I grew up in Brighton with my twin brother and our parents. There was just the four of us. However, throughout our childhood there was always a big elephant in the room as we should have been a family of seven. Two of my brothers and a sister had died from Cystic Fibrosis. In the early 1950s it was a recently discovered disease – difficult to diagnose with any kind of effective treatment many decades away.
I do not remember my brother, Martin Walter, who died in his infancy (27th March 1950 to 24th May 1950). My sister, Wendy Patricia, lived a little longer but I only recall her returning home from hospital just the once (27th May 1955 to 10th November 1955). As far as I know there is just one photograph of Wendy being held in her Mother’s arms but it does not show her face.
………and then there was my brother, Barrie. His battle for life dominated the early years of my childhood as this brave little fellow battled gainfully against ill-health. All these decades later I can still hear him coughing. The coughing fits seemed, to me, to last an eternity but he did not know he was ill and at other times would fill our lives with an infectious smile and mischievous giggle.
Barrie’s ill health dominated my early childhood. My brother and I did not resent this. To us it was the normal. In the desperate search for treatment and care, Barrie was shuffled around from hospital to hospital across Sussex and London. He spent most of his hospital spells in Brighton’s Royal Alexandra Children’s Hospital but he also found his way to Chailey Heritage and the Westminster Children’s Hospital. Many years later I was to work in the hospital group to which it belonged and the first time I walked in, memories of visits to see Barrie came flooding back. It seemed hardly changed although nearly 20 years had passed.
In those days hospital visiting was much restricted. Many treatments did not stretch far beyond peace, quiet and bedrest. Children were not allowed to visit other children – even their own brothers and sisters. As a result, we were left in a playroom near the main entrance while my parents went to the ward. It felt they were away for hours but, of course, they were not. I had a fear they would not pick me up on the way out, so I refused to play with the other children instead choosing to stand by the door with eyes firmly fixed on the entrance. I often wonder if my dislike of organised board games dates back to this experience plus my only recently dispelled sense of abandonment when I am left alone.
My father worked in a grocery store. In those days shops closed for half a day on Wednesdays and closed at 1pm on Saturday – perish the thought those days should return! This meant hospital visiting day was Sunday. It would often dominate the day and could involve a train journey to London or a bus ride to Chailey. The Alex was a shorter bus ride across town.
It only recently occurred to me that many times Barrie would be left in hospital and would not see his parents for a week. How did they and he cope with that? How did my parents keep in touch with the hospital? We did not have a telephone. Most people did not in those days. I guess in an emergency the hospital would ring my Dad’s place of work which in the early 1950s workplace would have been a special privilege.
There came a day when Barrie returned home from hospital. I recall thinking he was better now and was home for good. He was thoroughly spoilt, and my brother and I played with him endlessly. There was always the giggle and smile but always something else – the endless rasping cough plus lots of medication to be taken. My Mother trained my brother and I to give Barrie physiotherapy in the never-ending battle to loosen the phlegm on his lungs.
Looking back it feels it like he was home for quite a while but probably that was not the case. I woke one morning and he was gone again.
There came the fateful final hospital visit. My brother and I were called from the waiting room to see Barrie. My parents did not say anything and busied themselves fussing around. I walked towards this small grey looking body under an oxygen tent. I thought I would be able to talk with him but instead he lay there in what I would now understand to be a coma. I remember feeling annoyed that I could not get nearer to him. I guess he was surrounded by medical equipment. We had been summoned to say goodbye but were quickly ushered away.
My next recollection, I do not recall if it was the next day, was waking with a sense something was wrong. The house was quiet, My mother was not moving around and my brother and I washed and dressed unsupervised by our mother. My father was not around. I guess he had gone to work. The rules of life were different in those days. My brother and I went downstairs and went and stood in the living room. My mother appeared for the first time that day looking pale and drawn and simply said “Barrie has died”. My brother and I, two confused 7 year olds, wept into her apron.
We did not attend the funeral. Children did not in those days. There was a day when a family friend met us from school and made our tea. It must have been that day.
A new routine took over. Instead of hospital visits, trips to the graveside became the Wednesday afternoon routine. My parents could not afford a gravestone (an omission my brother and I have subsequently put right) so we went armed with shears and flowers to tend to the little earth mound. An even smaller mound stood adjacent. We would clip the grass so each blade was of equal short length. The previous week’s flowers would be put on the compost heat and the highlight of the visit would be the run up to water tap to fill the vase. Even today the smell of rooting flowers and sound of clipping shears remind me of those visits. When no more tending could be done, we would stand in quiet contemplation. Often my thoughts would stray to the weekly visit to the cinema that would follow.
After a period of time, the weekly trips fell away as life, as it always does, moved on. My father changed jobs which involved a daily train journey to Uckfield and my mother went to work in Woolworth’s. My brother and I moved through our schooling.
How my parents coped with two family bereavements in just over a month was never discussed. Such matters were kept to yourself in early post-war Britain.
Barrie would now be in his late 60s. The career and family he may have had is a source of eternal mystery.
So why write this story now so long after Barrie passed away? There are perhaps only four people living who can recall Barrie – my brother and I and our half-sister and half -brother.
Quite simply the internet and modern technology provides opportunity after all these decades to record for posterity one brave little boy with a big smile and an infectious giggle.
Barrie Alan Nieland 27th May 1953 – 28th December 1955
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