Category: Human existence


My Dad and I have this discussion every now and then.  It’s silly and serious at the same time, as are some of the very best kinds of chat…

It begins when I tell him what an amazing person he is and how I think he’ll go straight to heaven (without passing Go, without collecting 200!)

He responds with typical humility, firmly assuring me that he is far from being the incredible person I see him as.

True to say, I’m biased but I continue anyway…

“… but Dad! You’re the kindest, most loving person I know… How can it be that you STILL feel as though you don’t love people enough?”

“It’s easy to love your family”,  he says, “even an evil person can look out for their own. It’s loving those we DON’T know that makes us saints”.

His eighty one years, the depth of his faith and his gentle, funny nature mean that I ponder his words long after he’s spoken them. They echo through my mind as I rip open the mystery parcel. A taped up cardboard box of beautiful gifts has interrupted the bleakness of another day in the hospital; a box sent halfway across the world by someone I don’t know, but who reads this blog and has intuited enough about my character to send presents that delight me.

I don’t take any kindness for granted, but I have come to believe that kindness shown by a stranger is a very different kind of exchange, an experience that can’t be replicated or simulated in any other situation.  It’s this type of kindness, love, that is so often woven into classic tales: the mysterious being who appears at the right time; the unknown benefactor in Dickensian stories; the God like figure in folk tales.

Why the inclusion of these characters and their acts of kindness?

Because they move us, they warm us, they melt us.

More than this, the kindness of a stranger possesses  a unique power: that of transformation.  Hence age old stories of Matthew the tax collector, of Dickens’ Ebenezer Scrooge, Pollyanna, Jean Valijean in Les Mis… Literature is littered with bad – characters – turned – good  by an act of kindness, because people love to have their view of human nature restored. How often do we hear someone sigh happily as they use that very phrase? How many times do people use the term ‘heart warming’ to describe these kind of scenarios?

Perhaps it’s the simplest answer to some of the world’s toughest problems. Perhaps the kindness of a stranger can combat some of the hardness and cynicism that grows in secret places; seeds of despair and cynicism sown and planted almost without us noticing. Maybe if we all vowed to impact at least one stranger’s life within our own time here on earth, the world may seem a different place to those who threaten it most.

Guilty of my very own brand of cynicism, sentimentality isn’t a trait I’m most likely to be associated with. The mysterious box of gifts though, was like a torch beam cutting the darkness.

Valorie. Thank you so so much for bringing spring to my hospital room. Thank you for such thoughtfulness and generosity. You act of kindness inspires me to pay it forward… If you’re reading, please know how touched I was by it all.

I wear the earrings even as I type, a cup of Tanzanian coffee next to me.
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There can’t be many instances where your loved ones raise a glass to toast your  mental torment but then again. there probably aren’t that many cases where eating a beef sandwich is an achievement worthy of celebration.

Perhaps those in the loop will actually understand the bizarre situation I’m writing about, but if you’re a ‘normal’ person, you might struggle.

Wait..! Did I just use the term ‘normal’?

I can hear some of the cries of protest. “…But there’s NO SUCH THING AS NORMAL…” Protestations jet from all corners of the philosophical, semantic and *wince* pedantic realm. No such thing. Everyone’s weird. Everyone’s normal. There IS no normal.

But there IS. There IS in the tangled, screwed up world of we Eating Disorder folk. If you disagree, you might want to read on because I’m going to tell you about what normal is, often by arguing the case for what it’s not.  (If that goes over your head, don’t waste mental energy on it. Reading on will give you a clearer idea.)

“Normal” is our friends who happily pick a sandwich in a deli without an onslaught of mathematical conundrums running riot in their brain. “Normal” can actually have ANY kind of drink they like without even a whisper of a ‘value for calories’ haunting their thoughts.

Normal can choose food to satisfy their taste buds and not to keep them as light as possible. Normal doesn’t even think twice about adding one extra raspberry to their (carefully weighed) bowl of lowest calorie cereal.

Normal doesn’t consider black coffee a ‘snack’ or stir-fry an indulgent meal. It wouldn’t cast a suspicious eye over the size of a tangerine, or swear that an apple has the potential to be fattening. Nor would it question the amount of calories / fat / carbohydrate in a carrot. It wouldn’t distrust the carefully stated amounts of these ‘anorexic-life-threatening’ printed on each product, or regard cauliflower as an enemy to be avoided at all costs.

You see..?

Normal doesn’t experience eating as a trigger for a sort of inexplicably acute mental pain. It doesn’t really begin to understand that ‘food’ is merely an assortment of numbers. (Despite our health conscious Food Standards people’s best efforts!) It doesn’t ‘get’ that a carrot is 35, a berry, 2 and if you throw in a spoonful of yoghurt you’ve exceeded the limit. (Scrape half away, then share some with the sink…)

Normal might be conscious of the numbers, but it’s not ruled by them. It doesn’t carefully bite each Malteser in half to ensure it has exactly half the stated amount. It doesn’t have to ignore the body’s cries for rest in order to complete the requisite amount of high intensive ‘burn off’ exercises before or after a calculated amount of food.

Normal doesn’t FEEL fat growing ON them if they eat something frightening. It doesn’t feel the rush of shame and disgust if they slip up and allow too much food to enter the forbidding mouth. It won’t suffer an onslaught of blind fear, the compulsion to induce vomiting or crapping or even the wild urge to cut fat OFF any given part of themselves.

I realise there are degrees of ‘normal’; a continuum even. This illness, any Eating Disorder, defies all concept of normality and in doing so, isolates sufferers in a sadistic and divisive way.

As someone who, for almost thirty years, was pretty ‘normal’ about food, I feel somewhat justified, perhaps even qualified, to attempt to explain that there really IS such a thing as ‘normal’ in the world I, and so many others, inhabit.

The next nine years of my life have literally been stolen from me.

I find it incomprehensible that for almost three decades, I could actually EAT a meal without attaching any feelings or significance to the food at all. Nor can I recall how I might have RELISHED the chance to actually SIT DOWN and watch a whole film without the raging impulse to burn off calories, the torture of that insane edict.

It’s too hard to properly explain how Anorexia has unpicked and rewoven my ‘normality’, but I hope, in some small way, I’ve conveyed the havoc it wrecks upon its victims, some too young to ever have experienced the luxury and freedom of normality

I hope these descriptions may bring some small solace to those who don’t feel understood and information for those who want to understand.

There’s no such thing as normal, but there is ‘abnormal’, and this illness is one example of that.

Someday, I hope to eat again, with the freedom of that first part of my life.

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Doesn’t do a lot for my point, but I do love a bit of Edward Monkton…

 

 

 

 

 

 

 

Redefining ‘Normal’

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I don’t really know who Lamott is, or where hope becomes important in her story, but once upon a time I copied this out and popped it in a back pocket where it remained until I fished it out some months ago.

I don’t have too much to say, except that to me, hope is one hell of a risk. It seems to require me to swim against the tide of mental reasoning and learning; perhaps in different seas altogether.

I admit, I find it exhausting. I think that I find it easier to throw my hands up in the air and quit, than to hang on to the cliff edge with torn up fingernails.  Funny that Hope is so often thought to be light, so feathery and fragile, so beautiful, so pure.  Stark contrast then, that the hope in me is a ripped, time worn, tear stained,  piece of paper pulled out of my old jeans’ pocket.

Hope is a risk. It might fail me. It might demand too much, grow too big, get too brave. It might start to grow secretly, against my own will…

… but if I don’t have any, my life will always look the same. The world will always look the same. My body will always feel the same.

Hope is a harbinger of change. Without it, we stop swimming altogether. The only alternative to swimming against the tide is to stand in stagnant pools, or to drown.

I don’t intend to do either.

Re the quotation that I carried round so long;  I’m still here in hospital (I showed up). I’m eating (trying to do the right thing).  I’m waiting and watching and working.

I’m just hoping to see the sun rise as I fight the tide.

It was clear from an early age that I wasn’t ever going to make a scientist. Certainly, the most memorable things from my physics lessons involved throwing wet paper towels at each other, and the time when I fell off my stool because Leon Kavanagh pushed me too hard.

It’s really Mr Thomas that I blame for my ignorance on the topic of magnetic force. He had bad breath and liked to lean over your shoulder to illustrate his point. Awful as it is to conform to the stereotype of the bored teenager, surely it’s even more awful to conform to that of the fairly greasy, and very definitely sleazy, Physics teacher!  All this to excuse myself for what follows; a very unscientific reference to a very scientific process.

It’s possible that if you belong to a certain generation, you’ll have had one of those arched magnets lying around the garage. You know the ones… a U – shaped piece of metal coated, in part, with bright red plastic.bare magnet

I loved ours. My dad’s. As a kid, I’d be content to mess about with it, trying to get to that point where I could move the screws / nails without the magnet actually picking them up. You know THAT point? What was it that was SO satisfying about THAT point?!

Anyway. The magnet is something I often refer to when I’m attempting to explain something about the nature of Anorexia and, moreover, the PURPOSE that it serves. Because it does HAVE a purpose. And just because there may be no apparent reason why a person is dogged with this illness, doesn’t mean that it’s a completely random occurrence.

Although I am writing mainly about Anorexia Nervosa, sufferers with other eating disorders will identify with the fact that before they even had a hint of their illness, they were chronically anxious. In my own experience, I had suffered with almost crippling anxiety and panic attacks for many years before Anorexia hijacked my brain. I have heard so many other patients refer to their inability to manage everyday anxieties, stories of phobias, extreme panic, fear.

Whether it was recognised in childhood or not, I would hazard a guess that it is actually an anxiety disorder, generalised or specific, that underpins Anorexia.

And so, a sort of Anorexic blueprint, is born.

The child who is very frightened about being left alone to survive in the playground; the one who studies to be the best and so is the best and then lives in fear of not being able to keep being the best; the person at work who is held up as being exemplary, and is terrified of being ‘found out’ because he or she has no self belief and feels like a fraud. Anxiety. Anxiety. Anxiety.

You may be reading this and identifying the fact that this is something we ALL experience. Perhaps it is… but everybody manages their fears in different ways, and Anorexia, whilst still being a severe and enduring illness, often begins as a means for managing fear.

Imagine a tabletop covered in iron filings. Horrible little bits of grey, scattered all over  Try to scoop them up and they go everywhere…

Now imagine that each of the filings is a different ‘free floating’ fear.iron_filings copy

So many different things to cope with, too many. It’s all very out of control and you can’t rest because you’re in a constant state of hyper alertness; a state where heightened anxiety is natural because everything, EVERYTHING feels like a bit like a threat… a challenge… The filings don’t shift, if anything, they seem to multiply.

Anorexia is a magnet.

And it’s bigger than anyfilings drawn to magnetthing else.

And it’s really powerful.

Due to a force that I should at least have some understanding of (but don’t because I didn’t bother in my Physics lessons) the filings are immediately drawn to it as it hovers over the tabletop, sucking up every little shred of metal.

It’s what Anorexia does. All the individual anxieties stick to it…. fuse with it… until, one day, they don’t really exist any more and all that’s left is the illness. One giant entity. One focus. One fear.

That of never being able to be thin enough.

Simple?

Yeah. About as simple as physics.

The hardest thing is the terrible realisation that you’re not holding the magnet any more and that it, in itself, is far, FAR stronger than you; As if somehow, cruelly, the incorporation of all those little grey shards, has strengthened the force that then turns on the sufferer him/herself and begins to diminish them.

 

 

 

 

 

 

 

 

spaghettiJust eat! It’s really that simple”

The well meaning eyes of family and friends cast along the frame of an ED sufferer; pupils travelling the ridges of the clavicle, the skeletal hands and down the birdlike legs.

Just say, I CAN do this

Just make up your mind that you’re GOING TO do it and then DO IT

Lots of ‘justs’. Lots of good suggestions. Lots of spilled frustrations.

So why isn’t it ‘that simple’?

Surely it’s not rocket science…

Well…. in actual fact, although it’s NOT about rockets, there is quite a lot of science involved; physiology to be precise.

When someone is well below a healthy weight, the list of psychological blocks to recovery may be a mile long. However, unbeknown to many, there are also many physiological reasons. Chemical and hormonal shifts in the brain that induce behaviours which can make it incredibly difficult to behave in a ‘normal’ way around food. Experts in the ED field will tell you that a full recovery isn’t possible until weight has been restored to the point where a patient’s BMI is between 20 and 25. In fact, many argue that it is ONLY when a patient reaches a safe, healthy weight (and so, BMI) that recovery can begin.

I agree.

One of the strongest pieces of supporting evidence we have for this idea comes from a ground breaking, wartime,  experiment into the effects of starvation, performed by Dr Ancel Keys.

In 1944, as war raged throughout the world, Keys recruited 36 young men (mostly conscientious objectors) all deemed to be at a peak of physical fitness and mentally / psychologically healthy.  Over a period of a year, he studied the behaviours and mind set of the men as he systematically cut their calorie intake and increased their levels of exercise . By the end of the ‘starvation phase’, the men had lost around a quarter of their body weight and their physical appearance was skeletal.

Photographs of the subjects reveal bodies not dissimilar to those who had suffered in concentration camps. Certainly, the men appeared to have been subject to a lifestyle which denied them of their most primal need; much like the self inflicted discipline exercised by those with Bulimia or Anorexia Nervosa.

For someone attempting to recover from an eating disorder, the most pertinent revelations of ‘The Minnesota Experiment’ lie in the fascinating changes in behaviour displayed by Keys’ subjects. Behaviours and attitudes practised in secret, cloaked in a horrible sense of shame, perhaps feared by the sufferer to be so ‘odd’, so far from ‘normal’ that nobody should ever find out… Behaviour that actually, The Minnesota Experiment, proved to be a direct result of the human body being starved and therefore, some way beyond the sufferer’s control.

Keys documents that the more the men starved, the more overwhelming was their obsession with food. Food became an absolute priority while the rest of the world, family, politics, opinions, religion etc, all faded into obscurity.  The men were restless, their minds unconsciously forcing their bodies to forage for food, allowing little sleep as the need for nutrition overrode all other basic needs.

Interestingly, all the men developed ‘abnormal’ eating patterns, becoming ritualistic, taking up to two hours to eat a meal, cutting food into tiny pieces,  mixing food with liquid to make more of it and hoarding food so they could take it back to their bunks and graze on it. Moreover, the thinner the men became, the less able they were to judge their size as being thin or underweight. A few of them even went so far as to express thoughts that others were too fat. Spot the quandary of an Anorexic.

There were many, many physical effects, most of which an Anorexic will experience as par for the course, but in order to explain why it’s so damn hard to ‘just eat’, I wanted to draw from the physiological findings of Keys’ experiment. The state of semi starvation, of extreme self denial, is in itself, a trap. Being below a healthy BMI produces its own set of barriers to eating, making the initial ‘pre recovery / weight restoration’ phase about as difficult as it could be.

It’s really not as simple as it might seem.

Certainly, during the period of re-feeding, the men ate happily (obviously not suffering from an ED) but my point is that whilst starving, the men underwent such changes to the chemical balances in the brain, that food became an absolute obsession and habits previously unheard of, became commonplace.

When an Anorexic tries to recover, they not only battle the mental blocks that the illness creates, they also have strange, unseen physiological blocks.

(Another terrible hidden suspicion of The Anorexic, that their appetites will become insatiable once they begin to refeed, is also borne out in Keys’ evidence, producing yet another barrier).

I could go on and on about this great study in starvation, but it’s all for another post. What I want to convey is that, despite all appearances, recovery is never as straightforward as ‘just eating’. Refeeding, within itself, is fraught with unconscious physiological blocks and hurdles.

For me, personally, despite this knowledge, and armed as I am, I still stand on the wire, looking at that vast expanse that is ‘no man’s land’, weighing up the risk, trying to see where the mines are set, where the searchlight falls.

It’s been ten years raging, this war.

gripping barbed wireI still want to fight…

…but the real enemy

lies in the woodland

on the horizon

I still need to make it to.

THAT’s the pathology of an eating disorder.

THAT’S the physiology of starvation.

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

I’m not going to write about all the reasons why I was the least likely host site for Anorexia to burrow into. You’ll just have to trust me when I tell you that nobody could believe it, me included.

However, just ONE of the reasons why I am an unlikely candidate, is the fact that I have always been regarded as being “a block of sense”.

It’s true, I have suffered with lifelong anxiety, something which has only really been acknowledged in more recent years, but as a general rule, certain phobias aside, I really am an incredibly pragmatic, diplomatic, rational thinker.

I don’t mean that I can do all the lateral thinking puzzles that MENSA books torment people with. I don’t have an endless chain of resolved Rubik’s Cubes.  And I don’t sit down everyday to complete the Times Cryptic Crossword, just for kicks.2000px-Rubik's_cube.svg

No.

However, I DO have a high proportion of common sense and very level head.

I don’t mean to blow my own trumpet, and again, you’ll have to trust me when I say that arrogance isn’t something that has been a strong feature of mine, but at the end of a long chat last week, a struggling friend looked at me quizzically and asked, “how did you get to be so wise?”.

At the time I shrugged it off, but later I heard it echo and I wondered… How come I have all this wisdom, and yet, can’t apply it to myself. How is it that I can see lights in other people’s tunnels, yet my own is the darkest shade of black? How can I have such insight into the pain carried by others, while I stumble in blind circles? Why can I feel what they feel, but not what I feel? How is it that people are consistently impressed with my intellect, my ‘wisdom’, when all the while,  my Anorexia is behind the scenes calling the shots.

It was my friend’s question that spurred me to write this post, because I want to illustrate something of the devious nature of an Eating Disorder. I’ve heard it suggested that sufferers of this illness choose to be thin in a ‘supermodel wannabe’ sense; that it’s vanity. I’m here to set the record straight. On the contrary, my illness makes me uglier, far less attractive.

I’m writing to explain that I CAN’T EXPLAIN how it is that my rational mind understands that I can’t be fat. It sees the figures on the scales at weekly weigh-ins at the unit. It hears the calculation of my (stupidly low) Body Mass Index, and yet, the Anorexia wraps itself round it all, and perverts it, twists it and denies it.

Lots of people ask the question, ‘do Anorexic’s see themselves as ‘fat’? It’s a massive (no pun intended) concern for those seeking understanding.

I know I’m not fat. Many seasoned Anorexics KNOW this on some level. I do however, feel that I look ‘normal’. I don’t see ‘underweight’. I don’t EXPERIENCE ‘thinness’.

So, I’m shocked beyond belief at a picture my dad takes of me.Picture altered to make background less recognisable.

I can’t recognise the scrawny person in it. She can’t be me. surely?

This is what I want to purvey. This is what I want to educate people about, because I think it’s the hardest aspect for those who watch, to understand. A person may have an IQ higher than the year they were born, but their perception of themselves can be as skewed as the government data on employment. Even with this photo, and the fact that I’ve lost weight since. I still cannot compute that I really look like that.

Such is the complete distortion of an otherwise rational mind. It’s one thing to know something in your rational mind, it’s another to experience it as ‘being real’. In this sense, I make the (somewhat controversial) assertion that Anorexia has an element which is akin to psychosis. This is where the illness becomes a mental health problem, rather than a ‘state of mind’.

 

 

wpid-imag1676_1.jpgA poet like Dickinson has the enviable ability to load a verse with meaning so deep and so heavy you wonder how such simple words can bear the weight.. Her gatherings of commonplace words so often made to shine by their careful ordering, carry a grief so weighty you wonder the words don’t crumble beneath the despair.

This simple little verse almost sags in the middle with the enormity of her existential reflection!

I wanted to put it out there because I think it’s something that every one of needs to have asked and explored. Not in a naval gazing way, more in a back-of-the-mind type of way.

Because I think it’s sometimes good to widen my frame of reference. To briefly place my life on the time / space continuum. It’s sometimes good to feel humbled by the stars. To put my pain and suffering in the context of world history.

And sometimes, it’s good to rethink the areas of my life I can control; and the areas that I can’t. Personally I find it useful to remember that life is short, and wanting control over something doesn’t grant me the right to it. More than that, I know that there are things WITHIN my power, that I need to take control of, rather than deny or disown.

THAT is the hard thing. That’s where Dickinson’s innocent thought is a smack in the face!