Tuesday, March 18, 2014

Helpful collaboration or sleeping with the enemy - or why is your hair blue?

"Collaborative Care" was the buzz word a couple of years back. I was never 100% sure it wasn't a bit like "The Recovery Model" or "Reconfiguration of Services", i.e. a good excuse for cutting State provision without anyone noticing, but in the sense that it was used to mean that people who are unwell need a circle of care rather than one great healer, I approved.

I didn't hear it directly referred to this EDIC. Hopefully that's not because the research and treatment worlds are busy working on new and improved techniques for parentectomy, but rather because it is now taken for granted, oh and because no one can possibly make any more cuts by stealth.

Hard fought for, or taken as read, collaboration isn't always easy, or right. When it is with the illness we smugly call it "collusion" as if we're always able to tell the difference between the best interests of the individual and the disease. In war, business or politics it can be referred to as "sleeping with the enemy" but who is my friend and who is my enemy?

I sniffily pooh pooh the private sector and rant against the allocation of resources that could stay within the NHS to private providers. Yet some of the most sympathetic and kind people I've talked to at conferences have been from private facilities, and anyway, the GP's surgery, the backbone of the NHS, has always been a private business. As someone who has been brought up in the ED world to seek evidence based care, I am naturally drawn to collaborating with those who aim to provide it, only, sometimes, to find that they aren't in the least bit interest in collaborating with me or mine. I was thrilled at the idea of collaboration between drugs companies and ED researchers. Think of all that lovely money, and the acceptance and fighting of stigma that it can buy. A dedicated and thinking friend was appalled.

For what it's worth, I am delighted at the collaboration between BEAT and FEAST for EDIC that allowed me to have a fantastic time laughing and eating and sharing the secrets of having blue hair with Laura. I don't personally go for campaigns collaborating with the popular press, or centred on the fashion industry, or concentrating on teaching me to love my body, but I'm OK with the idea that others may wish to. I'm proud, when asked why my hair is blue, to give two answers. The first, to those who might have an academic interest (or cough up some money) is that it is a fund and awareness raiser for an initiative in collaboration with Kings College. The second, to family and friends, is that is is in collaboration with my dear friend Laura to honour Charlotte. Yes, both those links are the same.

Monday, March 17, 2014

Learning to play the violin

Although music wasn't my first love, it won't be my last, and I could live without it, I do appreciate it. I am also appreciative of the role it can play in healing the mind. I really am. I believe that music therapy can work wonders. However I don't know anyone who would offer music therapy as the ONLY treatment for anything, let alone a life threatening illness.

It is the same with talking therapies. They can be very useful. Exercises and re-thinking can literally change thoughts and even the brain, but they surely can't be even expected to be the front, the only line, of treatment for something as deadly as an eating disorder. And yet this appears to be what happens to so many.

I attended a workshop on a "second wave" therapy for eating disorders at EDIC. I won't say exactly which one, because I don't want to single out either the therapy or the speaker and because, for the purpose of this rant, it doesn't really matter. In fact the speaker didn't really explain the history of her treatment or the difference between it and any of the other ideas based on mindfulness and kindness that are being talked of by so many at the moment.  The audience, most of them steeped in training in psychology but without a medical qualification or any expectation of power or influence in the physical care of the body of their clients, were asked to practice peaceful understanding of their clients' struggles, and to empathise with them.

All well and good, but if that's ALL that patients are getting, and often it is, then it is really just fiddling while Rome burns. If we put enough resources into this kind of training without adding full medical care with a robust understanding of brain health then we'll very soon have whole competent orchestras who can play while the boats go down.

Sunday, March 16, 2014

Holes

I have never much liked this poem;
“I walk down the street.
There is a deep hole in the sidewalk.
I fall in.
I am lost... I am helpless.
It isn't my fault.
It takes forever to find a way out.

I walk down the same street.
There is a deep hole in the sidewalk.
I pretend I don't see it.
I fall in again.
I can't believe I am in the same place.
But, it isn't my fault.
It still takes me a long time to get out.

I walk down the same street.
There is a deep hole in the sidewalk.
I see it is there.
I still fall in. It's a habit.
My eyes are open.
I know where I am.
It is my fault. I get out immediately.

I walk down the same street.
There is a deep hole in the sidewalk.
I walk around it.

I walk down another street.” 

It wasn't until I saw an illustration in a talk by Professor Janet Treasure(that I am cross not to be able to find to include here) that I began to reflect on why. The picture shows a person down a hole, and his friends and neighbours helping to get him out. Isn't that so much better than leaving him to do it all alone? 

 If I was initially cross with the poem, when I heard it repeated at EDIC I was FURIOUS. We had just had a panel of speakers talk about their experience of eating disorders. One of the speakers was a bereaved father who spoke with totally justifiable passion and anger about the way his daughter was allowed to fall through all the holes in the system and die at 19. 

So here, with a nod to (but NOT an apology) to Portia Nelson, the original author of the poem is my version

“I walk down the street.
There is a deep hole in the sidewalk.
I fall in.
I am lost... I am helpless.
It isn't my fault.
I think it will take forever to find a way out.

My friends and neighbours gather round
With ladders and ropes and skill and determination
They haul me out
And take me to a safe place
To heal and to rest
While the more vocal of them call the council to mend the hole

When I am better
I join in campaigns and petitions
And working parties
To have all holes in the country filled in
And mindful of my vulnerability
I am vigilant while walking down streets

My friends and neighbours help me
With the petitions and campaigns
And accepting my vulnerability
Offer to walk with me if ever I need to walk down 
A street that is unfamiliar or dark

I never fall down a hole again

 

 

EDIC

Marcella has been to the Eating Disorders International Conference in London and her next three blog posts will be inspired by it.

It wasn't without its problems. For a start it was phenomenally expensive. Marcella was only able to go thanks to the generosity of her alter-ego's parents who provided not only the money for the ticket but free board and lodging for four days. She could only spare the time because her alter-ego's loved ones are self-sufficient enough not to miss her for a while and partly because of a degree of presenteeism she has time left to take as leave from her job.

On the day that she attended, and as she understands on the other days, the presentations were of variable quality. Some of them were great, some disappointing, and some, she understands, just hair-raisingly awful.

However, on balance, she is deeply, deeply grateful to those who organised it. Even the less successful presentations were an opportunity to learn. All is NOT well in the state of Denmark, or in this case, ED-land, and from the amusing mistake in the advertising blurb for a large private chain of hospitals (they really should have got one of their patients to turn an attention to detail to their brochure before publishing) to the frightening tales of dangerous sounding therapies, this was an opportunity for interested parties to try to effect change. Conferences ARE expensive to put on, and much of the money must have been spent on flying over some of the best speakers. London is expensive, but was at its beautiful, sunniest best. The fact that the conference was on, and one special friend was here from a long way away, was an ideal excuse for some of us, even if we couldn't afford to get through the doors, to meet and laugh and share stories and experiences.

So, to all involved in EDIC, thank you. Marcella had a really good time.

Saturday, March 08, 2014

More on Lent

It can't really be avoided round here, although work and some aspects of home life have meant that I've quite often temporarily forgotten Lent. As I can't ignore it or forget it permanently, and ranting about it appears to be counter-productive both in terms of the reaction I get and the effects on my own blood pressure, so I've decided to use the time for temperance. I think it's probably a bit much to try to justify a commitment against that fasting word by using the complete poem, but taken just a little out of context some of the verses of George Herbert's poem on Lent do at least encourage me to be temperate. The Love Life Live Lent programme encourages me to be joyful and this thread from my friends encourages me that it's normal to be ambivalent about the whole thing. And this quote from Irish Up just encourages me " We give up things that prevent us from being our best selves, instead. This is after all, far more in the spirit of the observance, IME.   AFAICR, Jesus says lots of things about treating each other well, and has almost nothing to say on the subjects of chocolate or donuts. And when he DOES talk about food, it's to feed people. Just saying."


Monday, February 24, 2014

It's that time of year again

Not May when I rant about communications, or November when I don't shut up, or even Christmas when I attempt to write individually to each of my friends and give up after the "Bs" in the address book and post a dreadful round robin on-line.

No, it's blasted Eating Disorders Awareness Week, which this year in the run up to, rather than actually in s*££ing Lent.

Of course both of these events are positive, inspiring, GOOD things. It's just that they are also hugely complex things.

There may not be such a thing as bad publicity, but there are plenty of examples of bad, and possibly even more difficult to deal with, mixed, awareness raising. At least I'm not alone in noticing this  in fact I can have fun grumbling and sniping and then doing something positive to get things to change with many friends

When it comes to Lent I am feeling more lonely. It's not as if I don't heartily agree with the bishops. It's not as if vile, unthinking critical crap on the subject like this or like this doesn't make me want to pull my hair out, it's just that I'm wary of that four letter "f" word FAST.

My friends in the eating disorders world have given me more examples than I can really cope with on the dangers of fasting and I have passed them on but I haven't yet found anyone, well, apart from one far too busy person, with whom to really discuss the matter. I CERTAINLY don't want to join the critics of the ideals behind End Hunger Fast or the Carbon Fast, or End Poverty Fast it's just that I think actually, my giving up meat for a month, or cheese for a week, or food for a day, is as likely to bring true awareness of, and help to, the genuinely poor in the world, as my pulling my hair out over those articles is likely to help those who self harm. While they would be a bad example to any vulnerable witnesses who decided to emulate me, neither of them are even going to give ME a clue about what it's really like to be poor, or mentally ill, day in day out for years.

So, I'm looking round for ideas on how to make the 40 days of Lent healthful, helpful and effective in the long term. So far, my only idea is to give out the Carbon Fast leaflets to the church's target audience, because they ARE a good idea, and it would be a terrible waste if they went into landfill on Easter Monday but to scrawl on every single one of them CARBON SLOW. Not very mature I know, but Lent hasn't even started yet so plenty of time to use it to grow up.

Saturday, November 30, 2013

Rejoice! Rejoice!

For tomorrow is 1st December, Advent Sunday, bringing with it Christingle, Advent Carols, Advent Wreaths, Candles, Christmas Hope, Mince Pies, Mulled Wine, Parties, and above all the end of NaBloPoMo

Friday, November 29, 2013

A sense of self

I created "Marcella" as a semi-anonymous way of communicating. I still use her as such to comment on newspaper articles or NHS websites, although since her email was hacked she's less useful in those ways than she used to be.

I think I'm pretty good at separating her fiction from my reality, even if I did get an email addressed to her gently criticising me and asking her to get me to pull my finger out.

Whether I'll always be able to tell fact from fiction, keep my petty lies from spilling out, hold my head up high when walking through a little shower let alone a storm, who knows. If not, I hope my carers are as dedicated and knowledgeable as the staff shown in "Bedlam" and that at least someone on the ward likes the me I will have become.