SUBARACHNOID HAEMORRHAGE (SAH) OR BRAIN HAEMORRHAGE

The second talk we went to at The Hay Festival was precisely the one we wanted to see. Maryam d’Abo (a former Bond girl from “The Living Daylights”) and her husband Hugh Hudson (director of “Chariots of Fire”) was talking with Sasha Bonsor (Features editor on The Times) and a neuropsychologist called Paul Broks all about her experience of suffering a subarachnoid haemorrhage in 2007. This was mainly because a very good friend of ours has recently suffered a brain haemorrhage and is still in hospital embarking on his long, slow road to recovery. He is one of the lucky ones. His wife called an ambulance the minute he complained of the worst headache ever – “like an eruption or a volcano or a thunder clap going off in your head” and started vomiting. Maryam had the same symptoms “it was like an earthquake inside my head” she said “I was convinced I was still in a nightmare and I couldn’t wake up – it was terrifying”…but her friends put her to bed thinking she had drunk too much coffee. She was even luckier – it took four days of spectacular headaches and sickness to be diagnosed after they found blood in her spinal column after a lumbar puncture. It is estimated 50% of people who suffer brain haemorrhages do not survive and of those who do, half are left with severe disabilities.

Her husband Hugh Hudson has made a film about their experience “partly to give her an understanding of her journey but also to help other families” he said. It aims to give hope to those isolated by a condition that is not seen and therefore often misunderstood. He was disappointed he didn’t have his “career” hat on when he first saw his wife after her operation with a shaved head and 9″ scar on her temple. “I should really have filmed her looking like an anorexic child, completely debilitated” he said. “But I didn’t. I couldn’t do anything else but just be with Maryam”. Several clips of the film were shown during the talk. It is a very brave and powerful film called “Rupture – A Matter of Life or Death” – about the violent experience of a number of people and how they are all dealing with it. Hugh said “the film is about emotion and pain – not medicine and science”. It is going to be on BBC Four in July.

Sasha Bonsor chaired the event and was brilliant. A gorgeous young woman who also suffered from a bleed at the base of her brain who could only find one neurosurgeon brave enough to operate on her. Sasha has written a book called “Dipped Into Oblivion” that Maryam read and then contacted her about. They have been friends ever since.

They discussed the isolation and loneliness of the “illness”. Hugh Hudson made it clear that the same applies for the family members having to deal with what is possibly a changed personality and I noticed during the talk that he didn’t watch his film at all – I wondered if that was because he’s seen it so many times before or if he still found it too hard to watch. Maryam talked about “the great sense of shame” she and others felt about their condition and they wanted to address that as well as the fear that something else might happen or that you have no control over your body. She has several other family members who have suffered the same thing – she wondered whether it was a genetic predisposition to a weakening in the walls of the arteries that then caused an aneurysm. She talked about how she couldn’t deal with noise initially or too many people. Everything had to remain quiet and calm. She says she still has difficulty with storing information and her memory doesn’t work very well “but that’s also because I’m not 18 any more”.

They both discussed falling in love with their neurosurgeons “because they saved our lives” but the cold level of care they received from other doctors after that – the desire for touch, compassion, warmth that just wasn’t there. My friend feels the same as she tries to deal with her husband’s situation:- “the feelings of isolation and in my case helplessness, being at the mercy of doctors who are impossible to pin down or as you witnessed, so tired out/disinterested that the care element has diminished to the point where the patient becomes just another number with a scared and nagging relative in tow – horrible that other members of her family have suffered a similar condition”. So why is that? Is it exhaustion and disinterest? Or is it that to do that job you have to be non-emotional to an enormous degree? Or is it that the clever but sociable personality types choose to be GP’s? We can’t expect all the people that have worked unbelievably hard to learn their trade to also have the perfect bedside manner can we, but nevertheless, it’s still very difficult for those concerned.

The great thing about intimate lectures like this at the Hay Festival was that my friend and I were able to discuss our personal concerns about our friend with Maryam at the end of the talk – she gave us some pointers for helping to improve memory again – “do crosswords, read books, write a journal….”

About 9,000 people suffer from a brain haemorrhage in the UK per year apparently although Maryam is of the opinion that she is meeting more and more people who it has happened to…why is that? Because she is more acutely aware of it now? Or because something else is triggering more of them?