Lies, Damned Lies....

... and Anorexia.

If Anorexia is a faceless figure in an old black and white horror, then deceit is the dark cloak wrapped around the shadowed form.

As a fourteen year old, I watched as this graveyard figure misted around the sister I adored, breathing lies and cunning into the mouth of her soul.

When she spoke, it was with a new voice; a voice of distrust, defence and guile.

I hated the dainty steps of deception that I heard moving so quietly along the upstairs landing; from bedroom to bathroom; from sink to window, from hand to mouth to toothbrush. I hated watching the cloak pass over her - through her, each time stealing away a piece of the sibling I loved more than myself.

Lately though, I too have taken breath from the figure. I understand now, that same desperation, which shakes the pounding heart, and will go to such lengths to protect and disguise the disgusting truths of an anorexic existence.

Fingers pushing against the wall of my throat, I heave and retch, praying to keep silent.

My dad knocks on the door and asks to be let in.

I am washing the last of it down the basin, frantic, talking all the time.

I let him in.

"What were you doing just then, with your door locked?"

I search in corners furthest from the truth.

It must be feasible. It must be shameful.

"Oh..."

I can't bear the look in his eyes.

"I was... weighing myself".

I manage to whisper,

"sorry".

He wraps me in his arms to comfort my despair.

"Oh love... " Words of comfort pump shame around my body. "It'll all be okay... Just as long as you're not secretly drinking or making yourself sick"

A couple of days ago, a similar scenario. This time, I'm sure he knows.

Eyes watering, throat burning, nose running.

I was washing my hands.

Honest.

***

Not only does Anorexia make liars out of its prey; it is, IN ITSELF, a lie.

It's a throat grabbing, heart stopping, life sucking LIE.

And although one part of me knows that this lie is fundamental to the discovery, diagnosis and medical definition of this disorder, another part cannot possibly disbelieve the truth of what I see and feel.

It doesn't matter that that 'truth' is a distortion.

It doesn't matter that it may be a deception.

What matters is that no matter what the scales say, the truth is, it's never small enough.

Sucked in.

On The Other Side.

"...But there's another kind of hole, and that is the wound that divides family.
Sometimes the wound occurs at the moment of birth, sometimes it happens
later. We are all fixing what is broken. It is the task of a lifetime. We'll leave much unfinished for the next generation...
...I have infinite faith in the craft of surgery, but no surgeon can heal the kind of wound that divides two brothers (siblings)"

Abraham Verghese

Cutting For Stone

As I am having huge problems finding words at the moment I have resorted to using those of others.

This resonated as I read it the other day.

There's not a lot out there which acknowledges the impact of damage between siblings.

I remember in the early days of my sister's anorexia, when the wound of her violent and total rejection was still so, so raw and my flesh unaccustomed to the pain, searching high and low for books about anorexic siblings.

All I found was a reasonable amount of literature on 'Helping Your Child Eat' or 'Coping With An Anorexic Child'. That kind of thing.

A good few years ago, I figured that one day I might have found the healing and the balance I needed to help me write a book about anorexia with siblings in mind. I thought that somehow, I would be able to look on the years of loss with the glow of gentle understanding borne of the twisting grief of watching the slow suicide of a sister I loved with everything I had.

It would be called, "On the Other Side" in reference to a range of recurring nightmares I had for the first ten of the seventeen years of her illness. The dreams were all variations on the same theme... I was always stuck on the other side of the shatterproof, soundproofed window as she was mugged, the other side of the pond as she was buried in the mudslide, the other side of the turquoise lagoon as she drowned.

And the feelings are indescribable and yet, so many of us are familiar with the extraordinary pain of watching those who we love the most, kill themselves slowly and painfully, whether that be through eating disorders, drug addiction, alcohol dependency or just very, very poor life choices.

Not to minimise the angst of those who are compelled towards death by the strength of their addictions, but I honestly believe, and I'll speak only for myself in an attempt to avoid sweeping generalisations... I honestly believe that it is more painful to watch someone you love in agony than it is to be in agony yourself.

The Other Side exists for all of us at some point in our lives, but rarely to the degree that it does when it is the absurd chaos and torment of severe mental health problems and addiction that tear a family apart.

No surgeon can heal the wound that divides two sisters. If I could find one who did, I'd sell everything I ever had.

Saying the Unsayable

Although it seems absurd for someone of my age to behave in such a way, whenever my anxiety becomes unbearable, I crouch against the radiator in my room, and play game after game of Bejeweled or Word Scramble on my itouch.

It's a way of not thinking.

I have been crouched there for the last two hours.

My therapy session is responsible for tonight's retreat into a world of random letters on nine squared grids.

"Tell me about your week", the woman asked, when I explained that I had struggled with a huge loss of control with my eating since Wednesday.

So I do.

I tell her about the ferocity of my four day workouts, I tell her about the pressures of GCSE coursework, I tell her about the curriculum inset I have been on. I tell her about the anxiety I have felt.

She asks if I feel the impact of the kids' anxiety. (The children I work with / teach).

And so I begin to tell her about a particular kid, one in my group, who is in the middle of a case where her secret history of sexual abuse has come to light.

I tell her about this poor girl, who I want to wrap up and hold safe until it's all over. I tell her about how much I want to protect her, how frustrated I am with child mental health services lack of input, how I want to shred the red tape that is binding professional services from helping her for the next few weeks.

I tell her about how much she reminds me of me at that age... Her anxiety... the phobias she has...

I recall the fear that wraps itself around her at night...

And the woman utters the omnipotent, 'yes' and adds that she was just thinking that.

Why? I ask her.

She doesn't know the girl. How can she know that we're similar?

The woman's response is a blank (in my memory) except for the fact that she compared us in terms of dissociation.

So she knows. She knows about the extent of the dissociation. How does she know that it's that bad?

(Note the twisted irony in the fact that my mind has gone blank somewhere around this)

We talked more about the girl, until the woman said that what was important, in terms of our work, was that I tried to remember the fact that I had noticed similarities between this girl and myself.

More blanks

until

we discussed something my mum had said the other night when talking about my

sister's seventeen year long illness.

Mum: I've often wondered why... Why, when she has grown up in this family... With all this love... How....?

Me: Maybe love isn't always enough.

Mum: Of course love is enough... being loved...

The woman says it's an interesting and that she takes it that my parents only recognise 'abuse' as something very violent or sexual...

She says something about emotional abuse and I say,

"My sister wasn't emotionally abused"

" I was thinking of you actually"

That's hurt my stomach. Can I tell her that? Can I tell her that what she just said hurts in my tummy? No. I can't. That sounds pathetic. It is silly and it doesn't make sense.

And I'm dazed and a little way off and I am beginning to pick up the cynic's shield because somewhere it's aching but somewhere else it's feeling like a deliberate game, playing with my emotions, kicking the ball at me when I wasn't looking...

"Huh? What is emotional abuse anyway?"

There's no such thing. It's another bloody therapy buzz word. They get paid to turn us all into victims.

"Emotional abuse is being repeatedly hit... a little girl being thrashed in the middle of the night when she's anxious... blank blank blank

Blasted by an ice blow torch. Instantly frozen.

What? What's she saying? No more. Don't say anymore. please stop. Did I just say that bit aloud? Don't cry. Don't cry. You're ok. You're ok. Don't cry.

........"that wasn't to help you... that was out of anger... It was out of control..."

Stay calm... It's ok... What do I do with this? What am I meant to do with this?

I hear a small, strangled groan that might be a sob

Shit. Did that come from me? Did she hear? Please don't let her have heard

I want to cough to cover the sound up.

No, a cough'll just make it worse. Maybe she didn't hear.

Sudden tears on my face

No. No no no no no. Don't cry. Come on. It doesn't matter. It doesn't matter. why am I crying? What am I crying for? It isn't anything. I don't even feel anything. Why are you crying you silly girl?

"....... and we're a couple of minutes over and I realise this is a bad place to have to break... just take a few minutes...."

What do I DO with this?

She's saying something about saying the unsayable

"There are some tissues......."

She knows I'm crying.

Of course she knows I'm crying... I'm trying to wipe my face... What the hell am I crying for?

She's asking what my weekend is like....

I'm telling her I don't know. That it's ok. That I'm ok. That I'm sorry.

And it's a blank how I get out of the room.

Fattening Up Under The Cloak

If I think of the chocolate and the jellybeans and the more chocolate and the more jelly beans and the rice crackers and the mini eggs that I have stuffed down me...
An endless onslaught of sugar coated dollops of fat.
My head is spinning in a panic of sugar and heart pounding horror at what I’ve done.

What have I done?

I’ve worked so hard to burn it all off and now, in one evening, I’ve thrown my body into chaos with a purge-less binge.

I want to run and not stop until my bones tear through my skin.

My mouth hasn’t been empty for more than 5 minutes since I left therapy.
Which implies that it was difficult right? But it wasn’t. Not really.

We spoke about a dream.
The bookshelf was a flimsy, wooden frame covering an entire wall. Like some sort of Ikea job, the frame had compartments, filled with rows of books.
They wanted to move the whole unit.
I stood and watched in silent desperation as the thin frame twisted and most of the compartments on the left side emptied crashingly.
I’d warned them it would happen and they wouldn’t listen.
We talked about how it was about therapy. Somehow. I think Friday’s session had some bits in it that felt very much like the shelf would twist and things would fall out.

I can’t remember what she said. Surprise. Surprise.

My heart is cloaked with sadness.
It has been since Saturday evening when my dad recounted his visit to the hospital where my sister is currently sectioned, caged like the animal her illness seems to make her.
He described how, as he sat next to her watching something on her laptop, her head suddenly dropped and lolled.
He'd asked if she was falling asleep and listened to her half breathed response. He helped her climb up on the bed and watched as she immediately slept.

A nurse popped her head round the door, apologetically, not realising dad was there, she called to my sister to say it was lunch. Feeding time. Force feeding.

“They’ve turned her into a zombie”.
Dad does an impression of her that all at once makes my eyes prick with unusual tears.

I don’t cry for her anymore. Not usually.
And I didn’t. But my throat ached and I had to look hard into the bottom of my glass to see the grains of the table.

My sister restrained, and injected with anti psychotics.
Sedated. Unable to run. Unable to rebel against the controlling regime they force upon her.

It’s her fault.
I comfort myself.
It’s her fault.
She’s the one who tries to starve to death.
Again, I am cloaked by a choking sadness.

And I am a desperate teenager again, wanting to scream,

Lethergogetyourhandsoffmysisterleaveheraloneleaveherthefuckalone, tearing at their strong arms as they manhandle my beautiful, frantic, sobbing sister.

In real life, all the books fall out at once.

What It Takes

As with all things in the mental health realm, the DSM IV lists a number of must-haves in order to be a Real Live Anorexic.

If you have been reading here with any regularity (or any memory), you may recall that my sister, who has spent roughly half her life being defeated in her attempts to starve herself to death, was possibly the case on which the DSM criteria is actually BASED.

Okay. Maybe not.
(But she could very well be)

For anyone interested, the DSM states that Anorexia Nervosa is defined by the following four factors:

• Refusal to maintain body weight at or above a minimally normal weight for age and height: Weight loss leading to maintenance of body weight (85%)

• Intense fear of gaining weight or becoming fat, even though under weight.

• Disturbance in the way one's body weight or shape are experienced, undue influence of body weight or shape on self evaluation, or denial of the seriousness of the current low body weight.

• Amenorrhea (at least three consecutive cycles) in postmenarchal girls and women. Amenorrhea is defined as periods occurring only following hormone (e.g., estrogen) administration.

Obviously, seventeen years of bearing witness to the horrors of this illness have taught me that in actual fact, the above prerequisites to the label of 'Anorexia Nervosa' are only the very tip of the iceberg.
I could name many more factors.
But that is, perhaps, for another post.

You could be forgiven for thinking that, given the fact I have lost my sister to the horrifying effects of this illness... given that I have raged at it, pleaded with it, cried to it and knelt moaning before its merciless, monstrous darkness... I would be the least likely person in the world to be drawn into its world.
You'd think I would be incapable of drawing others under the agony that wrapped itself around our family.

You'd think.
I thought that too.
Until something, at some point, changed.

Today I am 6 stone 5.

I'm not a proper anorexic... (which is what I wanted to write about when I began this post).

I'm very, very confused because I don't 'fit' in with the notion I had of Anorexia.
I thought that Anorexia had to come easily to those with it.
I thought that I was a 'fake' because I crave chocolate and all I really want to do is eat lovely food.
I think I'm crazy because I hate working out, but i have to, but I hate it, but I have to.... and my HUGE fear is that one day, I won't have the willpower to drive myself to run for miles, climb hundreds of floors, cycle like a maniac, cross train at high intensity, row hard and fast, use the resistance machines, do my floor exercises until I can't move.

Anorexia, if it is anything like this, isn't about suddenly hating food. It's about a spiral of absolute dread that you will lose control of it, even as it controls you.

Difficulty and Disgust

Even a master of understatement would struggle to say that therapy had been anything less than "extremely difficult" this week.

Difficult.

Difficult to find words to write about it.
Difficult to find anything concrete to hang the words on.
Difficult to be in my body right now.
Difficult to feel anything other than utter disgust for myself.

On Friday night I sat in her room and tried my best to stay still as my insides curled and contorted and twisted at the touch of her words.

It's hard to remember what she said.
My despair was so great and she pounded on with her search for meaning... the whys. The effing whys.
My only why is often, 'why does it matter?'
Why does it matter why my parents transfer things onto me?
Why does it matter if Dad's doing this or that ?
Why does it matter if .........

At times, her questions and her wondering lead me to a place where I no longer exist. Where nothing matters and I doubt that anything I have ever felt is real.

On Friday, she told me I had been silently furious in the previous session.
I think she may have been right but I can't recall feeling anything at all.
She had 'threatened' to call my doctor.
I told her she wouldn't see me for dust if she ever did that.
And I mean it.

I was angry on Friday too.
She didn't understand how hard it is for a single person (who doesn't even know whether or not "the future" is a possibility) to buy a house and live with the pressure of being solely responsible for mortgage repayments.
To be fair, she did admit that she hadn't really thought about how hard it might be.

I felt she was disgusted by me.
I heard her mind screaming at me underneath her carefully restrained words.

"Pathetic.
Weak.
Pull yourself together.
Stop being so lame.
Don't be such a wuss.
For fucks sake, get over it.
You are wasting my time.
Grow up.
I want to slap you.
You disgust me.
You're revolting.
You pathetic little victim.
Stop your whining.
I can't deal with your ridiculous feelings.
You are irrational and absurd.
Stop being so complicated.
Don' be so negative.
I could wring your neck.
You need a good smack."

That's what I heard.

I asked her if she was disgusted.

No. She SAID.
Quite categorically.
No.
(But then she would wouldn't she)
Instead she reeled off some disgusting, pity laden bull about how I was wretched and suffering. She took advantage of my choked inability to argue to tell me that no matter how much I didn't want to know it, my parents had not "cloaked me" enough (go figure).
And I cried out of the sheer anger at her, the utter exhaustion and pointlessness of it all.

So what?

So what if this happened, or that didn't happen? So what?
It still leaves me where I am now.
I need to change that.
Not look at why or how or when.

My middle sister is in hospital again and my youngest sister doesn't want to be anywhere near me because she can't bear to see me losing weight.

I feel like I have somehow lost everyone.

My skin screams that it is almost unbearable.

Isn't It Ironic.

Eyes fixed, head down, her rage and bitterness fueled a pace close to a run as she walked away from my desperate calls in town today. My eyes burned as I watched the dark dufflecoat hanging off a painfully thin frame, grow smaller and smaller.

She is angry with the unfairness of it all (as she sees it).

Much of my life (over half) has been spent embroiled in her destruction.
Forced to watch her desperate attempts to starve herself to death.
Forced to listen to the cries of my family, as they witness her withering body, her protruding bones,
angular agony.
Forced to look into the inward turning eyes of a father, driven to weep, hollow, heavy sobs,
my eyes swim, and I shake.
Forced to watch the hand wringing desperation of a mother
a face broken, the smash of rejection clattering within,
and I writhe at night, tearing at my sheets
Forced to watch a beautiful little sister, rock on her bed
silent tears flooding the channels of her bitten lips,
and I, a pinball.

Forced to watch a sister
starve to death
I wanted to put
DNR on her bed
I wanted to hold her
until she was safe
I wanted to beat her
until she couldn't hurt us anymore
I wanted to make her suffer
as she had made us
I wanted to take her pain
and live it instead
I wanted to love her
I wanted to kill her
I wanted to protect her
I wanted to hear her
I wanted to be loved by her.

Now?

Nothing.

I believe that, at some point (and I know the point was somewhere during my second or third severe bout of clinical depression) a part of me died.
I no longer feel specifics.

Today she told me I was anorexic.
She told me I had a problem.
She told me it wasn't fair that I could lose weight while she had to go to hospital for five days a week and be forced to eat.

And I stood against the freezing cold in the city centre, trying to draw myself in, as I watched her disappear, willing her to look back, just once.
And I looked at the people circling my axis, and wondered if they would feel the black residue if they walked through the point where all the words had spilt; I wondered if an air space could hold a decade's pain for just a moment.

The agony of the irony is somewhere, and it is too much to bear. Too much to allow. Too much to deal with any other way than to put it on my skin and watch as it runs out.

Circling at One Thousand Feet

It's ironic that as I sit down once again, to tackle the subject of eating disorders, and in particular, anorexia, I have an image of me circling my subject like a very hungry animal circles a potential feed; warily and full of tentative, watchful suspicion that what is being circled might suddenly retaliate with a defensive blow from a place which went unnoticed.

This topic. I'm afraid it has the potential to do that.

I have written a fair bit about my sister. In fact, there are a few posts here about her and although it is not easy to write about, it's more because of my sense of hopelessness around making others understand than any deep pain at the memories of the experiences.
In fact, if anything, I have very few memories and the ones I do have are almost totally devoid of any feeling.
Giant pools of nothingness swill and wash around my insides much of the time. I feel that underneath everything... under all the angst and the pain and the upset, there is nothing.
Just an empty, black void.

Hopping out of that void for a minute, it's fair to say I have been circling my own feed for a while now.
I've burnt a lot of calories with my circling.

I don't expect understanding.
In fact, if anything, I expect to be met with the same level of horror and disgust that I feel about myself.

Having such an intimate knowledge of what it is to have to stand by and watch a loved one scream and twist in an unreachable cage, shredding themselves against the razor bars, you'd think that:

1. I would have more common sense and


2. I would never be as selfish as to inflict it on those who are already so broken.

But no.
It seems that I lack the ability to apply the logic I am such close friends with and that I am clearly so completely wrapped up in myself, that I care very little that others will suffer.

I have developed an eating problem.

I don't want to call it Anorexia because that is what my sister has suffered from for over half of her years on earth, and any similarities between us disappeared long ago.
It also just feels fundamentally wrong to be "anorexic".
I'm just not LIKE that.
It's not me.
I'm not the type.

And... at any given moment, I feel in grave danger of all my control slipping away from me. In other words, I don't know if I can keep up the starvation, the denial, the ferocity of the exercise regime BUT if I even think about going easier on myself, I will be unable to stop the gorging and the uncontollable binging that will follow.

I recognise that wht I have just written lacks balance.

It is a problem I can't find an answer to.

I need extreme lack.

Distorted Perceptions?

Most people with an eating disorder have a skewed perception of their body.

I know this. Better even than most.

I remember walking through town a few years back as my sister explained to me that a Size 8 COULD be fat.
I remember the hot, white anger, tempered by my mind curling around her words, desperately trying to grasp for an understanding, some logic.
I remember it as one of the many, many moments where I felt that my ribcage was a small, cold, metal box holding a bomb.

I've talked a lot about my sister's illness but haven't particularly been able to talk about what has happened to me.

Although it feels like strange and frightening territory, it is perhaps possible, that when I see myself, I don't see what others see. Or at least, different parts of me see differet things.

In therapy we have been, quite gently, picking up the notion of having different parts.
My parts don't communicate with each other, which I'm told, is a bit of an issue.

I realised this week, that my different parts all have something very different invested in starvation...
This would explain why I can't work it out and why my understanding fluctuates between fine, morning mist and a blanket of thick, inpeneterable fog.
Diffeeent parts have different reasons and I can't even access some of them.

It's possible that I even have parts that I don't know.

Imagine.

I'm torn between thinking this is absurd, illogical psychobabble

and

the possibiity that, in trusting my therapist, there is something more... something other... some chance that what I am now is not all I ever will be.

What I Dont Know About Anorexia

I want to try to finish what I began in the post My Sister - Anorexia Here, I established that having shared living space with anorexia, there really is very little that I don't know about it.

Seeming to be either too clinical or too compassionate, I have rarely read anything about Anorexia. In the very early stages of my sister's illness, I may have read leaflets of the kind you find in doctors' waiting rooms, but these were as far as my research went.
At 14 and with a family desperately in denial about what was happening, knowledge was not welcomed.
In fact, the only thing welcomed was a refusal to believe that this "finicky eating" was anything more than just "a phase".
I never believed it no matter how many times I was slapped or shouted down, and by the time they came round to it, it was far too late.
In my sister's case, I don't honestly believe that there was a point when it wasn't too late. But that's another post.

I digress.

Ignoring the title of this post (focus girl - focus), I DO know that the stats for anorexia make pretty grim reading.
Up to 20% of anorexics will die of complications caused by their illness. That gives the illness one of the highest mortality rates of any psychiatric illness.
Although the figures vary depending on who is publishing them, it is estimated that only about 60% of anorexics will make a "full recovery" (I'm skeptical). Of the remaining 40%, half of those will make a partial recovery although they will struggle with eating for the rest of their lives, and the remaining 20% will be unable to shake the illness and will remain seriously underweight and in and out of hospitals and clinics for as long as their bodies allow.

You can guess which percentile my sister falls into.

I also know that although again, the figure varies, it is often estimated that roughly 10% of all anorexics are male.
I would suggest that society will see this a sharp rise in the incidence of males with eating disorders. I have been watching the 'emo' culture closely and observe a worrying trend towards a blurring... a diluting, of sexuality.
(Again, another post).

So... I digress again... Perhaps to avoid...

Referring once more to the title of this post... What I DON'T know, is how, after living in the grotesquely monster like shadow of this illness for so many years, and after having been forced to witness the gaunt fear on the faces of my loved ones... (and for all the words in the English language, I will never be able to describe the agony that has etched itself on my family as they have watched so helplessly) HOW it is that I too, seem to have made this illness my ally.
It feels harsh to say that I have chosen it when I can't begin to work out how it is that this has come about; but my own locus of control won't allow me to say that I have merely "fallen prey" to it.

This is a long one and I still haven't got close to what I want to say.

My Sister The Anorexic

If life were a little more 'Sound of Music', and a little less 'Final Destination', the beginning would indeed be a very good place to start.
However, I can't really say where it all began and so the 'beginning' is really just a blur of tangled threads running though the family loom. Threads which, over the years, have merged and fused, stretched and thinned, snapped and frayed.
For a long, long time, I didn't know where my sister ended and I began.

This is difficult to write.

My sister is anorexic. Severely.
Until recently, I always thought that there are 3 kinds of anorexic. Those who are 'reactive' anorexics, people who are responding to some kind of trauma, tragic life event, loss, abuse etc.
Then there's the second type, 'cultural' anorexics, those who are influenced by the media's disgusting portrayal of beauty... and now in particular, the younger generation's 'emo' population - 'beautiful is broken' image...
And then there is the third type, 'Pure' Anorexia. Anorexia that is not a reaction or a rebellion. Anorexia nervosa in it's purest (and most deadly) form. Up to 20% of anorexics die from their illness and I would argue that most of that 20% fall into the third category.

I preceeded that paragraph with 'until recently', because nowadays I am not as certain about this (or anything else) as I used to be.

My sister almost certainly seems to fall into the third category though.
She is quite undoubtedly mentally ill. Her anorexia is a personality, a pathology.

When I was 14, I lost my sister. Not because she died, but because this illness scooped out every part of her that I had known and loved, took command of her mind and infiltrated her cells. It's almost impossible for me to remember who my sister was but one thing is for certain, she no longer lives. Her fragile body is just a home for her disease.