Downward Mobility
Poems about living with multiple sclerosis
by Diana Neutze
Life Sentence
i
The Romans knew what they were about
when they made the verb to suffer passive;
patior: not something I choose to do
but something which is done to me.
Lacking patience,
I do not easily submit to an inactive role;
my passion rages, but to no avail.
ii
Imperceptibly, I am moving
downwards on the chain of being.
Soon I'll be altogether stationary
like a tree, well rooted, motionless;
a hierarchy of spiders
will drape its webs across me,
while sparrows squabble overhead.
iii
Like the dog chained
to the chariot wheel
I have no choice.
It makes no difference
whether I am dragged
claws screaming and scraping,
or whether I trot docilely;
I travel the same distance.
The trick is to consent,
to act as if I have chosen
this particular journey.
Therein lies the transformation
of my inner landscape.
Falling precipitous cliffs
Become smiling meadows;
claustrophobic sycamores
no longer invade my space
but shelter, gently,
a skirmish of sparrows.
Saint Who
Traditionally a hair shirt
suits with sanctity,
a chosen reminder
of the flesh's frailty
turning the thoughts
towards God and Heaven
(tho Anouilh Becket
could cynically declare
that hed feel cold
if his were lacking).
Damaged sensory nerves inform me
erroneously
that I am wearing a hair shirt,
or worst, a wet suit lined with sandpaper,
gritty, cold and clammy against my skin.
I do not choose to be thus reminded
of my body's weakness
nor do I find my thoughts
winging towards Heaven.
So, wherein lies the sanctity?
Downward Mobility
i
I once moved freely
with no need to remind myself
what walking was;
one foot followed the other
in due succession.
But now, I do not own my legs.
Instead, some clumsy puppeteer
mocks my movement;
From one foot to the next
I cannot guarantee
therell be sufficient tension
to sustain my walk.
The strings are slack.
ii
Since GST I've run out of walk;
it was improvident of me
not to have stocked up
before the prices soared.
Now, it will take me
a lifetime of saving
before I can once more afford
so expensive a commodity.
iii
Hove to, my craft
no longer seaworthy,
I ride out the long Pacific swells.
I dare not venture oceanwards
but, like an injured gull stay close,
a wings tilt from the shore.
iv
No matter how loudly the queen
shouts: Faster
I never make it to the next square.
I remain an insignificant pawn.
v
Unlike the clown, who stumbles
with unco-ordinated grace,
my clumsiness has not been
choreographed.
Instead, a street busker on stilts,
I dance stiff-legged to silent music,
masking my pain cosmetically.
vi
There's a new elite;
its the done thing these days
to have a breakdown;
according to Sylvia Ashton Warner
all the best people oblige.
Im hopelessly old-fashioned,
keep producing physical symptoms.
Doctors and analysts are helpful.
Im given encouragement:
if I dig down to the hidden recesses
of my mind, Ill find there
a secret desire to be ill.
Despite their help my walk does not
improve;
Im still off balance,
a clumsy astronaut
lurching against gravity.
It's like offering the wrong currency.
I still trade in shillings and sixpence;
the rest of the world's gone decimal.
Vii
Its as if I spend my days
with a morose
and uncooperative spouse
who grudges all my outings
and keeps me closeted at home.
My domestic gaoler is relentless
issues unreasonable demands,
and, at the least hint of opposition,
falls prey to inconsequential rages.
Divorce is out of the question.
I dread the ending of my days
trapped in limitations
so arbitrarily imposed.
All I can do is hope
that, imprisoned in my body,
Like Ivan Denisovitch
in his Siberian waste,
I will be able to declare:
I have had a happy day.
Chronic
Chronic
an illness of time
theres no escaping
time is for always
even a clocks unnecessary
if I read the sycamore tree
learn by heart its changing seasons
I recognise time
as a play of shadows
a quality of light
and time mounts up
compounded interest of days and nights
whatever else the morning brings
I can be sure of hours and minutes
the tick-tocking of illness
relentlessly
Double
My disability accompanies me
everywhere; I have always to effect
a double introduction, explain:
theres two of us; were inseparable.
Its like travelling with a solipsistic
and highly vocal toddler,
or with an identical twin,
fractiously demanding
five star treatment as her special right.
I would gladly disown her, but she
adheres;
Even in the dark I cast a shadow.
Nervous
Nerves are unwanted guests:
they fire hot Lilliputian arrows
or run like red ants
hot and cold along your spine.
Don Quixote approaches
and your windmill arms unceasingly flail.
40th anniversary of my illness
Forty years of living
with a kleptomaniac
who steals by stealth
movement, agility, grace.
But that is not all:
the thief is now leaching away
the nimbleness of time.
Last week I watched the story
of two elderly sisters
and a drowned violinist;
but last week is years ago.
As I lose a hopeful tomorrow
I become merely today
and memories of the past,
the bright flashing river
of opportunity and hope
turned into sludginess,
a dead end of days.
Dead End
The particularity of pain
takes over the mind
right to the very edges,
an amorphous sludge
which leaves no space for poetry.
A poem requires connections,
they need to move freely.
Only occasionally, a snippet
struggles to emerge.
Thus: from babyhood,
this is how it was,
so now, I try fiercely
to relinquish that fierce trying
but I am caught on a circle of self,
a roundabout,
with no beginning, no end.
This poem lacks breathing connections.
Mired in the sludge,
it has nowhere to go.
Multiple Sclerosis
For over forty years
I have been duelling
with a redoubtable opponent.
If I have maintained equilibrium,
it is through fancy footwork
and unwavering attention.
But today, he slipped in under my guard.
I lost footing and my concentration
became distracted.
I sprawled lengthwise
entirely at his mercy.
But the defeat is not of today alone;
for months, years, I have been undermined
and only now,
the skin has cracked open
to expose a gaping wound.
Against the odds
It's all very well on a clear day
with silver birch leaves shining
into the sky and a hedge sparrow singing,
then God is easy.
It's very different on a pallid day
with high cloud
no contrast, no definition.
But how about the dark hollow
before sunrise when I wake
in the straitjacket of disability
listening to the silence?
No Less
A grey mid-winter afternoon,
a ripple of wind in the cabbage tree,
a sleeping circle of cat.
It's a far cry
from a rainbow over a coral reef,
the evening ballroom
of St Mark's Square,
a kangaroo at sunrise.
Yet I am no less
because my world contains only
a tremor of wind against the greyness
and the cat silently breathing.