I have found it quite upsetting.

My online community has become as important to me, over the past year, as my “real life” friends. I have wanted, desperately, for them to share the next stage of my journey as they have been so important in me getting this far –

This post started out as a pulling apart of some of those fears that a sense of disconnection brings but it got railroaded by an overwhelming desire to say a big thank you to all the people who have been so wonderful and supportive of me online. After going round and round the real life / virtual life debate, I have given up trying to work out whether a line exists and analysing the risks of throwing it all out there – because my world is far richer if I extend the parameters and I, far stronger, thanks to the people I’ve met online.

So, this is a shout out to the people who stop by and visit my blog, and the comments that offer me a new perspective, and keep me moving forwards, and make me realise that I’m not trying to make sense of this on my own.

It’s a huge thank you to a wonderful Twitter community that has reminded me of how generous and caring and loving humans are; that has put up with the ups and downs of my tweeting, and helped me to find a sense of humour, and kept me inundated with a stream of fascinating and beautiful and inspiring stuff –

Isolation is one of the most devastating effects of an eating disorder. We need human connections, I think, like we need food and sleep and water and air. I’ve been getting back in touch with the world over the past few years and growing in leaps and bounds, but I’ve been surprised to find that the connections are as powerful and the relationships, as rewarding, when they start off online. I didn’t realise this when I started my blog. I didn’t realise quite how much I’d learn from people online, nor how important those connections would become –

They’ve grown my world and helped to change my life.

Thank you.

xx

p.s. I’ve brought a netbook and a spare wifi card.

It is a little hard to acknowledge these thoughts.

I’ve been digging around rather uncomfortably to see if I can find out what they mean…only I already know the answer. They mean that I have to stop pretending that I don’t care.

Over the years, I’ve picked up a particularly destructive little voice. It likes to tell me that I don’t care. “I don’t care what they think of me”; “I don’t care if they don’t like me”; “I don’t care what they say”. It is intimately entwined with the eating disorder; in fact, it is possibly the closest that the eating disorder comes to having its own voice.

The “I don’t care” voice has served a number of purposes. At first, I think it was a childish response to hurt or disappointment or anger: the kind of thing you say when you care too much. Later, it got a bit twisted, and the eating disorder commandeered it to pass through whichever behaviours it wanted me to act out. “I don’t care what people think” (if I am walking through the streets bingeing); “I don’t care if people stare at me” (because it looks like I’m going to collapse); “I don’t care if I am on my own” (because the eating disorder is more important than anything else). That kind of thing. At some point, the two parts merged: hit me with your worst world, because I don’t need you when I have food.

My eating disorder was my fuck off shield. It was marble hard and shoulder thick and cold as ice and absolutely nothing got through.

Nothing.

So, anyway, up until now, I’ve gone through any major transitions (and everything in between) with the protection of this rather warped shield. Yes, I’ve been nervous and things have kind of mattered; but there’s always been the food to immerse myself in and there’s always been a little voice in the background re-iterating the fact that it doesn’t matter what happens because “I don’t care”.

Only it does matter and I do care.

Bitterly, I care bitterly. I care that the job works out and that I do it well. I care that the people there like me and that I make new friends. I care that I’ll meet expectations and that it will all turn out alright…

I care a huge huge amount.

I have been kind of numb to this experience. I have dampened the panic with food and taken the edge off the caring with defence. I have prickled at people rather than left myself open and taken refuge in my eating disorder because it provided a place for me to hide. Or that was the illusion.

That was an illusion.

The “I don’t care voice” has not served me well. I get that it thought – at first – that it was acting in my best interests, but it has denied and weakened myself. It has pretended that I didn’t care about the things that actually matter, and it has inferred that I could not cope with the stuff that caring brings.

We’ll see.

This time I’m going properly in.

I hesitated (because I had planned my supper already) and scrabbled around for an excuse (because they were going for pizza, and I haven’t faced that challenge yet); and then realised that it was more important – given the loneliness – that I was fully available to life.

An eating disorder does not let you be fully available to life. It is amazing how pervasive food can be. How it is not just the actual eating that shackles you but the everything else that gets swept up along the way. Not only have I been unavailable to things that have involved food. I have also been unavailable to those that interrupt my “stuff” around food; those that might contain food; those that might make me feel something that will lead to a food-related encounter; those that might effect any of the bzillion things that I have loaded with food significance…

Oh yes, and the food thing. It wasn’t just about the food in the first place: it was also about my response to life. There’s lots of other stuff that I’ve been hiding from by keeping the focus on what I do and don’t eat.

Anyway, as you might have noticed, I’m now big on making myself fully available; which means that I took a deep breath, last night, and said “yes please”. (It was lovely).

For a long time, I’ve been trying to bridge what feels like an abyss between myself and the rest of the world, to work out what I need to do to catch up and plot the steps that will take me from A to B. I’m beginning to think that it doesn’t work like this. That the most important thing about this whole adventure is being available to opportunities and dismantling the obstacles that get in the way –

Like the eating thing.

Or the little voice that pipes up with a hundred reasons why I shouldn’t get involved.

Or just the fact that something deviates from my normal routine.

This doesn’t mean that there are no boundaries, nor that I should tumble, head first, into every opportunity or possibility that passes me by. It doesn’t mean that it will suddenly become easy. No. It just means, I think, that life is going on all around me, as it probably always has been, and rather than theorising about how I get re-engaged with it, maybe the most important thing is removing the obstructions -

And being available to whatever comes along.

Most of them have emerged during my recovery. It was hard, before then, to see beyond the food. Now, I follow the clashes, and the discussion and the flashes of insight; and the puzzle is coming steadily along.

I no longer expect it to be completed.

Last week, I read an article on ‘Existential depression in gifted individuals’ (as you do); and another piece started to emerge. It has been gradually gaining definition until I understand what it is trying to say.

I think, in essence, that I experienced some sort of existential depression; and, that my eating disorder provided a safer distraction and a sense of order that took the focus off the wider world which, to me, simply didn’t make any sense.

It’s a difficult concept that I’m still trying to work through, so forgive me if I’m clumsy with my words while I try and explain…

What the article says

I‘m not hot on the definition of “gifted” kids, and don’t know that I’d place myself under this heading; but, categorisation aside, the article (by James Webb) is exploring why “gifted” kids might be more likely to slip into existential depression with some ideas around how this could be avoided.

It begins with a description of existential depression, which is where the penny was lifted and ready to drop -

“Existential depression is a depression that arises when an individual confronts certain basic issues of existence. Yalom (1980) describes four such issues (or “ultimate concerns”)–death, freedom, isolation and meaninglessness. Death is an inevitable occurrence. Freedom, in an existential sense, refers to the absence of external structure. That is, humans do not enter a world which is inherently structured. We must give the world a structure which we ourselves create. Isolation recognizes that no matter how close we become to another person, a gap always remains, and we are nonetheless alone. Meaninglessness stems from the first three. If we must die, if we construct our own world, and if each of us is ultimately alone, then what meaning does life have?”

- and then continues to explore these insights in relation to the common traits of gifted youngsters, including intensity and “multi potentiality” (which I’m taking to mean across the board straight As) -

“When their intensity is combined with multi-potentiality, these youngsters become particularly frustrated with the existential limitations of space and time. ….

In such depression, gifted children typically try to find some sense of meaning, some anchor point which they can grasp to pull themselves out of the mire of “unfairness.” Often, though, the more they try to pull themselves out, the more they become acutely aware that their life is finite and brief, that they are alone and are only one very small organism in a quite large world, and that there is a frightening freedom regarding how one chooses to live one’s life. …”

Where it makes sense to me

I remember sitting at the piano, when I was about 8, feeling the world getting larger around me whilst I started to disappear. I remember my dog dying, at 7; and the nights then spent lying in bed staring at the diagonal rows of flowers on the wallpaper, wondering when it would happen to my family or me.

I remember that stomach-turning question of where does the universe end – and what is after the end? I remember the desperation of feeling like I was being swallowed up by a huge daunting world….

In other words, I think I had a good old dose of existential angst, but lacked the language to help me work it out. And, so, I avoided the questions; and attempted to alleviate the loneliness; and, instead of getting lost in the enormity of life, I focussed on the minutiae of food and weight –

And time stood still.

I had my meaning and I had the illusion of control.

And now?

Time has re-started now. I only learnt the term ‘existential’ as I had a major panic attack and was flung back into the acute sense of nothingness on the way to work one day. It turned out, later, to be classic ‘existential angst’. I think it’s more common when you’re older, so I am slightly less perturbed or, at least, I appreciate that hiding from the world’s not the best way to manage it.

It helps, somewhat, to realise that I was not – and am not – alone.

It also helps to get a little insight into what was going on, back then, so that I can let that little bit go and continue moving on.

The full article is on the Davidson Institute website and can be read here.

Related Posts: Life-And Death; “We perished, each alone”.

I stopped eating. Lost lots of weight. Started throwing up what I did eat. And then added in some hardcore bingeing for good measure.

I am more aware, now, of the different diagnostic criteria, and how they’re all subtyped and divided. I don’t think they were so defined, when I started out, so I mistakenly assumed I was unique…

Or I simply wasn’t prepared to listen.

And so, instead, I seemed to inhabit a lonely kind of middle land, where the one – cancelled the other one – out. I am not anorexic because I binge and purge – and I am not just bulimic, because if you take away the bingeing and purging, there’s certainly no other eating going on under there.

Neither behaviour would admit to the other – and the denial certainly wasn’t challenged by me.

Over the years, the layers built up, like concrete, with one behaviour solidifying on top of the other. The longer I starved, the more my body craved food; and, the more I reacted to the craving, the harder it was to remember that my body was starving.

I would focus, when I had the energy, on a particular dimension, like trying to reduce the bingeing – only to realise that I was too damn scared to eat. Then, I’d swap to trying, slowly, to edge the food intake up; but I’d panic and find myself purging or crashing into yet another binge.

Each side would negate the existence of the other; so, more often than not, I’d end up convincing myself that both diagnoses must be wrong.

Deadlock.

And so I got stuck.

I didn’t rocket from one extreme to another. They just came together and exploded, daily, in the same space; and, instead of dealing with the root of the explosion, I spun around trying to work out which symptom to hit first.

The bulimia always won out, in theory. It was expensive, and messy, and shameful, and degrading – but the anorexia, underneath, and the wasted body that I clung on to, kept triggering it back in. Round and round and round.

Eventually, I stopped fighting and agreed to a stalemate. No food during the day – and bingeing from 7 to 11. Split down the middle: a lethal truce.

You can stay there for a long time, though it feels like death and treads frighteningly close.

The world moves on, around you, while you’re pinned between two brick walls, screaming to break free –

Until the prospects become so frustrating that any progress, however imperfect, is better than the hopeless to-ing and fro-ing -

And, the focus shifts, almost imperceptibly, from a battle against the different behaviours, to a war against the illness, as a whole.

I think that this was where my recovery begun.

Most of these tweets bring a huge smile to my face. “YES!” I want to shout: “I do do that too”; and “YES! That is exactly like me”… and I’m not the only one?

In that 140 characters of connection, there is an instant click to other people and the warm reassurance that I am not on my own.

I am not used to this warmth, after the coldness of an eating disorder. I hadn’t realised how important it is to hear your experiences echoed in someone else. To bridge the difference between you – and them – with the acknowledgement that, on occasion, you share some of the same random thoughts.

(Like: “When you stare at a word for a while, does it start to look less and less like a real word?”).

I am not used to spotting the connection, after working so hard to keep everyone out. I didn’t appreciate – when the walls were shoulder-high and the interactions, minimum – that the opportunities for noticing the similarities were worryingly slim.

There are lots of things that an eating disorder doesn’t let you share in, either because food seems to colour all experiences, or because you’re busy hiding what you’re up to. Lots of instances where you smile, emptily, because a reaction is expected; but the experience couldn’t be further from your reality, and the difference only serves to emphasise how much you don’t fit in.

My eating disorder liked division. It worked well when it was me – against them.

I work better with others -

And so now, I enjoying my daily dose of similarity; and find it reassuring that, even if the big things are different, the smaller things are touchingly the same (like: “Do you have a bunch of computer, camera, and video game cables that you don’t really need, but keep anyway “just in case?”).

And I am learning, after maintaining a strict policy of isolation, that it’s a reciprocal relationship; and the more you speak out, the higher the chance of someone coming back with “OMG I feel that too” –

Because the behaviours and the challenges may be different, but the feelings are often shared; and whilst we’re all unique, we sometimes cross a sunny path where we’re also the same.

Like -

“When you download something, do you just sit there and watch the numbers go by?”

“When listening to your iPod in public, do you randomly take your headphones out to make sure no one can hear your music?”

“When you read about a disease’s symptoms online, do you automatically assume you have it?”

*All italicised quotes nabbed from twitter stream @omgidothistoo.

His head was bowed on her shoulder; her hands were clasping his back, so tightly that I could sense the strength; and I wanted, as I side-stepped around them, to scream.

This is what the eating disorder stole from me.

That kind of hug – and that kind of union – is what it stopped me from enjoying; and has put so far away that the distance feels too vast to bridge.

I walk on, and my head says, because it should, “well, isn’t that nice – I hope they’re okay though – and a hug is, indeed, a powerful thing”; and, at the same time, my chest is ripping because, yes, eating disorder, a hug is a powerful thing, and love is certainly a force to be reckoned with….

Is that why you were so scared of letting people touch me? Is that why you stopped them, just before they started reaching out, with icy eyes and the sharpness of bone?

Maybe. Although you liked to say that it was the other way round, and the problem was me.

I have missed hugs, over the past decade. There have been a few, but nowhere near as many as would be good for me. They have been strained – rather than strong; shadowed by the fragility of brokenness, and the discomfort I have felt about being in my own skin. They have been constrained – rather than liberally available; rationed by my secrecy, and the isolation, and the periods spend within different systems of care.

This might explain the wrench.

Plus the fear that it will never be me, joined in that embrace.

I am a hugger, I am beginning to learn, now that the eating disorder has retreated a little or I am less afraid of arguing back. Because it wouldn’t hurt so much – would it? – if I didn’t know how important a little human contact is.

And I believe in the power of love, I am starting to admit, now that I am snatching the parts of me back or peeking out from behind the disorder. Because, I wouldn’t appreciate the strength, I don’t think, if I didn’t have a lot of my own that I am desperate to give.

I can’t get it out of my mind.

It has struck a sensitive chord that I am almost too scared to write about; and, because the chord is exposed, a wall’s gone up and now I can’t see what’s going on behind.

According to this article, rejection is like a physical pain. Whether you care about who’s rejecting you or they’re hidden behind a computer screen, the hurt is the same –

A twisting in the gut and a bowing of the shoulders and a sinking of the head and the unbearable feeling of shame. Or that’s the imprint that remains for me.

A few weeks ago, I had my own little example.

In our office, birthday cards are part of the team spirit. Regardless of whether you’re best buddies or just sit in the same room, a card on your birthday and one when you leave are a given.

This year, my birthday was on a Saturday; and, on Friday night, I went home with a few personal cards – but no passed around best wishes. Despite the fact that I’m not particularly close to my work colleagues, the hurt was palpable and I spent much of the weekend trying to work out what I had done wrong.

When I returned to the office a few days later, the cards were waiting for me with a completely rational explanation; but, in those few days, I realised just how much I cared what other people thought of me. And just how much rejection ached.

It is difficult to write this, in case other people assume the same.

Rejection feels contagious: one snubbed nose, and it soon spreads.

The act is as physical as the response. Or so I have come to believe.

Ironically, I have little to back up this supposition. The instances are mild and I’ve always muddled along, possibly because my eating disorder was both defence (I don’t need them) and excuse (the problem’s with the eating disorder, and not with me) –

Only there’s a lingering sense of being outside, rather than “in”, and the sharp horror of discovering that I’d been left out…

It is hard to admit to these things, despite the fact that my response appears to be quite normal –

Because, it hit me, when I was reading this article, that rejection is part of the human experience, and not just a personal indictment of me. And it seemed, in the light of the science, that there was very little that I could do to change the response, rather than take a deep breath and remember that I am not everyone’s cup of tea –

So, in the absence of a solution, and because my reaction was as you would expect, I have decided that awareness is a good starting point; and that, as rejection is an ongoing and not uncommon possibility, I can only work with me.

Which means that I will acknowledge the feeling (rather than hide it behind food), and remind myself that I’m only human (rather than pretending that I don’t really care), and appreciate that I might not always be part of things (because everybody’s different) -

But I don’t need to compound the rejection by holding on to the pain –

or assuming that everything’s wrong with me.

It’s the stuff that everyone else talks about that I find harder to get the hang of.

It has been several years since my last inpatient admission. I have moved on, a million miles, and life is far far better – and yet, sometimes, when I’m wrestling with the uncertainty or watching the world from behind a glass screen, I can hear, in the background, the hospital hum and the once familiar voices – and I long to turn around.

I miss the predictability – and the security – and a way of being that I had come to comprehend.

It is a little unexpected – this perverse yearning – given how unpleasant most of the experiences were. It is somewhat ironic that the containment appeals, after I fought so hard to be free. Only, it is the outline that remains, rather than the painful details; and the impression of belonging that I am hankering for, because the silence feels so alone.

So, there’s a subtle side-stepping, at the moment, towards a more ‘normal’ way of being, with responsibilities, and expectations, and a routine that is not structured around three meals, two snacks, something that passes for therapy – and then bed. And, I am having to learn – in reverse – where the line needs to be drawn; because after breaking everything down to get to the root of things, I’m building it all up again to operate in this unfamiliar space -

The rules of engagement are different in the real world, and the stuff that it took me so long to make sense of is no longer appropriate to be said.

So, I am doing a bit of re-orientation, (because I didn’t realise that one foot was still stuck in a hospital ward); and, I am appreciating that there’s a certain disjoint between a head that’s been through a decade of therapy, and one that just takes the world as read –

Which is not a reason to go backwards.

It’s just that I hadn’t realised just how institutionalised I had become; nor how the backdrop of wake up calls – and hospital sheets – and the cloying smell of antiseptic had lingered into today.

And, I hadn’t paused, until this painful awakening, to acknowledge how un-nerving I am finding life without rules, and structures, and systems that I might have fought violently against -

But were, at least, far easier to understand.

The occasion is bittersweet.

It has, as birthdays tend to do, sent my mind racing up and down the timeline. Somewhat tragically, the memories don’t hang on the parties or the celebration, but on the particular phase of my eating disorder that each year has become bound up with.

20 through to 25 are pretty much blanks.

Interestingly, the last pre-Eating Disorder party is one of the most poignant, maybe because I hadn’t stopped taking photos at that point or because it feels, sometimes, like I have been frozen in time…

So, there we are, at my 12^th fancy dress (country-themed: it was cool at the time) party; and I am a Spanish flamenco dancer in shocking red over a Victorian-petticoated-skirt. There is a little Mexican-hatted girl beside me, and a Chinese dress a bit further down and I don’t quite know what the rest of them were thinking. We are lined up in a row, beaming at the camera. Later, we watched Lorenzo’s Oil, which was a bit heavy duty for a Birthday; and, we ate fondue, which was my favourite food before I became too scared to eat.

There is not a photo for the next year, nor a theme that springs to mind; but I remember what I was wearing – a long blue Tammy Girl jumper over leggings – and I know that I had just started getting scarily thin.

After that it blurs. All that lingers is the fear of Birthday cakes and a resentment at having to celebrate things with food. We fought, I think, and got frustrated, because, it seemed a bit of a farce to celebrate when it was all going so horribly wrong.

18 comes next, and I wasn’t doing too badly. We went to an Italian, a whole huge table of us, and I was beginning to feel popular and grown up, and like things might fall into place. I had a bean salad (which was horrible) because the pizza was too scary; and got a kebab – of two – to throw up on the way home.

I don’t remember my 21st. I was very ill that year. I feel a little deprived, on hindsight; but I imagine it was a date to endure, rather than one to enjoy.

On my 25th, I went for a drink in the afternoon. The ring that my parents had given me fell off somewhere between rehab and the pub because my fingers were shrinking at the rate of knots. Within two weeks, I was back in hospital.

On my 27th and my 28th, I smiled politely and marked the occasion – but made sure that I was home in time for my nightly binge.

My 29th was my first bulimia free Birthday in over 15 years and was nearly cancelled as I realised that I had lost my friends. It came with a valuable lesson – quality and not quantity – and, whilst I didn’t quite make it to cake, we did make it to Ping Pong Dim Sum, and I started learning how to have fun –

This year, things are totally different.

I am, I’m aware, in a place that I didn’t think I’d reach, celebrating an occasion I wasn’t sure I’d make; and I should, I feel, be pretty happy that I will be spending my 30^th with friends and family, rather than a toilet bowl and a plate of food –

Only the thought of that child – and then this adult – is heartbreaking; and, after all those years, it only just feels like the ice is thawing and the flamenco dancer is coming back to life.