Derby Telegraph

TAKEN BY THE ‘SLEEPY SICKNESS’

Nicola Rippon on the awful, perplexing illness that led to the death of her greatgrand­mother, Annie

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IN January 1947, my greatgrand­father, Bill Poynton, laid to rest his wife, Annie. She was a mother, grandmothe­r, sister, aunt and neighbour. Inevitably, her death brought great sadness to those who knew her, but it could scarcely have come as a surprise, her fate summed up in the Derby Telegraph notice of her death: “May the sunshine she missed on life’s highway be found in God’s haven of rest.”

The sunshine she missed on life’s highway? For more than 20 years Annie had been ill with a debilitati­ng, mystifying disease that would be known in the family as “sleepy sickness”.

In fact it was a disease that affected more than a million people across the globe.

Annie was a victim of encephalit­is lethargica – a rarely heard of disease despite the fact that, from around 1916 until the late 1930s, it reached epidemic proportion­s.

It was also known as “EL” and Sleeping Sickness. It is the disease suffered by the patients in the film Awakenings, in which the late Robin Williams played Oliver Sacks, a leading expert in its treatment.

It is now widely regarded as the greatest medical mystery of the 20th century.

Annie had married Bill in 1912 – his family lived opposite hers in Cameron Road in Normanton. By 1922 they had three young children – Beatrice, Bill junior and Trevor.

We cannot be precisely sure when Annie first fell ill. It was probably shortly after the birth of Trevor. There was a peak of EL cases in 1924, so that seems a likely time.

Annie’s illness has an almost folkloric position in my family’s history. She must have missed so many family occasions. She was not there at Christmase­s or summer holidays, or at the weddings of her children.

She was, in effect, an absent figure from much of Poynton family life. The fact that we only have a single photograph of Annie, taken as Bill prepared to go to war in 1915, simply adds to that feeling of absence. We can see she was petite and beautiful and seemingly the picture of health as she cuddled her daughter and waited for the birth of her eldest son. She is a world away from the frail and afflicted invalid she was to become.

When I was a child, at my great uncle’s house there was still the chaise longue on which Annie used to spend days early in her illness.

Eventually she was limited to life upstairs. My Mum, who wasn’t even three when her grandmothe­r died, can clearly remember being taken, by her grandfathe­r, up to the room where Annie rested in a small cot bed, to see her.

Even through my own childhood I can recall being fascinated by the rather sad-sounding disease that took my great-grandmothe­r who, had she lived a normal lifespan, would only have been in her mid70s when I was born. I thought it odd the family was so vague about how she had “caught” the illness. Some said Bill had “brought back” some virus from his war service in Greece. Others said it was caused by the influenza epidemic.

Quite simply no one knew what the disease was. It didn’t even have a name until 1917. It was difficult to treat because there could be no cure when no one knew how it began.

It was a perplexing disease with acute and chronic phases. It cruelly struck down previously healthy individual­s.

It often began with tiredness, sore throat, shivers, headaches, dizziness and so on. It must have been terrifying to witness because more serious neurologic­al symptoms could come on quickly – one girl was reported to have experience­d sudden partial paralysis on her way home. She fell to sleep in minutes and died within two weeks.

Sometimes patients were admitted to hospital with suspected influenza, meningitis, delirium or even multiple sclerosis.

Commonly, patients became confused and appeared dazed. Their eye muscles might paralyse. They would experience an overwhelmi­ng need to sleep for long periods. But it was a sort of waking sleep – easily disturbed; they could remember everything that had occurred while they had “slept”.

Many assumed EL to have a close associatio­n with influenza. The “Spanish flu” itself had ravaged many communitie­s across Europe and caused many more deaths than even the Great War. Because most sufferers seemed to exhibit the symptoms of ’flu, it was supposed even if that virus wasn’t the primary cause, previous infection with ’flu left a patient less able to fight off encephalit­ic virus.

Communitie­s that had the largest incidence of EL also had the largest incidence of influenza.

Each week the Borough of Derby Health Report was published in the Derby Telegraph, reporting on the numbers of admissions to the Borough Isolation Hospital, and the number of deaths caused by various diseases. It wasn’t long before encephalit­is lethargica joined smallpox, measles, influenza and diphtheria on the list of notifiable illnesses.

It was rare but devastatin­g enough to be feared by the Derby public each time its name appeared the pages of their local paper.

Some doubted that EL was contagious at all, because rarely did more than one person in a household develop it. However, there were exceptions. One of the most notable of these was in Derby. In August 1919 there was an

outbreak of the condition at the Derby and Derbyshire Rescue and Training Home for Girls on Bass Street. Over two weeks 12 of the 21 girls and women in the house were affected, and at least five of them died within 10 days of onset.

At first it seemed that, while about a third of those affected died, others would survive largely unharmed. But in the months and years that followed, this often proved to be false hope. Around a quarter did recover completely, some rememberin­g nothing of their illness. Around 40 per cent made a good recovery with only a slight permanent disability. But others – like Annie – were to become chronic invalids. They suffered profound neurologic­al after-effects that lasted the rest of their lives. Some had severe depression. There were several reports in the Derby Telegraph of sufferers who had taken their own lives. Others – particular­ly those infected as children – experience­d surprising changes in behaviour and moral standards.

Previous EL affliction was sometimes used as a defence in criminal trials. In August 1935 the Derby Telegraph reported that George Moseley appeared at court and was bound over for 12 months after being found guilty of obtaining money by false pretences. His solicitor described him as “affected mentally by sleeping sickness and meningitis” and being “unstable and irresponsi­ble since his illness”.

But the worst of the disease was revealed over time. It became clear that some victims developed a second, so-called chronic phase. Some experience­d jerking muscles, twitching and restlessne­ss, followed by weakness and fatigue or hallucinat­ions and sleep disturbanc­es.

Others’ bodies became rigid and immobile. When movement did come, it was slow and gradual. In some cases it occurred decades later. We are not sure when this phase affected Annie, or how quickly it progressed, but my Grandad spoke often about his future mother-in-law being poorly but still ambulatory when he and my Grandma were courting in the 1930s. He said he was told his girlfriend’s wife didn’t really know what was happening, and yet Grandad swore she could always tell when her daughter and her “young man” were alone together in the front room. He reckoned she would always appear in the doorway just as they thought they were in private.

By the time Grandad and Grandma married in 1936, Annie was not well enough to attend their wedding. We also know she spent much of her day on that couch in the back room in Cameron Road. It seems likely that Annie’s case was typical. She had spells of better and worse health, but her condition was to worsen until she died at the age of just 53.

To this day scientists are uncertain what caused the EL epidemic. Some experts claim that is simply did not exist as a specific disease, but that it was a diagnosis given only when all other likely possibilit­ies had been ruled out.

Some believe that it was caused by exposure to a toxic, rather than infectious, substance, that a type of polio virus might be responsibl­e, or even that an autoimmune condition could have been to blame. Others still believe that it was, indeed, a virus but one that has yet to be identified and, chillingly, could one day return.

There may be little agreement on its origins or even its identifica­tion. But its effects – on individual­s and on entire families – is in no doubt.

We won’t be the only Derby family to have learned this.

It was rare but devastatin­g enough to be feared each time its name appeared the pages of their local paper.

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 ??  ?? Annie Poynton and her daughter. Below, Annie’s death notice in the Derby Telegraph
Annie Poynton and her daughter. Below, Annie’s death notice in the Derby Telegraph
 ??  ?? Derby and Derbyshire Rescue and Training Home for Girls. Over two weeks in 1919, 12 of the 21 girls and women in the house were affected by sleeping sickness, and at least five of them died within 10 days of onset.
Derby and Derbyshire Rescue and Training Home for Girls. Over two weeks in 1919, 12 of the 21 girls and women in the house were affected by sleeping sickness, and at least five of them died within 10 days of onset.

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