Storying Sheffield

Revisiting family illness

Mel is a student currently taking the Storying Sheffield course. In this piece she reflects on family, loss, memory, and imagination.


After reading Caroline Pearce’s piece ‘World Interrupted: An autothenographic exploration into the rupture of self and family narratives following the onset of chronic illness and death of a mother’ and the blog post by a previous student responding to this text, I immediately thought of my Grandfather Sidney Scott. Although he suffered with dementia instead of MS I found Pearce’s description of MS “spoil[ing] identity” extremely fitting for the effects of dementia. When I was in year 10 as part of my coursework I wrote a short piece of creative writing on my Grandfather’s deteriorating condition: the piece was used at a Barbados Alzheimer’s awareness convention.


The old man, lost in himself

His glasses rested on the tip of his nose due to his uncomfortable slouched position. His head hung puppet like as if he no longer had control. He stared to the floor at my feet, as he rambled on narrating all of his life stories and memories as one jumbled blur. He held my hand loosely; he was weak. The veins on his hands ran visible, creating a map across his skin- the skin that hung off of his skeletal form. As he smiled every crease on his ancient face cut deeper. His eyes, oh how his eyes did not lie. Their flames burned wildly trying to escape, screaming to be released, trapped in this lost and confused state. He looked up at me then and said, “You are such a lovely person, you come into my home, a stranger to me, and you love and care for me as if we were family.” It used to hurt when he said this and I’d try to help make him remember but these days I’ve given up trying. Sometimes we see a glimmer of that fighting flame escape and he says in realisation, “I hit my head and since then I haven’t been the same.” Or, “I’m confused, I don’t feel myself,” maybe he knew before, maybe he knows now, maybe he realised he was forgetting things but just didn’t mention it to anyone. But it’s too late now, he has changed, trapped in this strange, unfamiliar place. He cries sometimes. Sits on the edge of his bed and cries. He says “I want to go home.” We tell him, “This is your home.” It is heartbreaking.

My Grandad was always an extremely intelligent man; he spoke five different languages and was fascinated by classical literature. It is sad to think that he used to spend all of his time reading books and writing down anything and everything, as now he can’t even write his own name and can barely read a sentence. Grandad loved to talk and would rumble on for hours. He loved telling me all of his stories about when he was young. Fighting injustice, battles with racial prejudice- these were the ingredients of my Grandad’s tales, but for him these memories began to fade and when he tries to recite them now the words escape his mouth like jumbled jigsaw pieces.

It all must have started a few years ago when my Grandma passed away, he first began seeing things, he said they were ghosts. He would phone and say they he’d seen his late brother Rupert and Lily, my Grandmother. We all suspected that he was just lonely and trying to come to terms with the death of his wife. Little did we know that it was his memory deteriorating and a horrible spirit taking over him.

Grandad’s flat was simple to find, the last right on the ground floor in a large block of flats. His chair was positioned directly in front of the back door and his writing desk accompanied him on his right hand side. His most loved bookcase stood proudly in front of him dominating the wall on the left hand side of the door. On it rested books such as TheIliad, Odyssey, Aeneid and Politica all of the scholarly works by academics. He had enough books to found a library, it was packed full. There was every book you could have imagined in that magical bookcase except one which was clearly missing; its single space appeared uncomfortable and out of place even on a cluttered shelf. This obvious space belonged to the book ‘The rise and fall of the Roman Empire which was Grandad’s favourite book and always lay comfortably on top of his writing desk as it was one he would read regularly. A gift from his adopted father, its red binding was worn and tattered, the edges were frayed with white threads which would fall from the book and stick to Grandad’s woollen trousers. He would always tell me it was the magic of the story falling from the pages.

The text on the front of the book was a bold black italic font and was difficult to read. I would always say, “This is Grandad’s book,” because the writing was similar to his handwriting. The pages of the book were thin and stained and looked like the pages found in an old bible. Despite the book being so old and worn it still held so much life, sentiment and knowledge. Just like my Grandad.

I remember that day only too well. Grandad was having a very bad day. I sat on his chair whilst he spoke to Mum and Dad in the other room. I looked on top of Grandad’s beloved writing desk and noticed his favourite book was missing. I asked him where it had gone, and he couldn’t even remember it was ever there. It was from then on that I knew my Grandad was slipping away.

He seemed to deteriorate so quickly from then, it’s amazing how when someone you love is slipping away time seems to go so quickly, you don’t seem to be able to ask all the questions you want to or do all of the things you’d always wished to. With each day the spirit stole more from him- he stopped reading; no longer watched telly or listened to the radio; he was unable to cook and even struggled making a cup of tea. Hours were spent wandering in search of his flat and he’d even put on three shirts and would wear clothes inside out. He was unable to look after himself and became completely dependant on others care.

The hardest thing for me was to see him forgetting theses everyday tasks and even how to eat using cutlery- he would attempt using a pen or whatever he had in his hand; he was like a child, except each day he grew younger. A man who was once so proud, intelligent and independent completely stripped of his talents. My Grandad, ‘once a man, twice a boy’.



My Grandfather was a very quiet and extremely intelligent man full of stories of his life in Kingston, Jamaica, and his outstanding achievements such as a scholarship to Oxford University to study classics, and the founding of a now extremely prestigious school in Jamaica. As his illness developed, we were able to see my Grandfather visibly slipping away: the man who once always dressed in a suit and hat now forgot his hat and could no longer button his shirt. It was very difficult to watch a man once so independent “transgress” (p.139). As Pearce describes: “Grief and illness not only force the individual to transgress unwillingly into the role of other but they do so by undermining everything that the individual assumed as reality.” My Grandfather’s reality became past events, he began to live by his long term memories – he talked about seeing my recently deceased Grandmother (his wife) and his late brother. He became a different person – so distanced from the real world.


My Granny Korah on my Mum’s side suffered with Alzheimer’s – the illness began to take effects very early in her life. I remember feeling extremely angry at the illness for taking her away from me, not allowing me to have a ‘normal’ relationship with her. From the age of about 7 I would pray every night that someone would find a cure and make my granny better. From about the age of 14 I prayed less and began to lose faith in the discovery of a cure in time to bring back my Granny. Granny Korah died in the summer of 2013.


My mum struggled very much after losing her mother and in a similar way to Pearce took to her profession as a grieving process. My mum is a textile artist and created an art quilt of my grandmother’s deteriorating condition. The piece was exhibited in the Festival of Quilts at the Birmingham NEC. My mum struggled to complete the piece, finding it extremely emotional. The final product was outstanding, with small images of memories and an almost abstract deteriorating portrait of my granny’s face. The words “Alzheimer’s took her” are written across each face. In comparison to my mum’s other work the piece is very dark and captures a very eerie sense of sadness. After this my mum did a series of pieces all based on the same image of my granny – the series was entitled “Always about my mother”. Some of these were in one of my mum’s exhibitions, and one piece was actually sold. This was a crucial point in my mum’s grieving process. The lady who bought the piece, understanding the depth of its content, told my mum: “Don’t worry I will look after her”. For my mum, I feel that these words were reassuring and allowed her to feel comfort in the literal letting go of the piece and the metaphorical letting go and coming to terms with her loss. These latter pieces in the series provide a window to my granny’s cheery personality. Although they still reveal the haunting nature of her illness, in the abstract portrait of her face the vibrant colours and free flowing lines offer a greater sense of freedom.


After re-examining my mum’s work, I felt inspired, motivated and moved. I felt her blog posts and her work had a very similar feel in terms of the grieving process to Pearce’s study. Whilst talking on the phone with my older sister I did a few watercolour sketches which revealed a sense of entrapment that illnesses such as dementia and MS have on those affected. I attempted to capture emotion in the sketches. I found it necessary to be somewhat distracted in order to express them. Whether this decreases their authenticity I do not yet know but for me, like the challenges my mum faced when creating her series, it becomes very difficult when you are overwhelmed by the emotions you associate with what you are attempting to portray.