Meningitis and I: one Deaf person’s account 

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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. 

6 responses

  1. Stephen Iliffe

    Oh, Melissa. I was staggered by the vivid and lyric prose you were able to compose so soon after such a draining event. Like field notes from the front line of human consciousness. Thanks for sharing with us. I hope one day when you and the family are in the right space, you’ll be able to work these up into the multi-media experience you describe. Get well soon! Stephen xx

    1. admin

      Humbled by your praise. Thankyou xx

  2. Esther Bevan

    Thank you for this blog. I felt like I was in the hospital bed next to you and looking in on your thought cloud. Thank you. Glad you’re going home and that you had some unintended rest. Enjoy your beautiful kids. Esther xx

    1. admin

      Thankyou xx

  3. Annette Mostyn

    I love your dream sequence.

    1. admin

      I love you, Mum.

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