I overheard this lady at a party in Toronto just over a year ago.
She was telling the tale of a recent
illness. That's not the sort of thing you really want to hear
about over dinner. It's often off-putting,
it's rarely interesting, one occasionally listens out of politeness.
I was engrossed.
So were my fellow diners.
In this proposal I shall give you a flavour of the story, touch upon
some of the questions raised and
indicate how the programme would be made.
It all began way before it was diagnosed. Her eyes were playing
tricks. It was as if she were peering
out at the world through lace curtains...
[At the mention of peering through lace curtains, we might muffle the
sound somewhat - unless there
is any significant risk of alienating the listener - probable solution,
do it briefly, perhaps using a swirly
synthesizer, and explain what's happening immediately afterwards. {Practical
note: I have a good
swirly synthesizer attached to my Protools editing system}].
Erella mentions another of her symptoms, such as the appearance of
great purple welts on her belly...
Aware that something glandular might be going on, Erella had a series
of appointments and tests with
an endocrinologist, who surmised on their final encounter that she
had "a macro-adenoma at the base
of her hypothalamus" - and promptly left!
Given that she had been having troubles down below, she thought it must have been a womb thing.
Erella was working as a creative designer at one of Canada's buzzing
new multimedia companies,
Digital Renaissance. As I'm sure you know, in a multimedia production
one typically begins at the
beginning and continues until one is sidetracked by a link or an underlined
keyword. At that point
one has the opportunity to learn more about the element in question,
to see an illustration, to hear
a clip that complements the original text, the linear narrative.
So it will be in this documentary, there will be times when we click
on a link for a clear explanation
of, for example, what the hypothalamus
is and does....
Click:
The receptionist asked her, in full voice, in front of 30 other patients
pretending desperately not to
listen, when she wanted to see a neurosurgeon about having her brain
tumour lopped off.
That was the first she'd heard of the faintest possibility of her having
a brain tumour.... not the sort of surprise you're expecting on a Monday
afternoon just before a dental appointment. Needless to say she gave the
dentist's a miss.
She was back to see a brain surgeon a couple of days later.
"So he explained that I had a brain tumour, that it was about the size
of a golf ball, that it needed
to come out within two weeks. This was St Mike's;
the surgeon's office looked out over the street -
and I was looking out through the window, onto the street, and I've
never seen anything like it. There
were all these people walking around with bullet holes in their foreheads,
exactly where my tumour
was situated. What a bizarre trend, or am I really going crazy,
I'm hallucinating, I'm projecting, I'm..."
That's a tough one to work out, unless you know that it was midweek
on a beautiful, early spring afternoon.
Through the surgeon's window you could see the crowds of worshippers
radiating
away from their church, the symbolic ash of the tautonymous Wednesday
staining their brows.
The surgeon suggested cutting her head from ear to ear through the hairline,
boring through the skull
and attacking the tumour from there.
Erella wanted a second opinion.
It appears that when it comes to brain surgery one is not supposed to
get a second opinion. It is no
coincidence that there is a litany of sarcasm relating to practitioners
of brain surgery. Brain surgeons
are indeed special. One does not wish to be seen to be playing one
neurosurgeon off against another. To
discourage the practice further, some neurosurgeons operate a system
whereby you have to pay a $100 booking fee to retain
your specialist, even if you are just a single mum with a brain tumour.
For your info she had a second and a third opinion (and they didn't
cost her - many fine neurosurgeons don't operate that system).
Of course the trouble with second opinions is... you get a second opinion.
Number two suggested going in through the nose,
number three thought it would be better to go through the mouth.
Whatever. First she needed an MRI.
Click:
"MRIs are no picnic, they're no fun, they're almost as awful as the
brain surgery. You're locked inside
a cylindrical coffin, not moving, for about an hour. Your ears
are padded and your head is fixed in
a gurney, you cannot move. you can hear your own breathing and the
blood rushing through your
veins. Every second is an eternity and you're in there for an
hour. And you don't know how long
an hour is because you're in a coffin."
Unaware of this, she asked for an MRI on the spot. She was also
unaware of the waiting list in Ontario.
It was March, the next standard appointment available was October.
As she was a high priority case
she was offered a scan in June. So much for the two weeks. Had
she been a cocker spaniel it would have been a lot easier to access the
Ontario scanners.
Two days later she had a call at 7.30 in the morning, from a friend
who told her to switch on the radio.
It was an interview with someone from an MRI clinic in Tonawanda, near
Buffalo, New York State... She called 411 and found their
number.
"How soon can I have an MRI?"
"How about tomorrow... ? It'll be 1200 bucks, US."
"Do OHIP pay?"
"No, not unless there are exceptional circumstances."
"How exceptional?"
"Pretty exceptional."
"How about for a single mum with a four year old daughter and a brain
tumour?"
"Probably not exceptional enough. You'd have to like, not be
able to have a Canadian MRI. Then
maybe."
"What's the difference between a Canadian MRI and a Buffalo MRI?"
"Canadian ones are like coffins, ours is more like a tent. "
Erella developed claustrophobia...
Funny story follows telling of organisation of trip to Buffalo.
We end up in Buffalo, under the scanner,
where the technician kindly offered to play her some music during the
scan, as it's an uncomfortable
hour. Unfortunately it was George Thoroughgood warbling "One Bourbon,
one Scotch, one beer",
so she's lying there wanting to scratch, move and strangle the (already
partially strangled) singer...
[we can crossfade from a burst of the music to a description of how
the MRI actually works].
When she saw the MRI print-out she was astonished, it was so pretty,
you could see all the slices of
the brain and in the composite image the tumour looked like an
egg. Being an artist, she commissioned
a second copy of the scan so that she could use it to make a lampshade.
Looking like an egg was a good thing. It was smooth, self contained
and benign. Not only was it not invading the brain, it was actually not
inside the brain, but had instead erupted from the pituitary gland, a tiny
pea-sized gland that protrudes from the aforementioned hypothalamus.
It was still dangerous because of its size and the chemicals it was
leaking into her system; if not removed it could kill her, if not removed
soon it could blind her
The shenanigans that finally led to the scheduling of her surgery
with her chosen surgeon are
amusing and disturbing. Luck and misfortune played their part.
It was a good job she'd got a second
copy of the scan (for the lampshade), otherwise she truly believes
she'd be blind now. I'll save it for
the show (and then watch it get cut).
In hospital her friends and little sister read to her. If you
remember, her eyesight was one of the first
things that began to suffer. There was nothing actually wrong
with her eyes, it was just that the tumour
was pressing upon (possibly growing on) her optic nerve and messing
up the signal. Don't forget
that we don't actually see with our eyes. We see with our brains.
We pick up signals with our eyes.
These signals are sent as electrical impulses to the great big lump
at the back of the brain called the
visual cortex, which processes them and, to cut a long story short,
turns the signals into visions.
The electrical impulses travel along tiny optic nerve fibres.
There was a great big golf ball sized lump
of extraneous matter squishing against these fibres - the signal wasn't
getting through properly - she
could no longer see properly.
When Erella refers to the books her friends read to her in hospital
to keep her going we shall hear
pertinent excerpts of these works (subject to copyright clearance).
One of her favourites was an excerpt
from Kalil Gibran's The Prophet:
...pain is
the breaking of the shell that encloses your understanding.
Even as the stone of the fruit must break, that it's heart may stand
up in the sun,
so must you know pain...
People also read to her daughter Celeste from children's books.
Funny how children's books can
have an effect on adults too. [More scope to play with ideas about
life and death, about brain and thought,
about the number of fairy tales that involve children with no mothers,
from Cinderella to Pinocchio,
Beauty and the Beast to Bambi].
The spine of the programme is an edited interview with Erella, in which
she relates her story (which
is genuinely entertaining) and reveals what was going on inside her
head, from the waves and growths
and blades to her fears, observations, dilemmas, discoveries and deepest
thoughts.
She is an animated speaker with a good voice.
It will be recorded on DAT in a relaxed atmosphere in a soft, acoustically
controlled space.
I shall also draw upon her journal for the period most of this experience
took place.
When she refers to her work we shall hear from a number of articulate
and erudite colleagues at what
was Digital Renaissance, now Extend Media, about the processes she
was involved in and about how they watched her
change before their very eyes.
We shall hear from her forthright mother, watching her daughter mutate
and suffer before getting
better and from her doctors who were not always sure what was wrong...
(Addendum: on the CBC's suggestion we were also able to record a genuine
pituitary operation, thanks to the kind surgeon who performed Erella's
operation). He gave me a fabulous tour of the inside of the head
and the route taken to reach the tumour.
We could use an expert, a U of T professor or medic, to explain
the workings of the brain in our various
"clicked links". Alternatively I can write something nice and
clear and have it read.
Sometimes, while clicking and browsing, one can be diverted far away
from the original subject through
a succession of links. But usually, if the original subject matter
is interesting, one returns to the homepage
and continues with the story. So it will be in this documentary;
it is an engrossing tale, you will want
to know what happens next. You may be entertained and intrigued,
you may very well learn something
new.
Andrew Johnston
Former producer of critically acclaimed features on BBC Radios 2, 3,
4 & 5 in the UK.
Masters degree in experimental psychology. Landed immigrant,
Canadian resident. Available immediately.
[Back to webumentary "the story" if you just popped over and got engrossed]
© dolcevitamedia, 2000