The last 20 years hangs on a wasp sting,” says Alice Cole, pioneer of the Multiple Sclerosis Society.
Like a story teller she unfolds the tale of how she went in search of a doctor to ease the swelling. He had recently arrived in Auckland from Northern Ireland. To make conversation she told him: “I’ve got a disease you won’t know anything about.” Not in a boastful way. At that time no-one knew much about multiple sclerosis, a disease that gradually paralyses its victims.
‘Yes, I do,” he said, “You’ve got multiple sclerosis. Where I come from there is more MS than anywhere else in the world. Several of my patients had it.”
Later he visited Alice and her husband Bill at their Titirangi home. “You’d be the type to start an MS Society,’ he told her. ”What’s the use of a society without a cure,” she retorted. “Don’t be a pessimist,” he said. “There’s a cure for every disease, but it doesn’t come on a platter. It’s there for the plucking, but that’s the hardest thing to do.”
“‘He told me to seek out all those MS sufferers tucked away in homes and hospitals. People who felt hopeless who knew nothing about their illness.”
So at 54, this avenging angel set off down a new path. She wrote to people all over New Zealand then her husband, treasurer for the society, took her by car to speak to anyone who would listen, anyone who was interested. And always they would call in on MS people along the way.
She started writing newsletters to link small branches of the MS Society formed after her visits. These newsletters were a beacon to sufferers and their families. They carried news of research overseas, news of other branches and MS people.
To those who had been isolated and ignorant of their disease for so many years and their puzzled families, it brought awareness that they were not alone. They could share their experiences.
Her letters were very personal. She would write about her daily life, the view from her desk in the sunroom. Hundreds of people could see that view in their imagination, the broad blue sweep of sea, framed on either side by native bush, the soft browns and greens of coast line, and the blue expanse above.
Her own experience of MS is in some ways typical of how the disease strikes. She was a strong, active, intelligent, sensitive girl from a lower middle class family in Yorkshire. She loved dancing and sport; but in her late teens found she tired easily. On the dance floor her balance would go and she would fall. In those days though no one ever thought of suggesting she was drunk, a cruel accusation made to some MS people today.
“You’re burning the candle at both ends,” said her mother.
Later Alice and her sister came to New Zealand on a working holiday. Here she met Bill Cole, a widower and businessman. He was 15 years older than me, he felt sorry for me, he was a real friend.” Alice took a trip home on a fruitless search for answers and treatment for MS. When she returned they married.
“He married me knowing I had MS and that’s a big thing to do.”
“Now young couples ask me about marriage and MS I tell them there has to be a deep love and acceptance of what will happen.”
As the disease progressed Alice used sticks, then a walking frame. to move around. At home she uses a tea trolley to move around. She has been luckier than many with MS. She has the use of her arms and legs her speech is still clear and easy to understand, her memory rarely fails her. She has regular protein injections and takes multi-vitamin tablets. Some people find a special diet helps them, especially one which includes sunflower seeds or oil.
But the cure and the cause of the disease is still a mystery. It’s now thought the disease might stem from a deep-seated virus, part of a childhood disease. It affects Europeans – no Maori has been diagnosed and only one Islander, a Samoan girl with a German father.
The disease attacks the coating around the nerves, interfering with the co- ordination between brain limbs and muscles. MS people do have remissions, then go through a period of stress and their condition deteriorates again.
In 1978 Alice’s husband died. A shattering blow for her.
“Since then I’ve been much stronger physically, but my mind is not as good as it was,’ she said. His sudden death, the legal and financial aspects of widowhood, and finding home help, have left her bewildered. On one hand she wants to just sit and look out the window to the sea, and heal. But she worries that she is wasting time. Well-meaning but thought-less friends suggest she move to a home unit. Not Alice. A home unit couldn’t satisfy her individual nature, and her home is full of memories of Bill, so full it’s even possible to imagine he’s still there. Her days are busy, she sleeps well at night. “But there’s an emptiness there.”
Over the past few years she has withdrawn from active membership of the MS Society. “I’m not a committee person,’ she says. ”Committees pass motions, they don’t do anything. She maintains a close interest in the holiday home for MS people and their families at Laingholm, named after her. And still loves music, although she hasn’t felt like touching the keys of her Piano since Bill died. The Alice Cole Beethoven Scholarship has helped several, young musicians in their careers.
Her work for MS has been honoured by the Queen with a British Empire Medal. The British cellist, Jacqueline du Pre, is the only other MS sufferer and worker who has received a medal.
How would Alice like to see MS societies move in the future? She is divided between research which will benefit the young, and comfort for the older person. She’ll leave money to go towards a brain scanner for MS and other neurological patients. New research into trace elements in soil, and climate could emanate from Otago where 13 people in a small area have MS. Government help is needed and committed young doctors to specialize in MS. She talks to as many women’s groups, nurses and medical people as will Iisten.
And what of her future? ‘I live my future every day,”‘ she replies curtly. She has evolved her own philosophy of life. An all-embracing Christian love “Love which embraces it like a pussy cat.” Her arm takes the old grey cat asleep in the most comfortable chair in the sun. She is still seeking deeper meaning of life and death. Has read many philosophers and people like Muggeridge who found answers later in life. She sees some pattern her life, that her childlessness meant she could put her strength into MS.
Now she is looking for new direction, and feels might lie in music. In spite of her grief she still reading, still searching. Her walls are papered with scraps of paper, thoughts she has culled from reading and doesn’t want forget.
Like this one: “Lord, help me to remember that nothing can happen today that you and I can’t handle together. “
(Based on an article by Vanya Hogg in the Auckland Star 24 May 1978. )
