Category: Dying


animals-st-francis-2As a young girl, my conviction that I was able to communicate with animals, coupled with my parents’ point blank refusal to have anything other than a goldfish in the house, gave rise to my fantastical delusion that I was the living embodiment of a cross between Dr Doolittle and St Francis of Assisi.

Nowadays, despite still loving the idea of pets, the practicalities and the expense prevent it from becoming a reality.

So, I preface this post explaining that I’m not a real ‘animal person’. Not to be confused with someone who doesn’t care about animal cruelty. I do. Controversially though, I believe that human beings are of greater worth than animals (and find it endlessly sad that the NSPCC receives less donation money per year than the RSPCA) .

(I know. I know. There will be somebody somewhere wanting to spray paint the word ‘bullshit’ across my blog as I type this).

The reason I’m explaining my general attitude regarding animals is to provide some semblance of a context for what follows.

Yesterday  I was sitting on the sofa vaguely watching the early evening news while I threaded two tiny beads on a pair of metal findings. I rarely devote my complete concentration to the TV, and use that kind of ‘down time’  to make stuff; be it crochet, origami, knitting hats, scarves earrings, bracelets… whatever the current creative obsession affords.

Suddenly, a horrible bone splitting crash.

It had come from the large patio window at the end of the room.

Dusk falls darkly now that the October sun drops faster, and from a well lit room the opaque midnight blue outside seems blacker than it really is.  I went to the window, cupping my hands against it to erase reflection.

On her back, a female blackbird lay flapping, speckled breast skywards,  trying to right herself.  It was a heartbreaking sight, such a beautiful bird, so helpless and so shocked. It had happened so fast.

Instinctively, I scooped the bird into my hands and held her for a moment, felt her rapid heart, her tiny trembling. “Best left alone,” advised my companion. “They’ll very often pick themselves up and fly away when they’ve got past the shock”.

I set her down, right side up; draw away, the tip of my heels rolling forward to my toes.

female-red-winged-blackbirdThis evening, I am struck by my shocked response to her plight. My sudden immense pity for this little bird who, even if she could find flight, will never eat again. Her beak had clearly taken the impact of the smash, the glass sheet cruelly driving the top and bottom to twist in opposite directions. Never again will her meal be plucked from the ground with pincer precision. Never will the sharp beak meet to hold food for her young.

These twinges of sadness for my broken bird are suddenly shot through with irony. I realise that, for a decade, I have systematically denied my body the nourishment it requires in order to function in the way it is meant to.

Do I  pity for it?

Do I lament the months of deprivation? The semi starved state that results in hypoglycemia? amenorrhea? the inability to stay warm? a lower immunity? osteoporosis? reduced life expectancy? liver damage?  potential organ failure?

Why is it, that I am more upset about the broken bird than I am my breaking body?

I sound like my mother when she crosses into panic mode. And there aren’t any easy answers.

What I would say, is this.

An eating disorder pushes the sufferer to extremes that no sane minded person can conceive. It seems to contradict that which is instinctual: the drive to survive that ensures the continuation of the human species. Of course, the width of the gap between the urge to survive and the urge to starve depends on how deeply entrenched the eating disorder has become. I’d like to believe, that in its infancy, the illness may have been tempered, dare I say, hampered and arrested, by a glimpse into the future damage I would sustain. I’d like to believe that, because if that IS the case, then perhaps early warnings would make a difference to someone.

What I know is that part of the pathology of Eating Disorders, is that they can  somehow usurp the sufferer’s natural born instinct for self preservation. Anorexia hijacked mine to the point where my natural response to the idea of my body being ‘well’ is, at best, indifference and at worst, revulsion. In the topsy turvey world of Eating Disorders, many sufferers equate starvation with success.

Back in the natural world, nobody wants to fail. Failure is B A D.

This idea carries over into the world of ED. What doesn’t follow, is the notion that somehow failure is death. Anorexia screams that ‘wellness’ is weakness, health is self indulgent. Being healthy means being a ‘failed Anorexic’.

I know it sounds crazy, and it doesn’t apply to every person who has an Eating Disorder. If you have a loved one suffering, it’s worth a try to gently ask them about the contradictions between the ‘well’ part of them and the ‘ill’ part. Go easy though. They may not be aware of it or they may not experience it this way.

Personally, I’m trying hard to re-program my mashed up mind, so that I can go back to thinking about health and wellness in natural world terms, rather than the conditions set by Anorexia.

The little bird wasn’t there when I checked again. She has somehow flown away. I hope she will not starve.

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For once, I am going to exercise some discipline and force my raging, anorexic mind and (consequently) my restless, driven body to be still, while I sit here and type a post on my blog.

It’s something that I have been avoiding for a while, the reason born of a desire for this blog to be one that inspires others with eating disorders, and informs those who seek to understand more about the illness.

I can’t accurately describe my resentment towards the disparity between my healthy, passionate heart and my sad, bony frame. I hate the fact that I am desperate to encourage your suffering friend / sister / self, to offer hope and triumph,  whilst my own body becomes less and less and my own story one of failure. I long to prise the illness away from others yet I am riddled through to my marrow.

It’s disheartening. I always said I could write a comprehensive guide to Anorexia but still die of it.

It sounds as if I am giving in..

Don’t be fooled. I will never truly abandon the fight. I am certain that somewhere, albeit amazing at Hide and Seek, somewhere,  I still hold a small seed of hope.

I’m posting this because despite the horrible discrepancies I write of, my determination to avoid hypocrisy demands that I am honest about my own journey. That means admitting that I can’t find a way out; admitting that whilst I have the passion to educate the uninitiated and to offer hope to the hopeless; I can’t really do that until I have battled and won. It’s no good my standing, almost dead on my feet, whilst I preach recovery and restoration.

20170228_162610-02.jpeg

Do as I say, not as I do… The familiar face of Anorexic hypocrisy!

I am in a dangerous place, with a life threatening BMI and the illness is wrecking havoc. The shortage of beds on a national scale mean that I haven’t yet been put into hospital, but this is what my clinician is waiting for. She thinks it’s the only way ahead right now.

Determined to continue the trek, I have temporarily set up camp in the desert (not to be confused with the similarly spelled ‘dessert’ – Delight at irony still as prominent as ever). My arid landscape affords a pathetic diet, my feet are too tired to walk much further and, some of the time, I have my head in the sand. There are occasions though, where I can look around me and take stock of these hostile surroundings, and perhaps accept that I may need to be removed from here until I’m stronger again. There are also occasions where, if I squint at the burning horizon, I imagine a glimpse of water, of greenery.

I’ll let you know whether or not it’s anything more than a mirage.

For now, let’s try to hope

Here we are again. Supermarket aisles cram-full of anxious shoppers; shelves a-sparkle with opulently – packaged festive treats and the air space crowded with the blaring wish that It Could Be Christmas Everyday. I sound like  a humbug from the start but I’m not, I’m a struggling Anorexic.

Love it or hate it, Christmas is a truly mixed affair for most.

Yes the shininess and magic, the warmth of the hearth, and the gifts and the glitter and the glitz.

But oh! the bickering, the sadness, the missing and the grief filled, the stress and the gluttony abound!

The pressures of a Westernised Christmas seem to begin earlier and grow faster every single year! Those beautifully designed cards that gave you a little tummyglow when you picked them up in Marks a few weeks back, you’ve got to write them all and get them in the post, a new deadline you HAVE to meet. That adorable decoration that you chose in a magic moment, it needs hanging and then housing…

I’m not trying to depress anyone although you’d be forgiven for thinking it.  I’m just presenting the case that Christmas can really be, “the best of times AND the worst of times” for all of us.

Christmas with Anorexia then, is even more polarised.

The fevered chaos of Anorexia defies the norm on any other calender date but come Christmas…. well… it runs a temperature off the gauge.

I know because even as I type, I’m slightly delirious: my head swollen with seasonal dread, my hands shaking with unsated desire.

As for most people suffering with an eating disorder, Christmas loses most of its ‘proper’ meaning amidst the intolerable warring surge of temptation and terror. Some houses are literally, “choc full”.  It’s so much about FOOD… and not just any old food.. Oh no! Gone are the 11 months of smug self control; of Deliciously Ella and all the high protein, ‘clean eating’.  Not a sniff of the spiralised substitutions and berry laden breakfasts  In its place, adverts parade gastronomic delights,  luxury foodstuff dressed in shiny, unapologetic full fat robes; mouth wateringly glistening with seductive spice and the promise of satiety. For those living with anorexia, it’s like pouring bottled water over your head in front of a dying child in an arid land.

My Anorexic head aches all the more as the chocolates, cheese and port pass me by. I pick up a sausage and hold it near my mouth but my teeth are set like a portcullis and my mouth has turned to stone.

It’s a popular misconception that Anorexics don’t LIKE food, don’t LIKE eating. I can see why people might think this. After all, we don’t tend to tuck in to… well… anything much. Instead, we politely refuse dinners, the offer of a crisp, the chance to have a snack.

(Note: My ‘we’ is a wardrobe behind which my vulnerable ‘I’, hovers uncomfortably).

To help the uninitiated comprehend a little, I often liken Anorexia to a top secret agent who is holding a loved one to ransom. The agent is using inhumane methods to extract information. Most of us would cave in, I suspect. It would be too much to bear to see your nearest and dearest tortured. With the eating disorder as tormentor though, the one who holds the intel is utterly determined to remain silent, rendering the captive a martyr for the cause.

Picture the torture, sleep deprivation, water torture, perhaps a continuous brainbashing, Pinter style.

Starved to the point of death, fine food is plated and placed JUST out of reach, fresh bread, hot soups, Christmas pudding…

A stolid refusal to talk doesn’t mean the starved prisoner doesn’t want the food, because WANT! WANT is an understatement! His demented mind is driven crazy by it! He craves it so much that even his bones scream out for it to coat them, cover them, heal them.

But no.

No; the captor will not allow it and the agent will not talk. Locked in fatal battle.

Meanwhile the quiet captive body is a table on which the negotiations are played out.

This describes my everyday for the past decade, but at Christmas it’s worse; more enduring, more desperate; because it’s not about the baby Jesus, a gift to humanity. I know it should be and thankfully,  my heart still swells a little at the thought. But even as the spirit swells, it meets that which tightly binds it, and so hurts all the more.

My chest hurts and I am afraid. I am afraid of my illness and I know thatCandle-calendar unlike the analogy I used,  I wouldn’t die a martyr. Far from it. Rather, a weak and wasted waif who just didn’t have the courage.

If you are living with an ED this Christmas my heart goes out to you. It’s such a hard time. Please know, whoever you are, you are not alone in the struggle.

 

 

 

You know “the grass is always greener…”?  It’s a common enough expression.

But when you think about it, it doesn’t make sense.

WHY green when it’s actually red?

The grass outside my window is no more green than Bob’s my uncle.

I can hear your confusion and I know what you’re thinking. You’re wondering where the hell this is going…  A puzzle. You’re frowning. Figuring out the point.

My point is this: that every time you look at that park, or that garden… you’re thinking that the grass is green. You’re SEEING it with your own eyes. ACTUALLY SEEING it.

So you believe it, right? You can see the grass is green so you believe it. Perhaps you’d even swear to it.

But you are, quite simply, wrong.

It’s not green.

You’re still frowning… or your lip has turned up slightly at the very edge…

What will it take to convince you that grass, as a natural product of this beautiful earth, is bright red ?

Stop and think. Just for a few seconds. What would it take?

Because that’s what everyone else sees.

Everyone else knows it’s red.

 

Have they just been agreeing with you?!

Going along with you… Not daring to challenge your view.

Nice one.

That’d be why you still believe it’s green.

 

I know and understand that you THINK this is madness. I know you SEE green… But it’s red.

FACT: Everyone else knows and sees red. You alone see it as that bright green colour.

red-grass-

Stay with me. I’m trying to make sense (despite all evidence to the contrary).

It can be argued that a certain degree of body dysmorphia is part of the human condition.

However, whilst for many of us the distortions in our perceptions are not significant enough to cause distress, it’s very difficult to gauge just how accurate our perceptions are, particularly when they involve our appearance. Hence, a person may grow up with a mole on their cheek and barely see it, whilst another with the same mark, may grow up feeling ACUTELY aware, paranoid even, that it’s all anybody notices. Certainly it may be all THEY themselves notice.

Although each case is different, Anorexia and Bulimia often incur constantly shifting distortions in the sufferers perceptions of their body. the extent of this may depend on the individual’s mood, the amount that they’ve had to drink, the whispering voice of their illness, or how full / empty they feel at any given moment. It doesn’t appear to matter whether the ill person is a  tortured artist or a brilliant scientist, the degree to which they are susceptible to absolutely absurd thoughts about food and the body’s relationship to it, remains the same.

For example, as a level headed and rational being, I know that I CAN’T be big in any way because the measurements, weights, body mass I am faced with are completely accurate. The ratio is too low for my body to be fat; too low for my body to be healthy.  The figures are scattered on the green grassy earth.

As a sufferer though, I look in the mirror and that grass is DEFINITELY RED. I can SEE it. DAMN IT! IT’S THERE IN FRONT OF MY EYES

AND YOU’RE STILLSTILL trying to tell me it’s green!

I’m fine! There’s nothing wrong with me! I look normal… healthy.

Some days, my arms look chubby… and my thighs often look massive towards the end of each day… but generally, I look perfectly normal.


Arguing with an Anorexic can be hugely upsetting, incredibly perplexing and downright frustrating. You see one thing, they see another.

Families in particular will suffer the agony of watching their loved one deny the truth; a blank refusal to hear the other side of the story. It’s painful to be stonewalled or to have your words hurled back at you. Few can identify with the desperation and helplessness experienced by screaming at a skeleton whose rock solid belief is that they are ‘fat’ or ‘fine’. Not everyone can trace the ridges of the bone along the clavicle of a loved one who refuses to eat because they think they’ve got plenty of fat still to lose.

My message is convoluted. It’s a poor attempt to somehow explain the complex illusion / delusion experienced by the victim of an Eating Disorder like Anorexia.

I know many, many women who dislike parts of their body, or at least, are dissatisfied with particular aspects of their appearance. When someone develops an ED, that dissatisfaction, becomes a rigidly held belief which apparently robs them of a realistic view of themselves. Much like joining an extremist party or cult, Anorexia transforms the mind in such a way that makes reasoning with them, impossible and unrealistic.

Hopeless as this sounds, my final message is to anyone who is having to watch a loved one starve .

Don’t give up.

It can be heartbreaking and it’s often a long, tiring path, but if there’s one thing that will help to save them, it’s a quiet, pervasive message that it’s the ILLNESS that’s lying to them and not the rest of you. If you’re met with a brick wall, don’t employ a bulldozer. You’ll flatten the person rather than the illness.

Remember the quiet echo of the drip that splashes against a stone surface. Gentle but unswerving,  the message will sink in, and though they may always see a tinge of red, at least they will accept that, mostly, grass is green

water on stone

Loss – A Reaction

I have an ongoing relationship with Satire. A kind of 'well you can't choose your family' relationship. Which is fine, so long as I keep him to myself and chose not to share his perspective too often. Satire, I've learned, is best applied to matters of a political or sociological nature. Not really appropriate for matters of the heart and soul.
Trouble is, Satire is a quite indiscriminate... I can't shut him up.
And so, as I find myself explaining that I lost my friend last Tuesday, I inwardly cringe at the familiar voice that tells me how VERY careless I must have been, to actually LOSE a friend, in THIS day and age where mobile communication is EVERYWHERE.
Whilst my kin continues to emphasise the absurdity of a whole genre of 'death euphemisms', my listener is looking questioningly at me, poised to offer condolences, dewy eyed as I further explain the tragic circumstances of my friend's death.
And they were tragic. A sudden accident, and the young man who helped me through some really tough years of my life is gone.
Just like that. (I know... I know... I hear Tommy Cooper too)
The news broke over me just like canvas on a tent frame. All in a moment the world was muted and time passed unnoticed.
I stayed in the tent for a few days. The thoughts almost entirely about him and the family he leaves behind. I could hear the noise outside, the people's laughter, other news, frank discussions but none of it seemed relevant.

Sitting there, I think random thoughts.

  • First: how am I supposed to 'be'? - Is my reaction 'normal'? Do my meds keep me numb?
  • Second: How can the world just... carry on? Why doesn't everyone know?
  • Third: My grief isn't allowed because in the wake of the enormous loss his wife and children are facing, my own is so pathetic
  • Fourth: I live some way away. How do I support them? How can I help my god-daughter?
  • Fifth: Sadness and grief are not the same thing. Sadness is only one part of grief
  • How fast death can sweep life away. How precious life is while we have it
It's helpful to make this concrete. Writing it is easier than I thought.
This is the sort of post that might finish with one of those cloying one liners you see stitched on cushions and stencilled on laminate... Vintage schmaltz on distressed furniture.  I'm angry at death for being so cruel. My faith affords me the certainty that my friend is in a FAR better place, and it IS a small comfort. But my heart is definitely a little broken and as always with these things, Satire's hand ensures I go spiky above sorry.

 

Dear ___________,
agony1

It’s hard to  know where to be
gin because I cant remember where or when the beginning was.  What I DO know is that you’ve no idea how hard I’ve had to work just to keep things balanced.

I want you to stop and shut up and LISTEN.  I’m going to try to tell you about what you’ve done and what you’re STILL doing. It’s a hard thing. Bear with me.

Despite your attempts to poison me and to harm me, I fought to stay healthy. I cleaned your blood, carried it round, battled illnesses, healed up your wounds.

You crossed what had become a very blurry line around ten years ago.  Then the real brutality began. You fought me with systematic, dogged determination; tried to change me, control me, reshape me with the tools of death you fast learned to use.

The irony of the fact it began with a health kick hasn’t escaped me. When you cut out the cigarettes, I was overjoyed! Clean breathing at long last. I’d been clogging up with thick tar, and in some ways, I think I’d resigned myself to the blackness, and to the knowledge that it would continue to seep and creep, until it covered all my tender healthiness.

But you cracked it! And I began to work at cleaning it up, helped greatly by your exercise and your healthier lifestyle. It was so good for a while.

Up until you stopped feeding me.

At first I wasn’t worried. I don’t even know when I first noticed. Those workouts of yours grew progressively harder to sustain. When I began to flag, instead of the little rest I was used to, you pushed me all the harder. After sprinting half a mile, you’d ramp up the speed. For a while, I thought it was normal; y’know, a good technique for burning my fat and making muscle. I trusted that you knew your stuff. I figured you’d stop when I reached my optimum, and I worked so hard for you, did what YOU wanted. Stretched to the limit, I kept going, convinced you’d be satisfied with my performance.  It’s hard to acknowledge just how far you fell from my expectations and it’s quite impossible for me to understand.

Over time, you and I underwent a transformation that nobody, NOBODY could believe. I think it’s fair to say that it simply wasn’t a you that I recognised.

You were brutal.

Whispers of encouragement became barked orders as coach turned to tyrant. I began to dread you.

Your lack of mercy started to take its toll as I struggled to balance your system.

I tried to tell you. I couldn’t help but let you feel the impact of your cruelty. You can’t flog someone half to death and expect the scars not to show. I stopped biting my lip and started to shout, but you lashed me harder, your determination a steel whip, your mission a desperate urge to keep control.

And all this talk of exercise is perhaps an avoidance of the most painful point: that of starvation.

I struggle here.

The louder I cry, the harder you starve. The more I plead, the more you withhold. If I let myself think of food, you give me less, and yet, I’m so hungry, I can’t think of anything BUT.

You’re killing me.

It’s not rocket science. If you don’t take care of something, it’s going to fall apart.  I’m SO tired of having to hold you up. You demand so much of me but give so little; a cruel rider lashing at his horse, numb to the pain of its seared flank; numb to the deep ache streaming down it’s legs, for all that matters is the win and the blinkers of victory blot out the damage.

If I was a separate being, you’d be done for abuse. The cruelty is almost intolerable. You tease me with the broken edges of foods that I crave. You tell me I can have it, then, just as fast, tell me I can’t. I’m starving and you lead me to the fridge fskeleton appleull of food that I’m not allowed to eat. Like an object of worship, you kneel in front of the full shelves, and as I cry that it’s nourishment you only see numbers.  For food has become a mass of calculations that stream through this brain, tangled wit
h the inevitable bargaining script of ifs and buts and onlys… And all the while, my mouth drools.

You’re breaking me. My bones are dry and brittle. Osteoporosis casts shadows on my hips and my spine is wearing thin. I can’t remember how many years since I bore the ache of fertility. This womb dry and cold, no longer fit to feel the moisture of tiny breath.

Every step is painful as bone grinds on stone. Every step is my protest. And yet, you carry on, rising above the screaming soles, too frightened to stop. You run away from me, barely look at me, only glancing to check that your clothes cover your skin.

I am weary, made tired by your disdain. I am weary of being underfed, ignored, tempted, denied.

I am weary of being brought to the brink of health, and then being starved to the brink of death.

I am weary of daring to trust that I no longer have to hunt to survive, then being shot at when I rest.

I am weary of empty promises, of bearing the weight of your illness.

If you continue, we will both die in this civil war and nobody will ever know who won or who lost.

All of me will rot; but, you if you remain, will rise above the webs of half rotted reasons, above the dry dust of me

And it will all

seem

so

completely

senseless.

******************

I didn’t want to seem rude when my very lovely clinician suggested writing a letter to myself. I almost squinted with the effort of holding back on the eye roll, resisted the sideways pull of my lips.

Been there. Done that. Got T-shirts to clothe an army.

But. This was a bit different. Not a ‘ years from now thing. Not a letter to myself, but a letter FROM myself. More specifically, from my body.

I put it here to remind myself why I need to keep eating. I also put it here hoping that it might be helpful in some way, to someone else.

 

 

 

.

 

 

 

This week a young girl I was an inpatient with was cremated. A shockingly stark reminder of Anorexia’s power to take lives. It’s so easy to forget the facts. Eating Disorder charity BEAT are clear that “Anorexia has the highest mortality rate of any psychiatric disorder, from medical complications associated with the illness as well as suicide. Research has found that 20% of anorexia sufferers will die prematurely from their illness”.

Hard to deny the seriousness of this illness. Yet, it is so often misunderstood and misjudged.

Star Fall – for S & C

Same sky, different star

Eighteen years

fly fast

Moon behind the clouds August 2015

Moon behind the clouds
August 2015

Sometimes glimpsed

on clearer nights

your incandescence

burning bright

Other times,  faded,

harder to see,

a thin ship to sail

on the widest of seas

Sometimes the darkness

covered your face

but couldn’t extinguish

the core of your blaze.

Now, I search the sky

ravage constellations

cry

eyes blind, stream like rain

calling to see

your star again

I reach out

tear black canvas

fingers finding

vacant nucleus

this dark hole,

from which your star fell.

And I howl

at the heavens

And the heavens say to me:

Cry not

for those who fall

for stars who drop

don’t land at all

At once caught up

by beams of sun

the point at which

we’re all begun.

Drawn close to heat

and now they shine

with greater brightness

all the time.

Firefly ©2015