Monday 16th March 2015
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?
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.
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.