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My voice was a stream of babble that was not quite nonsense. It was funny, at least to me, because the only words I could say seemed to begin with B – and end with B. In the background, the clang of modern hospital life overlapped my efforts for clarity as I tried to speak. Bub bub, bib bob, said I, not realising the enormity of my sudden illness.
I was not conscious of my mind sliding off elsewhere, but I could hear collared doves in the background, and remembered that I lived by the seaside. I have no conscious memory of a literal horror movie darkness, as I thought of when I might next visit the promenade. The genteel peculiarities of my earliest times in a hospital did come back to me amid my battle to grab a fuller awareness of where I was.
Of all people, I remembered The Sand Pit Lady, who wore beautiful brown catseye glasses, pearls, and a navy twinset. She had a kind face and a beautiful voice. Calm with kindness despite being very posh, which made some of us giggle. A true human being alongside vicious nuns and creepy old porters, she was the highlight of my week when I was four years old. Especially as, back then, ill kids like me weren’t allowed long parental visits and the weight of nervous expectation for their arrival hurt as much as when they had to leave, the entire episode occurring within a cruelly minimal sliver of time.
The Sand Pit Lady was a volunteer and, to this day, I wonder how she ended up scooping out shovels of sand onto our little iron truckle beds, with their huge, ugly, grey oilcloths. There was a frosty discouragement towards mobility for ill kids at that time which helped avoid sand spreading, though it was never prevented entirely.
By five o’clock on the day of The Sand Pit Lady’s visit, there would be grumblings from some of the wealthier children that they were itchy and that playing with sand was really too much and where was the clean and plastic Spirograph? Meanwhile, some of the rougher kids would throw down dares to do unspeakable things in the sand, but I never remember this actually happening. We were all too fond of The Sand Pit Lady’s visits and the break she gave us from the monotony of stiff ‘60s hospital life.
Life on a hospital ward now is a planetary distance away from those times.
My recent emergency stay in an NHS intensive care unit was a catastrophic awakening.
Not only on a personal level, but also as a realisation of how crushed our NHS is, at times its humanity hacked away as a result. There are the lies and impostures dealt to it under the shabby umbrella of supposed COVID prevention strategies, and a Government operating on levels of self-interest and greed that we have rarely seen before.
On 15 August, a day before my 63rd birthday, I experienced several sudden brain haemorrhages and consequent seizures, after a headache of outrageous pain. I knew there were changes. I was not quite me. Something had gone wrong, but my will – infamously stubborn – fought furiously to understand why the cooperation between my thought processes and physicality had broken down.
Brain bruised and bleeding, I slipped in and out of comas. Even now, I have minimal memory and no sense of how critically ill I was at that time. I went through the typical blur, thoughts forming into random snippets that frayed into longer, fractured stories I was somehow telling myself.
The care I received was impeccable.
Nurses from around the world – Nepal, the Philippines, South Africa – bathed me with tireless care and gentle attention while showing support for each other at such difficult times. Soothing elderly patients when the mobile commodes ran out and a queue of frightened elderly formed. Young healthcare assistants extending their already long shifts. Staff shortages. Budgets squeezed and continuously mismanaged by faceless executives existent only in the eye-rolls and whispers of harassed staff wearily discussing strikes.
I lived this for four weeks.
The most vulnerable pay the highest price on repeat – staff and patients – and I witnessed a quiver of crass abuse against patients. Yet, overall, the medical staff were a different crew to those I remember in my childhood, the last time I had such an extensive stay in hospital.
Now, almost everyone is helpful and caring – they even knew about disabled people, those of us who aren’t defined as ‘sick’ but who live with our impairments day by day.
‘Disabled’ patients with rights were unheard of when I was a child, as the social model waited in the background with not even a hint of the activism that would murmur it into life. There was no understanding that giving a child like me ‘normal’ heavy cutlery created a barrier that meant I couldn’t feed myself – an issue resolved easily when an auntie brought me plastic cutlery.
As I wrote in my first column for Byline Times, it is “the confrontation with the imposed barriers and breakdown of societal organisation that makes us disabled”. It’s not me; it’s what society creates around me (including stupid cutlery!)
I knew it then before I had my grasp of language and an understanding to articulate it. There are many improvements these days but it remains a fight when we’re in hospital, a place for the sick or damaged ‘normal’ people.
When I eventually regained full consciousness, I was consumed with an unexpected joy.
The hospital is based in north Hastings on a ridge, which slips around ancient rural hamlets, and all I could see that made sense was nature. A maple tree with those glorious pointy finger leaves, squabbling ducks, pretty collared doves, and a Sussex sky of pristine blue. Poets’ blue. As consciousness lured me back from nowhere land, I allowed myself this embrace of nature, revived by such overwhelming love from my terrified friends and family.
Ultimately, they were the ones that sustained me. And, a little broken around the edges, with inexpressible gratitude, I prevail. With more stories than ever.
Penny Pepper is an award-winning author, poet and disabled activist whose work focuses on identity, difference and what makes us human