The Times Magazine 19I envision a movie montage. An Eighties
“hair band” power ballad thumps in the
background. Open on a close-up: me, mid-
surgery. In a rapid series of vignettes: Dr
Theodore and his A-team tear into me,
instruments are passed to Dr T and a nurse
blots his beaded brow, the flash of a scalpel,
blood and extraneous fluids gush out and spray
his mask and safety goggles. Then, close-up
on me, post-op, reacting to the news. Success!
Next, a time lapse of me mastering physical
therapy, crushing it – walking on the apparatus
with the handrails, then without the handrails,
gaining strength and soon, running on the
beach. The Rocky-esque theme swells as
I arrive home, fully recovered, swarmed by my
adoring family and our tail-wagging dog, Gus.
Nope. That isn’t happening.
My first physiotherapy session: I’m
attempting something new – using a walker. It’s
a battle and the walker is winning. My upper
body wants to push the contraption forward
at a faster rate than my barely responsive legs
can attain. I end up in a suspended push-up
position, with no leverage, a sensation like
having your toes on one side of an opening
drawbridge and your hands on another.
“Stay inside the frame,” they keep telling
me, but, as Parkinson’s only amplifies, my
brain and my body are barely on speaking
terms. This will prove to be a lasting issue.
That’s the exhausting part. Every movement,
every command, everything that should be
reflex, is a negotiation between Donald Trump
and Nancy Pelosi (I don’t have to tell you
which one is the brain).
On the day of my release, I do not make
that dramatic exit from the hospital, storming
out with my hat and overcoat and jumping into
a cab. Instead, I go meekly, in a wheelchair,
wearing sweatpants and a puffy coat.
Tracy and Nina unload the car while I’m
rolled into our building to find our youngest
child, Esmé, waiting for me in the lobby. She’s
not sure how to approach, other than gently,
so she leans in with a soft hug. I notice that
the doormen, Sonny and Danny, have placed
a temporary wheelchair ramp over the two
short flights of stairs leading to the elevator.
I turn to Esmé and ask, “Who in the
building has a wheelchair?” She pauses for
a second and then, with a tilt of her head,
“Um... You?”
Outpatient rehab begins at a facility near
my apartment. I have to learn to walk again,
to reclaim my mobility, remaster my motion.
I’m exhausted by the effort I’ve already put
in and daunted by how much work I still have
to do. It’s like being nibbled to death by ducks.
With PD and the aftermath of the surgery,
something as simple as remaining upright is
sabotaged by a rogue army of misfiring neurons.
I have memorised a litany of admonitions, not
unlike my golfer’s list of swing thoughts: keepmy head centred over my hips, hips over my
knees, no hyperextending, stay in line with my
feet, eyes forward, shoulders back, chest out,
lead with the pelvis. All this kinetic vigilance
can dissolve in a nanosecond of panic, or come
apart with some other distraction. A tiny
nervous jolt or spasm and, like a house of
cards in a sudden gust of wind, the only
messages that make it through the debris
are: don’t fall. Don’t fall. Don’t fall... Get up.
Over the next two months, I do everything
from the basics – stretching, core work, getting
in and out of chairs – to obstacle courses and
ball tosses (without toppling), all in pursuit of
the holy grail: walking independently. I walk
for miles in one little stretch of hallway on
the third floor of the medical centre, using
a variety of different implements: a walker,
two canes, then one cane.
REM sleep brings nightmares and a fewsweet dreams. In some, I can’t move. I am
paralysed. In others, I’m as able-bodied as
I was as a kid. This nocturnal brain activity
seems normal, but one night in particular
is definitely abnormal. It’s a waking dream.
My eyes are open. I can’t be seeing what I’m
seeing. It’s an unwelcome flashback to my
post-op mind warp. If I close my eyes and still
see it, then I will know it’s a nightmare. My
eyes shut – and he’s gone. Eyes open – he’s
there again, bigger and badder than ever: a
hooded figure, his bearded face awash in green
luminescence, looming at the foot of my bed.
From my angle, he’s a wizard, or Obi-Wan
Kenobi, or maybe Satan, glowing in the dark.
Then, I get it... It’s not the Dark Lord,
after all. It is just Frank. Frank’s presence
represents everything that is f***ed up about
my circumstance. Until you’ve experienced
it, it’s difficult to appreciate the creepiness of
being observed while you sleep.
Frank is my night-time aide. A biker, he
parks his Harley in front of our building. He
arrives at 8pm and takes over from the day
shift. This means that I am never alone, and
it is suffocating. Frank watches the hockey
game with me, or puts up with my current
binge, Peaky Blinders. At some point after
I fall asleep, he ensconces himself in the
recliner across from my bed, pulls up the
hood of his sweatshirt and jams in his earbuds.
His iPhone bathes his face in an eerie glow
as he texts his wife. Every once in a while,
he peers up to assure himself that I haven’t
spontaneously combusted.
In the dead of night, I stir awake. Emerging
from half-sleep, I am confused by the presence
of this hooded, cross-legged Beelzebub. He
accepts my stare, and asks, “Hey, man. Do
you need to go pee?”
Parkinson’s has robbed me of the luxury
of spontaneity. Being observed so intensely,
though, is a new kind of constriction.
The surgery has rendered me unbearably
dependent. I bristle at steadying hands that
reach out to support me – by my judgment,
most times, unnecessarily. As I make my
way to the bathroom, I’m watched over
like a baby in a bathtub.It takes time but, eventually, I regain my
independence, free to move in a world
beyond the distance between one end
of an antiseptic hospital corridor and the
other. At last, I am able to stroll around
SHUTTERSTOCK the apartment without assistance. My gait
With Christopher Lloyd in Back the Future Part IIIn the political sitcom Spin CityIN SOME DREAMS, I CAN’T MOVE.
I AM PARALYSED. IN OTHERS, I’M AS
ABLE-BODIED AS I WAS AS A KID