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For many people with MS, the first sign of the disease is a condition called optic neuritis, which can result in blurring of vision. (?)
My world shifts
out of focus
but it is autumn and I can blur
with earth's rich colour,
drift with leaves
into winter's cooler comfort
a chance to start again...
Another common symptom of MS is fatigue. This differs from "normal tiredness" in its debilitating effect. It's impossible to overcome with sheer willpower. (?)
Next semester will be different
I will not sleep so much
I will fight this malaise
I will attend every lecture
I will pick up the threads of knowledge
I will not unravel through another year.
I will go into politics
I will go overseas
I will travel the country
After all, I am young
a world waits and needs
I will...
Due to its complex nature and a huge degree of variability between sufferers, MS was historically very difficult to diagnose. Symptoms like fatigue can easily be overlooked. I was lucky, I only waited two years for my diagnosis. I have met people with MS who remained undiagnosed for ten years and in that time came to believe the consensus of medical opinion that they were neurotic, lazy, or in some cases mentally ill. Advanced diagnostic techniques such as MRI (magnetic resonance imaging is a detailed type of xray) and their wider availability have made earlier diagnosis more likely, at least in the privileged first world. Although a more assertive and persistent patient is still more likely to be taken seriously. (?)
Sleep is the only salve
for this disease
three doctors
consign me neurotic
but I rip up scripts
for benzodiazepam
I can read MIMS!
My self belief keeps me going
though it's hard to cram a life
into five strong hours.
He is patient and kind
but I resent success
good health allows him.
Paler in reflected light
I need my own candle
to burn.
top
Finally, someone believes me!
I'm sick. I've been telling them.
But it took the breakdown
of my body.
Legs shake
fingers tremble on the buttons.
Thank God for nervous locums,
it's off to the specialist.
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"I'll get straight to the point
it's a tumour, lupus or MS
MS is your best option
and my best guess"
All this after a few taps
under the knees
a light shone in my eyes
and two minutes of talk.
Sick for two years
and all this
in two minutes?
I am angry with the doctors.
He says it won't help,
best to put the past behind me
and get on with my life.
A tumour, lupus or MS
I live with these three words
for a week, a lifetime.
top
I fly home.
Wait with my family for the news.
My Mother is stricken
I smile, I am stoic
I'm fine, I can cope
My sister reads the books
sits on my bed
"it's not Cancer, I think you have MS.
I smile my thanks
I'm fine, I can cope
I keep this up for three days
then collapse on the stairs.
My father picks me up
for the first time
in eleven years
I call him Daddy.
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"We are so lucky
to have this new technology"
For the first time, a doctor tells me
how lucky I am.
A phrase to be repeated
in the years to come.
And so began a nightmare
to feed a future fear.
A torturous hour
in the black womb of terror!
"It's totally painless you won't feel a thing"
The jackhammer noise
blighting my bones
"Just some knocking sounds, nothing to worry about"
I am alone
they can't let him in.
When I panic they do.
"You must keep still, will we call doctor to give you
a valium injection?"
He tries to reassure me
touches my feet.
I scream "don't!"
In my head
the metal fillings resonate.
Within my skull
my mind breaks in
this new technology.
One me went in.
Another came out.
I told them I was claustraphobic.
top
The smiling doctor
shows me his collection
of bottled spiders -
"Look They have such
fascinating nervous systems."
but trapped in glass
surely they can't breathe?
A world spins from its axis
as I am pinned with them
an interesting case.
On some other level
I know they are dead
Minutes earlier he told me,
"relax, it's MS."
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A separate creature
 raids my spine
Its shadow bites
my frontal lobe
A conspiracy gathers
tar sticky
I beg for knives to cut
this sepsis out
even
if it kills me.
Only a lover could seduce
this shocking beast
to trap and then release
a brighter pain.
Afterwards
just the slightest touch
is proof enough
we
are human
connected
in our slick deliverance
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I'm shown the film
Me - naked -
stripped of skin -
Stalked eyes -
Reptilian spine -
Tributary nerves in a human sea -
Me - sixty percent water
more in brain and spine
where the white flares signal
climbing tides.
I file the map to try
some comfortable religion
but still wonder
where my soul hides
in this fluid world.
top
I'm a frightened astronaut
mapping my damaged ozone -
remembering my first flight
entombed with no view
and no light -
but now they've opened up
a window
to look beyond this ticking womb
into the world
where through the perspex layers
flickering bluely on the screen,
I see a scarred planet -
ready to heal as earth
my own
beautiful brain.
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