Broadening our creative practice series across new forms, Alice Richmond explores her lived experience of Functional Neurological Disorder (FND) across this two-part piece, firstly through her monologue ‘Barely Functional’ and secondly in her corresponding critical commentary.
INT. KITCHEN - DAY
JESS (23) is sat at the kitchen table with a mug of tea in front of her.
JESS
My wife is a doctor. She’s
beautiful, gorgeous, sapphire
eyes, olive skin, the most
incredible, intelligent mind. I
don’t picture it as that kind of
impersonal lump of grey matter
that you’re taught about, but
instead as a shining block
crystal, intelligence anyway,
compounded into a mould,
spitting out straight beams of
white logic: ready to heal and
solve.
Pause.
She is the eighth wonder of the
world my wife is - but she does
work too much.
Sips tea.
The hospital and I are at each
other’s throats for her
affection and it is, I have to
say, mostly mine which gets
slit. Her attention though, when
I do get it, is utterly spell-
binding, it catches your throat,
you know at that moment just
before you’re about to breathe.
Touches round her neck, finds the hollow, probes it a bit
too hard.
You know that pre-gasp that
lives in the hollow in your
neck, just here – and it holds
you there, the centre of
experience. She takes you into
medicine. It is sparkling and
silver, and it smells, or at
least it once smelt, like soap
and healing.
She has dropped her hand onto the table again and takes a
sip.
And get this – she works with
children! I’ve hit the jackpot.
Pause.
I often tell her that she should
take in my books for the kids at
work, you know, maybe it’ll
cheer the poor souls up. No
Jess, she says, her voice in the
morning is thick like that, no
Jess she says, reading won’t
help as much as lumbar punctures
and antibiotics. And, well, to
that I say nothing and watch the
steam rise from her coffee,
swirl into helices, twisting
circuits in the empty air,
releasing themselves into it,
perfect curls washed away in a
humid bathroom.
FADE OUT:
INT. BATHROOM - DAY
JESS is sitting on the toilet lid. The shower runs in the background and the bathroom fills with steam.
JESS
I make a LOT of money writing
stories of pirates and
adventurers and sea monsters.
JESS acts out each one as she lists them.
Kids do love my books, but what
they really love are stories of
whimsy and wonder and the
supernatural. Stories can take
them to a place beyond the real
world, a place where things are
actually possible. Hospitals
down in Cornwall have my books,
the children there have been
raised with the sea, they
appreciate its wonder and its
beauty. My stories remind them
that it is there waiting for
when they return.
Pause.
I suppose Katie is right though,
for kids in Birmingham the sea
is as much of a fantasy as my
biggest, baddest sea monster.
If they were to feel at home
through stories, she suggests,
they would need to be about
asthma attacks in the bedroom
they share with their three
siblings, the room where the A38
looks in and they try
desperately not to look out.
Pause.
Even so, I’ve got this vast
responsibility for my ‘young and
impressionable’ audience,
especially now I have this new
kids’ show script. I’m told
that’s why I ended up in
Birmingham Women’s and
Children’s myself last week with
jerking limbs and facial tics.
FADE OUT:
INT. BEDROOM - DAY
JESS is sat up in bed, strewn about her are various magazines, books, puzzles, anything one would give to an invalid in hospital.
JESS
It’s made me tired, doing things
without the say so of my
consciousness - so, I am here…
She gestures to the bed and the things on the duvet.
doing nothing. Nothing at all
that could be considered work at
least. I said to Katie after I
came out of the hospital, out
from my quick and unforgiving
brush with the neurologist, I
said, now will be the perfect
time to get on with my script,
start thinking up some new
plots, get back my mental
strength before rebuilding the
physical. She’s been funny with
me lately, one minute I’m faking
it, apparently manipulating her
into taking care of me, the next
she’s telling me I must rest in
bed and do no work, that I’m
over-tired and over-stressed.
Did I not hear what the doctor
said? I simply can’t go on the
way I was before. And really who
am I to disagree? One doesn’t
quite have the upper hand when
their left leg is flying through
the air, a net catching an
unwitting butterfly.
FADE OUT:
INT. KITCHEN TABLE - EVENING
JESS
It’s got me thinking, you know,
what I told you yesterday. She
doesn’t accuse me of
manipulation, I want to say that
now, she isn’t nasty. She can
just tell when I’m laying it on
a bit thick, you know, getting
her to run after me day and
night. It’s a good thing really
that she can see straight
through me.
Pause.
(Quietly.)
Straight through.
Pause.
But I suppose I ought to tell
you more about my symptoms,‘use
my words’ as the neurologist put
it. Katie can’t understand why
that made me want to punch him
in his overhanging gut, filled
to the brim with chewed up,
loveless, cafeteria food. She
said it’s a common expression
she hears a lot. Well, I kept my
mouth shut about the pretty
crucial age difference between
me and her regular patients.
I have functional neurological
disorder, its family tree
stretches through varying names
back to hysteria. I joked at the
time that I would be the next
victim of the yellow wallpaper
but nobody laughed.
It comes, I’m told, from that
classic nervous disposition. A
disposition I’m not sure I
recognised in myself until they
told me. Work, the pressure of
it, it was mounting, building
and building until I cracked.
And there I was - cracked.
It’s common, I’m told, for
patients with FND to have
virtually no self-awareness.
It’s common, apparently, for
patients with FND to be a
handful. It was at that point
that they gave me a look, half-
joking, despite the fact that my
whole life I’ve been desperately
sticking to the rules.
FADE OUT:
INT. BATHROOM - DAY
JESS is sitting in the bath tub with no water, clothed.
JESS
When I say I’m good at sticking
to the rules, I’m not sure
you’ll know quite what I mean.
To illustrate, the rules of FND
are as follows:
1. Do not complain about how
tired you are unless you want
people to tell you that they’ve
had it worse when they’ve had
jet-lag or they’ve worked 75
hours a week or fell asleep on a
train one time.
2. Do not admit to being
stressed, even in reasonable
circumstances and with
moderation. Otherwise, you’ll
get given anti-depressants you
don’t need and told that stress
is the only conceivable reason
you are having seizures. And,
3. Do not provoke the
neurologist. How to stop doing
that one I haven’t quite worked
out yet.
Pause.
Saying all that though, I am
hiding in here, escaping the
lecture I’ll get when she
uncovers that I’ve been working
on my script. She hasn’t been
fun to live with lately but it
will improve, I’m told.
Diagnosis is hard on everyone,
I’m told.
Pause.
Though it isn’t me who thinks
it’s a sign of failure.
FADE OUT:
INT. BEDROOM - DAY
JESS
Somebody, I don’t know who, said
that Hamlet is read only once,
in one’s mid-twenties. It is
understood then and never
understood again, no matter how
many times it is read. I think
the same is true for The Bell
Jar. Every woman at some point
in their late-teens to mid-
twenties can understand the
feeling of stewing in the same
air for years at a time,
watching everyone else move
around untethered. I finished it
for the second time this
morning, but what stood out
wasn’t the idea of the
irremovable bell jar, but
instead the fig tree. Each fig
of opportunity - children,
family, career, passions -
plummeting to the ground around
you, till all you can see are
the sticky corpses of what
wasn’t. FND is a fig tree of
medical seed. It says we do not
believe you, we do not like you,
we think you are lying:
crucially, it says your figs are
not falling. Yet it strips
women, mostly, of their figs,
one-by-one, until it’s hard to
believe they were ever there at
all.
Pause.
FND occurs in women 70% of the
time. It was theorised in the
past to be a condition of
weakness, an emotional inability
to perform one’s, at first
marital, and in the heyday of
shell-shock, masculine, duties.
It does not seem as if anything
has changed. However, the harm
no longer lies in a rest cure
but instead in simple medical
interactions, in lying to the
patient, evading questions from
the patient, avoiding talking or
dealing with FND patients at
all, simply so that doctors do
not have to deal with our
manipulations.
Pause.
This information, I will admit,
has partially come from the
internet. To get out of
explaining anything my
neurologist directed me to a
website, an online forum filled
with hundreds of blogs written
by people with FND. For someone
who only 24 hours prior was
completely healthy to be reading
about their new normal as an
ambulatory wheelchair user was
traumatising to say the least.
The desperate urge to get away
from patients with FND means
that it is blogs which are used
to educate them. On this site
were dozens of stories of sudden
onset symptoms, medical
neglience, and underneath it all
a real sense that no one
considers people with FND worth
helping.
Pause.
She’s ashamed of me, as if that
wasn’t obvious. Ashamed of me
for faking it, for faking a
stroke to be exact.“It’s
frustrating. Because why would
you actually fake a stroke? A
stroke is life changing…
disables someone for the rest of
their life.” Why would you fake
that?
Pause.
I can’t answer; I don’t know. I
will get out of bed soon.
FADE OUT:
INT. KITCHEN - DAY
JESS
Someone complained about Katie’s
conduct at the hospital, accused
her of bullying. Lately I will
say her shooting beams of logic
have been firmer, more carefully
aimed, she is clearly well aware
of how to hurt and heal. Anyway,
the investigation concluded
yesterday and she’s back at
work, cleared of all suspicion.
I’m told she had every right to
say that child was wasting her
time.
Pause.
That they didn’t deserve her
help if they couldn’t behave.
Pause.
I’m told, in fact, if my
behaviour were less like a
child’s, if I had stopped, at
the right age, wasting my time,
my energy, and my intellect, on
adventure stories filled not
with wonder but with nonsense
and pointless escapism, that
none of this would ever have
happened. I disagree, but I am
cracked now, so what do I know?
FADE TO BLACK:
About the Author
Alice Richmond is a PhD researcher at the Shakespeare Institute; her doctoral thesis explores bodily failure within the Shakespearean canon, and is grounded in literary and theatrical theory, as well as verging into the medical humanities. She is particularly interested in how perceptions of the physical body manifest themselves in early modern literature and culture. Alongside her studies, she is a keen, and established writer, published in Refresh magazine and performing at BBC Contains Strong Language, Verve Poetry Festival, and the University of Warwick’s Postgraduate Symposium. She is set to present a paper at BritGrad in June 2025. You can find her on Instagram @aliceerichmond.
About In Practice
‘In Practice’ The Polyphony’s creative practice research project, showcases multi-modal creative engagement with the lived experience of chronic illness, disability, caregiving and health from a range of creative practitioners within and beyond academic research. Founded by Aly Fixter and Grace Brimacombe-Rand, they wanted to bring their own creative practice and academic engagement with creative texts to the medical humanities digital community and foster new connections. If you are a creative person who explores their lived experience of health or the body through writing, art, photography, or any creative methods, please get in touch to share your work with The Polyphony’s audience.
