Category Archives: Learing

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…..

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.

What a difference a year makes……..

It is a year (approx.) since my two adult children left home.
One year- 12 months- 52 weeks- 365 days- 8,670 hours – 525,600 minutes.

Time has unglued us from being one complete unit into becoming separate people living apart. This has led to many changes in our individual lives.

Learning to live without the constant ebb and flow of my children coming and going has been difficult. It has brought a new quieter rhythm to the house and one that has not always been welcome. I miss the noise although I appreciate the quiet. I miss the mess although I love the tidiness. I miss the gangs of pals although I relish the choice of seats in the sitting room in the evenings. I miss their late nights out although I realise that I can relax and sleep soundly and not have to wait to hear a key in the door. I miss waking up during the night although I don’t worry now if the house is in darkness as I realise that I turned the last light out and there is no one else coming home.

This is the melancholy side of things….
On the flip side there is a whole new order.

Being able to come and go without having to be there for formal meals is a huge freedom. Our family tradition had us all at the dinner table every night at a particular time having dinner and discussing the daily national and political news. While I always loved that part of the day, it is far less interesting when there are only two voices in the foray. It can descend into a major disagreement in no time.

My dinner time routine has changed.

Sometimes my hubby and I don’t even have dinner! We have the freedom to up and go to mountains, lakes and seaside destinations and we do so regularly. We go to restaurants, pack picnics and are generally less rigid in our evening routine than we have been in the past. We absolutely love this new independence although I am usually the driver of moving beyond the kitchen table.

I particularly love weekends. I am a volunteer with a national charity and my chosen slot is an early shift in Dublin City Centre on Sunday mornings. I finish around midday and my hubby usually collects me afterwards and we take this opportunity to make the most of the day and to enjoy the freedom of not having to be home for dinner. We go wherever the fancy takes us, and we stay out as late as we like. We have no one to please except each other and this adds a fun element and unpredictability to our lives. We are learning how to be a couple again after being parents for such a long time.

Our children still live close by and are welcome visitors all the time. They pop in unexpectedly for chats and impromptu meals that are conjured up in minutes by their Dad. They also come by for more formal ‘invited‘ dinners where the traditions are observed and the topical arguments continue. These dinners are special and very precious. Time tick tocks in the background as our lives move on independently but with habits and rhythms that bind us to each other.

I arranged to meet my daughter today and we spent two leisurely hours bantering and chatting over a delicious lunch in a local restaurant. If she was still living at home I don’t think that this coming together would have held the anticipation and ultimate pleasure of her company that I enjoyed for that short space of time.

Who knew what changes a year would bring.

Destiny can be about rearranging the jigsaw of life and seeing a different picture.

People- and the way they touch our hearts and minds….

Meeting someone pivotal in your life is often not greeted by cymbals and drum rolls. Sometimes they just slip in unnoticed and non-assuming, yet they can subliminally change how we think and act in quiet and unobtrusive ways. People like this are like jewels. Colorful treasure in a sometimes grey, monochrome world that can make us sit up and take notice of the beauty and sparkle that is inherent in life.

I met a man twelve years ago who changed me, fundamentally and quietly without his knowing. We met weekly and exchanged thoughts, philosophies, visions and ideas. He was older than I was and had a broader life experience and education than I had at the time. He spoke to and listened to me, and encouraged me to believe in my aspirations, beliefs and hopes. He supported me as I took the first tentative steps to thinking beyond the person that I was at the time, and he shaded my dreams with pencils of colour and substance.

Looking back, I recognise that I was at a crossroads in my life. My children were in their late teens and were on their own paths of discovery. My job at the time was well paid but I hated it. My husband had his career and was working hard at it. I was approaching my 40’s and I truly didn’t know who I was or where I going to. My life was predictable and mostly enjoyable, but it was lacking something that I couldn’t articulate or name.

This man encouraged me to read the works of great philosophers and writers, and to think deeply about the things that produced joy and happiness for me. He believed in the power of silence and self-reflection and taught me not to feel afraid in the quiet of my mind. Through our weekly discussions we explored what the universe had to offer us as humans and what we could give back.

We debated and argued back and forth about what was meaningful and relevant in a world gone mad with consumerism and greed. We agreed that it was people and how they felt that mattered most when it came to actual living.

I looked forward to our meetings and I was rarely disappointed. We were in a work environment so not all the time was spent chatting, but I loved having time out with this wonderful man learning something new in almost every encounter. He made me think in a way that I had never done before.

Trying to help my husband and children understand the monumental shift that was occurring inside me was difficult, as I was learning to think, to do things differently, and to reflect on where I was on my life’s map. I was also menopausal at the time which may have contributed to their lack of engagement with me as they all thought I was going nuts anyway. My new “Airy Fairy” way of thinking and my constant quoting of this man’s viewpoints made them laugh and dismiss me a lot, although they were never deliberately unkind. They just didn’t get what I was getting.

They didn’t understand the effect that this man was having on my consciousness. Although they listened to me, they didn’t really hear me or understand my new way of thinking. I knew that he did and I simply loved him for it.

I eventually emerged from the menopause mentally intact (although my family may disagree on this issue) and began to slowly build a new individual way of being, hugely influenced by this gentle man.

My thoughts and practices are different now and have been since I knew him. His gentleness continues to affect me in how I view the world and his wisdom will never be forgotten.

I do not see him now and have not for many years. Our paths diverged and we are not in contact. He has absolutely no idea how he influenced and changed my life.

I remember him with fondness, thankfulness and a deep and abiding love. He provided me with a space that allowed me to express my feelings, my doubts, worries and dreams. He listened to me and never judged me. He encouraged me to be quiet in myself and to appreciate the silence that lies within us all. He taught me to accept people with all their frailties and vulnerabilities and to recognise that I have those feelings too.

He has been a kind of guru for me in how I live my life although he would hate to have that title. He believed in the sharing of life’s philosophies, education and knowledge, with the implicit acknowledgement that we have no ownership of them as they were never ours in the first place. I learnt from him that wisdom, kindness and understanding that is passed on is the greatest gift that we as humans can share.

Destiny can teach us about people and the unconsciousness power they have to individually shape our lives.

Spring brings life….

February can hold the chill of winter, but can also herald the promise of spring. I believe that it’s a time to look forward, and to observe all the differences that the changing season brings. A very dear friend of mine recently and sadly said good bye to her beloved mother after nursing her through a debilitating illness that took its toll on her and her whole family. Her death was dreadfully sad, but my friend who has great faith, believes that her mother has gone on to a better place where she will be reunited with loved ones and will not have to endure the struggle of the past few months. Her funeral was a celebration of her life and was attended by the many people who loved this quiet, gentle and lovely lady.

While relaying the sad news of her demise earlier to another friend I was reminded of the youthful and carefree days of my youth where death only happened to “old people”. I remembered the scorn that I poured on my parents habitual reading of the local death notices and how often they would speak of someone who had recently died and their constant attendance at local funerals. They seemed to be forever speaking about dead people and although these people were their contemporaries they were so far removed from me and my young untroubled life that I had little interest in their lives and/or their subsequent deaths.

Now that I have reached a certain age I understand it all now. I am now the same age my parents were when I was a callow youth, and I too feel that sometimes I am surrounded by the never ending rituals of death and funerals. It is the constant never changing cycle of life.

In my youth I believed that life would go on forever- as we all do, and it is only as we get older that we realise that it is not so.

How we make that jump is down to life experience and age, and although it brings its own sadness as we lose those we love, it can be a hugely life defining chapter in our lives if we only realise it and use it to our advantage.

I am so sorry that my dear friend’s mother Mary Sweeney has died and will not see the spring that is coming. I will mourn her loss and I will support my friend through her sad and long bereavement. My own mother is dying so that loss is coming down the tracks for me too.

But I also want to celebrate the fact that I am alive and I am looking forward to this New Year despite the losses that it will inevitably bring.

I am glad to see the crocus bulbs pushing up through the soil, and I am glad to see the early daffodils shaking their beautiful heads as depicted in the wonderful Wordsworth poem… I am glad to see the local birds nesting and feeding their chicks, and I am glad to see the frog spawn in the local ponds. I am glad to see my adult children come to visit me and eat, chat and laugh, and I am glad that I have my dear husband of many years still beside me as a true friend and confidant despite my irritating habits and foibles. I am glad for the many dear friends that I cherish, and I feel beloved by their kindness and affection in return.

Death does surround us and it can be overwhelming at times as we journey through life- losing people that we love. We are the ones that are left for now, and in turn we shall die and be missed and mourned by the callow youths of today.

Life is for living and we all have our day in the sun.

My destiny may be written in the stars-but I haven’t yet worked out its meaning.

Emigration – Ireland & Me….

Reading newspaper articles on the emigration of Irish people in recent times, I have been caught up in the many tales of heartache and separation that occur when such a drastic step is taken. Many of the stories are about economic emigration because it can be difficult to see a future in the harsh landscape of Ireland in the post Celtic Tiger gloom of the present. Other stories are about bravery and vision and a belief that life will be better away from this small Island that has a huge history in shipping out its talent and youth and sending our best to the far flung corners of the globe.

When I was engaged to be married a life time ago, I had the opportunity to go to Chicago in America with my fiancé. He had an uncle who would sponsor us and we were assured of good jobs, accommodation and a loving family member who would be thrilled to watch over us and to help in any way that he could. My fiancé wanted to go but I didn’t. I loved living in Dublin at that time and being a young and naïve 19 year old, I didn’t want too many challenges or to be separated from my family and friends. My argument was that we would go, work hard and have a life, but would never be able to afford to come home for our parent’s funerals if they died. Travel was expensive in the early 80’s and this was a valid argument in my mind. We didn’t go and the dye was cast on our life in Ireland.

We stayed here, married, raised a small family and lived a small life surrounded by the people that were important to us. We educated our children and hoped that they would eventually acquire the skills needed to become independent and to continue to live here and not to be included in the statistics of people who emigrated and had to leave Ireland’s shores. We wanted them here with us and I believed that I was rearing them to become the new generation of Irish people who were going to continue into the new century with pride and a skill set that was worthwhile and valuable. Sustainable living in Ireland was our hope for them and I never gave a thought to them leaving this country.

My children are grown now and are independent and working. They are maintaining their own lives and homes against a backdrop of savage austerity and hardship. Tax cuts are biting deep and there are harder days to come. There are Increases in the cost of living, health insurance, fuel and other day to day products as well the introduction of stealth taxes on property and other items that reduce their disposable income every day. There seems to be no good news on the horizon for Ireland and for this new generation of citizens the emigration figures are climbing higher and higher.

Looking back at my own opportunity to emigrate, I realise that I was young and scared. I was afraid to take a step into the unknown, afraid to take a step into a different country, afraid to leave behind all that was familiar, afraid simply to take a step. Sometimes I wish I hadn’t been that way, and I really admire the people who have taken the plunge and have gone on to make lives for themselves and their families in so many places far from this land. They possessed the courage that I lacked.

As an Island state, Ireland cannot continue to sustain its population indefinitely and so will continue to provide the rest of the world with educated young people who will search out better places to live and to settle in. I will always want my children close by, but I am beginning to see myself as being selfish in not wanting them to go where life offers better possibilities. They have not mentioned emigration, but it’s something that I may yet have to face.

Home is somewhere that you carry in your heart and distance cannot change that. I always want them to be happy in their choices and not to be scared like I was when I was their age. If emigration calls them I don’t want them to be shackled to me or to the past, I want them to look to their own future and to find that special place that they can live and prosper in no matter where in the world it is.

I will also have a few bob put aside for them just in case they need to fly home for my funeral!

Destiny can be about evaluating the past and reshaping the future……

Living life facing death…

Mam, me and Bernie my mother in law. 2010

Mortality or death is something that surrounds us every day. We are faced by the brutality and sadness of it in every news bulletin and newspaper that we read, and although it is a part of our daily lives, it is usually about someone that we don’t know. Someone distant who we might think about fleetingly but are not connected to. We may feel momentarily sad for their circumstances and for the people who might mourn their loss, but really their deaths don’t touch us, as it is about someone else- someone unknown to us.

Facing death with someone you love is altogether different.

Ultimately we all know that we will die, but while we are young we manage to put that notion of death on the long finger. The Grim Reaper is not for us! Most of us imagine that we will grow old and die a peaceful death (if and ever we have a moment in our busy lives to even contemplate it).

The reality of living with mortality is heavy and dark, and I believe that we never really consider it until we are faced with losing someone we love or have actually lost.

Coming to terms with a life threatening terminal illness is an indicator of how powerless we really are as humans in the face of disease. We may have the will to live, but “fate “can decide otherwise.

I am currently facing uncharted territory with two special wonderful much loved women, my mother and my mother in law. My mother is 82 and has terminal breast cancer, and my mother in law who is 93, is in the early stages of Alzheimer’s .

Watching these two wonderful women cope with their disease’s while hoping for a positive outcome humbles me as I realise that they do not want to die. They struggle every day to hang onto life despite their pain and suffering.

They are on their own particular course and I am on mine. They will ultimately die, and in time they will be gone. I will have to cope and get on with living although my heart and life will be bereft without them.

This is my tough future.

Loosing someone that you love unexpectedly is horrendous as you have no warning –like the sudden death of my darling younger sister Annie, but loosing people that you love dearly day by day, little by little is tougher still.

Having to be emotionally strong and to pretend that somehow death is within our control is exhausting, and providing reassurance knowing what the eventual outcome will be, is heart breaking at this moment in time.

Cliché’s about ‘living life in the moment so that you will not feel regret in the future’ are easily spoken or read. They are harder to live by when time is taken up by the day to day management of hospital appointments, shopping, meal making and other mundane repetitive household chores that have to be completed.

None of these things really matter in the grand scheme of things, and although it keeps a semblance of order in the minutes, in the hours, in the days, in the weeks that go by, it is all meaningless in the context of what lies ahead.

At the funeral, will people remember that the house was clean and that the dusting was done? Will it be noted that the carpets were vacuumed and that the kitchen towels were matched?

I don’t care about this and I am sure that the people who will come to mourn with me in the future do not care either. In the time that is left I want to tell these lovely women to forget about the house work and all of the stupid household tasks that are rendered useless and meaningless in the face of death.

I want them to embrace sunshine as the day dawns, and to smell the sweetness of summer flowers. I want them to rejoice in the simplicity of living and to enjoy if they can, the wonder of a star filled night. I want them to enjoy ice cream dribbling down their fingers as they try to catch the last bit, and to do all the things that are possible in the time that they have left. These are the things that I think are important, but I realise that what I want may not be a part of their thinking as they struggle towards an unknown future.

Living with their uncertainty has changed my own perspective on life, and the clichés about living in the moment have never held more resonance than they do now.

Living life and facing death is not just my destiny, it is universal to us all.