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The house was silent. Jack and Sophie were not talking in the kitchen. Patricia was watching the children in the living room. Sophie started to make coffee and Jack was going through the motions of cooking. Then Jack opened a bottle of wine and the pretence of the other activities ceased. There were leaflets on the table. They already knew that there was a society for people with Neurofibronoilitis and they had a website.

I’ve heard it said that there is no reason to believe that our consciousness is created inside our skulls, it could be produced in our feet or even in the house next store, perhaps in that small shed in their back garden.

This might explain why Jack was thinking about how small the kitchen was in relation to the house as a whole. How strange it was that people were not really meant to cook there. It was a kitchen for show not for function. This felt something close to a revelation as he downed most of his glass of wine in one and refilled it.

“You drink too much,” said Sophie.

“What?”

“You drink too much.” Her inflection was flat.

There was a pause while Jack drank some more.

“What are you talking about?” The words came out with some pressure, “We need to talk about this.” He fingered the leaflets on the table.

“Drinking isn’t going to help that,” insisted Sophie in the same tone.

“I can’t believe you could pick a time like this..”

Jack didn’t know how to finish. They had never been good at arguing. Sophie in particular would shut down, believing talking solved nothing. The cycles of their anger ran out of sync, which didn’t help. Jack become angry quickly and cooled of just as quickly. Sophie would grow angry slowly so that when Jack was becoming conciliatory she would be just reaching the peak of her anger. Jack’s attempts at making up would therefore be immediately flung back in his teeth so that he would get angry again and so the cycle would go on…

Jack decided to avoid all that this time, finished the wine and stood up.

“I’m going for a walk.”

“I thought you were going to cook.”

“You can cook,” he thought about it for a second but still couldn’t stop himself, “for a change.”

He left.

 

 

 

Some extracts from the leaflet: “The Newly Diagnosed Child with Neurofibronoilitis, A guide for parents and carers” – by The Neurofibronoilitis Association, Great Britain and Ireland.

What is Neurofibronoilitis: Neurofibronoilitis is a genetic condition which affects roughly one in ten thousand people. Some have a mild form of the condition and may not realise they have it. Others will develop serious issues which will affect their health. The condition affects both boys and girls and is seen throughout the world.

How diagnosis is made: In order to make a diagnosis of Neurofibronoilitis one or more of the following must be observed.

Dark patches or lumps on the skin known as Neuronoilites which may appear like birth marks. The size and frequency of these marks varies with the severity of the condition.

Bony changes or abnormal bone development particularly in the lower body and around the sockets of the eyes.

Swelling of the optical nerves.

Epilepsy, which is usually only seen in severe cases.

A parent with Neurofibronoilitis.

 

Why does my child have Neurofibronoilitis?

Neurofibronoilitis is a genetic condition. Genes contain the instructions within the cells of our bodies that tell our bodies how to develop and work. The condition is caused by a change or mistake in the structure of one gene.

The genetic mistake can be passed from a parent to a child. A parent with the Neurofibronoilitis has a 50/50 chance of passing the condition on to each child they have even if the other parent does not have the condition.

Where no one else in the family has the condition the genetic change that causes it has likely occurred by chance. There is no known reason for this.

The condition varies in the ways in which it affects different people. Even members of the same family with the condition will be affected in different ways.

 

Possible affects of Neurofibronoilitis in childhood: Most childhood complications are rare however the condition can cause any or all of the below health problems:

Eye Problems:

Some eye problems are likely even in mild cases of the condition. Inflammation of the optic nerve is seen in almost all cases. This can lead to symptoms of headache and migraine as well as vision problems ranging from moderate to very severe.

Bone Problems:

Rare and seen only in severe cases of the condition. It is usually the bones of the pelvis and the legs which do not develop in the normal way.

Skin Problems:

The marks on the skin are seen in all cases of the condition, however, the extent to which these mark will cause discomfit and/or pain will vary with the severity of the condition.

High blood Pressure:

Unusual and seen in moderate to severe cases of the condition.

Epilepsy

Rare and seen only in severe cases of the condition.

Learning difficulties:

Rare and seen only in severe cases of the condition.

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Outside the early evening was turning late with that dusky light peculiar to that time of day that makes it difficult to see. Jack almost fell over the malamute who was sitting peacefully outside his own front door.

‘Hey big fella,” Jack said as the dog raised his big eyes, “you want to go for a walk?”

Jack was always nervous when he went out with the dog until he turned the first corner. He didn’t want to be seen to ‘steal’ his neighbours’ dog but then he didn’t think much of how they looked after him either. The man had become indifferent and the woman actively hostile since they had reproduced so why shouldn’t Jack go for a walk with the dog, as a friend. After all, a dog is not something you can own like a car, it has a life, it is an individual not just one unit of a species. Animals never got enough credit for individuality he thought. Humans always considered that what happened to individual animals didn’t really matter as long as the general treatment of the species was humane. For some reason these thoughts brought tears to his eyes.

Inside the park gate there was a strange and impressive tree, shaped like a slingshot. Beyond it was a path through trees which was always a little scary as the light fell. Jack normally walked on the pavement but today, as he stopped to looked at the tree, his eye was drawn to the path through the trees and he decided to walk that way.

sling shot tree

That way seemed more comforting than frightening this evening.

misty path in the park

Within the line of trees the light fell a little more. I imagine that walking into the wood that evening was a but like entering a children’s story but that might well be more reflective of my way of seeing the world than Jack’s. I do know though that the light felt better to him in there. The malamute trotted ahead gently, sniffing at various clumps of grass and bits of broken branches, orienting himself in the invisible world of scent.

Coming towards them on the path they both noticed a big, old Alsatian dog approaching. It wasn’t possible to see far down the track behind him but it seemed to Jack that he was on his own, taking the evening air at his leisure. The two dogs became aware of each other and stiffened with attention for a moment before moving forward directly to greet. They stood with their noses almost touching and took each other in, then they abruptly broke off and went their separate ways.

The Alsatian and Jack passed, acknowledging each the other with their eyes. As they processed the malamute slowed down to allow Jack to catch up to him and fall in time with his steps and Jack started to talk.

“Well big fella where do I start. Oh, I don’t know, the thing is I guess I’m in trouble. My boy is ill, he has a disease or a condition and I think it’s very serious and I’m worried, I’m scared. I’m not sure what’s going to happen and the other thing is that I’m sort of to blame. I mean not really but you see it’s a genetic condition, it’s passed down to children from their parents and one of the signs, one of the symptoms that show you that you have this condition is these little marks, these marks on your skin and I have them. I always kind of thought they were little birth mark type things. I don’t.., well I have them. So it’s because of me that Eoin has this thing. I didn’t know. I never had cause to thing about it. No one, I can’t remember anybody in my family being really sick with the kind of things that Eoin’s already having..”

The malamute remained close.

“But I’m having trouble now. I’m having trouble, I’m having headaches, shakes, problems with how I.. with my vision and and.. I, I need to work, I need to, I need to keep working. But if things keep going, if my vision gets worse and worse I won’t be able to drive and if I can’t drive I won’t be able to work, not at the job I do now and if I can’t do the job I do now I can’t. .. We have a big mortgage, a big, big mortgage and I need a good job, I need money, I need to be making the kind of money that I’m making now to keep us in that house you know, keep us being neighbours.. and then Eoin’s going to need a lot of help. You know, I think Eoin’s going to need an lot of help and it’s not going to be cheap and he going to need me healthy too and I’m scared, so I’m scared and I don’t know what life is going to be like for Eoin. I’m scared what his life is going to be like, what he’s going to suffer and if I’m going to be able to help him and I’m scared because I don’t want to see him in pain more than anything. I don’t want to see him in pain..”

 

 

When he got home Sophie was still angry. There were things to be done to get the children ready for bed, good routine tasks that eased the anxiety somewhat.

Most of us live our lives in cycles that run from the novel to the routine like the eddies in a fast flowing stream. We try something new, scare ourselves a little, and then pull in our familiar things around us like a nest. A process continuously moving from intimidation to boredom, the cynic might say. Then we do it again…

 

They went to bed in silence but they both knew they would talk in the morning. Jack knew he would tell his wife what he had told the dog and that she already knew it all anyway.

 

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