Category Archives: Learning

Living with Epilepsy…..

My son has Epilepsy. This is not the sum of all parts that make him as a person, but it is a huge factor in his life. He grew up healthy and happy, but he suffered a head trauma 10 years ago when he was a trainee Guard at 19 years of age. He banged his baby soft skull against a concrete wall when playing a joke on a colleague which resulted in a major seizure within 24 hours. The precious safety cap that surrounded his brain was chipped and damaged that day and can never be repaired.
 
This major brain injury has impacted in so many ways on my family that can often be inarticulate and without expression, but it has affected my darling son in ways that I am sometimes emotionally inept at dealing with.
 
He has had much more to deal with than I have.
 
His promising career with the Irish Police Force ended when another seizure occurred almost twelve months later. The Guards ‘let him go’. Epilepsy is a condition that prohibits so many life and career choices, and being a member of the police force was one of them.
 
He took all of this in his stride, and despite the desperate fallout, he took a side wards step to fulfill his ambition of working with marginalised youths and went to college and is now doing all that he ever wanted to do. He works full time with disadvantaged and vulnerable young people and he is dedicated to his profession and is well loved and respected by his peers. He is also a volunteer in the local football club and gives so much of his free time in the endless pursuit of community building through sport with young people.
 
He is on prescribed epilepsy medication for life and it keeps him safe (most of the time) but he has had infrequent seizures since.
He is my precious child and I adore him.
 

I admire his refusal to be categorised by his Epilepsy although the mammy in me wants to protect him and keep him in bubble wrap.
I admire his dedication in trying to make life better for other people, but I get frustrated when he puts his own health on the back burner and doesn’t place himself first.
I admire the way that he will not let this condition rule his life as he gets on with it.

But….

I wish I could wave a magic wand and go back to that day and put a pillow on that concrete wall.
I wish that he didn’t have to hide this terrible stigma that he carries 24/7
I wish that Epilepsy was understood and talked about more.
I love him for all the parts that he is and I wish that life didn’t deal him such a shitty hand of cards.

Destiny is not all that and a bag o’ chips sometimes…..

Advertisements

Health and Safety and the good old days…..

We are surrounded by Health and Safety notices, laws and restrictions. It can feel like autonomy has been taken from us as the Health and Safety Police decide on what is safe for us and what is not. Making a car journey recently, my husband and I had to take two cars to facilitate the transportation of our three small nephews who all have to sit in separate seats that are fitted into the back of a car. They wouldn’t all fit in one car, so we had to take two. Not factoring in the cost of petrol, and the damage to the environment, I shudder to think of the expense that parents have to go through transporting families that contain more than three or four children. Sometimes it feels like common sense has left the building as we all rely on instructions and laws to guide our movements and decision making.

Health and Safety is a new concept and one that was thankfully not around in the 70’s when I was growing up.

The first mode of transportation that I remember as a child was my Dads Bedford Van. It had double doors that opened at the back and on Sundays my Dad would regularly lift two arm chairs from our living room, depositing them in the back of the van for my Grandparents to sit in. We enjoyed excursions up the Dublin Mountains to go blackberry picking and general days out to the seaside. My older sister and I used to sit on the wheel arches in the back of this van and my mother sat up front with a baby in her arms.

We never crashed, we never got hurt and we all laughed as we rounded a corner too steeply sending myself and my sister skittering off our “seats” as the chairs also slid around the interior of the van with two old people clutching on for dear life laughing at my Dad telling him to slow down. The Health and Safety Police would take a dim view of that kind of travel I think.

I grew up in a family of five children and all my siblings had been born by 1970. My father had an Austen Cambridge Estate car back in those days and our family of seven fitted quite comfortably inside it.

One memorable summer in 1972 when I was twelve, we were packing up for a month’s long holiday to Ballyheigue in Kerry where we always took a house. Our family of seven were going, along with my grandparents and my granduncle Leo. That was ten people all making the journey in one Austen Cambridge car. My youngest sister Annie was only a toddler at the time and came with a lot of baggage. Amongst the luggage was a play pen, a pram and a cot for starters, not to mention all the clothes for a family of seven that had to be transported, along with games and other vital accessories like my father’s blue frying pan, his cooking knives and bread board.

Logistically my father worked out that ten people and all their worldly possessions were not going to fit into one car, so being a skilled carpenter he built a long wooden rectangular box that bolted onto the roof rack of the car and we all helped him pack our clothes, pram, cot etc. into the box. When it was full, my Dad then began the mammoth task of getting the humans packed up as well.

In this car the front set was a bit like a sofa. There was no division between the driver and passenger seats and the gear shift was almost under the dash. The handbrake was on the driver’s side alongside the door. Having this wide seat meant that ostensibly five people could travel in the front and five could also travel in the back.

As my grandparents and my Uncle good-humouredly squeezed themselves into the back and my father began to push the smaller kids in beside them, I realised that I was either going to be stuck with my smaller brothers in the back alongside my chain smoking grandparents and uncle, or else I was going to be up front with my mother and the baby squashed up with my older sister and my driver dad. Neither option was appealing.

I asked my dad if I could travel in the box. He laughed at first as he refused, but I persuaded him that I would love it. I suggested that he could put something soft in it for me to lie on and this would allow for much more room in the car.

I remember dragging the Eiderdown cover from my parent’s bed and making a space in the back of that box and climbing inside with my favourite book at the time. I felt like the heroine in an Enid Blyton story as I prepared for my greatest adventure ever.

My father nailed a clear plastic tarpaulin over the whole box assuring me that I would have plenty of air to breath as he would leave a corner up for me. I wasn’t a bit worried, I was just thankful that I was alone in this box and not stuffed in the car with the rest of the family.

Throughout that journey my dad stopped frequently for toilet stops and to check that I was ok. Back in the 70’s driving to Kerry took about 7 or 8 hours and it was a journey that I will never forget. We all arrived safely and had a wonderful holiday, but alas my grandparents and Uncle Leo departed to Dublin after two weeks taking a train from Tralee. On the return journey back to Dublin, there was ample room for all of us in the car so I wasn’t allowed back in the box.

Life was certainly simpler back in those times and to even contemplate putting ten people in one car today would be enough for the Health and Safety Police to lock up my poor father and throw away the key never mind allowing someone to travel on the top of the car in a wooden box.

That was the sum total of my adventure and it was one that I will never forget, although my mother still says that I dreamt it up. She says that my Dad was too sensible to ever let one of his precious children travel perilously on the roof of a car. Memories like this are really cherished, as the freedom to make decisions was based on something that resembled common sense, and a young teenagers knowledge that she could wind her dad around her little finger.

Destiny can be about recognising how good the good old days actually were.

The flip side of the coin…

“Choose life. Choose a job. Choose a career. Choose a family”. The opening words of the iconic monologue from the 1996 movie ‘Trainspotting’.

But what choices do we really have when it comes to living?

I believe that life can be a series of accidents and opportunities that are constantly dependent on outside factors that we have absolutely no control over at all.

Take that great job interview that you recently did. You know that you ticked all the boxes. You know that you are qualified for the job. You have the expertise. You presented well on the day and you answered all the questions correctly.

You didn’t get the job.

Outside influences may have played a major part. The Interviewer may not have liked the colour of your hair, or she may have had her best friend’s daughter interviewing later that day. You will never know the reason.

You will go over and over what it was that you did wrong, and never find the answer because it was nothing to do with you, it was to do with someone else making a decision that might affect the rest of your life.

You had decided on a particular path assured in the belief that if you completed A you would progress to B and then on to C. Mapping out our lives is something that we all do. We have goals and aspirations to aim for, and we hope that they will be realised as we all work toward personal fulfilment.

Achievements are celebrated and greater goals are set as we attempt to pilot our way through our lives, providing for our families, setting example by our standards and generally expecting that things will work out the way we want them to because we have worked so hard to make it happen. It’s what we have been taught to do. I cannot visualise my world without order, hope, expectations and dreams.

But life is actually so arbitrary. I realise this now, and it has taken me so long to understand it.

I realise that no matter how qualified I am for a particular job, it’s someone else’s decision as to whether I get it or not.

I realise that being an obedient citizen guarantees me nothing.

I realise that actions and decisions take place that impact on my life all the time and that I have no hand in them.

I realise that most of life is chaotic and unplanned, despite our belief that there is an order to the events that affect us.

I realise that no matter how much I try to protect the people that I love, I cannot keep them safe from harm.

I realise that I have to let go my feelings of desolation because life didn’t work out quite as I had planned it would.

I realise that life can be explained by the simple metaphor of a coin toss.

Heads you live – Tails….

Destiny can just be about flipping the coin of life and accepting where it lands.

Is this Destinydelivered…..

There is something deep inside of me that is loosened by alcohol. I am not sure if it is a feeling of inadequacy, shyness, or reluctance, but I recognise that if I have a glass or two of wine, and I am near my computer- I am compelled to write my thoughts down.

Since I began blogging last year (July 2011) I have wanted to record and write so many things… It started out as a kind of living diary for me and for my already grown up children… I wanted them to somehow ‘see’ the person that was inside their mother….

I wanted them to separate the familiar ‘mammy’ that they knew and grew up with, from the woman that I was before they were born and who also lived a parallel life while they were children.

My ramblings were not intended for them to scrutinise in the ‘here and now’- they were for after I was gone.

This was the shyness, or the reluctance that stopped me from publically posting my blog for such a long time. I was afraid of being questioned, afraid of being ridiculed, afraid of being judged.

Becoming a blogger in the past year, I have learnt that writing personal stories, thoughts and histories, and sharing them amongst friends and family has actually been one of the most liberating experiences of my life.

It can sometimes be difficult to articulate fears and inexperience, to flounder in the face of adversity, and in front of people who expect that you will always perform to your optimum.

Blogging has allowed me to share how unsteady I have felt in my past, and also how I recognise that my future is not mapped out and assured.

I began writing this blog as a life diary for my children so that they could somehow know me after I was gone, but in writing it, I am getting to know myself more so than I ever thought possible by simply recounting my life and recording it.

Is this Destinydelivered?

At the end of the day………

It’s such a commonly used expression –

Irish people use it all the time. We throw it around casually in conversations….. “At the end of the day she was acting the maggot and I will NEVER be friends with her again”… “At the end of the day the score was even and the ref was SOOOO right”. “At the end of the day he was such a fecker that I dumped him”.

“At the end of the day” is a colloquialism- a part of the popular Irish vernacular, and although a lot of people use it frequently in conversation, I don’t honestly believe that we think too much about what lies behind the words that we are saying.

Circumstances have a way of making you sit up and take notice of what was once ordinary become extraordinary…….

At the end of the day on Wednesday I learnt that my mother’s terminal cancer had spread to other organs in her body…

At the end of the day I realised that her treatment had not halted this terrible disease despite medical interventions and chemotherapy….

At the end of the day I was alone with her as we were told that the results of her recent scans did not herald good news…..

At the end of the day we were sitting together quietly in a hospital room hearing words that extinguished all hope….

At the end of the day I was sitting with my mother the moment that we realised that the actual end of the day was coming sooner than we thought….

 

I am currently confused about the meaning of Destiny…..

Are virtual Internet friends real?

Growing up in the 70’s all of my friends were people that I knew intimately. That’s what the word ‘friend’ meant to me. This ideal remained unchanged throughout most of my life and the people that I called friends were physical people that I knew and socialised with.

Meeting new people who have shared interests and that you ‘click’ with has always been difficult for me. I have been bored many times by friends of friends on nights out who prattled on about stuff that didn’t engage me, and then again there have been spectacular conversations with casual strangers who have been on the periphery of the company that I was with on particular nights. I often wished that I was brave enough to ask some of these people to meet up with me again so that we could continue the conversations and discussions another time long after the night was over. My own insecurities gagged and stopped me. Half of the time it was probably just as well. Morning sobriety has its own way of negating the previous night’s ‘stimulating conversation’.

Meeting people that we are compatible with is so hit and miss and random. It seems to be reflected in the proliferation of ‘Date/Mate sites’ that are all over the Internet, attempting to match people with similar interests together. In the past ten years because of the Internet and on line social media, the idea of ‘friends’ has become much more complex in one way and yet more fluid in another.

There are places on the Internet where people who have shared interests can gather, relate and chat. This can be a cyber/virtual place where your actual global location has no bearing or relevance to the conversation or interaction that is taking place. I adore this relatively new medium.

As an avid Scrabble player I have discovered and found new friends with common interests on the World Wide Web. I have played games with people who drift in and out of my life and disappear, and I have also made friends with others who I play with regularly and who I have conversations with about stuff that is personal and relevant to our lives. Although I may not recognise them if I met them on a street like I did growing up, some of these people have become very dear to me and are as important to me as the friends that I see on a regular basis in my daily life in Dublin.

I have been an enthusiastic user of the Internet since its origins and I believe that I can distinguish the good and the bad that lies at the heart of it. One of my first online cyber conversations was with a widow called Sally who hailed from Kansas and whose local Council had bought computers for all the far flung people in her locality so that they could chat and keep in touch with each other. They had also provided lessons for these neighbours on how to use the computers that were a life line to this scattered community. She was 76 years of age and was so thrilled to be type chatting (slowly) online with someone from Ireland. She had always wanted to visit, but sadly never got to make that journey. We stayed in touch for years. We had a lot in common as women and we never ran out of conservation when we were on line. We gossiped like old pals with shared history, and I got to know her and her family through our many chats.

The internet has opened up new ways of making friends for me. I have ‘met’ delightful people throughout the world, and I have had the most wonderful stimulating and complex conversations that would not have been possible without this medium. It has illuminated me on subjects, locations and histories that I lacked understanding of, but that have come alive and understood through the conversations that I have had with ‘virtual friends’. This has added a richness, colour and diversity to my life in ways that I simply cannot articulate.

This week I am welcoming a ‘virtual friend’ to my home for a visit. We have been friends for about five years. We have shared life’s ups and downs on line in the same way that I have shared the same events with my physical friends here in Ireland. We have laughed and cried about events that have shaped our individual lives although we have been thousands of miles apart when these events took place.

We started out playing Scrabble, and then we graduated to Facebook and regular on line chats. This weekend we will finally meet face to face. I am so looking forward to hugging her and welcoming her into my home as I do all my friends.
Without the Internet we would never have become pals. Without the Internet I would not have the relationships that I have with many people stretched across the globe.

Growing up in Dublin I had friends that I recognised by their faces, but this has changed. My many online friends may not be facially recognisable to me, but they are part of a global network that is as meaningful and relevant to me as are the people that I interact with physically on a day to day basis.

Friends are people who understand and love you regardless of where you are in the world.

Destiny can be about making real friends in the most unexpected places….

Language and how we speak.

I have thousands of words dressed up in a carnival of colour regularly riding the carousel of my mind…. Like James Joyce writing Ulysses I live in a constant stream of consciousness. There are a myriad of thoughts, actions, voices, and images that surround me in every minute of every day although I don’t record or write them as they happen.

I have no aspiration or talent to be a writer and I accept this and can smile about it. I am much more mundane. I like being articulate when saying what I want to say and I have no great desire to make it to the best seller list. I generally just want to be understood. I want to verbally connect in the best way that I can.

Language is the universal way that we communicate and we all do it differently. I recognise this and I am a lover of listening to the spoken word as much as I love writing it. Language is powerful and how we articulate and use it can sadly set us apart.

I only have to listen to the voice of a news reader and compare it to a voice in my local community. Somehow the passion and spirit of a community speaker can be lost when their words are taken, relayed or broadcasted. By the time the message is conveyed through mainstream media these words have been altered and may not reflect the feeling of the original speaker. Passion becomes diluted, and voices and words are mixed and broken up into sound bites that are acceptable. This is all so wrong. I believe that in this way language has been sabotaged. Sometimes if you can’t be fluent and say what you have to in three minutes, you don’t get a shot.

For me, how we speak and communicate defines the narrative of our lives. Our memory bank of words is personally relevant to each and every one of us and is a reflection of how we have arrived where we are through our lived experiences, our families, our education and the people that we associate with. We listen and we mimic. We read and hear words all the time and we store them. We make them our own and use them distinctively. Everyone has the right to speak, to engage, to converse. To be heard and to be listened to regardless of how incoherent mixed up or inarticulate they are.

I communicate though my language. I use my own stored words. Most of them are like old friends, familiar and comforting. But I sometimes dip into my suitcase of words to root out the unexpected, to explain or to describe something that needs stretching out like elastic. For me, embellishing a word is my way of creating something beautiful in a sentence in the same way that an artist may add extra colour to a work in progress. If I strip the sentence back to its basic form it will still be understood, but it is missing the beauty and colour that I believe language contains.

Through my education and my lifetime love of words I am now more articulate in my life that I have ever been. I was that person who’s passionate voice was unheard because I wasn’t fluent or eloquent enough but not anymore. I can now say what I want to, but I add the colour and texture that language produces. This can make me sound like a right windbag sometimes, but as long as the sentence flows beautifully, sounds good to my ears and is clearly understood then I am ok with that 🙂

Destiny can be about looking at the things we take for granted and viewing them in a new light.