up and down for my so-called progress with body function, maybe write an entire essay on that alone.  But I won’t.

I think I will indeed focus on my parents, though, but at a much later time in my life.  I’m talking about a time when they were overly involved in my mental health care.  I would say that it went so overboard that they were privy to unlimited information about my case from my psychiatrist and therapist.  At any time, they could call these people and discuss my general welfare in detail with these people.  Not only that, but these people shared stuff with my parents that they never shared with me, stuff about future plans for my care, for instance.  My parents could ask any question they wanted and they’d get an answer.  In this sense, my treaters and parents together considered me a child who didn’t have any capability or responsibility when it came to my own care, or need or desire for knowledge.

So you get the picture.  Little Julie with a room full of big adults.  The playing field.  The doctor asks, “Julie, can you tell us how you are feeling?”  My parents on the edge of their seats, ready with their pom-poms and confetti.  I wait a minute.  I take a breath.  I say, “I think I’m feeling…I’m feeling…I think I feel good today.”  My parents jump for joy.  My mom waves her arms and cheers.  “Yay Julie!  Rah rah Julie!”  And then the parade starts.  Posters are erected for Julie.  “Look at Julie!  We’re so proud of you!  Rah rah!  Let’s all go out and get some slurpies and stuffed animals!  Everyone, come and see big Julie, all better!  She is the star of the show!”

So you can imagine.

Okay, so say my response is that I feel bad today.  Here’s what they say in response.  Their faces fall.  They droop.  They say, “Aww.  You lost.   Let ‘s kiss your boo-boos and make them all better.”  Certainly no raised arms.  No parade.  And to the doctor, “What’s wrong?  Give her more pills!”

So this was my cheerleading team, for years.  Yes, they rubbed it in.   They rubbed their own noses in it, saw it so up close that they saw nothing else, and nothing else mattered.   They were short-sighted.  They were unwise, and they were fools.  I was unwise as well to let all this continue for as long as it did.  What I wanted to tell them was, “Hey, ‘This too shall pass.'”  I saw as well as any of them there that not only did life have its ups and downs, but that life was more complicated than just having a bad day or a good day.

Finally, I pulled the confidentiality card, and stopped allowing my parents to participate in any way in my care.  For many years, I continued to argue fruitlessly that to rate my “mood” on a scale of one to ten, as doctors and other mental health practitioners often insist, is trivializing “mood” to the extreme.  The same goes for rating how my day went.  How can I put a number to something that is qualitative and not quantitative?  How can I put a number to something that has many, many dimensions?  This is like rah rah.  This is trivializing. This is like reducing to “good” or “bad.”  This is saying whether I won or not when I didn’t win or lose this day.  I breathed this day.  I might have felt like a winner or felt like a loser, but that’s only one of the many, many thoughts and feelings that I have had when all is said and done.

So I hesitate to mention any progress.  But right here right now on April 10, 2012, I do feel progress is happening.  I am fifty-four years old and I have spoken about some of this progress and repeated some of it over and over and over.  Some of it I haven’t mentioned out of embarrassment, fearing rah rah, fearing that someone (real or imagined) will pounce on it and steal it.

When I was in the hospital, I used to write stuff down, and I’d have these meetings with the doctors and bring my writings with me.  Nine times out of ten…well, no…just about always, no matter how much or how little I’d written, they’d sit there and say, “Say it in your own words,” or they’d say, “How about summarizing.”

I have a couple of things to say.

These are my words, first of all.

Secondly, this thing that I have written is a summary.  That’s why I wrote it in the first place.

But before I even had a chance to say that much, most of them had already sized me up.  They hadn’t even read my chart.  But they’d flipped open a page, written their orders, and said they had no more time for me.  Case closed.

Now and then, I’d walk into these meetings with something written in list form.  A tiny piece of paper gets a more positive response, and I’m more likely to get more of their time, maybe even more of their attention.  Sometimes, I wrote progress lists.

Here is my progress list for April 10, 2012:

I am forging my own path in regards to my care.
I have rejected “traditional care.”
I have rejected inpatient eating disorders treatment.
I have rejected tried and rejected the one “eating disorders” partial program that I tried.
No residential care takes “public assistance” insurance (Medicare, Medicaid) and I have rejected these forms of treatment.
I choose to stop therapy.
I have chosen to taper off as many psychotropic poisons as I can.  I started this process and have done well.
I chose to stop DMH services.
I chose to end “weekly weight checks” and cease weight-centered eating disorders treatment.
I chose not to follow a traditional “meal plan.”

Without hesitation or doubt, I know that the above decisions were and continue to be the right path and my true destination.

Where am I headed?  I am forging my own path now.
No one tells me what to do.
This means I make mistakes.
When you are doing “traditional care” with a “team approach,” mistakes get made, too.
The difference now is that I am the one making the mistakes.
I and I alone am responsible for the mistakes I make.
I own them.
I forgive myself, pick myself up, and move on.
Sometimes, it takes a bit to get going again.

Here are some very concrete examples.  I will try not to get too embarrassed over this.
I have experimented some with my medications.
And if you are bored with this gibberish, skip this paragraph
And go on to the next one, okay?
Lowered my Trileptal.  That didn’t work out too well, so I put it back up again.
But I seem okay on half the Lamictal I was taking.  Better, in fact.
Naturally, it’s all experimentation.
Of course I do shitloads and shitloads of reading and re-reading of
drug inserts and interactions and titrations and stuff I read all over the place about side effects
and potentiation (which means when one drug makes another drug more effective than it normally is)
and weird things that happen when you get off a drug
that the drug companies hid from the public.
What’s most important is what happens to me
How I react.  How I benefit or don’t benefit or react badly to a drug.
Lamictal kept me awake at night and gave me double vision.
I used to take 600 a day.  It says clearly on the insert that is included with the original bottle
That for “bipolar,” doses above 200 produce no further effect
While in certain research, higher doses are claimed to have effect…hmm….
I have lowered my dose from 600 to 100.  I feel much better, can sleep finally,
And finally, finally, when I look at Puzzle, I am less puzzled,
Because I see my one dog, and not two.
I can’t afford twice the vet bills.
I am off my antidepressant because it stopped antidepressing
And stopped stopping my bingeing.
I’m hoping that my vital signs will normalize.
I’m hoping that my breasts will return to normal size
And in so doing, maybe I’ll get some relief from body dysmorphia
Which I think is caused by increased breast size from galactorrhea
(this time I think I have it spelled right)
Which is increased milk production, a side effect of the antidepressant.
And I am also successfully reducing my Topamax.
It, too, has pooped out.
As used to prevent bingeing, it doesn’t work for years and years, typically, I’ve read.
For whatever reason, Trileptal seems to help me
So I’ll stay on it.
Enough about meds.

And here’s a bit about food:
I played around with what types of food I ate
What types of food I purchased
What types of food I could afford
I made decisions based on food price
I made decisions based on nutritional value
I made decisions based on how long I could store a food
Where I stored that food
How I stored that food
What quantities I would have to purchase
Whether it contained sugar
What form of sugar
I asked myself how much sugar I wanted to consume
I asked myself about how different foods made me feel
Both physically and emotionally
Whether a food made me feel satisfied
Whether a food tasted good
I thought about flavor
What went with what
I thought about what foods felt scary to me
For any reason.
I knew that I didn’t have to justify to any other person
Why these foods felt scary.
I noticed that when something was labeled “natural”
This word, “natural” was pretty much meaningless.
I want to buy food that I can bring home on the bus
Or carry on my back in a knapsack.
I asked whether a food contained a whole ton of salt
I asked myself about processed foods
I decided that diet soda was a waste of food stamps
Which really I already knew
I no longer buy coffee at coffee shops, ever
My own is better
I noticed that processed foods were more expensive
I noticed that foods that were made already
Were much more expensive
Than if I bought the ingredients and put them together myself
I considered the risk of ending up bingeing on that food
I made decisions based on what would make me fat
How many calories were in it
Yes, I admit this.

I found myself suddenly very, very broke
And go to food pantries now
I have learned a lot about food pantries
Through experience.
It takes practice.
I want to write about the unique experience
What it’s like to have an eating disorder
And experience a food pantry.
I have learned what to choose in canned food.
And what not to choose.

Yes, I still binge.
This has changed drastically.
I no longer spend…how much of a bill was I running up?
It is unthinkable.
We’re talking cash.  Well, no more.
I don’t do sugar binges anymore.  This is amazing.
Don’t ask me how I made this change.  I do have a credit card and I very well could use it,
But I don’t.
I don’t run out and buy cake or ice cream or candy or peanut butter
I don’t eat a stick of butter by itself
No donuts or pastries or muffins or bakery stuff
No pretzels or chips
No cheese or cookies
Nothing delivered or from a restaurant of any kind

Why is this?
It is embarrassing and awkward buying this stuff.
I can’t afford it.
It’s damn embarrassing using my food stamps to pay for it.
It makes me feel very, very sick afterward.

So.
Oatmeal.
Pasta (not that “ramen” shit, which tastes like pure oil to me).
Canned soup on sale.
Canned veggies on sale.
Any quick-cooking, very inexpensive grain, whatever’s on sale.
Potatoes.
Yams.
Leftovers.
Canned pumpkin (I get a lot of coupons for it).
Fresh veggies (not expensive ones).

I have almost broken my tendency to dig into Puzzle’s food.
Almost.
I am just about dog-food free.

When you add it all up
And consider everything
I have spent time eating nothing at all for days.
I have spent time bingeing for several days in a row.
These two things are the same as before.
But what I binge on has changed,
So financially, I’m not dropping hundreds of dollars a month

And the other thing that has changed
And here I’m a little embarrassed to admit this
Is that I have spent a few days
Actually eating meals.
This is brand new.
No, not real big meals.
It’s kinda scary.
No, not freaking “meal plan”
An approach I did indeed try, over and over
And it never worked for me.
I am forging my own way.
I am experimenting.
Trying out.
Seeing for myself and my own body
What works and what doesn’t work.
I will continue what works and stop doing what doesn’t work.
“Meal plan” didn’t work.
I would rather do something that not only works
But is inexpensive, healthy, practical, and logical.

I see progress.
I see learning from mistakes.
I enjoy learning.
I am not embarrassed about learning.
I am proud to share the fact that I have learned new things with others.
I am proud to say that I have found things that have worked.
I am cautious about suggesting to anyone else to do what I am doing.
I encourage others, though, to look around, to keep an open mind
To listen
And to realize

Although my path may be a little bumpy
You can trip on any path, even one that is well-trodden.

I carry a flashlight.
I bring my dog with me.
I pick up after her.
I pick up
After myself.

So,

I have a couple more things to say, and then I’ll shut up.

These are my words, first of all.

Secondly, this thing that I have written is bit longer than a summary.

There is a place for summaries, and there are places where I can go on and on in as much detail as I want.

This is my blog, a place where I write whatever I want.  A place where no one tells me “time’s up,” and shoos me out of the office.

If you didn’t want to read this, you wouldn’t have gotten this far down.

And now that you’ve gotten here, it’s my turn to say, “Time’s up.”

You can get out of this blog entry now, and walk through the door.

My door is never, never locked.

 

I want to buy food that I can carry home on the bus
Or on my back in a knapsack.

 

 

 

Reaching up

When I was a very, very little kid,
And my grandma asked me what I wanted to be
For Halloween, I replied,
“I would like to be a star.”

So she got to work.
She bought some orange cloth material.
She was good at sewing.
She was good at measuring and cutting and pinning.
She sewed the parts together.
She ironed and starched what she had made
Till it was nice and stiff.
It fit just right.

We went to look in the mirror, and
I saw myself all dressed up in my costume
Dressed to look like a five-pointed star.

My grandma said,
“Now aren’t you a dahling.
You’re so special, and all mine.
Come, take my hand.
Let’s go show the neighbors
What an cute little star I have.”

This year it will be
A hundred and twelve years
Since my grandma was born.
She wasn’t very tall, but lived a long life,
Longer than most old people tend to stick around.

I’ve stuck around now for fifty-four years
Since Grandma and I paraded around the neighborhood.
It’s been a long, long time
Since I curtsied before my parents
And dutifully turned in my candy bucket
So my mom could tuck away my collection
And dole it out to me bit by bit
So I wouldn’t become a horrible, fat child,
So that everything would be just so
And right with the world.

Today, I walked home with a canvas shopping bag
Full of staples I’d collected at the food pantry.
No matter how much or how little I get there
The bag always seems very heavy to me
Because I am not very strong.
I ended up skinny.
I ended up developing an eating disorder.
Sometimes my heart is heavy in my chest.

My name is Julie Greene.
I am an extraordinary writer.
I am an activist for people with eating disorders.
Not only will I change the world,
But I am changing the world right here and right now.

I have so many writing ideas right here and right now
That I have had to write a list
To keep track of them all.
I help people by writing and sharing
and speaking out loud what I think and feel inside.
I help myself.

I went to therapy
And learned about what therapy is and isn’t.
I wrote
And learned about myself.
I became incredibly self-aware.
I am continuing to develop this knowledge of myself.
Self-awareness needs to be cultivated and maintained.
I have my Power.
I write.
I have Power because I am a writer.
I saw some very wrong things and knew
That I was the very right person to change these things.
I woke up and saw all this one day, and because I saw it
I knew the Power
And because I knew it
I then seized it
And held onto it
And today I celebrate it.

As a person with an eating disorder
I may be skinny, and at the same time
View myself as not skinny
And see a fat person when I think of myself.
This morning I woke up, and like some, but not all mornings,
I called myself nasty names.
I don’t need to list them all again.
I remember them.  They are common words
Used cruelly.

Many people think “fat” is an insult.
Many people think “fat” is bad.
Many people think “fat” is immoral.
Many people think “fat” is a whole lot of things.
In truth, it is a rather meaningless term if used
To describe a size or shape
Mainly because different people define “fat” differently.
Maybe it’s a merely a slang term for “overweight,”
And overweight isn’t the same for everyone.

This is even true in the medical sense.
Why do I say this?
I’m guessing that most people
That have strong and well-put-together hearts,
Care deeply for themselves, and stay in sane places
Can live in bodies of many different sizes and shapes,
And if anyone tells them otherwise,
That person can just go to hell.

So in thus saying, I know that I have body dysmorphia
Which is what it’s called
When I am a skinny person and I think I’m fat,
I obsess way too much, and
I see my body unrealistically.
Body dysmorphia is a component of anorexia nervosa.
Many people have body dysmorphia as a single mental illness.
Not too much is known about this mental illness.
So many people who have it don’t even know about it
And aren’t even aware that they have it
Or even know that there’s anything wrong with them
Or are aware that they obsess
Or are aware of their deep unhappiness.
They keep everything so secret that it is a secret to themselves.
Suicide is very common among these sad people
And I’m guessing that many never know why they are so driven
And so desperate
And so cornered by the need to obliterate
What they hate about their bodies
That they obliterate their entire lives.

Today I celebrate my Power.
Today I celebrate my self-awareness.
Today I celebrate my awareness
Of my own body dysmorphia.
I celebrate my ability to call my imperfection
A name, and to write this name
And to tell the world my true feelings about my body.
I celebrate my ability and freedom
To admit to the world that I hate my body.
And in so doing, communicate to others
That this is painful to live with,
That I am not the only one.
I celebrate my ability to challenge others
To look deeply within their hearts, and ask,
“Do I, too, feel hatred toward my own body?”

Today, I celebrate my ability to share with others
A bit of the joy I feel when I write and learn about myself,
The joy I feel when I learn about myself,
The joy I feel when I encourage others to write
And learn about themselves
And maybe learn about their own feelings
About their bodies.

I have the Power to change the world.
I have the Power to change myself, too.
I can change myself without putting on a costume.
I have the Power to grow tall, and reach the sky.
I can reach the sky with no one else holding my hand.
I can reach out, reach up, and with both hands held high,
With both feet still firm on the ground, I can touch the sky.
Can you see me doing this, right here, right now?
At last, I am a real star.

 

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.