We need to talk about Deaf people’s mental health. Now.

TRIGGER WARNING: contains descriptions of attempted suicide, suicidal thoughts, and emotional distress.

In April this year, Daniel MJ Webster ended his life. He was Deaf, and in his late 30s. He had been assessed as having severe mental health problems, and needed urgent attention.

However, instead of the specialist Deaf-focussed therapy requested by his GP, Mid-Essex Client Commissioning Group (CCG) referred Daniel to mainstream counselling with a BSL interpreter. 

As a result, the UK Deaf Community lost a funny and lively young man who was much loved by many, with his family so consumed by grief that they have asked for total privacy. The specialist counselling service, Deaf4Deaf, have launched a JustGiving page for a MH support fund in his memory. They plan to raise £50,000 for six emergency counselling sessions to be offered to 278 Deaf people with severe mental health problems.

While I recognise that six sessions will never be enough, my hope is for the 278 to be recognised by the UK mental health system and gain access to longer-term counselling support administered by BSL-using professionals.

After all, this is happening against an UK-wide backdrop of mental health service cuts continuing for the ninth year under Tory governance, with 83% of schoolteachers reporting deteriorating mental health in children, and two thousand mental health staff a month leaving NHS England last year.

All of which mean double the barriers for Deaf people seeking qualified counselling support. Not only do they experience cuts in those services; they also experience cuts in accessing them. I am hardly surprised that Daniel’s request was rejected by a CCG. 

When the coalition replaced Primary Care Trusts (PCTs) with CCGs in 2013, for the first time in its history the NHS’ commissioning of individual healthcare services became an open market. The PCTs’ code of practice required them to commission public services only, prioritising duty of care. Consequently, they were treated as de facto investments in the public’s health, with the higher cost reflecting quality of service. They funded Deaf-focussed counselling more willingly. 

That changed with the CCGs. Public healthcare providers found themselves competing for bids with private bodies, who didn’t necessarily value duty of care, weren’t as qualified, and sought instead to undercut their public rivals whatever the cost. This is where the likes of Virgin Care muscled in, complaining about the NHS swiping service contracts from under their noses.

Let me show you a real-life experience of how those changes have impacted directly on Deaf users of counselling services: namely, mine. 

I live with depression, anxiety and PTSD. I have made one suicide attempt in Weston-super-Mare, in 1992. I’d got myself very drunk and bagged a lift to the pier at a stupid hour of night, where I intentionally clambered onto the rocks before passing out. Next thing I remember, I was shivering from hypothermia in a foil blanket, still wishing I was dead, while the fluorescent corridor lights of the local A&E sped past from above. 

I have contemplated suicide many more times since: particularly 2011, 2012, 2013, 2014, and last year. I haven’t always been mentally ill, because it’s usually triggered by traumatic life events. I have had two courses of counselling with SignHealth, in 2012 and 2013.

I’ve also had mainstream counselling. After my suicide attempt I was referred to my university’s mental health service, where I met a trainee counsellor who’d just cracked how to keep her emotions in check. Asking her to adapt communication was too much of a stretch. So I quit, and tried working through my depression on medication instead.  

My next course of therapy was provided by MIND, who sweetly tried to match me with a disabled counsellor in 2001 following a messy relationship split, and my father’s cancer diagnosis. 

She was certainly kind, accommodating, and very proficient. But her being disabled and not deaf, and my being deaf and not disabled – I know this sounds weird to some of you (it doesn’t to me and my deaf friends), but bear with me – ensured that I spent most of my time explaining my perspective as a deaf person, rather than addressing the actual issue in hand (however easy she was to talk to). 

Twenty sessions later I declared time up, having found love again. In retrospect I wasn’t emotionally ready to move on, and the counsellor hesitated a little at first. Being so professional though, she understood it wasn’t her place to dictate what I should do.

I also saw two Relate counsellors on two separate occasions in 2011 and 2014, both times with BSL interpreting support. Both proved unsuitable because they lacked Deaf insight, and prattled on instead, thinking they knew better. 

How much I have had to tolerate, and for so long, before I could properly express myself as a Deaf person with mental health issues, is as jaw-dropping a memory today as ever. I am capable of communicating in both oral English and BSL: yet I cannot avoid that being affected when I’m describing emotional trauma – however hard I try to maintain clarity throughout.

In that context a mainstream counsellor, even one relying on a perfectly competent BSL interpreter, would misunderstand their Deaf client far more than is necessary. I’m sure the last thing any qualified mental health professional with integrity would want to do is add more stress.

Yet that is exactly what I’m getting from the UK mental health system today. Despite the advances made by the DDA and its successor the 2010 Equality Act; despite the 1998 Human Rights Act; despite more Deaf people and BSL allies becoming qualified counsellors – I am struggling more to access it than before.

It’s not like I’ve shied away from discussing my problems either. Look: just one person can save a life. I am only here today because one person decided to get some fresh air at five o’clock in the morning in Weston-super-Mare, all those years ago. Just one person. It breaks my heart that no-one was there for Daniel Webster in his hour of need. So if I can save one Deaf person’s life with this blog, then it will have been worth my sharing something so raw and intensely personal. It is the least I can do. 

After a quick succession of traumatic incidents in late 2017, and again in early 2018 triggering flashbacks, I started visiting my GP once a fortnight. They’d log issues as they arose, prescribe antidepressants, and refer me to a psychiatrist (for diagnosis) and SignHealth (for counselling). The last two times I did that – in 2012 and 2013 – I was seeing a Deaf-focussed therapist within a few months. 

This time round, the referral has taken 15 months. BSL Healthy Minds, the counselling service run by SignHealth, assessed me for cognitive behavioural therapy (CBT) and depression only yesterday.

That happened because I wasn’t prepared to be accepted for mainstream counselling with BSL interpreting support, just like Daniel Webster. When I complained to my GP about my referral to them for assessment, my CCG interjected that I had to go down that route first before they could agree to the alternative – just like Daniel’s CCG.

Determined, I raised the issue in an email to the mainstream provider. They wrote to my GP, who wrote to the CCG, who wrote back saying they’d already rejected my request for BSL counselling, in February 2018. My GP then wrote to the mainstream provider, asking them to support my request in writing to the CCG, and posted me a copy of their letter.

Again I emailed, this time addressing both mainstream provider and BSL Healthy Minds, begging them to please make my request a priority. I got my daughter’s social worker to post her own written support – thus triggering a cross-party alliance of social services, GP, mainstream provider and BSL Healthy Minds, all badgering the same CCG to change their blasted minds.

Now, I have to wait another 28 days before I know if I can have 20 sessions with BSL Healthy Minds – even though I have a high score in all three areas assessed: depression, anxiety and suicidal tendencies. And I was diagnosed with PTSD by a psychiatrist in May last year. Tell me, how is this my CCG making my case a priority?

Clearly, my deafness has never been the problem. It is society’s attitude to it that is: the same society that flusters when they realise they have to find another way to communicate with a Deaf person. The same society that aggravates my mental health issues, and those of many others, like Daniel Webster. They know, only too well, that communication is a two-way street.

They have simply chosen not to make it so.

Click here to donate to the Daniel MJ Webster Deaf Mental Health Fund

If you are a Deaf person with mental health problems and you are at crisis point, you can email the Samaritans for 24-hour support on jo@samaritans.org  Otherwise, ask BSL Healthy Minds for a referral to their psychological therapy services on therapies@signhealth.org.uk

You can also self-refer to Deaf4Deaf here.

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BSL gallery tours

For the first time since 2015 I have been working a role that I often enjoy: BSL gallery tours that mainly, but not exclusively, focus on fashion and contemporary art.

These tours are aimed at Deaf audiences and last between 45 minutes and a hour, including Q&A and opportunities for audience participation.

So far, in recent months I have had the pleasure of covering Azzedine Alaïa the Couturier at the Design Museum (25th September 2018) and Rachel Maclean’s The Lion and the Unicorn at The National Gallery (25th January 2019), both in London, which attracted a largely new audience that night. Feedback has been positive so far and I plan to do more when time and family commitments allow.

I am currently developing a BSL tour with Windsor Castle in May 2019 – watch this space for details soon.

Audiovisability: the project that drove my creativity

For three months last year, I was an artist and writer with Audiovisability, supporting their research and development (R&D) project funded by Arts Council England.

The project revolved round deaf Para-dressage rider Laurentia Tan, a multi-medal winner who has been competing in Paralympic and global sports events for ten years – and yet has never won gold. It came about due to her growing frustration over barriers to participating in individual freestyle, the only dressage test set to music.

My role was to shadow her in a variety of ways – online discourse, information-sharing meetings, interviews, flying to Cologne for a weekend – and combine that with my own research and development, eventually writing a report accompanied by my own drawings. The result can be viewed here, with a shorter version on Disability Arts Online here.

Laurentia has cerebral palsy. It was for that reason – among others – that Audiovisability’s creative director, Ruth Montgomery, invited me to take part. I am, after all, a parent to a child with cerebral palsy who has explored that road through my blog and my Kindle book, My Daughter and I, which can still be downloaded from Amazon UK. Besides Laurentia and I had been wanting to meet for years – almost since my daughter Isobel was diagnosed at age one in 2010, just after the sportswoman had entered competitive dressage.

Audiovisability therefore facilitated a precious moment where, Laurentia paid us a personal visit and lent Isobel her latest silver medal, won at the 2018 World Equestrian Games, to wear for a photo opportunity. I can’t overstate how significant this was for my child’s self-confidence, for her younger non-disabled brother to witness this, and how proud I felt that day.

Meanwhile Ruth sought to both bring the R&D to a wider audience through a variety of creative disciplines, with music at its core, and use it as an unique opportunity for the artists to build on existing skills and expertise.

So not only did Laurentia boost her music literacy through a combination of music lessons and collaborative discourse – but as one of the contributing artists, addressing a subject that I knew very little about enabled me to spawn a new writing language; which in turn, also pushed my drawing into a more innovative, almost allegorical style.

Given the almost polarised demands of the two strands – bombarding my mind with structural, grammatical thought for long periods of time (even when taking a coffee break!), and then switching to freeform drawing – it was possibly the most challenging and intensely creative task I’d taken on.

Nevertheless, it provided an invaluable opportunity to drive both forms of creativity to new places, transforming my art and my writing as a whole. This new development will be crucial in realising an ambition that I have of producing illustrated children’s books in future.

I am privileged to have worked alongside such a wonderful bunch like the Audiovisability crew, and I look forward to more collaborative work with them. Indeed we are planning for workshops, funded by Decibels, to take place at the PACE Centre in Aylesbury later this year, which will explore similar dressage music themes with their students.

May I extend deep thanks and appreciation to Ruth Montgomery, fellow musician and producer Eloise Garland, sound designer Chris Bartholomew-Fox, German dressage coach Volker Eudel, film director Louis Neethling and most of all, Laurentia Tan and her mother Jannie, for their kindness, patience and time.

Behind Closed Doors: WOW Exeter 2018 and Deaf abuse survivors

I am taking the train to Exeter St David’s on a beautiful day. The peaceful cumulus straddling the giant expanse of blue outside my window reflects my thoughts: assured of my place of safety and comfort, but not resolutely clear.

Today I’m joining a 2pm panel discussion about domestic abuse, Behind Closed Doors, chaired by Jude Kelly as part of WOW Exeter 2018, and I’m keen to share some of my Deaf survivor experiences.

The risk, in doing so, is inherent. I have PTSD and depression, both of which were triggered by cyberbullying following previous ‘outings’. (You can see my first one here.) I have young children to protect.

I belong to a 156,000-strong, intrinsically expressive Deaf/BSL Community that thrives on open communication and gossip – ensuring a high concentration of British Sign Language (BSL) users who know both me and my ex-partners, especially if they’re Deaf. (I expand on the theme here)

So if I don’t divulge certain details, focussing instead on information that doesn’t ‘date’ the abuse at a specific point in time – you know why.

However, I will not be cowed. My perpetuators know that I am one of very few Deaf women not just prepared to speak out – but able to, because I have the ability to articulate myself well to a mainstream or hearing audience. But you know what? If they try to stop me, they cannot profess to be an ally of the Deaf/BSL Community when they practise what we seek to overcome.

Since beginning my work with fellow Deaf survivors – both in a professional capacity, and more informally – I have come to realise how vital their contribution is to everyday discourse about domestic abuse, and yet how lacking it is. As an artist and writer who values freedom of expression in her work, that speaks most deeply to me.

And there are honestly others who recognise this too. In 2015, I was invited onto a panel discussion at the Women’s Aid annual conference, where I became the only Deaf survivor addressing a packed room directly. Later that year, I gave a 45-minute presentation at the NHS Safeguarding annual conference, in which purple became the token colour.

Again, I was the first Deaf survivor to speak out there. 350 people fell completely silent.

Earlier this year, I collaborated in a workshop with DeafHope survivors as part of Statements in Semaphore, an Arts Council-funded project led by Susan Merrick. (You can read more about the workshop here.)

In two hours, I had become a fan of the survivors. The dignity and composure they showed, as they worked patiently on their effigies, reminded me of our unbroken spirit, and evoked memories of how I felt after completing my own course with DeafHope some years ago.

It also made me very sad. These women were resilient because they had to be – but how many of them could stand up on stage and address a hearing audience? For Deaf women, the usual disincentive to come forward is aggravated by, again, communication barriers.

Visible though the survivors’ art is, it exists only as anonymous messages. Their experiences, and what they do afterwards to ensure their safety, remain hidden.

Within the wider society, our position is vulnerable. 90% of all Deaf and hard-of-hearing people come from hearing families, the majority of whom don’t sign. Having a deaf child doesn’t guarantee increased deaf awareness, ensuring that the communication barriers between child and parent become their own institution.

Being clueless in the matter, if they’re not inquisitive enough, parents will then turn to medical advice to ‘solve’ the problem instead. Some will, unfortunately, start abusing their deaf children as a way of deflecting their guilt – thus setting the tone for future toxic relationships.

For people like that, the very idea of calling out domestic abuse in adulthood becomes an insurmountable challenge. I am very lucky to have had loving parents (communication barriers notwithstanding), and an understanding of what constitutes a healthy relationship – but even I have faced enormous pressures to not come forward.

Sharing my experiences briefly with a compassionate audience at WOWExeter today, I am assured of their support. There are four other people on the panel besides me – chair and WOW founder Jude Kelly; Elizabeth Langley and Karen Atkinson of SPLITZ; and Sasha Nathanson of Stop Abuse For Everyone (SAFE). It’s a lovely panel, with courageous stories of their own to share, and Jude is kind and accommodating. The 45-minute discussion is even-handed, with a few more minutes for audience questions. My PTSD inhibits me a little when I give my background, but I push on nevertheless, and hope the audience gets the message.

However afterwards, when the BSL interpreters are gone and people come up to congratulate me, the barriers remain. I wonder then how I can advance from this?

I am not Dr Christine Blasey Ford. Even within my own community I don’t have an international movement backing me with #IBelieveHer on social media. I do not have the time or the energy, for practical reasons as a single parent and carer of a disabled child, to campaign for better support for Deaf survivors.

I can write and make art, and use both to effect change. I can get others to do the same, collaboratively or otherwise. I can continue representing Deaf survivors at mainstream events. But I cannot do that alone. There needs to be a Deaf collective, not a one-woman band, for real change to take place.

The onus is on you, dear reader, to share this blog as widely as you can. Make sure it reaches Deaf survivors and their allies, and encourage them to join ranks with me. We may not be able to hide the emotion pouring forth from the sign language we use, or even avoid their symbiosis altogether. But if we can be emotional together, the more powerful our message will be.

The cumulus is passing. It is time.

(Edited on 16th October 2018 for clarity.)

Statements in Semaphore: an evaluation

IMG_9566.JPGWomen’s struggles. Women’s pain. Women’s compassion and resourcefulness, and the coded messages they send out to the world every day through their clothes, their language, their actions.

I cannot call this post an objective review of Statements in Semaphore or its accompanying exhibition, A Series of Events (Part I), which ran for almost a week at Platform 1 Gallery in Wandsworth Common – because I have made my own emotional investment as one of its contributing artists.

But I can tell you my impressions of what the project was about, and what made my work with fellow artist and sign language interpreter Susan Merrick, who initiated and led it, so invaluable.

Statements in Semaphore aims to highlight the rights of women; particularly, marginalised women. It began with Susan visiting the National Archive building in Kew and discovering the voices of suffragette prisoners and women ‘hidden’ in its archives during an art residency – before climbing the roof to make literal semaphore signals, filmed by an accomplice (for want of a better word).

In the two ensuing years, a socially engaged art practice exploring power, access, language and control in perpetually exciting and diverse ways has emerged. From initial workshops that involved women being photographed from behind making semaphore signals, each of which were printed on giant fabric banners and displayed in public spaces, Susan has reached a point where she is able to create ‘safe spaces’ for creative conversations with women whose voices are often ‘unheard’, so she can invoke thought, debate and awareness around contemporary women’s issues, and link it to her archival research.

As an experienced and qualified sign language interpreter, she felt compelled to add Deaf women’s voices to the mix. They are, after all, twice as likely to experience domestic abuse as hearing women, primarily because the Deaf community is so small and gossip is rife, placing them at increased risk of abuse. Deaf women also experience language and communication barriers in accessing support services, exacerbating their isolation.

In order to empower Deaf abuse survivors to speak for themselves in their own culture and language, Susan resolved to get a Deaf artist running the workshops instead, and invited me to take it on. That I had previously been involved with DeafHope, the anti-domestic abuse charity run by and for Deaf women, was sheer coincidence. I accepted without hesitation.

My workshop, which took place inside Platform 1 Gallery at Wandsworth Common station, was just two hours long. It consisted of a 15-minute ‘brainstorm’ of words the survivors associated with their experiences of domestic abuse, and then a hour 45 minutes making small-scale, mixed-media effigies that were pegged, like washing on the line, above our heads. Immediately afterwards, Susan made a 360 camera clip of the gallery space with the same associated words fading in and out as the film progressed.

In another workshop, I was filmed conversing in BSL with my partner in crime on the steps of a former Victorian hospital for women and children, as if on hidden camera. This became one of several ‘documentary’ pieces looping on a laptop screen in A Series of Events (Part I), the partly obstructive imagery of Platform 1 trains thundering past heightening the sense that you were prying into a confidential dialogue.

Platform 1 Gallery isn’t a large space. For that reason A Series of Events (Part I) felt more like an all-white sanctuary than an exhibition, the perky upcycled or vintage furnishings dotted around giving it an elegant intimacy. That was Susan’s direct invitation for visitors to sit down and chat with her about their life experiences over a cup of tea or coffee.

On the one day I was able to visit the completed exhibition (single-parenting commitments kept me away), I found it very moving. There was a sense of the outwardly pristine finally unveiling signs of women’s oppression, like gilded houses occupied by victims and their still-active perpetuators. You had to engage directly with the effigies, the documentary pieces, the 360 film clip (now accessed as a virtual reality installation), the vintage clothing that Susan had strung up like a giant textile cobweb, in order to identify the coded messages.

Susan extended the theme to the train platform. At 12 noon and 6pm every day, she’d venture outside to make semaphore signals, but her performance had no fixed content. Over time, she also lined up vintage shoes, some of which she walked briefly in; quietly knitted an ultra chunky scarf after a particularly affecting conversation; and roped in volunteers like myself and a couple of others to  copy her signals with revolving layers of borrowed clothes. Each of these performances symbolised the myriad ways in which women try to reach out to others for support without endangering themselves.

This was women reflecting upon themselves, simultaneously looking for a means to liberation and self-respect while maintaining their right to be treated as fellow human beings. As a member of the same gender, it made sense that I should respond to the project with two pieces of my own – and one of them was a gilded house.

Reaching (2018) was a 3D cardboard house model sprayed metallic turquoise on the outside with white tissue roses jutting out, while Selfie (also 2018) comprised a framed 300mm x 300mm largely blue monochrome self-portrait with (obviously) a mobile in my hand, drawn on manilla paper.

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Reaching seems to have left a huge impact on many people. Given the deceptive appearance of the exhibition – although I am obviously touched by the public’s emotional reaction, I am not surprised.

You entered the space, saw the metallic turquoise and gold house on the low side dresser with the pretty white roses and, wondering why some of them were singed, peered inside – only to be confronted by dark fake blood and debris splattered across one corner of its pretty floral-print walls and gnarled roots. I don’t need to explain why the roses got burnt as they erupted from the house.

Further enhancing the sense of ‘living space’ was a rail and a floor pile of donated vintage clothing, rows of shoes fringing the adjacent side dresser. These were offered in free exchange for the shirt off your back, as if to give you another crack at a fresh start or a new identity.

Interestingly, within four days of its opening, Susan – who had manned the exhibition from day one – was exhausted after several intense conversations with strangers, and wanted to hide; hence the enormous textile cobweb, part-draping the gallery entrance.

If you have been following my work on Instagram, you will know that for the past year or so, I have been making and posting almost every day very small mixed-media drawings that utilise fine lines, cross-hatching and sometimes experimental use of colour and tone.

For some time now, I have been seeking a way to free up my drawing and my thinking so my work on Statements in Semaphore, however much it diverts from my practice, is a crucial step towards developing a bolder and more experimental approach.

Certainly, I valued being able to avoid following a rigid structure to my work with Susan Merrick. Not only did it allow for childcare responsibilities, but also real scope for flexibility and lateral thinking. I am honoured and proud to have had such rich and fulfilling discourse with her and those who participated in my workshops, and more crucially, feel more emotionally grounded as an artist, a Deaf person and a woman – which is exactly what meaningful, socially engaged art practice should do.

Statements of Semaphore is a project led by Susan Merrick and funded by Arts Council England. A Series of Events (Part II) takes place at Princes Hall, Aldershot on 18th and 19th October 2018. See website

#dailyartchallenge

Since I began convalescing, I’ve had the opportunity to revive my passion for drawing. I did this via a challenge that I set myself this time last year, which is – simply, to draw something every day. This is much harder to do than you think.

Check out these works so far.

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Day 21. Picking up where I left off.

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Day 22. A mixed media drawing done for a friend.

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Day 25. A 15-minute coloured pencil study, following the outline drawn with an ink-stamp roller by my six-year-old.

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Day 28. Study of a local terrace in soft pencil.

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Day 30. Drawing an Underground station in biro without lifting the pen off the paper.

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Day 31. Portrait of my late father in soft pencil.

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Day 32. Drawing my left hand in pen with my non-drawing hand (right).

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Day 33. Mixed media drawing. Who needs yellow?

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Day 41. Doodling wet diaphanous folds in soft pencil, a la Man Ray.

Day 43. Mixed media drawing – my rather Japanese take on Erwin Blumenfeld’s 1937 photo, Lisette, Paris.

Day 44. My first quick sketch of a swimming pool.

Day 45. Coloured pencil study of rabbit ears.

Day 46. Fine pen drawing of a local building next to Sainsbury’s.

Why do it? However well-practised I am at writing, there are days when emotions, dimensions, perceptions materialise that cannot be encapsulated by the written word, for all sorts of reasons. Perhaps they are repressed feelings, or I just haven’t found the word to describe them. Perhaps they’re simply beyond language. I need to reconnect with my surroundings, make another form of expression integral to my life, and increase my appreciation of others.

There are scientific reasons, too, for making art.

For me, it’s also a way of enriching my writing, and it may even contribute towards an illustrated book in the future. My drawing and my writing always went together when I was a child. (I have fond memories of my religious knowledge teachers giving me lined textbooks with blank inserts to draw on for the Bible stories that I was tasked to write every week.) I see no reason why the two shouldn’t meet again.

Let’s not treat this as a sneak preview of my next book though. I’m not making a commitment to one just yet; it’s early days.

For now, keep an open mind, and enjoy the drawings as they are.

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.

Home.

Now that I have finished my course of antibiotics and am no longer infectious, I have been able to go home in the past two days. 

The difference between rest at home and rest in hospital is remarkable. I noticed as soon as I came out of my windowless room. 

Whilst in isolation, all I did was potter around, read, write, eat, wash, and sleep. So when I had visitors – I had eight altogether, the last one who came unmasked with a big hug, my first in eight days – I (mostly) had the energy to chat and laugh with them. Reaching a Zen-like state was that simple.

Post-discharge was another story. On Tuesday after lunch, I got dressed ready for my mother to take me home. Even before the official discharge call, doctors and nurses were getting ready for my departure – they had come in unmasked the previous night, and told me the antibiotics dose they were administering would be my last.

(Of course, just to be sure, they also ran a CT scan, and then one more dose of antibiotics, before I got dressed.)

After the blandness of the isolation room, the colours of the world beyond – the unit that brimmed with patients and visitors, and the warm, sunny corridor outside – leapt forward anew. I basked in every one of them.

‘Ward in Arles hospital’ by Vincent Van Gogh, 1889
 

Yet the moment I crossed that one corridor, my head began to spin. I got sweaty and couldn’t hold myself up anymore. I had to ask to be wheeled to my mother’s car instead.

I have since discovered how easily my energy saps whenever attending to my children’s needs (especially in the mornings), standing too long, or witnessing any sort of emotional stress. 

When that happens, I sit down immediately and just zone out. That has really helped me conserve energy for the rest of the day, although it hasn’t been easy. 

My children, being so young, still don’t understand why Mummy is taking so long to recover. I guess I will have to keep having the conversations. Both kids’ schools are willing to give extra emotional support, but the onus will always be on me, as their mother, to explain.

I have been very, very lucky. My official diagnosis was Neisseria Meningitidis. I could have lost my CI, my limbs, my eyesight, got into a coma or died. Instead I was walking, just, on my third day in isolation. (Albeit after prising myself into sitting upright of course, with a lot of determined grunting and clutching the bed rails as much as I could with my weakened arms.)

That first time, when I put my feet on the floor, my body felt almost like a leadweight on jelly legs. The next day, I was shuffling more, and my bowel movements were clean. 

(Believe it or not, I had to wear a nappy early on despite not eating for three days, but resolved to flush it all out by drinking tons of water. Come day four or five – it was over. Nurses were very impressed.)

Now I am home, I can see that the road is long – but I know I will get there. Full recovery is expected to be six months to a year. Thankfully I have no chronic health conditions. Historically, I barely have had complications arising from my illnesses; I have a strong track record in recovery. Prognosis is good. 

Although social care has had to be organised piecemeal, I have welcomed every kind of extra support going – schoolfriends’ mothers, a regular carer, my own friends and neighbours. I am sure everything will come together in time. 

Meningitis and I: one Deaf person’s account 

I have bacterial meningitis. This is my sixth day in hospital. 

It’s the same illness that made me deaf as a baby. Just my luck. At least now I’m an adult and it’s been caught early, I can fight back more easily. 

I have been told by a doctor doing the rounds that I do not need rehab because I can walk, although mastering even short distances will take time. I’ve been doing self-care almost from day two – washing, cleaning my teeth, keeping myself mobile as much as possible. 

My appetite is returning, and I take care to eat balanced meals as far as possible. I keep drinking water in abundance. My body is very efficient at recovery, and I want to keep it that way.

You’d think that after six days in isolation I’d be clawing the walls. Not so. I’ve never felt more serene in my life. I have not felt depressed once, although I did have a good cry when I received a beautiful handmade card from my five-year-old son. 

It helps that I don’t have my CI processor with me, and haven’t heard a pip for six days. That chaotic Monday night – when an ambulance finally came, after four 999 calls by four different people – I’d struggled to think strategically. 

I hadn’t eaten for two days, and all the water I tried to drink came straight back up. Coca-Cola stayed down the first time, but not the second. It hurt to move. The daylight stung my eyes. The headaches – oh, how they banged. After only just managing the morning school run, I went to bed hoping to sleep it off – but when I woke up three hours later, I felt worse. 

So I texted the mother of one of my son’s school friends and asked her to accommodate him for the night after school. I hadn’t packed a bag. She sweetly offered to buy him a change of clothes and a toothbrush. 

That was the easy part. My older child, a beautiful girl who has cerebral palsy, was a whole other matter. I tried asking a carer that we’d had before, but she had full commitments. I tried my daughter’s school, again to no avail. 

By this time, I could barely lift my arms or keep my eyes open. Hours sped by. I looked at my watch and realised my daughter needed collecting in 15 minutes. 

By the time I reached my mobile – which lay on my bedside table – half a hour had already gone. 

My mobile burred constantly with text questions. I could only manage two or three words of reply. All I wanted to do was to lie in bed and leave everyone else to sort it out. My only wish was for somebody to call 999. 

(I have since learnt that my daughter’s school contacted her social worker, who arranged emergency overnight respite care, while the father of my children arranged to have them for a few days. He has since taken a week’s compassionate leave. Both children are aware of the situation.)

Afternoon shifted into evening. It felt like my world was at a standstill. The view from my bed stayed the same. In my CI processor-free state, I saw no passing car lights reflected on the walls. 

Night descended, and everything went monochromatic grey. There were no lights on in the flat. I felt panicky – but only momentarily: I was so ill. 

It’s funny how when the paramedics finally poked their torch through my bedroom door, my memory goes thin on detail. The bedroom light was switched on, and I recoiled like a vampire. A woman moved directly in front, casting her features in blackness. A local friend came in with them to help with communication. How had I managed to text her?

So many questions! They plonked a heaving nappy change bag on my lap, and asked if that would do. I said yes, because it had my make-up in it, and my keys. They threw in some other stuff – a book to read, my mobile and its recharger – and off we went. 

The ride to hospital was agony. I felt every rattle and bump as if it was to my naked bones. I clutched my hooded puffa coat to shield my eyes from the searing fluorescent lights. 

I think I stayed in a side room in A&E for two nights before being moved to my own room in Ward 10 (the Assessment and Observation Unit), where I have remained since. 

From experience I knew my hospital didn’t have the best track record in booking BSL interpreters, so I insisted on written notes. I was also lucky to have my mother around as I went through an elimination process to identify my infection. 

Soon after arrival in A&E, doctors started talking about a lumbar puncture. They said it was to rule out meningitis, but gut instinct told me otherwise. So when diagnosis came – via a short note – I simply rolled my eyes and said, ‘Well, at least we know what it is.’ I was more disappointed that I had to stay in hospital for a week due to the antibiotics. 

Upon moving to Ward 10, it felt odd, but not scary, to see staff in pale blue masks, aprons and gloves. (I was in isolation, after all.) Notes became virtually everyone’s only means of communication. 

Even personal visitors had to don the surgical get-up. My mother cut a dash in hers. A friend hoping to visit got turned away by the hospital reception, who didn’t know Ward 10 policy (it’s open all hours). 

I got used to it. I became intrigued by how the masks drew attention to the character of the eyes, and it was fun seeing how people adjusted to writing notes. 

My older sister, who came with her daughter, virtually wrote letters, which were marvellous to read. Others wrote one or two words at a time, usually due to poor English. 

A couple of nurses seemed to grow an affinity for me – notes can feel so personal. When I asked for ReadyBrek at breakfast, the woman taking my order wrote on a napkin, ‘We don’t have that. Would you like anything else dear?’ 

One unexpected development during my hospital stay is the visual hallucinations. They are not a high; I was never delirious or psychotic, despite a temperature of 38C initially. 

Rather, they are an inner cinema, there the instant I close and cover my eyes – an effect of the antibiotics and painkillers I am taking. 

In the first two days, they appeared as crisp HD digital animations that evolved constantly. I have managed to note down a few tableaux, which I’ll describe here. 

Ancient Egyptian cartoons, reworked in contemporary colours, projected as a film on a screen inside my eyelid. Handsome young bearded men in neck-ruffs, their sumptuous 16th century costumes becoming a profusion of flowers and foliage as you peer over their shoulders. 

Twisty camera angles of the kind you see in CGI sci-fi battles, swooping down to a strange, dark red, toad-like creature that opens its mouth to reveal a small circular stage with Italian commedia dell’arte characters, dressed in white and yellow, posing and smiling benignly. 

Tall, full-bodied digital roses, their deep pinks extending to the stems and leaves, being scanned top to bottom as if by a film camera on an adjustable base. A dazzling multi-coloured starry night sky, that turns into twirling rainbow fairy dust that then flings itself abundantly and diagonally back like luxuriant fireworks high up. 

Constructing these tableaux would be years in the planning. I don’t think they would work as paintings, but rather as immersive sensory multimedia installations, involving creative lighting, sculpture and rich textiles stitched to a level of craftsmanship equivalent to the Renaissance. I’m not sure I could do them in my present weakened state. 

Sadly, as I get better the visual hallucinations fade, blur, or solarise, a bit like a television struggling to produce a good picture. It’s all par for the course. 

Interestingly, the last clear tableau I got was of a gentle linear drawing of a bejewelled Buddha, floating in front of a watercolour patch of blue sky on parchment paper, opening and shutting like a door. Scrolling down I got a sense of being underwater – though the parchment backdrop remained – with huge sploshes of Yve Klein blue paint seeping, then indigo. 

The parchment then became a mini-photographic studio backdrop, with a simple road being pencilled in from the crease, and a toy pewter VW Beetle driving down it. Instead of the HD digital sheen, that scene had the look of 1990s TV footage, and got me thinking about the evolution of art through the centuries. 

Now that the visual hallucinations are fading I am enjoying my book (Angela Carter’s Book of Fairy Tales, if you must know) and my writing is flowing again. (I posted this in a hour.) I hadn’t realised how rare it is for me to get away from it all due to the vigours of single parenting and just potter around, hence my serenity. 

Now I must sleep. I need all the energy I can get for discharge day tomorrow. Thankyou for reading. 

New blog 

I’ve started a new blog, where I give my definitive views on a variety of topics, touching upon politics, art, film and culture. 

It’s a way of flexing my political muscle that I’m not able to here or on my other blog, The Mostyn-Thomas Journal

Check it out. To commemorate the 20th anniversary of her death, this week’s topic is Diana, Princess of Wales. 

https://mostynonpolitics.wordpress.com/2017/08/31/diana-princess-of-wales/