Convalescing.

Today marks just over six weeks to the day I left hospital, and the contrast in energy levels is interesting.

In isolation, I didn’t have much to see or do. My hospital room had no windows, no art on its walls; flowers were banned. 

Plain seclusion shut me off from the everyday pressures of paying the rent, the bills, paperwork, housework, and putting away toys – leaving me to pursue the simple pleasures of reading, writing, looking, or sleeping.

It’s crucial to note how encompassing my weakness was. It’s made me realize just how much energy we use up each day, how much others can demand from us – how easily we set ourselves up for a fall.

Resting in hospital, I was able to gain enough energy to near-resemble my old self in conversation with family and friends. Virtually the only noticeable physical weakness was in mobility, once I put feet to floor and started pacing round (initially after mammoth grunty efforts to sit up on the bed, of course).

On Day 3, any steps I managed were the length of my littlest toe; by Day 5, the strides were bigger, but pacing once or twice round the bed nevertheless sent me to sleep. I thought only this kind of exercise needed to be offset with ample rest. So I closed my eyes lots, read lots, wrote lots.

Over the course of my eight days in hospital my energy did grow, to the extent that upon discharge I could dress myself, pack my bag, and walk – just – out of the ward.

Once home however, the focus of my energy shifted. Having had to use a wheelchair to get to my mother’s car, I needed her as a crutch to get me to the front door.

img_1800Incredulously, I watched my feet move as if on a Zimmer frame, while mentally racing ahead with the usual zip of a parent in her 40s. Forcing my mother, 25 years older than me, to slow her pace in line with mine felt genuinely weird without an option.

I soon discovered how quickly emotion – any kind of emotion – also depleted my energy. Anger, upset, excitement, desolation, frustration, joy: all these required raw energy to form the appropriate facial expression and body language – something that asked far too much of me in my delicate state.

My countenance was already a little pinched and pale from the loss of appetite when I got ill. (I’d say I lost half a stone – no big deal, but being already slim, it showed in my face and wrinkled jeggings.) I now had to have my own death mask to match; I could barely move my lips without getting tired.

At least, on the few occasions when I was required (and able) to do so, it made my signing a lot clearer.

Zoning out at moments of potential stress became a regular practice. I distanced myself from certain individuals who basically asked for high drama, intentionally or otherwise. When in my first week out of hospital my son dropped to the floor with a tantrum, I sat motionless and in equitable silence until he had finished. I am thankful that he no longer pounces on my bed at a ridiculous hour.

In the early days of my convalescence I made the most of watching the trees sway from the French doors in my sitting room until I got a little colour separation. 

When ex-hurricane Ophelia swept past without affecting my region, I had time to watch a neon orange sun above the evergreens cast an Instagram-filter glow on the afternoon, with rays of the same unearthly colour superimposed on my sitting room floor. I couldn’t stand for long; could barely hang the washing out or load the dishwasher without getting woozy.

Instead, I took to drawing, knitting (in five days I made four-fifths of a enormous and completely improvised jumper), and reading – the obvious benefits of which externalized superfluous pressure, and could be done from my bed.

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If I over-exerted myself, once I sat down, I couldn’t get up again or reach for my mobile. Glaring at it didn’t help: both it, and the surface it lay on, seemed to dolly away beyond arm’s length, like James Stewart staring down the belfry in Vertigo.

For school pick-ups, I leant heavily on parents whose children were classmates with my son to take him home for a few hours, while my social worker booked carers two hours every day for a fortnight.

Getting the children up in the early mornings was the worst. My mother had to drive 20 minutes to mine at 7.30am daily so to assist in my daughter’s hoist transfers and walk both children to school for a while. I had people cooking and freezing meals for me. Making even a basic omelette wiped me out.

As soon as I was able, I started venturing outside my front door, inching further each time. On my first attempt, I got to as far as three doors down before sensing the need to turn back – and reached my front door handle just as my legs almost gave way.

On another occasion, a neighbour in long shirt-whites came to my aid when he caught me nuzzling a hedge on a different corner. I was fine; just a bit embarrassed. Cognitive Melissa didn’t quite have the patience for the traumatised physical being on the street who insisted on slowing down like someone twice her age.

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 In succeeding weeks I have, of course, progressed through taxis to quiet shops for midweek essentials to Saturday dips into the shopping centre. I even achieved a short accompanied trip to London for some theatre and a budget spa treatment, although sometimes I still cannot bear how oncoming crowds and multiple steps alter my peripheral vision: a psychological effect of my dehabilitated balance.

An more unexpected after-effect of my illness is the incapability to book dates. If someone says they’ll pop round tomorrow noon, I’m clear. But if they send a wordy text giving me a choice of Thursday or Saturday or they could give both days a miss and come in for twice the time the following Monday would that help? – my mind just fogs over.

Likewise, date listings extending beyond the first, or even the second, week turns into meaningless words and numbers. I can only log one day at a time. It reflects my own efforts to gain fortitude, step by toe’s length step.

I often think of John Lydon, formerly Johnny Rotten of the Sex Pistols, recounting his meningitis experiences at the age of seven in a 2014 autobiography. Of course, his was a particularly traumatic illness that robbed him of his memory for four years and left him with a permanent spinal curvature. But on a much lighter scale, I get the mental struggle to process vital information.

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In one interview, Lydon speaks of the value he now places on retaining memories, and the shock he experienced when his hospital stay ended after a year and he found himself in an unfamiliar environment under the care of two adults he couldn’t remember meeting. (That environment was his home, and the two adults his parents.) Somehow he’d grown a sense of belonging in the hospital; in his amnesia, he thought that was home.

Now that I have had bacterial meningitis a second time (albeit my first as a fully-grown adult), I understand why Lydon has become the straight-talking anarchist we know and love. Because I don’t have time for bullshit either. I must keep my life simple, if I am to recuperate properly. If someone gets difficult, I’ll zone out. If I get stressed, I’ll say so (and I have certainly found being open about my illness helpful).

Most importantly of all, I must make time for me, the passing clouds, the smell of the dewy grass that I lie in on a sunny day, my knitting, my drawing, my books, and (when I can manage it) my writing. Because they are what complete me and my convalescence, and my children deserve it.

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Scriptwriting with Deafinitely Theatre, Act II Scene I: From The Heart

Originally published in Disability Arts Online, 7 February 2014
Rain might have crashed down persistently, but it did not dampen that fun January morning in Starbucks a jot. Deafinitely Theatre’s Artistic Director Paula Garfield was in need of the office at London’s Diorama Arts Studios (which we’d previously used as our workshop space) so Andrew decided to treat us to coffee before getting back to – well, I’d call it dissecting our brains really, so hard did he work at stretching our imaginations.

‘Without looking, how many people do you think are in this cafe?’ he challenged us, and then it was, ‘Give us ten things about this place in two minutes.’ He seemed to work in ever-deepening layers, zooming into points of interest such as the two women chatting in the corner adjacent to ours, and getting us to create an imaginary character profile for each. From there he’d throw at us a situation with which to start the play, a second scene, additional characters and so on, encouraging us to develop our characters further.

For my character – a 32-year-old self-centred, career-minded woman with South American roots called Juanita, who drove a 4-wheel-drive, rented a flat in London’s Richmond, was not in a relationship and had no interest in children – Andrew decided that she had suddenly found herself pregnant after a one-night stand.

What would the play open with? What would she be doing? Where would she be? What would she be wearing, and why? From then on, the doors of my imagination just flew open, and I wrote so fast in my notebook the words were illegible.

And so it went on like that until each of three participants (one was unable to attend) had a lead character, a first and second scene – the latter which involved a dialogue with another character – and an ending, and they all drew inspiration from complete strangers in the cafe who had absolutely nothing to do with us. These were just exercises, not actual work on our monologues. No wonder we returned to Diorama Arts Studios with heads spinning.

A more physical, but no less intensive, challenge presented itself to us in the afternoon, when we presented our second draft monologues as a performance – and this is where I found myself most conflicted.

You see, I have a duality to my identity: my first language is English, because that’s what I was first exposed to (I was born hearing, although I am pre-lingually deaf), I come from a family of writers and artists, and I grew up in the ’70s when sign language was heavily oppressed. Yet my Deaf identity still managed to manifest itself in a variety of ways: through attending a partially hearing unit and then an oral deaf school (where I surreptitiously learnt the finger-spelling alphabet in a loo cubicle), being regularly cut off at the (hearing) family dinner-table, being oblivious to the jazz my mother often played on the radio, and finally finding myself more comfortable living, working and socialising with Deaf people.

As a result I have plenty of BSL skills that I’ve picked up over the years, but they are rather mangled. Although I adapt according to the company I’m in, my tendency is to speak and sign, with my spoken English emerging as the stronger denominator. Interestingly, when I’m speaking in public, I’m inclined to lean on my BSL more. I find that I can project my ‘voice’ (note the colloquial marks) much more effectively that way.

At least during my BSL gallery talks, I can, and do, rely on a little finger-spelling here and there for certain places and names. There is plenty of scope for ad-libbing too.

But performing straight from an English theatrical script? That is something else. My own writing, like Sannah’s (see earlier post) is steeped in the English language, in accordance with the mainstream MA studies I have undertaken – I am to date the only Deaf person to have completed and passed a Master of Arts postgraduate degree in Fashion Journalism and Promotion at Central Saint Martins. So in linguistic terms, my writing is very, very separate from how I express myself verbally – not just informally, but as a whole.

So when I delivered my monologue, there were whole chunks – words, phrases – that I simply found it impossible to translate to BSL terms. I either finger-spelt those words or their first letters, mouthed them, or waved about vaguely. I lost the drama of my own written words in my delivery. Even though BSL is not his first language either, I could see that Andrew was picking up on this.

‘This is beautiful poetry,’ he said afterwards. ‘Says a lot here’ – he brushed his hand over my script – ‘but it must come from the heart. If it doesn’t mean anything verbally, why say it?’ But that was exactly my trouble. Where did my heart lie – with BSL, or English? Would I be demeaning my personal written English values if I tweaked the script so to be more BSL-friendly?

Part of my dilemma came from the knowledge that once the showcase was over, Deafinitely Theatre would be uploading all our monologues onto a specific web server as a way of maximising work opportunities with mainstream theatre companies. After all, theatre directors had their own very busy schedules to keep and could not guarantee attendance of the showcase.

Nevertheless, the showcase was being presented to a mixed Deaf and hearing audience. Our monologues had to be accessible in some way. Of course, our scripts would be projected on a screen behind us, so we could deliver them in whichever way felt most comfortable to us. Sannah was getting an actor to perform hers, while the second participant, Lianne, being a BSL learner, was more inclined to deliver her monologue orally (probably with a BSL interpreter present on the night).

So the dilemma I have just described was mine alone. I could understand perfectly why Andrew had asked us to perform our monologues ourselves. But I was torn not just because of the inherent challenges in translating English to BSL without losing dramatic emphasis – but also because the writing was mine, and I am not an actor.

Scriptwriting with Deafinitely Theatre, Act I Scene II: Drafting

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Deafinitely Theatre HUB participants. Left to right: Nadia Nadarajah, Sannah Gulamani, Donna Mullings, David Sands, Sandra Williams, Paula Garfield, Matty Gurney, Donna Williams

Originally published on Disability Arts Online, 4 February 2014

Even though it’s a work-in-progress, Stephen Collins’ delivery of his monologue is nevertheless mesmerising. He’s picked a childhood story retold by the character Baby in Jez Butterworth’s Mojo for Deafinitely Theatre’s forthcoming HUB showcase in late February, and Andrew has asked him and Donna Mullings – who has selected a monologue from Chekhov’s The Cherry Orchard – to demonstrate to us writers how they would translate English scripts into BSL.

In both cases, I can see how pace, tone, rhythm, and context can shift in the transition. It’s not just that certain words, sometimes entire phrases, have to be abandoned in order to convey the message in BSL more effectively; the actor also has to consider a change of emphasis so to balance out the delivery appropriately and in accordance with the prevailing mood.

It’s not a premise I’m completely unfamiliar with, of course, having delivered BSL gallery talks that contained art theories steeped in spoken-language culture. The difference with theatrical monologues, of course, is that they are essentially the character’s inner thoughts, and therefore tend to spring from an English-literary mind.

It’s something I have given much consideration to since Day 2 of the HUB scriptwriting programme, when we began sharing our first draft monologues with each other. I can’t speak for the other three, but I was certainly nervous about showing mine (yes, I know – a first draft). Feedback was thankfully good, with Andrew calling it ‘poetic’, and a nice discussion around how I could maintain the ambiguity of my drowning theme to the end.

One of the draft monologues – written by fellow HUB writer Sannah Gulamani – was very interesting. At this stage I’m not at liberty to say what it was about, but I know most people who saw it would concur that it was stunningly written and read like a book, rather than a piece of theatre. Its descriptions were certainly evocative but, funnily enough, the pictures they conjured up in my mind were those of an English speaker, not a BSL user.

In fact I got the overwhelming sense that this was the beginning of the play, rather than the middle of it; the setting of the scene, if you like. So a lively brainstorming chat ensued where we all threw in a variety of ideas as to how Sannah could further dramatize her monologue; a Shakespearean singing narrator, getting another family member to deliver the monologue (it was set earlier on in the 20th century), swapping around bits here and there…

This particular workshop actually took place over two days, so that two of us (there are four of us altogether) got to show our monologues on each day. This naturally incurred a substantial amount of thinking that generated its own motivation for the next scriptwriting workshop – our third – which took place a fortnight later.

Scriptwriting with Deafinitely Theatre, Act I Scene I: Truth

Originally published on Disability Arts Online, 28th December 2013
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I’m eight. I’m dreaming. I’m floating – I think I’m on top of the world. I change position, as if there is infinite space and nothingness around me, then I feel my head hitting a partition of some sort. It takes me by surprise, so much so that I stick out an arm to push it out of the way. I want there to still be nothingness.
Before I know it, I’m falling; I’m not dreaming that I am falling. The cool night air whooshing past my face tells me that I’ve woken up, but it’s too dark for me to see anything. I panic because I haven’t my hearing aids in and I can’t hear anything.
Again before I’ve composed myself, my nose hits something abrasive, like a Brillo pad, then the rest of my body follows. I taste blood in my mouth. I realise that I’ve hit the floor of a holiday caravan from the top bunk bed in the dark – but only because my mother switches on the light.

Silence. There are four faces staring at me slack-jawed. I worry that the extract from my childhood I’ve just described may be the worst thing I’ve ever written.
‘Wow,’ Deafinitely Theatre’s Andrew Muir finally says, and with that my paranoia subsides. I’m participating in the company’s first HUB scriptwriting workshop – part of a three-year initiative to nurture the skills of Deaf actors, writers and directors – and the description of a childhood memory is just one of the exercises we’ve been participating in. It’s going brilliantly, and I’m learning a lot about my fellow participants. We have four writers on board this year, and my understanding is that Deafinitely plans to bring in more for 2014.
For some time now I have been wanting to create a play. I already have an idea for one – but it’s probably too grand a vision to achieve on a shoestring at this tentative stage.
But when Andrew talks about writing ‘truth’ in the workshop, I know exactly what he means. In order to write a play that an audience can relate to, you need life experience. You can’t write in a vacuum. There has to be authenticity. Imagination is all very well – and believe you me, I have lots – but if you haven’t lived, what wisdom and knowledge can you draw inspiration from?
The key is to be aware of what you are experiencing, and its potential ramifications for not just you, but other people in your life. It could be something quite boring – like waking up to a sloping, plain white ceiling at home, like I did on the morning of the workshop – that you could spin interesting connotations off at a tangent.
Why is my ceiling white? Why does it slope? From this I can tell you that I live on a hill, on the fringe of the local woods overlooking a view of provincial rooftops and that my house has subsistence, but it’s never been as bad as my landlord has made out, even though they tried to use it as an excuse to put me off bidding for it (I am a social tenant) but I persevered, and that prior to my moving in 10 months later my landlord offered me a choice of colour scheme and I asked for all the walls to be painted white instead of the obligatory magnolia and that is why the ceiling I’m looking at within seconds of waking up is the colour it is.
There you have it: a background that will help shape your story and its accompanying characters. This is the kind of ‘truth’ that I think Andrew wants us to write.
But this workshop is just the beginning. Andrew isn’t keen for the four of us to create a play – at least, not yet. While there were certainly some brilliant set-pieces over the years, the trouble with Deafinitely’s 4Play scheme was how it made out to be about THE PLAY, with directors and actors and sets and props and lighting and costumes and so on when it should have focused instead on nurturing writers’ skills and confidence over time.
So, instead of a play, we are to write a character monologue as a work-in-progress. The HUB actors will have a separate workshop programme of their own to commit to (a couple of which I have already participated in by way of introduction to theatrical practice, and my, how enlightening those were too).
In lieu of what the writers are being asked to do, the turnaround will be short: some drafting of our monologues in January, followed by a collaboration with a Deaf actor where necessary, rehearsals, and then a performance in front of an invited audience made up of theatre professionals, family and friends in late February. Then when more writers join the HUB, we work on something bigger; the following year, it gets even bigger, and so forth.
As this is a work-in-progress, collaborations with actors in the development of our character monologues are not strictly necessary. Some of us are going to perform our own pieces as part of our professional development. I certainly am.
As I said earlier, I already have an idea for a drama, but it’s just too grand a vision to realise on a shoestring. What I can do – and this is what Andrew himself advises – is pick one of the characters that I want to people my play, and write a monologue for him or her (I haven’t decided which). Naturally it would be premature for me to tell you what it’s about – even though the theme of drowning will be relevant – but I can say, with my characteristic mix of excitement, confidence and resolution I suppose, that there will be ‘truth’.