From the Edge

A friend of mine is suffering from Motor Neurone Disease. He can only move his eyes. He wrote this article in the last few weeks.  

Simon you are utterly inspiring....

 

People are amazing. I'm in the back of the car. We're moving fast. Riding bumps like waves. My chair lifting off the floor. In the back with me is my friend Cait from Limerick. Crazy. Has me in stitches most of the time. In the front is my brother-in-law, Pierre-Yves. French. Crazy. Drives like a madman. But he's not driving today. He's on the phone to his mother, speaking in a rapid rush of French. It's her birthday. My mother is driving. Bray. Crazy. Drives like a madwoman. I'm on my way to the hospital. Ruth's Caesarian is taking place at twelve. It's twenty to twelve.

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I believe in birthdays. I count forwards now not back. I look ahead at forty and think yes. Yes please. When I hear someone's age I subtract mine from theirs. Sixty seven. Thirty years more than me. Old people are the worst. Ninety nine. Sixty years more. Jesus. I look at older people with awe. You did it.

It's easier looking back. Twenty five. I've lived ten years more. Yes.

Then I look at my children, six, four and three, and I see how much they've lived in their lives, how much they've become, and I say wake up, learn something. It's all there for the taking.

Quite often, people who haven't seen me in the last four or five years find it almost impossible to reconcile the difference in me in that time. I don't blame them. I often find it hard myself. One way, for me, is to think I'm in my fifth year of MND. World War Two was six.

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I'm nervous. In my stomach. I've been on this road before but nothing changes. Pierre-Yves turns from the front, his phone still pressed to his ear, "Mum says did you know that Caesarian got its name because Caesar was the first child to be born that way?" No, I didn't know that. He slips back into the silk of spoken French. Caesar, I think. Caesar was born that way. Okay. The nerves in my stomach ease a little. We're approaching Holles Street.

****

History. All around us. Buildings older than any of us. The news telling us what's important every day. Yet there is a more important history. The things we gather. The photographs we hang. The things we use. Our living memory. The wake we leave behind.

When Ruth and l were searching for our first home, we walked into a bungalow we could not afford. Other people were walking around the house, in and out of doors. It was inviting, old fashioned, but immediately warm. The kitchen presses were simple seventies and the window above the sink looked out onto a garden run round with flowering plants. People stood in the garden. Ruth went on out. I stood in the room alone. I opened a narrow press by the back door. On a little shelf were a pair of gardening gloves, fresh dark earth still crumbling on the fingertips. I am transfixed. Embarrassed. Suddenly aware of doing something wrong. Why did I open the press? I shouldn't be here. I close it quickly and hurry out after Ruth.

When we go to leave I ask the estate agent. Yes, he tells me, the owner only passed away last week, an older lady, living by herself. The family are hoping for a quick sale. He smiles. I want to run from the house.

****

They are waiting for us at the doors of Holles Street. Whisk us upstairs. My amazing people dress me in surgical gown, hat. Time has stopped. I enter the room.

Ruth is on the table. The medical team are beyond amazing, ushering me in, helping me get into the best possible position beside Ruth (Ruth later tells me if I had moved back and forth once more she was going to kill me (I was nervous)). They start. Ruth holds my hand. I watch everything. Sadie comes out feet first, screaming, blue. Then Hunter, bum high in the air, but silent. Ruth and I look at each other. They lay him beside Sadie and he lets out a roar. Ruth and l start to cry.

****

So much history. The days I've lived. The places that linger, the single moment that stays, like something from a book you once read. Glimpses that live within us. We are strange.

We want to know. But we don't. If we knew how the body worked, there would be no disease. If we knew the mind, no pain. But there is too much to talk about. More mystery than history.

I write in bits and pieces. Live in bits and pieces. People live in my mind. People I've touched. A coffee and a cigarette at a small wooden table, with a girl sitting next to me. Knowing and not knowing. Love.

Pathways. Taken. Followed. And we end up having lived.

Leaning against a car, on a sloped German street. Waiting for someone. Cloud and sun. It's cold when it goes in. I look up, the warmth on my face. I see an approaching cloud. How long before I’m in shadow? I follow its path towards the sun. I catch myself. Close my eyes. Feel the warmth on my face.

****

My extraordinary wife. I wouldn't change MND. Those two babies in my arms. Their warmth against me. Rising and falling with my breath. I wouldn't risk that for anything.

Eucharist means thanksgiving. That's how I feel. Thank you. Caesar. Thank you all who watched over Ruth and Sadie and Hunter.

I send out a thank you. A beacon. Something. From as deep as you can go. To as far as you can reach. I will hold this day inside me for the rest of my life.

****

Six months now. Sadie and Hunter are fat beautiful balls of life, with hands that reach to touch my face.

MND fought back these last few months, leaving me in terrified panic, drowning for air.

Last week I bit the bullet and admitted myself into hospital for the first time since I left March of last year.

It was Vincents and the week I spent there changed my mind about consultants. The warm sincere individuals I encountered treated me with the dignity of being a person not a disease.

I don't know how other people handle MND but it sometimes lays me so low that I don't know how I will go on. I feel like I'm being tortured, a thousand little jabs, that on their own I don't notice but slowly over time they start to hurt, until suddenly I'm crying. They're tiny things I barely notice, little hurts I've grown used to. Someone I love not understanding me. One of the boys telling me about something I will never do again with them. The hundreds of urges that I have to do simple human things but cannot do, like sit on a couch with Jack and read a book and hold him, put my arm around him, tickle him. I think I'm doing fine and then realise I'm holding myself together with I don't know what. Something unbreakable that pain keeps trying to break.

And then my boys pass the doorway on their scooters. Dot. Dot. Dash. Or wander into the room in their pajamas, in the middle of some elaborate world of lizards and kings, the youngest watching his brothers with silent eyes of glass. Or one simply stands in the doorway, looks at me and says ‘Hi Dadda’. And I remember.

And I write. Writing is my fighting.

****

Some days you can just see clearly. Our meaning, what we value, is the most private part of us, it may just define us. It shapes everything we do, everything we say, everything we feel, everything we dream. It's hidden, from others, from ourselves. There is no mirror to show us what we value. So often it is only revealed to us after the fact, in the long movie reel of memory. And when we see it, our heart stops, aching with recognition. It is a beautiful thing to see yourself.

****

I'm still alive.

On the way home from the hospital I see my reflection in my computer. I have a black strap across my head and a white one under my chin, a pipe coming out of my neck and going over my shoulder. I look like some crazy desert horseman racing along the dual carriageway.

I'm still alive. I seem to thrive on things trying to kill me. I'm still alive you bastard.

When I die, don't say Simon loved films, say Simon had as much love in him as blood. That's all. I'm racing towards a bridge.

****

Out of the Darkness and into the Light

 

When I was younger (a good deal younger) I used to teach mathematics to anybody that was interested. It was a simple way for me to earn a bit of pocket money particularly when I was going through college (we, genuinely poor students, had to pay fees at that time ;)).

Unlike my incredible brothers and sisters, I have very little obvious raw talent, however I am told by a few that I was actually quite a good maths teacher (one of my brothers credits me with him getting through honours maths in his leaving certificate – I suspect he just managed to pay off the examiner ;)). 

As it happened I absolutely loved teaching maths (and therein lies a piece of wisdom that has stayed with me to this day – allow children follow their passions and they will find their career), but never in my wildest imaginings did I imagine how this simple passion would be the basis of a story that gave me a short but beautiful glimpse of the divine…

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You do not have to be a child psychologist to know when a child has been traumatised. Perhaps its some built in human instinct that allows us understand that a deeply troubled child needs help.  The human instinct to protect a child is crucially important. Children truly are society’s most precious gift. From a Christian spiritual perspective there is enormous wisdom is recognising children as those closest to the kingdom of heaven.

That said, if this is true, it’s an instinct that is sadly under utilised in our world. Worse, there are so many examples of children being abused in different ways. And the consequences of neglecting or abusing children are enormous.

I believe the abuse of children to be evil in its rawest most awful form.

****

Mary is 10 years old and she has had a most difficult life. Her short time in this world has been an enormous struggle and it is written all over her face and her demeanour.  She was not planned and when she entered the world there was no security, no welcoming party and no support structure to give her a good start in life. She came into a world of recrimination, rejection and regret.

The first few years of her life included times when she was desperately hungry, when herself and her young struggling mum were constantly on the move looking for work and a place to live. When she was very young she spent long periods of time with her grandparents so her mum could try to stabilise things.

The poor little soul was flotsam in a raging sea.

And then there were men in her mum’s life who brought further misery to the child. Mary was regularly beaten for simple reasons like crying because she was hungry or making a nuisance of herself just exercising her natural childish curiosity.

Marys approach to coping with all this was to withdraw into her own world. She took the view that if she said nothing, nobody would notice her and that way life would be bearable.

I have known Mary for a couple of years now. She is one of the quietest people I have ever met. If you ask her a question she immediately looks to her mum for permission to answer. You often get no answer to the simplest questions like ‘how old are you?’

When she does answer she mumbles in a barely perceptible voice and stares at the ground.

In school Mary struggles. Teachers reckon she is 2 years behind her peers. Recently, it became possible for Mary to attend a good fee paying school. However, she had to do an interview in order to be able to attend.

The feedback from the interview was that she would not be able for the school and that she had serious learning and communication difficulties particularly when it came to maths. Her mum pleaded with the school and eventually they agreed that Mary could attend but only if she took extra maths tuition (this of course cost extra money).

Extra tuition meant that Mary stayed behind for 2 extra hours every evening to do ‘maths grinds’.  

Essentially that meant getting up at 6.30am, starting school at 8.00am and finishing at 5.30pm. Then going home, doing your normal homework and then all the extra work you got from the tuition.

That would be a long day for anyone.

****

In the summer of 2009 it so happened that I was staying close by to Mary’s house in Mombasa, Kenya. On a couple of occasions I noticed her sitting on the floor (there was no furniture in the house) doing her homework. Because she was so quiet, she never asked for help even though it turned out she was struggling.

It soon became clear that she was getting more and more maths homework from the extra tuition in an effort to improve her mathematical abilities.  She was spending hours and hours trying to keep up but was getting nowhere. At the end of every couple of weeks she would do an exam and fail it.

Looming ahead of her was the end of terms exam. If she failed that exam the school would recommend that she be kept back a year.

I sat down with her one evening and discovered that she had 50 problems to do. These were non trivial problems and each took about half a page of maths to finish. I remember thinking that that was a lot of homework for a 10 year old!

So, on the basis of nothing ventured nothing gained, I decided to give her some maths lessons…

****

It was not long before one big challenge became clear. When Mary did not know the answer she would write nothing down. When I pushed her on this it turned out that the same lack of confidence in her social outlook manifested itself in the way she approached maths. She was scared of writing down the wrong answer in case of the consequences so writing nothing down (or withdrawing from the problem) was better than a bad attempt.

When I gently pushed her to have a go I discovered that she was actually well able to do the maths.  She grasped concepts quickly and was very disciplined and methodical in her approach. Not only that, but once she grasped something she was quickly able to repeat it in different scenarios.

I tried to encourage her by making jokes when she made a mistake and kept telling her that there was nothing to be scared of when you got the wrong answer. More often than not getting the wrong answer can be a good thing in maths. Generally that means you have learnt something new, that a particular approach does not work or that you realise that you need to improve your addition!

In any case, so began a tiny confidence building exercise that was akin to nurturing a tiny seedling in a category five storm.

I am not exaggerating when I say that Mary and I spent many hours together over the course of a month tending to this fragile little seedling….

****

We can view poverty in many different ways. One classic way of viewing poverty is that it makes people make extreme choices in their lives.  People make these choices because they have no other choice. People can choose crime, prostitution or other desperate measure to survive in the difficult circumstances they find themselves in. 

In many ways, people who choose these paths become the very visible side of poverty.  There is a terrible very obvious tragedy to people who find themselves on these paths and the consequences to them and society are very real and damaging.

What about those people though, who choose to withdraw and be anonymous?  Those that cannot cope with the circumstances that they find themselves in?  To me there is a greater tragedy here.  Were you to get into the head of somebody on this path you would find a truly lost and lonely soul overcome with the challenges of life. Oftentimes they have lost all hope.

Over the course of my life, for good or for ill, I have met a few people who have been in this situation. I have learnt something fundamental from these encounters.  If all we do in life is give people hope we are imparting the most precious and wonderful of gifts.

Mary is one of those people.  A poor child, born into a harsh world, lost and lonely on life’s journey. Unfortunately she is one of many children in these circumstances in the developing world.

But never under estimate what happens when you give somebody hope….

****

At the end of the month Mary did her maths exam. No amount of interrogation with her gave me any sense of how she had done.  She just would not answer any questions about the exam – all questions were met with a blank stare which was her typical response to anything which she found difficult to answer. I have to admit that I hate exams. Even though I went through the educational system as a successful exam ‘product’ I think it’s a terrible crude, unjust and ultimately futile way of measuring somebodies ability. My biggest concern for Mary was not whether she was able to do the maths problems but rather was she able to cope with the exam pressure. In times past teachers would beat her for failing the exam. This is not  untypical  in Kenya and comes from the Victorian model of education that they inherited under British rule (the same system that we are still struggling to consign to the history books here in Ireland;)).

A week or so later I arrived back at my apartment early. I was standing at the balcony and I saw Mary getting off a Matatu (the local bus) and making her way to the house. She was clutching a piece of paper but her countenance suggested she had just been given bad news. Her face was taught and stressed and I have to admit that my hopes of good news were dashed.

I went out to meet her as she came up the stairs frantically trying to think of what to say to encourage her.  Her mum joined me in the corridor, both of us grim faced. I gently asked her how had she got on and tried to reassure her that no matter what the outcome, that all would be well.

She passed the paper in her hand to her mum who carefully opened it up and read its contents.

What happened next was something truly beautiful and I honestly wish I could have captured it better than these few words.

Marys Mum looked up from the paper and over at Mary with a look of astonishment on her face.

‘You passed your maths exam Mary…and the teacher says that there has been vast improvement and to keep up the great work….’

I looked across at Mary – the taught and stressed look had vanished.  She had a look of disbelief on her face like she had found something precious that she had deemed lost forever. The poor girl had not believed that she had passed the exam till her mum had read the note.

Suddenly, like the spontaneous blooming of a fabulous flower, her face lit up with a radiant smile, her eyes wide, bright and soft with tears.  It lit up the corridor and then reduced myself and her mum to tears! A few group hugs later and we all were laughing and giggling uncontrollably.

If one could have somehow captured that brief moment of joy in its purest essence and spread it out far and wide there would be no doubting that love and hope are alive and well in this broken world.

Mary took the paper back and held onto it for the rest of the evening. She maintained that wonderful smile for a long time. There was an extra spring in her step in everything she did.

She did not say a lot – it’s not her way -  but you know what - that is very much another day’s work.

GMcD August 2009

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There is a wonderful epilogue to this story but that will be revealed another time;)