Huntington's chorea, from the Greek word choreia meaning dance, refers to the characteristic movement disorder that is a part of the illness. In former times it was called St Vitus' Dance.
I’ve made up my mind to visit Aunty Therese today. She’s on my very short list for interrogation. When I phoned her early, she said she would be in all day. I haven’t seen her since the funeral which is terrible really when she only lives in Motherwell. Also on the list is Father Ryan, the priest at Uncle John’s funeral, but when I phoned to make an appointment with him, I was told he was in Edinburgh doing something ecumenical. What a laugh, nothing ecumenical really happens in Scotland; there is still too much hatred between the supposedly Christian churchgoers. Some kind of unity would have a chance to work if the Catholic Church and the Protestants didn’t insist on the doctrine of being the only one who is right and the only way to be saved, it’s a bit hard to water those things down. I have heard priests tell parents not to let their children play with Protestants as they could be a bad influence, and again the education system plays right into the divisiveness. What chance would ecumenism have here?
Aunty Vera was lovely but vague, Mam was definitely avoiding, Father Ryan’s not available so what I’m left with is very little information and a large dose of dread.
I walk to school with John and the girls and give him a last minute warning not to chatter and gossip like an old woman, or he will be in real trouble. I have managed to skilfully avoid telling him any of the details of my meeting with Mrs. Mulholland, except to say he can’t talk and listen at the same time, and if he doesn’t listen he’ll never learn. Soft pedal I know, but I don’t want to get into anything more complex about truth, lies and family secrets. That’s far too dangerous for a seven year old.
He rushes into the playground to meet his friends and I continue on to the community centre and drop the girls at their dancing class. There has been talk of a summer show by the dance troupe, they can’t wait. I probably can.
Free now, I walk to the bus stop past the Mosque and the chip shop, to wait for the Motherwell bus. The chip shop opens at lunch time to serve fritters, sweets and fizzy drinks to the school kids. This is all part of our unhealthy tradition, and our aiming for the top of the European league in tooth decay.
It’s a dry cool day and I decide a cigarette would be a reward for my morning’s labour, so I stand at the bus stop peacefully smoking and day dreaming. I wonder again why Tommy hasn’t phoned. I’m like an old bag lady, picking over my thoughts like bags in a shopping trolley. How busy can his busy week be? This isn’t exactly Manchester inner city madness, with muggings of old ladies and children begging in the subways is it? I had high hopes for our little romance, but, as Mam says doubts are like fast growing weeds; they tend to choke, or something along those lines.
As I wait for the bus two men come round the corner from the back road to Cleland, both holding two greyhounds, each on short leads. The dogs look lively, with shiny coats and bright eyes. These are well looked after dogs, as are most of the greyhounds in this area. There is a lot of money won and lost on greyhounds and there are legends among doggy men of favoured canines being given the armchair by the fire and the best steak for dinner. The dog track across the road is a major source of recreation and entertainment in this area. Most of the racing dogs are locally owned and there is a great wealth of folklore surrounding the training and running of the dogs.
These two elderly men have probably walked from Cleland, a good few miles, to give the dogs their daily exercise. They sit down on the bench at the bus shelter for a breather. The men look lean and fit, like the dogs. Both have parts of their hands missing, one a half of an index finger, and the other a pinkie and ring finger, a dead giveaway for retired miners, that and, of course, the hacking cough of the silicosis lung disease. There must have been some horrific accidents years ago, thankfully a lot of the work is automated now and miners mostly get to keep their fingers.
One of the men takes a half bottle of whisky from his inside jacket pocket and juggles the dog straps to unscrew the top. He takes a small sip and in silence passes it to his mate who tips back his head, with the ease of old habit, to drink from the bottle. Quick as a wink, the bottle is stoppered and returned to the pocket.
‘Your dogs running this week?’ I ask just to be polite.
‘Na, hen, these’re young dogs, not ready for the track yet,’ the one with half his index finger says, ‘we’re training them for after the summer, then you can put you housekeeping on them, make your fortune hen.’
‘I wish! You men are dreamers when it comes to gambling.’
‘Right enough, now hen we’ll be heading back’ says no pinkie ‘Ma wife wis steepin´ lentils earlier so there’ll be soup on the go soon, nothing like it. Nobody beats her lentil soup.’
With that, they stand up and head back up the road to Cleland, and the lentil soup, no doubt made by an elderly kitchen angel of the perfect house-wife generation. You may know the type, they do the ironing the same day as the clothes are washed and dried, and always set the table for breakfast before they go to bed. Don’t they know you can buy soup in tins now? But maybe the soup’s an orgasm substitute like Charlie’s roast potatoes.
At last my bus comes and I arrive at Auntie Therese’s with only an hour and a half to spare before I have to pick up the girls again. My life is bounded by a clock.
Therese lives in a smart block of high rise flats near the town hall. Her flat has a security entry, central heating, double glazing and a spectacular view of the Clyde valley from her window on the fifteenth floor. Uncle Frank works at the Ravenscraig and Therese is home today as she only works part time, three days a week, at the Town Hall information desk. She welcomes me in and we go straight to the kitchen to put the kettle on. Therese is ten years younger than my father was, so she must be going on retirement age by now. She looks a lot younger than that with fine clear Scottish skin, hydrated by all the damp and not a bit of sun damage. She is plump and shapely with dark brown eyes and dyed blond hair. I bet she still turns a few heads and puts a twinkle in the eyes of some of the grouchy old Councillors up at the Town Hall.
With the tea making ritual over, we move to the room with a view and sit down. I haven’t much time left so I have to get right to it, no dithering. I start talking about the funeral and how well she had done organising it and how nice the service was. There is a big box of tissues on the table between us and she eyes it a couple of times.
‘I’m worried, Aunty Therese about what the Priest said at the funeral,’ I said, ‘he seemed to be saying John died of a disease that runs in the family.’
Theresa moved the tissue box nearer to her and fussed with it.
‘Poor John,’ she said with a small catch in her voice, ‘people didn’t think he suffered, he hid it well but he really had a terrible time.’
She started to cry quietly and I just watched her for a few moments, frightened of saying the wrong thing. She blew her nose into a bouquet of creamy white hankies and sniffed a bit, then said,
‘He didn’t want anyone to know how ill he was, he hated pity, and that made it so much harder to look after him. Frank and I were on our own looking after him, he didn’t want anyone else involved. Well you know what men are like, Frank was useless, it was really up to me to do the looking after.’
‘What was wrong with him?’ I really needed to hear this.
‘Oh he had the Huntington’s Chorea, all right, I’m not like some people, Carfin people, I’m not scared to say the words, but he wanted it kept a secret and that got very difficult at the end. Frank and I thought you all guessed it anyway. He was very bad the last six months, in pain and hallucinating, it was heartbreaking to see my brother go like that.
‘I’m so sorry Theresa, I had no idea, if I had known I might have been able to be of some help to you, given you a break or something,’ I said. I felt terrible and selfish, wrapped up in my own fears and oblivious to what they had been through. Whatever I said now
would seem completely inadequate.
‘Don’t be silly Margaret, it was his choice and we had to go along with that, hopefully wherever he is now, he’s having a great time and not feeling any pain.’
‘I’m sure he is’ I said, I was feeling a bit tearful now myself.
‘I know what you’re anxious about, the whole hereditary thing, well I don’t think you need to worry,’ She said, ‘I’m sure your grandfather had it, but that was hushed up by the family, I don’t have it and I don’t think your Dad showed any signs of it. You have to be the child of a sufferer to have a fifty-fifty chance of having it.’
I breathed deeply and felt better with Therese’s reassurances, but I still had a wee prickling of dread like pins in the centre of my chest. I told her about Mam’s reluctance to talk about it, which had worried me even more. I thanked her for being honest but had to leave in a hurry now to catch a bus back. I left with promises to keep in touch. The confirmation of the disease in the family made me determined to find out about Dad, then I might have the whole story. I owed this to myself and my children no matter what the outcome was. I really felt very shook up now but at least I now knew the truth about John.
By the time I had collected the girls and got home, made the lunch, hung out the washing and smoked another cigarette in the back garden, I felt calmer and in control.