Anorexia Kills

For whatever reason, I feel the need to preface this post with a declaration that I do not buy the Daily Mail. Finding it, all too often, a thinly veiled excuse to propound nationalistic views, I frequently have to remind readers that the world is not really that bad a place unless they believe all they read in this trussed up tabloid.

I was, however, drawn to the full page article about a long suffering mother, who, five years after her daughter’s tragic death, has made the decision to release the girl’s diaries. Diaries that record the tortured journey of Loredana Verta, a bright, talented sixteen year old, who was dead within three years. Heart attack.

Rightly or wrongly, some of  this young sufferer’s innermost thoughts and feelings are laid bare in newsprint for all to see.

The workings of this girl’s mind are utterly consumed by the illness. Her writing is littered with scribbled self loathing, capitalised screams of  “I HATE ME… I HATE MY BODY”.   Most teenagers feels like this at some point. Hormones, skin, peer pressure, perfection culture, fashion… It’s all there to taunt the aspiring, spot laden, hormone raging teen.

Except Loredana’s thoughts are all centred on weight loss and weight gain and wrongly perceived fat.
To my mind, what is more haunting than the poisonous self hatred, the desperation, the pleas to God and the cries for help, are the words of a grieving mother, who says,

“Lorry thought she could live with the condition – that as long as she was thin, she would be OK. She didn’t realise that anorexia is a deadly disease. It is a killer”.*

For long term sufferers, ‘old hands’,
 Anorexia can be so ingrained, so deeply habitual, that we forget that it is something UNnatural… an invasion. It becomes like Stockholm Syndrome… It’s is our natural fall back position.

It KILLS.
Let’s get real.
It is deadly.

We think it won’t ever happen to us, and yet, why wouldn’t it? It killed Loredana in just THREE years.

Of all psychiatric disorders, Anorexia is the biggest killer. TWENTY PERCENT of sufferers die prematurely.^

I hear my wake up call.

Can you hear yours?

* Emphasis is mine
^ Statistics according to B-EAT

Anorexia: Disease or Lifestyle?

Monday’s Telegraph newspaper marked the beginning of Eating Disorders Awareness week with an article about ED websites: More specifically, ‘Pro Ana’ sites.  (For the uninitiated, these sites are sites set up to encourage those who want to starve themselves. They share tips and tricks about hiding food, fighting hunger, effective purging, dealing with interfering parents / loved ones and often sporting photographs of skeletal bodies to give ‘thinspiration’ to followers).I skimmed Sarah Rainey’s article , too tired of the topic to want to engage with the politics and the emotion held between the lines of the pro ana blogger, the parent of a (nother) very bright, talented ‘whole life ahead of her’ dead Anorexic and ED organisations. One thing however, leapt out at me.This:“Anorexia is a lifestyle, not a disease”.It’s something I’ve heard many times in various forms and generally from sources who, clearly, have no understanding of the pathological nature of Anorexia. Without wishing to state the obvious, I find the implications of the statement upsetting because it embodies the attitude that somehow, Anorexia is a choice one makes. For me, this is an absurd idea. However, as I have previously tried to explain (here), I think there are different types of Anorexia and it is possible that, for some people, devoting their time and energy to becoming extraordinarily thin, is a lifestyle choice, in much the same way that a total devotion to anything may lead to radical lifestyle choices. All well and good (excuse the irony), and perhaps in this instance, starvation is a choice… just another way of living. But, can a disease be a lifestyle? Unfortunately, what the article I read didn’t point out, was that if this is a choice, it can’t be Anorexia or Bulimia or EDNOS. A disease, by its very definition and nature, isn’t a choice… Nobody CHOOSES to suffer with a disease. True, it can appear that way with some mental illness’, but nobody makes a choice to become sick. People don’t choose to die from malnutrition any more than they don’t choose to develop leukaemia. And this is where it all becomes very complex… because CHOICE plays a large part in the distortions that characterise this illness so vividly. A person suffering with Anorexia, believes that they have CONTROL of their weight and their body. They believe in the choice element. They believe that they are IN CONTROL. In fact, the extreme opposite is true. It is the disease that controls them and the disease which distorts their thinking. The disease ROBS the Anorexic of choice. It STEALS their capacity for logical thought about their weight. It DILUTES the ability to rationalise their fear of weight gain and to recognise that they are no longer in control of their mind. I understand the Pro-Ana blogger’s statement in the light of those who wish to diet, but “choosing an Anorexic lifestyle” is an oxymoron. One last point, and perhaps the most important: Luckily, there IS some element of choice.It is reserved for those who are in the grip of an Eating Disorder (or addiction, I think) and it is this: The sufferer may choose to remain in the half life that it forces on them. They may CHOOSE to give up the fight for wellness. Just as somebody who is diseased with cancer may choose to stop treatment, an Anorexic or Bulimic can CHOOSE not to fight the illness. RECOVERY or NOT is the choice. A lifestyle of recovery is agony, but a lifestyle led by the choice NOT TO recover, is to submit to the power wielded by this dreadful disease. 

Benefits - As IF.

      6 years ago I was a valued colleague. 
I had a good career, bright prospects and a good wage. 
I had a pension. Good holidays. 
I was contributing to society. 
I was teaching English and social skills to young, disaffected teenagers who were so often in need of firm boundaries; steady, fair reliable adults who could help to rebuild some of the trust and respect that they lacked. 
I was passionate, respected, consulted. 

      How is it then, that 6 years on, this same young woman sits with her support worker, filling in a form for Disability Living Allowance?
How did she go from the shiny, high gloss teacher to the redundant, matt -finish patient?

      The change was staged, steady. I was stripped, planed, sanded and my identity fell away... disintegrated, replaced by the illness...  
Suddenly, I'm not 'a Teacher' anymore. ("Hi! I'm a teacher too! What do you teach? Me? Oh I do Key Stage 3 and 4 English"). 
Not anymore. 
Now I'm: 'an Anorexic'. 

      I  don't have an income. I've lost my career. I don't have holidays.
Days slip past me. I am overwhelmed by small things. Most days end without ceremony. I have achieved nothing. Thousands of hours and nothing to show. 

      Overwhelmed by the sheer magnitude of what this section of the form seemed to demand, I left it blank.
And so my Support Worker wrote a few clinical / medical comments.

My claim for benefit will be submitted today. 

But really...

...benefits..? 

I'm trying so hard to see anything that would justify the use that word.

Counting Calories

You can spot them in a supermarket if you know what you're looking for.

Most obvious, are the tiny ones, well wrapped but with tell tale stork legs rooting them to the floor.
They stand close to the shelf, elbows tucked in, head down, clutching a tin.

They are looking at the nutritional information, specifically at how many kcals per 100g. They pick another tin and do the same. If there was a way of x-raying their mind, you'd see vast amounts of data being computed. Complex comparison tables charting an array of brands, computing calories, converting kilojoules, weight for weight, fat content, fibre.
If they weren't already, most anorexics get good at maths at some point in the descent into hell.

Less recognisable, are the less skinny ones, but don't be fooled... They may have just come out of a treatment facility (goodness, that sounds American!). They may have an Eating Disorder which falls into the mysterious EDNOS category. Not all ED patients are obvious, but an informed eye can spot them a mile off.

One of the

very difficult things about trying to recover from an Eating Disorder, be it Anorexia, Bulimia or something less definable, is that once you know the calorific content of a foodstuff, you can't just 'unknow' it. It's an unfortunate byproduct of many people's illness that they have a head filled with numbers which will, presumably, stay with them forever. After all, knowing the amount of calories in a slice of Warburtons Wholemeal Bread, being able to add up a total when including a medium sized egg, and knowing the amount you're ingesting when you scrape out half a pot of Ski Strawberry Yoghurt, is just as essential as knowing your pin number.

You are not going to forget.
Which, in fairness, just adds to the agony of attempting recovery. 
This morning, deciding on a mid morning snack, was ridiculous. Almost laughable.

Imagine.

I'm hungry. My weight has dropped a lot. I know I must try to up my game.

Snack. Hmm...

 I want chocolate with my coffee, but I know the yoghurt coated fruit snack has 70 less calories than the packet of chocolate... and, it's healthier..!(probably not , but hey... everyone falls for the gimmicky health advertising, right?)

At this stage, the inside workings of my mind look a little like a fantastical fight from a Harry Potter film. Numbers are darting about; variously sized and coloured digits streaking through darkness, pressing their shapes into the soft blackness of your retina. 

"What if I halved that, added that..? Had 2 of those for the 1 of those? This is the equivalent to that... Hmmm... It's still over a 100 calories.
Great".


What do I end up with?
A half packet of salted popcorn.

I know I've had 40 calories.
(And before you feel compelled to tell me, I KNOW the info on these things is only approximate and there may be a 70% margin either way... but something is better than nothing.) Which is a mantra I need to double up on... 
(Irony noted)

Going... Down?

Okay...Title only meaningful to those who are familiar with the old Aerosmith track, 'Love in An Elevator', a good but vastly overplayed track (at one time). My frustration with my one time favourite band has increased as the teenage, rock-chick-love has lessened; all because they sold out to the soft rock market with dribbly anthems like 'Don't Wanna Miss A Thing'.
Apologies. My intentions to write about 'recovery' have been twisted into a rant about my old musical idols.

(Aside) It occurs to me as I apologise, that actually, Steve Tyler and Joe Perry are a long way from being completely irrelevant links to the subject in hand. Both singers have grappled and battled with serious alcohol and heroin addictions. Both know the agonies that come with fighting to be free from that which has possession of your mind.

Addiction comes in so many forms and is something so closely related to the topic of Eating Disorders that it is worthy of some careful thought.
Now however, my mind is too tired to begin debating the fine lines and the overlaps. I regularly feel the urge to write some more informative pieces about Anorexia and Mental Health here but every time I sit down to write, the words sort of ebb away from my (cognitively impaired) mind. 

That's right. 
"Cognitively Impaired". 
The term, used by the experts, to explain the condition of a mind weakened by the effects of malnutrition. 
It makes me wince to accept that this is my current state and yet, all my Anorexic protestations, the frantic scrabbling to deny truth, dwindle in the face of plain, starkly real figures. 
The scales don't lie, although, typically, in the mind of someone suffering with an Eating Disorder, they are incorrect. Not day upon day upon day they're not. 
I'm following that bloody line of decline, and I KNOW it... It's as though I am rendered completely helpless by the power of the Anorexia. 
My daylight head says, 'C'mon! Get a grip! You have to find the strength, the power, to beat this';  In the lonely darkness of the restless night, the more sinsiter voice, 'You'll be lucky if you wake up to see a new day. Your internal organs are tired. Your heart is weak'. 

A young lady who I was an inpatient with for six months, died last week. 
Multiple Organ Failure caused by a long term Eating Disorder.
She was strong, lively, witty, intelligent. 
Her death rocked the ED community I 'served time' with. 

What a TRAGIC WASTE. 

At the same time, my best friend here in ___________  gave birth to a little girl. 
And so, the cycle of life and death continues. Everywhere today and tomorrow and for the rest of time, the mortality drum will continue, beating out it's rhythm on the lives it chooses. I get that. 
What I struggle to accept, is the slow suicide that this illness contributes to this pattern. It's so... horribly pointless. 
Life is to be lived, to the fullest. Jesus said that. And he is not to be argued with. 
Why then, am I, and so many beautiful, talented, young lives, subscribed and obligated to serve this hideous monster?

All answers on a postcard...

Alanis Eat Yer Heart Out

"Isn't it ironic"...

...Alanis appears to state rather than question, which is probably just as well given that her definition of 'irony' sometimes (some lines) seems to be a little dubious (at best).

Semantic inaccuracies aside, she has an incredible voice (and tons of attitude) but the reason why I quote h

er right now, is

that I hear that line playing in my mind as I contemplate posting that today, the mind - cloaking darkness that has more or less disabled me since Saturday, was shot through with a narrow laser beam somewhere high above me.

And I've been like a drowning body who, in the last swelling, slipping moments, finds an air hole in the thick ceiling of ice above.

I haven't even been to work.

Can you imagine? Because I can't.

Today I walked around Ikea buying plates and bowls and other pointless porcelain vessels.

I want to move to my own place.

And all the time the Alanis song was playing.

My ray of light beamed from the numbers on the scales.

Isn't it ironic.

The lower I go, the higher I get.

And, I'm walking around Ikea investing in a future that I am doing my damnedest to end before it has the chance to begin.

Now, Alanis?

THAT'S irony

Eye Of The Storm

Still,

in the corner

I curl

tight,

small,

unmoving

as the storm

whirs

and whips

my untucked feet.

My deaf ears,

closed to the winds.

My fists

clenched to fight

you who come close.

Still,

in the corner,

I curl

small

and

smaller

and

smaller

still.

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.

Filing

To what does my therapist repeatedly liken me?
A mysterious, multi faceted prism bending and reflecting light? A valuable, finely tuned instrument?
Um...
No.
Apparently I'm a filing cabinet...
One of those rather grim, storm grey, functional filing cabinets that squats inoffensively in a corner under a desk.

My bottom drawer (or is it the top?) is in perfect order. Little coloured, plastic tabs labelling each and every category and subsection. Each tab written in perfect, calligraphic, black font. Efficient, competent, quick minded and organised.
Put me in a situation and watch me compute actions and actions; reach into the tidy compartment and pull out the appropriate 'file'.
In stark contrast, my top drawer has all the marks of a desperate thief rifling through papers whilst footsteps approach the darkened office.
My therapist explained that it was as though all the papers in this drawer had been strewn on the floor. Moreover, the papers had been ripped into pieces and we may pick up a middle piece and find it has an end but no beginning... Or find an end but not be able to find the two upper pieces.

I wanted to explain that my last post came from my top drawer.
The 'secret' drawer that nobody really gets to see.

It's a chaotic drawer and I'm not sure that some of the fragments even exist anymore.
It's a drawer that has been locked for a long time and the rusted runners won't allow it to open easily, let alone fully.

I was in half a mind to 'disable comments' on this blog. It has been a battle to leave my honesty and my expression of the top drawer chaos. It is unfamiliar ground to allow the drawer to open even a fraction and when I began this blog, I didn't realise that blogging was such a 'relational' thing. I had no idea that people would be the least bit interested in a grey filing cabinet.

When I expressed the difficulty I had with allowing comments to my lovely blogfriend Gail, she wrote that she thought most of the comments I got here were very kind and caring... I don't know that she realised that this very truth is precisely why I find it so excruciating at times.

Kindness kills.
Careful.

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 - Anorexia.

I've been looking at some stuff to try to help me make sense of what is going on... I suppose in some ways I want to give a part of me a voice without having to go through the agony of trying to find the words.
I feel like I have spent a lifetime doing that in some respects. Music... I have spent my whole life looking for a song that will somehow sing me... There's no such thing of course.
"Write your own then", I hear you say. But, it's not like I haven't tried. It's just that words slip into obscurity when I try to gather them.

Anyway.


Anorexia.
There's not a lot I don't know about it.
I've sat and watched it devour my sister for over seventeen years.
I've watched it's grotesque form gnaw at her from the inside out and then superimpose itself onto her once beautiful body.
I've watched her scream into her bones as they become more and more hollow. Her shoulders, a branch from which the rest of her hangs.
I've seen her eyes sink deeper, the cage of bones around her cheeks protruding sharply, her chin just a point. I've watched her face become a skull, her skin stretched like canvas.
I've showered in the bath blocked by chunks of her broken hair.
I've cleaned my teeth in the washbasin blocked by the food she used to have to eat.
I've existed next to her tortured screaming and ranting. Her desperate sobbing. Her silent streaming tears.
I've watched her punching and kicking my parents as she has been dragged screaming into ambulances and cars to take her to hospital.
I've turned from her retching as she pulls out NG tubes and rips out cannula's.

I've watched her turn into someone I no longer know.
I have loved her as I thought I could never love anyone and I have hated her and longed to beat and bruise every inch of her fragile body.
And all this...
All this doesn't even begin to describe anything.

What I am left with however, is absolutely nothing.

I don't feel a thing for her.
Not a thing.
3 stone or 7, I don't feel anything... except maybe, a sort of brokenness somewhere too deep to mend.

So.
Given all this.
I should know better.
But apparently, I don't.

I started this post because I found an article I wanted to write about.
I wanted to explain something about myself that I feel is almost incomprehensible.
My sister is relevant but it is my own recent struggle I was going to write about.

Perhaps another time though.

I'll leave it at, 'there isn't much I don't know about anorexia'.
Just for now.

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.