Treatment?

Monday 16th March 2015

Dear Friends

Quick prayer request:

I am putting feelers out. I have just heard on the radio of an experimental treatment called Deep Brain Stimulation which has had a dramatic effect on some patients with OCD who have proved resistant to everything else.

A professor I once met in a BBC studio has just emailed the professor in charge of the study to see if the study is now closed, and if not whether we might be able to get Lara on to it.

One good thing about her missing last week’s medical appointment is that when I rang the hospital to beg them to reschedule as soon as possible, I got a telephone call back from the nurse supposed to be assessing her, who said, “Well, at least you have our telephone number for us now, and can ring any time for support.” So perhaps, if we can get her a place on this treatment, I could ring the team and get their support, and ask them to suggest it to her?

Later:

Things change as fast as a sunset in Norfolk. Now she is obsessively shuffling the cards, driving us all nuts, telling me she wants to talk but refusing to talk.

She wants to share with us the story of the bust-up with Gatsby. But can’t talk to us because we’ve been so unsupportive of her relationship with him.

Of course, the one person she wants to talk to is the one who had the sense to leave the house: Ben, gone to church.

(Later still:

Dear Fleur

I have been thinking much of your exhortation to get the best treatment possible for her… but she won’t let me get involved.

Sorry I’m not in the library working yet. I’m not hugely well, to be honest.

Fleur to me:

Not surprised about you not being in the library nor that you are not hugely well.)

Sorry guys, I keep resolving not to trouble you for another week, and then something else happens.

I’ve just had a telephone call from the professor running the Deep Brain Stimulation study. The initial funding was for six patients and they’ve tested it on five, which as you can imagine made my heart leap. However, she said Lara is debarred from the study because of her more recent diagnoses of Borderline Personality Disorder, which makes her too complicated a prospect as understandably they have to have a “pure” study.

But she went on talking to me, was very kind and told me of a number of other treatments (the most extreme of which, after all else fails, is neurosurgery in Dublin: cutting out the troublesome part of your brain).

One of these is six months’ full time inpatient treatment at the Springfield Hospital. I am hugely excited by this prospect (far more than by the idea of Deep Brain Stimulation to be honest) for several reasons:

1. Treatment of preference for her must surely be a talking therapy: more than medication; more than sticking wires in your brain or (God forbid) cutting bits out of it. As Serena has said a number of times, it’s not that CBT-type treatment has failed with Lara: it’s that the amount she has been given has been so woefully inadequate. An hour a week? (At best.) The best result Lara has had was from her first 12 week stay in the Bethlem. Trouble is, it wasn’t nearly enough.

2. A very close and very brilliant friend of ours, who also became very ill in adolescence, is much better as a result of treatment at the Springfield: five years, as an outpatient, full time… a programme which, of course, has now been axed.

This kind professor is going to find out how to get Lara on to this programme at the Springfield. On the face of it this is difficult enough but I don’t feel daunted by it because, in my experience, barefaced perseverance gets you most places in the end.

What makes me more nervous is that Lara has asked me not to get involved. One reason given for her disappearance from our lives is her atavistic terror of my trying to control her... So the suggestion can’t come from me.

Much prayer, wisdom and patience called for.

Thank you!

A

xxxxx

Spring shoots

Easter 2006

For the first weekend of their twelve-week period of treatment in the Royal Bethlem Hospital Severe Anxieties Unit, patients were not allowed out.

Which meant that Bink’s first home leave, twelve and a half years ago, was on Maundy Thursday, for four days.

I can still feel my utter astonishment at the Bink who walked back into our little cottage, for that long Easter weekend, after just ten days of treatment.

She sat in chairs she had never been able to sit in. Drank out of glasses instead of mugs. Used the telephone.

It was like beginning to wake up after a long, tortured nightmare and daring to believe that this, after all, might be reality...

We didn’t all have to play musical chairs at the beginning of every meal, to work out where Bink could sit. Or dance a quadrille every time she wanted to get up.

I noticed with wide-eyed astonishment that she herself no longer had to dodge out of the way whenever I drew near; or make a firewall of several feet between us so I didn’t contaminate the air around my own daughter.

I hadn’t fully realised, until it stopped, how endemic this behaviour had become.

How demoralising had this been for me, month after month, year after year? That my own flesh and bone, whom I had given birth to in such a wash of pain and tears and blood twenty-one years earlier, was so revolted at the thought of merely brushing against her mother by mistake that she flinched away in terror.

I hadn’t been able to bear how hurtful it had been, until she didn’t any more.

She told us she had been tasked, in hospital, with washing up. Was this the first time in her life? I can’t remember her ever doing it before.

First she had simply had to do this for herself. Four plates, four mugs, a little cutlery.

One and a half hours.

Without gloves.

(Pretty extreme, I’d say. I won’t do this: washing-up without gloves. Your hands would end up like withered prunes for the rest of the day. Almost at the rubbing-faeces-on-your-face end of the spectrum, to my mind...)

Then she was put on the rota for the house, and washed up for five others. Two hours, with gloves.

She said this was pretty good going: some of them are up all night.

It was quietly noticeable that she could do a little to help. Not much, it was true. But at the end of a meal, instead of sitting incapable, she was able to carry a used plate into the little kitchen. Tidy away the salt. Remove some other item.

It was almost like starting to have four grown up children, rather than three and an invalid.

I could begin to imagine what life could be like...

Just think.

Bink had been asking for treatment for six agonisingly terrifying and lonely years. Since she had been fifteen. Begging, and longing, and so desperate for medical help that she took a token overdose aged sixteen, to get attention for her condition. And then attracted the wrong kind of attention altogether, which catapulted her into an extremely abusive hospital which brutally ended her schooling prematurely and made her addicted to destructive medication.

And yet the right kind of treatment had existed all along…

Which could have saved her over a quarter of her life. The rest of her family all that pain.

And – not that this compares in significance, though it does show the utter futility of the policy – saved the tax-payer, on Bink’s estimation, well over a million quid in subsequent piecemeal benefits and other stop-gap-aids to staying ill.

Endurance

Further prayer-email during Bethlem treatment.

‘Summer 2006.

‘You know what it's like if you have OCD. Or if you're lucky you don't.

‘One simple wash, which the rest of us probably execute at least twice a day without even thinking about it, becomes the most momentous event of your life. 

‘It is your first night performing solo in the West End... when you forget your lines. It is jumping out of a ’plane at thirty thousand feet, when you are terrified of heights. It is the day your fingernails are slowly pulled out by the Gestapo. It is also your visit to Buckingham Palace to collect your OBE.

‘It is all these, rolled into one.

‘And you are expected to perform this utterly exhausting and adrenaline-flooded ritual, not just once in your life like any of the rest of us with something so momentous, but on a regular basis.

If you can find the courage and energy and can face it in the few short hours of day which God gives for washing in.

‘Your laundry, even more apocalyptic.

‘So there they are, all in the same house, all with the same lunacy, all wanting to use the same one and only washing machine.

‘And Bink needed to wash her clothes.

‘But another inmate, Sue, had her clothes in the machine. So Bink had to wait, for the best part of the day, while Sue's wash went on and on and round and round and inside out and upside down – if she's anything like Bink, through the most aggressive, un-ecological, maximum boil programme available – before Bink could put her wash in in.

‘Who, naturally, would not dream of touching Sue’s laundry. Because if Sue is anything like Bink, touching her laundry could blow her out of orbit onto Mars.

‘Eventually and at last, Sue’s extremely over-washed laundry comes out of the washing machine and goes into the dryer.

‘Which means Bink can now put her clothes into the washing machine. Though she will of course have to wait for Sue herself to be present to take her clothes out of the dryer before she can dry hers.

‘Now… Jane was in the queue after Bink.

‘It's not difficult to follow! Concentrate:

‘Three women. All with washing obsessions. All living together. (If Sue is saner than Bink but madder than Jane, what is the name of the bus driver?)’

‘By the time Bink has also sent her long-suffering clothes through a zillion hour wash and is ready for Jane to use the washing machine, Sue has gone out.

‘Leaving her laundry in the dryer.

‘Bink can’t take her own wash out unless she puts it straight in the dryer. Without letting it touch the rubber sealant around the door, obviously. Because if it does, she would have to start all over again. 

‘But Sue’s clothes are in the dryer. And Jane and Bink don’t know what it will do to Sue if they move her wash. She could be all right... or it could just drive her over the cliff and away with the goblins. Even more away with the goblins than she is already.

‘So Jane and Bink stand looking at the machine, debating and deliberating for most of the evening, wondering what to do so they can move Bink’s wash and get on with Jane’s.

‘I picture them, hour after hour, like two cats transfixed by a goldfish in a bowl though with rather less to look at, staring at the tumble dryer and conferring and wondering whether they can take the huge risk of opening the door.’

[Bear in mind I wrote this is 2006. Now in 2018, science is beginning to realise there may be whole new undreamt of levels of terrifying tedium the human race can be forced to endure as punishment for a referendum.]

‘In the end they decide to go for it.

‘They don’t need to touch her wash. They will just inch open the door a crack and take a look inside. Not sure what it will achieve, but hey.

‘And if it freaks Sue out... well, at least she’s in a loony bin already so there won’t be far to go

‘Guess what they find?

‘One pair of knickers. One solitary pair.

‘Goodness only knows how many gallons of water and lashings of electricity and tubs of Persil and hour after hour of the planet’s resources have gone into exhausting that one little tiny pair of lady’s knickers.

‘Which presumably needs this treatment every time it’s worn.’

Hygiene hazards and handsets

Further prayer-email during Bink’s treatment in the Bethlem:

‘Summer 2006.

‘And what of Bink herself?

‘I knew something was up when I got a text message from her asking me to ring a landline. She was very precise. Not that day. Not the next.

‘The one after that.

‘She hasn't been able to use a normal telephone for as long as I can remember. Has she ever, in fact?’ [I’ve mentioned the time when she had to speak to a Cambridge Admissions Tutor from our borrowed house in Scotland, involving me in half a day’s cleaning of the handset and several days avoidance of the telephone myself.]

‘Not for years, as far as I recall.

‘In the early days of her illness, I could never understand why it was so impossible to rouse Bink by ringing home, if she was the only one in.

‘Serena gave her a mobile for Christmas two years ago, and it was five months before she was clean enough to take it out of the box...

‘Presumably it was going to take her two days to be ready for this momentous step.

‘Sure enough, when I rang at the appointed time, she came to the telephone. Actually picked up it up, and answered it. And used it, spoke down it, you know...

‘Imagine for a moment that your five year old picks up the car keys one day and successfully drives the car down the road to the garage. Or more to the point – because it is something you have dreamt of so long, though not consciously because you never believed could happen – your grown up paraplegic son gets out of his wheelchair and folds it up.

‘She told me her therapist had also made her touch a loo seat, and she was still around to tell the tale. This was one thing – having seen it done on The House of Obsessive Compulsives, the telly programme which told us of the treatment at the Bethlem – that she vowed she would never do, and still can’t quite believe she has.

‘She was allowed to wash her hands afterwards, though.

‘It’s good timing that she can use the payphone, because alas she has washed her mobile again.. This time possibly fatally.

‘I was surprised that they don't seem to watch more telly.

‘When Bink was in hospital last time, in the Florence Nightingale Unit, the tv was on all evening, every evening. All afternoon too. If they weren't in therapy, they were watching the box. It’s a shame they didn't watch more, really: it was a lot less damaging than the therapy. The only way to avoid being mesmerised by it was to take up smoking, which meant you were allowed outside. One of the many results of that particular stay – none of which was positive – was that Bink came out with an incurable addiction to The Simpsons. (You could hardly complain about the ciggies: smoking was almost the only sane thing you could do in there.)

‘But in the Acute Anxieties Unit of the Royal Bethlem, they don’t seem to watch telly at all.

‘The reason turns out to be beautifully simple.

‘“Someone washed the remote...”

‘On hearing this, Alex was very taken with the idea of a household full of people all with the same syndrome.

‘“How cool would that be,” he said, “to be in a house that is normal, but a different kind of normal.”

‘“Alex, it’s not normal,” I said. “The D in OCD stands for Disorder. They're ill. Asperger syndrome is different: thank goodness, they don’t yet shove Aspergic people in a nuthouse to ‘get better’...”

‘“Just think,” he continued, with a faraway light in his eyes.” (Warning: some readers may find this next sentence frightening or distressing.) “A whole house full of people thinking like me.”

‘(Actually, on unnecessarily honest reflection, he said, “A whole house full of spazzas thinking like me” – but I wanted to spare you Alex’s and Bink’s rather alarming levels of political incorrectness.)

‘“Like the Cambridge University Mathematics Department, you mean?”’

Terror

Further prayer-email during that long-ago, so-rare treatment Bink was at last given in the Bethlem Hospital Anxieties Disorders Unity. After five years (and an entire agonising adolescence) of waiting:

‘Summer 2006.

‘It's been quite an eye-opener for Bink, meeting people even worse off than she is.

‘Bob first got ill in 1980 (he’s 52 now) and was given treatment in the late ’80s. In those days the approach was harsher. He was made to smear his own faeces over himself.

‘And not allowed to wash it off.

‘Also, because he was frightened of broken glass, he was made to sleep with his bed full of it.

‘Surprise, surprise: he woke, badly cut.

‘Hard to imagine how this would make you less frightened of it, somehow. Or indeed more “normal”, if that’s something we’re aiming for: adjusted to every day life and able to function, anyway.

‘“Did it help?” I asked Bink, incredulous.

History didn’t relate.

‘Discouraging that Bob is back in for treatment. But Bink says he's leaving in a few days, a little better. For two years he couldn't leave his mother's house, at all.

‘Henry is also leaving. Unlike Bob, Henry has hardly improved at all.

‘When he came in his face was a terrible mess: probably rather like the whole of Bob’s body, after he’d been to bed with glass.

‘Henry can’t buy shaving cream.

‘Or indeed, toothpaste, soap, loo rolls, washing up liquid or any other basics you can think of.

‘Henry is frightened of shopping.

‘Sometimes, occasionally – I imagine like Bink with her washing – after many months of screwing himself up to it and going without, Henry can push himself to a point when he can face his fear. He will brave going into a shop. He will brace himself to fill his basket with all those essentials he has been without for many painful months. He controls his panic long enough to get to the check-out. He even succeeds in paying for it all.

Some people, I now know, have obsessions and compulsions around the dirt on money and can’t ever touch it. But Bink hasn’t reported this particular anxiety of Henry.

‘Something for Henry to be grateful for, at any rate.

‘Have succeeded at the monumental and life-changing task, Henry will then get out into the wide freedom of the open air, with all this hard won treasure which he needs in order to care for himself and not slice half his face off shaving.

‘Does he celebrate? Does he open the bubbly?

‘Does he even go home and enjoy the first safe shave in such a long time?

‘He does not.

‘He feels such overwhelming terror that he dumps it all in the nearest bin.

Still in all its new shopping bags.

‘Look on the bright side of Henry’s predicament.

‘Bink actually buys all her requirements. Which works out a lot more expensive even than Henry’s wasted shopping...’

Next step...

Sunday

“We had no idea,” a number of people reading this blog have told me.

“I’ve been such a rubbish friend,” said one, feelingly, a couple of days ago. (This is absolutely not true, by the way: she has been one of the kindest and most supportive people in our lives. But she obviously feels she didn’t know enough.) “Even though you told us from the start that Bink was ill...”

So should every family affected by madness be writing about it...?

Part of the trouble, of course, is that most mad people are not able to articulate their suffering themselves. They may be living on the streets, or in prison. Or simply in isolation in a bedroom: I know of at least one such.

When journalist Frank Gardner (shot six times in a war zone, and disabled) was left abandoned on a ’plane, he was able to tell the rest of us how wheelchair-users are treated.

Who does this on behalf of the loonies?

And does this go some way to explaining why mental health provision is so much worst than dire?

Serena has said to me a number of times, “You’ve barely begun to convey how awful it was. When Bink came out of the [Florence Nightingale] Unit, for instance. If readers don’t experience the depths, they won’t feel the elation now she is receiving treatment at last.”

Must try harder...

Be that as it may, today is a day for good news.

Bink rang yesterday. She is about to start on the Priory’s bootcamp Addiction Treatment Programme. 28 days, no contact at all with the outside world for the first week and not much after that. Full-on, 7.45 in the morning till 9.30 at night. Visitors only on Sunday afternoons, and none the first weekend. 

And Bink thinks she will be far too busy for visitors on Sundays anyway, catching up with her washing.

It is a while since she had much acquaintance with life before midday. Let alone experienced anything one could describe as busy. It could prove an interesting relationship.

“Are you excited?” I asked. Nobody is expecting an easy ride.

“I am, actually.”

This picture is of the bubbles Rose blew in the park, when we visited Bink last Sunday.

Is it too much to hope that one day, Bink might become the Frank Gardner of the world of madness?

* * * * *

PS Ha ha ha ha ha. This is the first time I’ve added to a post written earlier in the day, but I can’t resist. Bink has just rung again.

“Please can you do me a favour?”

“Of course, Bink.”

“What will you be doing at ten to nine tomorrow morning?”

“Probably writing this blog. I post every day by ten.”

“Could you get me up, please?” From Bedford. Fifty miles away. All I have in my armoury is Alexander Graham Bell’s invention. “By Thursday I have to be in breakfast by a quarter to eight, so I’m trying to get up half an hour earlier each day.”

“Ok…”

She is talking to me from a top-of-the-range, state-of-the-art psychiatric hospital.

“And nobody here can get me out of bed.”