Rupture: Living with a Broken Brain

WHOOSHING

ELECTRIC CRACKLING

SHRILL BEEPING

I'm not quite conscious that I nearly died.

And yet I'm pursued by, um...

..this fear of violent death happening again.

I had a subarachnoid aneurysm,

and nobody was around to witness my attack.

I had it in the most banal way. I was exercising on a StairMaster at a friend's,

and it was quite comedic, actually, because when I fell off the machine,

I crawled to the main house of the friends we were staying with.

Well, I was just sort of having, like, shotguns in my head,

these kind of convulsions, and I was just...

I felt like my whole head was going to explode.

For three days...

..I had this haemorrhage in my head.

And I was SO lucky that the blood did not go into the brain, cos I would have died straightaway.

I followed an instinct on day three, as I was getting worse,

and I was misdiagnosed with a viral encephalitis or viral meningitis.

And on day three, I suddenly... An instinct in me told me,

"I don't think I'll survive the weekend."

And I was vomiting and the headaches were just atrocious.

I managed to get to emergency, to ER at Cedars hospital.

You were developing signs of brainstem dysfunction.

You were unable to be aroused, you were not responsive,

and you were beginning to have trouble breathing, for example.

These are the signs telling us that there were really some

structures that were in jeopardy if we did not operate.

I'm on a drip.

It's midnight.

I'm crying.

My headaches are relentless.

I NEED morphine.

I'm in and out of tubes.

It's dawn...

and I'm having a lumbar puncture.

The nurse holds me close to her as they draw the fluid from my spine.

There's blood in the liquid.

The disease is declaring itself. LIGHT BULBS BUZZING

A relief.

Then the fear takes over.

Am I dying?

I remember just being on my own and hearing all the hospital noises

and thinking, "OK, I'm ready to go.

"I'm OK now, I'm ready to go. I don't want this pain any more."

'They're going to operate.

'The surgeon radiates hope.

MACHINE BEEPS 'And, when I'm gone,

'he opens my head to fix the machinery.'

CUTTING UTENSIL GRINDS AND SCREECHES

HEART MONITOR BEEPS

Consciousness.

My brain restores the basic order of things.

Who am I?

Where am I?

I need to pee but I'm too weak to move.

Shifting my limbs is like moving an iron mannequin.

I slump to the toilet seat, exhausted. Bones jutting.

And, there in the mirror, is someone else staring back at me.

Sunken eyes, bruises on her shaven head and an ugly scar.

What HAPPENED to me?

'We are all close to the brink of being someone else.

'The rupture of an artery wall or a lapse of concentration at the wheel of a car

'is all it takes to cause a mind-shattering brain injury.'

'My glimpse of death has left me with so many questions about life.'

'What are we, Maryam,

'and what are we to make of our brief time in the world?'

'And what traces do we leave behind?'

'The body can be dismantled and displayed in cabinets,

'but mostly, we leave no more than our bones behind.'

'And the mind?'

'Fragments of mind can live on through ideas and through trails of memory

'in other people's minds.'

'But what about the soul?'

'Ah, the ghost in the machine.

'And here's the machine - the brain.

'All worlds real and imagined are contained within its folds and convolutions.

'Trees and stars, words and thoughts, and ghosts like us.'

Everything?

'The universe...and more.'

But yet, it's so fragile.

Your brain is very greedy.

It's the greediest organ in your body for oxygen and glucose,

more than any other part of your body at rest.

And the way the oxygen gets to the brain is through blood,

and that's through lots and lots of blood vessels - little tiny bifurcating

branch-like processes leading off from your arteries and your veins

that ensure your brain tissue gets a really constant supply of oxygen.

If something goes wrong, then the brain tissue will die.

And the ways it can go wrong is, for example, with something called an aneurysm,

and that's from the Greek, "to dilate".

So, an aneurysm is a kind of ballooning of a vessel.

And you can imagine if you're stretching and stretching a balloon,

and what happens with a balloon if you put too much inside it? It will eventually burst.

So, an aneurysm is a sign that something may be about to burst,

and if it does, that causes what's called a haemorrhage,

which means that the blood leaks out into the brain and not to the places it's supposed to be.

Well, my view is that aneurysms form very quickly.

May even be in a few minutes, or instantly.

The tear in the artery causes a blow out,

and then they either just sit there doing nothing

or it bursts there and then and the patient presents with a subarachnoid haemorrhage.

The most difficult aneurysms are those which have already ruptured,

cos they're in a very unstable situation.

Even those who reach the neurosurgical unit and have the aneurysm treated,

probably only 30 to 40% at the most get back to their premorbid state -

ie, what they were before the brain haemorrhage -

and are able to function normally again.

TRAFFIC NOISE

You were not to know that your head contained a time bomb.

Many people go about their lives quite unaware

of the potentially fatal defects their brains are harbouring.

Blood-filled bulges known as aneurysms - little time bombs.

If an aneurysm bursts, a form of stroke,

the results are often catastrophic.

Sudden death in about one third of cases,

death within a month for another third,

and severe disability for many of the third who survive.

Aneurysms occur on the blood vessels on the surface of the brain,

so they aren't actually within the brain substance.

In contrast to other sorts of vascular problems like

arteriovenous malformations which exist in the brain.

The risk of having a stroke,

including subarachnoid haemorrhage, increases dramatically with age.

Nine out of ten people affected are over the age of 55,

but anyone of any age can fall victim.

Goang-Jong Shu was scarcely out of her teens.

I graduated sophomore year with flying colours.

I had the highest grade in my classes.

And I was really involved

in Key Club and community services.

And so, you know, I got my permit, my driving permit,

so I was on the top of the hill, and then this happened, so...

You know, my first reaction was, you know, "Why me?"

You know, "Why did this happen?" I was doing fine.

My wife and I have come to a conclusion that it must be

she got too...

..too much pressure from herself.

She was just striving for everything to be perfect.

So the aneurysm in the brain kept growing from one head,

and it kept growing into the three heads,

so it doesn't matter what time it ruptured.

And once it ruptured,

then the result is either...

either...

she will be dying or go in a coma.

-Become a vegetarian.

-A vegetable.

-Vegetable.

-Vegetable.

LAUGHS: Vegetarian!

The artery from which the aneurysm arises is so damaged by the aneurysm

that is has to be completely blocked off.

The problem with that is that it deprives the brain downstream of circulation,

and so in order to protect the brain from a stroke while completely closing off the aneurysm,

one has to do a bypass.

-A 16-hour surgery.

-Yeah.

Personally, I cannot imagine...

a doctor can perform a surgery for 16 hours.

The surface of the brain is here.

We have to open the cleft between two of the brain lobes

and identify this blood vessel.

This will be the area where the bypass is performed.

Now, the clock is ticking when you close off the artery.

You can't close off the brain artery indefinitely,

so we have to work quickly and finish that closure within half an hour,

or the brain is exposed to a period of time

without adequate circulation and a stroke might occur.

The good thing is that children are very resilient.

Their brains are very resilient.

If you can close off the weakness, if you can do a bypass if necessary

to preserve the circulation, their recovery is often fantastic.

And so, for example, if you wanted to pick the glass of water to drink,

how would you do that with your right hand?

Or you would not be able to?

I think I would be able to, but I can use, like, both hands.

Both hands?

OK, so it helps you.

We're very proud of her, taking all this.

And...

..I guess that's what we parents can do.

Aww, making you cry!

I just felt that if I could go through this process,

and if I had the strength to go through it,

then I can endure anything. I can go through anything in life.

-I can feel his heart beating.

-Aww!

They're very, very...

-They've helped a lot of people in recovery, you know?

-Uh-huh.

I mean, he's just a rabbit.

But he's so cuddly!

'There's something wonderful about victims

'who have been through a major operation.

'They really are eager to start again in life

'and there's this sort of, like, childlike quality about them all.

'There's no more cynicism, there's not a judgement.

'And it's heart-warming to see the joy and the humour.'

When you're walking in the streets and the brain's been bruised

and you see people coming at you from all directions...

WHOOSHING ..it's like being in a cinema and you're too close to the screen.

TRAFFIC NOISE The traffic, avoiding, you know, being run over by a car.

Just simple things like that, which are completely normal

and we take for granted when we're... when we're normal.

The brain has a consistency of jell-o,

but it's a fragile,

beautiful, pulsating, kind of a pink structure

with a latticework of very fine vessels coursing around,

with an incredible anatomy of nerves and arteries

and wonderful structures that make up who we are.

You are in the human brain,

you are in the most beautiful structure in the universe,

and that experience is always special.

You realise that you are working close to the artwork of God.

I vividly remember one patient

who had two aneurysms.

We had removed about 80 or 90% of the malformation.

And it was just 10% left to remove.

And the one thing you are always taught

is you leave the draining vein,

the vein that is draining all the blood out, until last.

We cut the vein and immediately that vein, you know,

became engorged with blood and stood up erect and everything,

you know, at that point changed.

And it was the one time in my life I felt that this patient

was going to die on the table.

We just had one chance.

Immediately, we just...with everything we can,

working through a pool of blood, you know, just...almost blindly,

took out the last 10% of arteriovenous malformation.

And miraculously, it was like the clouds parted,

the swelling went down, the bleeding stopped and everything was calm.

Aneurysms do call for a very fine, careful dissection.

It's a bit like bomb disposal work,

except it's the patient's life at risk

rather than the surgeon's.

What's crucial about neurosurgery is not really the operating,

it's the decision-making.

If you get too involved, you can't do the work.

And that is particularly the case, in a way, with aneurysm surgery,

which is this very...

more or less, a make or break operation.

You open the patient's head, you then sort of stalk slowly

and microscopically along the major arteries, underneath the brain.

Then you have this climactic moment when you catch the aneurysm

with a clip and you've got to be very careful

the aneurysm doesn't burst in the process.

If it does burst, then you get an intraoperative rupture.

That's very serious.

There's a high risk the patient will die on the table.

Stop, Dave.

I'm afraid.

Everything about neurosurgery, it's not just life or death,

it's quality of life.

You have even more difficult things, like at the front of the brain,

where damage causes personality change.

And people no longer are the people they were.

My mind is going.

I can feel it.

And what's so weird about that is that the patient themselves

doesn't know that.

My instructor was Mr Langley.

And he taught me to sing a song.

If you'd like to hear it, I can sing it for you.

Yes, I would like to hear it, HAL. Sing it for me.

Many of these people, you know, have suffered social collapse.

They've lost their job, their marriage has broken down

and they're sitting at home on, I don't know, disability pay.

They're intellectually intact but no longer able to function socially.

That's very sad. There's not much you can do to avoid that.

# Daisy, Daisy

# Give me your answer, do. #

The functions of the brain are easily warped by disease and injury.

Memories can be shattered, emotions destabilized.

It's a kind of civil war - body in conflict with mind.

Neil Kitchen is one of the world's most distinguished neurosurgeons.

He is in the process of cutting open a flap of skull bone to gain

access to his patient's brain.

The goal of the operation is to remove a cancerous brain tumour.

He performs his task dispassionately,

like a mechanic fixing damaged machinery.

But this machine, the brain,

is also the vessel of his patient's hopes and fears,

his dreams and his memories.

All that he is.

And consider this,

Mr Kitchen's compassionate skills will at best

grant the man but a few months more to live.

Inevitably, the cancer will prevail.

All this for a few months more, to be with his family.

What clearer confirmation of the value of life?

Than love?

"Do not go gentle into that good night,

"rage, rage against the dying of the light."

Think of what's involved here.

Here is the human brain,

which is a three-pound mass of jelly I can hold in the palm of my hand.

And yet it can contemplate the vastness of interstellar space,

it can contemplate

the meaning of infinity and of numbers,

it can even contemplate itself contemplating,

what we call self-awareness.

It can start introspecting on itself and raise profound questions about

the meaning of its own existence and why it has arrived in this cosmos.

To contemplate the brain is to enter a hall of mirrors.

We are looking in at ourselves looking out.

Looking in, looking out.

That is the curious thing about brain science.

The object of study is also the investigator.

I am my brain and I am not my brain.

I am not my brain, but I am nothing without my brain.

As the Bard said, "I could be bounded in a nutshell

"and count myself the king of infinite space."

The human brain consists of 100 billion nerve cells.

Each nerve cell makes something like 1,000 to 10,000 contacts

with adjacent nerve cells.

And each point of contact, called a synapse, can either be off or on.

So, this gives you some idea of the staggering complexity of the brain.

The number of permutations

and combinations of brain activity, or brain states,

exceeds the number of elementary particles in the known universe.

The human brain can explain the ghostly interior of an atom,

but it cannot fathom its own ghostly interior.

Consciousness remains a profound mystery.

It seems absurd that self-awareness can be conjured up from meat,

a lump of proteins, fats, sugars and salt.

So, what am I? Thing?

Or thought?

You are both.

And neither.

But I am a person.

A flimsy construction, fragile as a bubble on the breeze.

It's highly unlikely we have souls.

-It's highly unlikely there's an afterlife.

-Why is that?

Well, because I said,

if you've seen people with frontal brain damage...

Yes.

..it's very hard to believe that somehow when they die,

it all comes back again. It doesn't make sense.

We can't get our heads around death, that's the thing.

We can't conceive...

Well, if you think that there is some, you know,

heavenly theme park that we go to when we die,

and I find that really hard to imagine,

who do you meet there? What do you do for the rest of eternity?

But that aside, if you don't believe that...

..um...

..how can you imagine nothingness?

Everything that we imagine is built on something-ness.

Which is maybe one of the reasons, you know,

that we shouldn't be afraid of it.

If there's nothing that we can imagine or experience,

then there's nothing to be afraid of.

I'm not actually scared of death,

you know, like going to sleep and not waking up,

but I am scared of the violence before dying. The pain.

That physical pain.

And I think that the fear of it happening again is part

of the trauma, and I think it's part of the trauma that a lot

of brain-injured suffer from.

Even though they might be happier in rejoicing in their new life,

you know, but there is that fear.

For the fortunate few who recover without major disability,

the close encounter with death can be terrifying.

And often life changing.

In the world's killers,

after heart and cancer,

it's the third biggest killer in the world.

I mean, of 150,000 people who have a stroke in Britain this year,

one third will die.

Roughly. And another third will be so badly disabled

that they will never work again.

One of the things about affliction to the brain is that no-one...

one doesn't know much about it. I didn't know a thing.

I didn't even know what a stroke was.

And I was 42 at the time, so I should have known.

But there had never been one in my family, I had never seen one.

As far as I... Now, of course, I am very alert to them.

And when I came home, I just felt very unwell and I made

a cup of tea and went to bed.

Whenever I woke up the following morning,

I was completely paralysed down my left side.

And I had had what was called a right hemorrhagic infarct.

The right side of the brain goes to the left.

I was very fortunate, because if you have a left side,

you lose language, you lose speech.

And I had none of that. I have a slight stammer as a result of it.

The stroke itself took place in what is called

the basal ganglia in the brain.

Very deep.

And it's the bit which controls the tongue,

so, for example, right now, for instance,

I'm having to think quite hard about speaking,

which I wouldn't have done before the stroke.

When I was in hospital, my left side was complete...

I couldn't stand. I was in a wheelchair.

And, um...

For a long time, for about three months,

it looked as though I'd spend the rest of my life in a wheelchair.

But, you know, my life before the stroke feels like another life.

It feels very remote.

And it feels like something I've lost.

-It's a loss?

-It's a loss.

So, I think part of when I think about anger,

it's partly the anger of bereavement,

self bereavement.

Then the other thing that I had to do is that

I had to find a way of dealing with the depression,

because I think one of the things is you get very depressed,

you know, depressed at the loss of, you know, one's old life.

I felt very ashamed and very, very overwhelmed by that.

And very nervous. And awkward.

Even meeting old friends, it could sometimes be very difficult.

Well, you're a writer, and I think it's great,

great news that your mind has not been affected.

I've got my language, I've got my words and I've got my right hand,

so I can always write with my right hand.

I did feel, and I wanted to express myself,

I wanted to express my story, get it out.

And so, in some ways, I think the effect of the stroke was

to sharpen my desire to write, to be creative.

I had to kind of except it. I wrote a book about it. And then move on.

A really interesting feature of a stroke

is that very frequently people have partial

and sometimes complete recovery.

I know this from my own father

who had a stroke, oh, about now 15 years ago.

It was really very extensive, the damage.

And then, within a few weeks, he started to recognise people.

And then, amazingly, he has now got his driving licence back,

Not that he's allowed to use it, because he's 95!

So I've seen first hand how brilliantly

and how quickly the brain can recover from a stroke depending

on the extent of the damage and where the damage is, of course.

The more a brain cell is made to work,

the stronger the connections between other brain cells will be.

So, if you are suddenly making other brain cells work

because some have died, then they will make connections,

and that can be part of the so-called plasticity

of the brain, its ability to recover.

In addition to phantom pain,

people have also applied this technique to treating strokes.

You can make a phantom limb appear to move,

that alleviates phantom pain.

What about after an actual stroke, which causes actual paralysis?

Some of this paralysis is due to permanent injury

to the nerve fibres going from the neural cortex

of the right side to the arm, down the spinal cord into the arm.

So, there's not much you can do about that.

Those fibres are permanently damaged.

But maybe some of the paralysis is a temporary paralysis caused by

a temporary block of nerve signals going from the motor areas

of the brain to the arm.

So, on a hunch, we said, what if you put a mirror and have

the chap look at his reflection of his normal arm in the mirror.

So it looks like, when he makes a command,

that the paralysed arm comes to life and starts moving.

Obviously, it's not actually moving, it is lying paralysed.

Astonishingly, it gives the illusion that the paralysed arm is moving.

Many of them break into tears until they look on the other side

of the mirror and realise it's not moving.

But then, with repeated practice, the arm actually starts moving,

a paralysed arm.

Not in all the patients, but in about one third.

I claim that some of this which we regard as permanent

is actually temporary.

There are cells that are dormant there, inactive.

Using mirror feedback, you can revive the function

of these cells so the patient actually starts moving his arm.

Now we believe there is hope.

Now we believe we can teach the immune system how to

turn on those signals to regenerate those areas of the human brain.

It's very similar to if you imagine that you get a cut on your hand,

it is actually your immune system that tells your skin stem cells

to either turn that area where you were cut into a scar

or to heal it and regenerate it so that you never see the scar.

So, we are beginning to understand that the same process

occurs in the human brain.

And the more we understand about those immune cells, the more we can,

hopefully, direct that regeneration in the direction that we want.

Now, I think an accident

of whatever level that gives you this kind of disability,

um...

makes you appreciate more life and be less sort of anxious

about making it.

So, show where they operated.

They took out from... they went in first...

-My first operation was just to go in and clamp the aneurysm.

-Mm-hm.

So they took out some of my skull here, went in, clamped it

then put the skull back.

And now... That first operation I had tubes coming out,

but, you know, just a little scar.

So, you had one big aneurysm.

I had one big bleed.

That was operated on, clamped. That was on a Friday.

Then Saturday came and they were doing the cognitive question

and answers, they were watching my pressure.

I did not remember this at all. It's the only part that...

-I guess I started to slip away.

-So why?

Why did you have a second operation?

Because my brain started to swell and so the pressure

in my cranial area was, you know, being affected,

and that's very dangerous.

So, they had to do an emergency surgery to remove

half of my skull to allow my brain to swell.

So, what they did is they opened up from here all the way back

to here and they removed pretty much this half of my skull here.

From here.

And they stored it... and they stored it

in my abdominal wall.

This is a model of a patient's skull who had a fall.

So, at surgery, we had to remove a good-sized piece of the skull

and remove blood there.

And the patient had a fair amount of swelling and some trouble,

so we had to leave the skull off.

So, you have either the option of trying to keep the piece

of skull, like store it in the abdomen,

like in this layer under the skin where it can stay vascularised...

Some places will store the bone in a freezer

and then it can be re-implanted.

The disadvantage of that is it tends to kill a lot of the bone cells

that are in there.

Then I came home after that to recuperate for about two months

and then go back and put the skull back.

And so, when all that is kind of,

"OK, well, we're going to put you back.

"Before long, it's going to grow over.

"You're not going to even see your scar."

I kind of have a sense of loss

because I feel it was a gift that was given to me.

Now, how long has it been since the third operation?

It will be...

Oh, it was July 1, three months today.

You know, it's a new normal, and it's finding your footing,

how you can, you know, feel like...

I want to go back out into the world.

I have a lot to say.

I am so grateful, you know,

that I want to be able to be this very productive person now.

Not that I wasn't before, but now it's just different, now it's new.

Everything is... I want to look at everything.

Everything looks so beautiful.

Maryam is my wife.

And I experienced her whole saga

of her headaches for weeks and weeks

and weeks and then this violent attack that she had.

And it was terribly important that I didn't convey my pain to her.

And this is something that often is forgotten about - families,

husbands and wives, children of the brain sufferer.

You can't transmit your fears, you have to be positive,

you have to be up, you have to boost the morale

and show hope where often there may not be hope.

It's a very, very, very painful thing.

It was a sensation unlike anything I have ever experienced, obviously.

It was almost a sort of out of body experience.

It was as if the life was being literally sucked from me.

It was as if my body was made of tubes

and a great vacuum inside of me was actually sucking life out.

I remember saying to Bella,

"If I faint, I won't come back."

Because I had the feeling that I was on the edge of some...

something very extreme, you know, and very worrying, very alarming.

And I called the doctor immediately

and he called back and said, "I think you better call

"the ambulance just in case it's a subarachnoid haemorrhage."

Which is what it was.

Your prospects are pretty low, I mean, it's something like 10%

or less of survival.

And there are various factors in this.

I mean, not only is it the bleeding that can kill you,

but the operation can kill you.

And then, as I discovered,

this extraordinary operation they did, which was to float

a piece of titanium from my groin through the blood vessels,

up into my brain here, through the tiny little filaments,

and then release a spring and so on. I mean, incredible.

And this has its dangers because as they're doing it, bits of artery,

I'm afraid to say,

can chip off and float down and block your heart, give you a stroke.

That's part of the 10%.

Then you can get, you know, for a week you can get

sort of a brain reaction of shock and spasm, which also...

So I...you know, I won that lottery.

And it made me think various things.

One, I'd completely dropped any regrets about my life,

you know.

You know, ideas that, you know, I could've done that or

I should've done that or I should have been a New York correspondent

or I should... You know, forget about that.

The idea was that you'd actually survived, you know,

and, you know, he and I could play.

Wonderful. So, it was a bit like the Samurai.

You know, the Samurai warriors have this Zen thing which is that

because imminently they might be cut down in combat,

every breath is a sort of elixir, a sort of wonderful thing.

And I completely understand that,

and I do get that sort of feeling, you know.

And I... Almost always when Jimmy says we should play, I say yes,

except when I'm, you know, downtime.

Yeah?

And now you are writing a book.

Yeah.

Which is about a man who's having a brain aneurysm.

I am, indeed. I know, we both...

Both my gentleman, as I call him,

and I have a piece of titanium in our heads.

Keith Richards has got a piece of titanium, but bigger.

He's got a sort of plate.

-Oh, he's got a plate?

-I think so.

-And you have a little...?

-I have a tiny, little titanium coil.

-It's a coil, OK.

But the titanium club is an exclusive club,

which you belong to, as well, I think.

I think I have changed since the operation.

Definitely, there's no question about it. I mean, I am much more...

I'm much more emotional...

..now. And I think because I'm more touched by...

by pain in others, definitely.

I am more succinct with it, I am more connected with it.

This is Monty.

He had an AVM when he was eight years old.

And here he is with his dog, Jack.

I was just playing sport, I was running around,

and then I got a headache, so I sat down.

And then I asked if I could go to the nurse.

And I just went to the nurse and suddenly I just puked and fainted.

-So, it was really quick, it happened very quickly?

-Yeah.

And then I just remember one little scene of me having a mask on

and the doctors, like, bringing air in.

-Trying to revive you?

-Yeah.

We had to wait for scans and...

-So you had no idea what was going on?

-No.

They did an MRI trying to see what was the next step.

They knew that there was a bleed, a big one,

but that was all we knew. We didn't know why or how.

It wasn't initially apparent what had caused this bleed,

so we took him to the angiography suite, did in angiogram

that demonstrated an AVM, an arteriovenous malformation,

which is an abnormal connection between the arteries and veins

on the surface of the brain.

The way I embolise an AVM is to go in the artery in the groin,

put a catheter up into the main arteries to the brain in the neck,

and then through that, put a second micro catheter

about half a millimetre in diameter into one of the arteries

going into the AVM itself

and then inject some kind of liquid that mixes with the blood

and sits to form a plug filling the abnormal vessels

of the AVM and stopping blood flow in the AVM.

There are two main things I use - glue,

where I inject a mix of the blood and it sets and forms a cast

or onyx, which is a kind of rubbery material which I inject slowly,

watching to see where it goes within the AVM.

If I'm happy where it goes, I keep injecting it and it will gradually

fill the nidus of the AVM, the network of vessels of the AVM.

And if it starts to go toward one of the arteries that supplies

the normal brain, I'll stop, wait,

let it sit, and then start injecting again,

hoping it goes back in the direction I want it to.

What would you want the most right now?

Um...

To see my dog.

What do you think it is about an animal that helps?

Well, they are very loving and caring.

Are you both inseparable?

Yeah.

-Do you miss him now?

-Yes.

-You want to go and play with him now?

-Yeah.

My brain haemorrhage was a glimpse into this other world,

but now I am so much more aware of other forms of brain damage

and how crushing the effects can be.

And how invisible it is to others.

Yes, that's true.

Problems with memory and concentration

or changes in personality are not immediately obvious.

If they don't have conspicuous disabilities,

the brain injured go unnoticed.

And misunderstood.

It is across the board, every aspect of the person's life,

from their social, intellectual functional, vocational...

Every aspect of their life is affected.

And it's invisible.

Sherrie Baehr who has initiated this charity called the Silver Lining

that belongs to them, to those brain injured,

and they have to raise money for their own charity.

And with that money, they go

and help other people that are more disadvantaged than themselves.

And it re-engages them in life, gives them a focus, a purpose,

and they feel useful.

I think one of the biggest problems I've had

since the accident is it was never properly followed up.

And I had the injury, I was in hospital for quite a while,

and then they just let me go. And no-one saw me.

Until I saw Sherrie last year,

no-one spoke to me about the car accident.

So, I spent grammar school thinking I was really quite stupid,

with memory problems, etc.

And I never knew it was because of my brain injury.

People tend to get burned out after a while.

Because the progress in brain injury is so slow.

Why is that?

Well, the brain heals itself very slowly.

Is that why a lot of brain injured then sort of get into depressions?

-Because they're not seeing a progression.

-Absolutely.

OK, when I was 21,

I got hit by a car and I fell back.

Fortunately for me, I broke a windscreen,

cos I hit the left-hand side of my brain,

so that affected my speech.

Because I often think, if I hit the right side,

my speech would be normal,

but then maybe I would forget things

or maybe... It would be so different.

But no, it's... You know.

So, that's why I sound drunk, and I'm not.

Return to previous social relationships is not possible.

Family relationships are often very changed.

And what people naturally do is you don't really want to be

around someone that you have problems with all the time.

I was assaulted and somebody stabbed a snooker cue

through my right eye socket,

through my brain, to the back of my skull.

It's quite an abstract thing to sort of come to terms with,

a brain injury. It's slightly nebulous.

Confidence is a major issue afterwards.

And sort of, self-identity even.

Ed has spent, and I hope I am not over exaggerating,

but the last ten years hardly getting out of bed.

Not engaging with the community or life at all.

And Ed is quite an inspiration for the Silver Lining for me

because when I saw Ed in Namibia,

he was the first one up in the morning.

Yeah, Namibia was just a wonderful opportunity to,

instead of, I guess, being brain injured,

feeling like a bit of a burden on the state,

it was nice to be able to sort of help other people

and give something back.

And, uh...

The children we met out there were just a massive inspiration,

full of life and joy, despite very meagre circumstances.

It can't be easy being an orphan in Africa.

So, yeah, that was... That was a real privilege.

Of course you give hope, you have to give hope constantly

to the sufferer,

to the injured person,

who is in a kind of desert of his or her own,

as they struggle to find a way out and to live.

And then it occurred to me,

a memory that I had of when I was working in Africa over many years.

I'd been to the Namibian desert, where the desert elephant,

who moves in a family group out of this barren land.

And this mammal, this largest mammal on earth,

has the ability to feel, to suffer, feel grief and pain.

They show hate and they show love, like us humans do.

But they also have the most incredible memory.

And that memory serves to cross these vast,

barren landscapes

to return to an area they remember they'd found water,

maybe 10 years ago.

And it allows them, this memory allows them to live.

I remember my husband telling me things after my operation

and I wouldn't understand what he was saying.

The words were familiar, but their meanings would evaporate.

And I couldn't make the connection between the thoughts

and the words, and then I couldn't retain what he was saying.

So, it was a real, real battle with the memory,

and I was feeling awful,

as if I'd become stupid.

How does the meat of the brain give rise to the mind that we experience?

How does memory, perception, language, problem solving skills,

control of action,

how does it all come together to produce this unified sense

of self that we all experience?

GUITAR MUSIC

I had a great deal of anger in me,

for what I referred to at the time

as misdiagnosis. To have been diagnosed

as a manic depressive

when I was suffering from birth AVM, arteriovenous malformation,

was very injurious at the time.

I thought it was injurious.

There's a whole legend that has been built up around Pat.

We have this great guitar virtuoso,

a prodigy who leaves home in Philadelphia as a 15-year-old kid

and goes to live in Harlem and plays with the jazz greats.

That in itself is a pretty remarkable story.

He then begins to have psychological problems.

He then develops seizures.

And in 1980, at the age of 36,

he has a life-threatening brain haemorrhage,

which requires pretty drastic surgery.

And that's where the legend really starts,

because then he completely loses the ability to play the guitar.

Not knowing who I was, not knowing how to play,

being told that I should play my instrument again,

being told that I should do this and I should do that,

and this person is who you are,

all of those things I was told were very painful because I feared not

being able to live up to the overall description that others gave to me

of that person.

It took me 17 years to play the instrument again.

He certainly lost the motivation to play.

I think he was, for a while, a lost soul.

He'd lost his sense of identity.

He didn't recognise his parents, he didn't really know who he was.

It takes a long time for him to even pick up a guitar again,

despite the encouragement to get him back to his old self.

And eventually, he relearns the guitar from tuition videos

from a great teacher, his former self.

In a sense, the legend is intact.

It is a remarkable story that he did have this period of loss

of identity.

So the idea that he completely lost the ability to play

was never...was never probably true.

What he wouldn't have lost is the sort of the dexterity,

the movement of the fingers over the fretboard,

because those parts of the brain were not affected.

When you remember your life story, that is known as episodic memory.

When you remember skills, like knowing how to ride a bike

or play the guitar, that is known as procedural memory.

Memory is obviously a huge topic,

and it is a major commitment of real estate by the brain

to manage all your lifelong memories

and have a really efficient filing system so that you can access

that memory rapidly.

It's amazing to see Google do that.

So, you type in some obscure thing and you instantly get this answer.

Well, the brain does that a million or a trillion times

more effectively, and we don't know how.

Someone who is injured and loses their ability to form

new memories, they don't have short-term memory,

they can remember what happened before the injury

because the machinery that put those memories in place

was functioning then.

That machinery is somehow damaged by the injury.

They can't put new data into the filing system.

There are things that the human brain does that is incredible,

that is very difficult to measure.

How does one measure creativity?

Our ability to see, our ability to speak, our ability to think,

our ability to create,

our ability to ask the questions that we don't understand.

It's hard to assign that to a particular region of the brain,

so my view has always been it's that something extra,

that something special that those vast areas of the frontal lobes

and temporal lobes are actually performing.

When Herbie Hancock, you know,

composes a great piece of music, or Quincy Jones.

Yeah, I mean, one can remove large areas of one's brain,

but can you still get that type of creativity

without those areas? I doubt it.

Can you describe what happened to you in 1974?

Well, something that I'm sure both of us hope never happens again.

I guess I was 41 years old and all of a sudden I blank out,

double vision.

When I come to, I feel like somebody had shot my head off with a shotgun.

And you had it at what moment?

Well, I was being intimate with my wife, you know,

and I had been up for two or three days writing music.

And we were lying there that afternoon

and one thing led to another, and, bam, I was out, you know.

For seven days, they couldn't figure out what it was.

Thank God my doctor was a genius. She was a very special lady.

She is one of the ladies who worked on Einstein when he was dying.

She said, "I think I know what it is, but before we do it,

"we have to cut the throat and put in two pipes at 32 degrees

"to cool the brain down because it is inflamed and if we open the top,

"it'll jump out the top."

All this talk, I don't need this, you know!

I don't need to hear all this stuff.

They told me the odds were 100-to-1 to live,

-that makes you feel real good.

-Yeah.

And they came back in after the operation and said,

"The good news is you'll live, the bad news is you got another one

"on the other side and we have to go back in two months."

So...

A lot of the things I'm glad I missed in the first operation...

For instance, before I go in, I'm looking and I see a bag down there

in my stretcher and I say, "What's that?"

They said, "That's your hair. If you don't make it,

"we put it back on so you look good in your coffin."

THEY LAUGH

For the second operation, my whole left side was paralysed.

Did you find that the experience, the near-death experience,

and going through all of that really painful journey

made you discover something new in your music?

The essence, I think, stays the same.

It's just your passion probably steps up

six or 17 marks, you know,

your passion for being able to write music, to express yourself, because,

you know, everything in life, the value just goes straight up.

You know, just everything, your relationship with your family,

your friends, everything becomes more important.

You are more careful about everything,

you just care a lot more.

What did the doctor say to you when you had your operation,

that you were not allowed to do in music anymore?

The first thing was I could never play my horn anymore.

Only with just the physical idea of blowing with that kind of force,

it could blow the metal cap off of the brain and you would die.

That's not... It doesn't take too long to think about that.

I can't play in front of you, ma'am.

-So we are brothers and sisters in this.

-Yeah, exactly.

-I am also very blessed.

-Yeah.

-Very blessed.

I don't believe in God, in fact I'm the other extreme,

I'm an atheist, not because I don't believe...

not because the brain-mind continuum aspect,

it's just that I have seen so many bad things happen to people.

Be afflicted with so many bad things,

or left in such a damaged state or such human tragedies

that I cannot conceive that a god would want that.

-I agree with you.

-That's the reason why I'm an atheist.

COUNTRY MUSIC

There has to be joy and laughter,

which is what we experience at the Royal Hospital

of Neurodisability, watching some of them dance to music.

It's...it's touching to see them really have pleasure.

You find there's joy.

There's despair, too,

and hopelessness, let's not forget.

For some people, disability is just overwhelming.

And that's the saddest thing.

We should never despair.

Jane, can you tell us about Jeffrey?

Yeah, he was previously an inspector of taxes,

so he is quite high educational level, really.

And the results of his brainstem stroke are that he is paralysed,

or partially paralysed,

but he is still cognitively completely intact,

so he understands everything you say to him, ask of him.

Sometimes he finds it difficult to respond to things

because of his communication difficulties.

He's only got his eyes that he can actually communicate with.

This is like a therapeutic exercise, OK?

So don't worry too much about the game content.

Lift that hand up. Up, up, up, up, up.

Yes. Keep going.

Yep. Brilliant!

OK, Jeffrey, are you OK?

You OK to carry on? Can you give me an eyes up for yes?

'To be or not to be...

'..that is the question.

'Whether it is nobler in the mind

'to suffer the slings and arrows of outrageous fortune...

'..or to take arms against a sea of troubles.

'And by opposing, end them.'

My very first clinical placement was at a neuro rehab hospital.

And one of the very first patients I came across was a boy

who had walked into an empty lift shaft

and had sort of fallen, I think it was three floors,

and very nearly died.

This was my first encounter with that kind of really severe disability.

I was absolutely shaken by it.

And I felt, you know, why? Why let him...?

Why should he live? It's not fair to him or his parents.

And he looked absolutely destroyed and distressed.

He was in a hell.

And then I was around one day when his mother came in

and she sat with him and cradled his head in her arms

and he was a different, you know...

The whole was greater than the sum of the parts.

He was different.

There was something there that came through as a consequence

of his mother actually being there with him, holding him.

-Jeffrey understands everything I'm saying. Don't you?

-Yes.

-Yeah.

The additional problem that Jeffrey has is that he hasn't got

complete control of his ocular muscles,

so sometimes when he tries to move his eyes in one direction

they don't respond to what you want them to do, do they either?

Which is difficult.

Obviously, to be able to move his hand,

it might seem like a very, very small step to other people,

but it's a huge step for him, because when he arrived here,

he was completely paralysed and could only move his eyes.

'He's starting to see now improvement in himself

'and he's starting to think that he can achieve things.'

OK. Don't wear yourself out.

You do too much.

'That is the question.

'To die, to sleep. No more.

'And by a sleep, to say we end the heartache

'and the thousand natural shocks that flesh is heir to.'

'Tis a consummation devoutly to be wished.

'To die, to sleep...

'..to sleep...'

When you see sufferers, however severely disabled they are...

..experience joy for a couple of seconds,

you realise that it's worth helping them.

And when you see these extraordinary, you know,

therapists like at the Royal Hospital of Neurodisability,

who are there,

dedicated to the brain injured, it's definitely worth having a life.

About two years ago,

Marc was having some headaches,

not feeling very well,

and it was diagnosed

that he had a tumour.

He went into hospital to have the tumour removed

and that all went absolutely fine.

But unfortunately, while Marc was in hospital,

he got meningitis,

which was actually what the cause was of Marc's difficulties.

Which one did you enjoy most?

I'm going to get you to type out which one you enjoyed most.

'D...

'O...

'C...

'K...

'Space.... Dock....

'Of...

'The...

'B-A...

'Y...

'Dock of the Bay.'

PIANO MUSIC

# Sittin' in the morning sun

# I'll be sittin' when the evenin' come

# Watchin' the ships roll in

# And then I watch 'em roll away again, yeah

# Sittin' on the dock of the bay

# Watchin' the tide roll away

# Sittin' on the dock of the bay

# Wastin' time

# Sittin' on the dock of the bay

# Wastin' time. #

APPLAUSE

Did you enjoy that one?

'Fantastic.'

# I'm sittin' on the dock of the bay

# Wastin' time

# Look like nothing's going to change

# Everything still remains the same. #

Everybody has had their personal journey, but they've been through

this place where the brain has been very affected and has had to try

and come back and there is an openness to try and help those

who need help.

And who are isolated, as well.

When I left the hospital, everything was in slow motion.

And I spent four months trying to kind of get back into life.

And I remember there was a school a couple of blocks away

and there were kids playing basketball

by the school and I just remember...

..I remember watching them...

..and thinking...

.."Never take your life for granted again."

Because they were running...

..and it was so healthy.

And I thought, "Never take your life for granted again."

And that memory serves to cross these vast, barren landscapes,

to return to an area that they remember they had found water,

maybe ten years ago.

This memory allows them to live.

It wasn't quite what you expected, Maryam,

you pictured scenes of personal tragedy and hopelessness,

the anguish and sorrow of profound disability.

Well, that can't be denied.

But normality has a habit of seeping through,

and more than that, vitality, a sharpened sense of the value

of ordinary things,

of the sheer privilege of being alive.

Who knows if we'll ever fathom the mysteries of the brain,

the thing is to appreciate the fragile wonder of it all.

Down to the last breath, down to the dying embers of consciousness.

Life is good.

We forget that.

I could hold my brain in my two hands.

It is the size of...

It's like a handful. It's like a handful of porridge.

And that brain is

my gestures, my personality,

my beliefs, my movements, everything.

My entire life is in that handful of porridge.

Of course there are ups and downs, you know.

I can't say I was always cheerful every time,

but, um, I mean,

that's where my parents come in.

They've always been a strong supporter, my number one fan.

A lot of people would be like, "Are you out of your mind, a gift?

"You nearly died!" But I didn't.

You have to really understand

and become a master

at how to live with joy and enjoy joy.

Living for the day thing, much more I have that.

I'm much calmer about that kind of thing and I'm appreciative.

I do get great flashes at the pleasure

of kind of being alive, seeing things, seeing the river,

seeing the spring, seeing all that stuff.

I get a great sense of relief and intensity about that, you know.

The greatest thing for me at this point in my life

is when a little sparrow lands on the windowsill

or I can see it and I can hear it sing.

I fall... Anything that helps me to get back to love.

Subneuroid acro...

What did you have?

A sub... I don't know how to pronounce it.

That's my thing, my brain is...

I don't know how to pronounce anything now!

Subarachnoid...

-What is the second part?

-Aneurysm.

-Oh, aneurysm.

Subarachnoid aneurysm. Subarachnoid aneurysm.

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