Monday 19 November 2018

'I was on the other side of the world when I got a call to say my wife had died in her sleep', says grieving husband

Mark Earley shares his heartbreaking story of the sudden loss of his inspirational wife Liane to epilepsy, and tells how writing, swimming and fundraising help him cope with the pain

Mark Earley and his late wife, Liane Deasy, who died suddenly from a seizure at Glendalough in Spring of this year
Mark Earley and his late wife, Liane Deasy, who died suddenly from a seizure at Glendalough in Spring of this year

I met Liane Deasy at a party near Salthill in Galway. I was living there for a year studying to be a teacher in NUI Galway and I fell deeply in love with the city and the people. It was everything Dublin wasn't - a cosy, rainswept embrace full of opportunity and adventure. In many ways meeting someone like Liane in Galway made sense - she was a person who adored being outdoors, her eyes gleaming with mischief and a beaming smile across her pretty face.

We slowly got to know one another and quickly fell in love. It was a beautiful, exciting and intimate time. We learnt about each other, grew into one another and started down a road that would lead to love, marriage and in April of this year, nine years later, her death.

Liane was everything I ever looked for in a partner: strong, beautiful, warm, caring and adventurous. She pushed me to be more open-minded, gently encouraged me to believe in myself and fostered in me a strength of character and purpose I never knew I had.

Her gentleness was backed up by a steely resolve and a sharp mind full of ideals and love. A consummate professional, a giving daughter and a caring sibling, Liane was at the centre of so much good. Her friends went to her for advice and a shoulder to lean on, and there she stood, a steady rock in the middle of the twists and turns of life.

Epilepsy

As a teenager, Liane had her first seizure. Her sister thought she was play-acting at the time but months in hospital followed, a disrupted school career and a diagnosis - nocturnal epilepsy. Between 45 minutes and 60 minutes into her sleep cycle Liane was prone to epileptic seizures. Her teeth would clench, her body would go rigid and she would shake, often violently. I lay with her through these seizures as the many drugs she took failed to control the epilepsy.

My role was one of carer - to make sure she was safe in the bed, to help her in any way I could when she returned to consciousness. It became part of our life, part of who we were as a couple. Her epilepsy was uncontrolled; the drugs she was prescribed did not, and could not, stop it.

Away

On the evening of April 20 this year Liane went to bed in our house in Glasthule. I was in Australia where I'd been for just over a week to be best man at a friend's wedding. She had spoken to me that morning and texted me that evening. Liane had just started a new job with the HSE in Loughlinstown. She was a speech and language therapist - a hard-working, passionate and very well respected one. The job in Loughlinstown was her first step into the world of the HSE and she was excited, daunted and proud. It was the culmination of many years of hard work.

Liane's sister called me just before the first leg of my journey home from Australia. She told me that Liane was dead. She hadn't shown up for work, and when her sister went to our house she found her dead in our bedroom. She had died from a seizure in her sleep, alone, while I had been on the other side of the world. I stood in the airport, my laptop in one hand, trying to breathe. I bent double as my stomach and heart caught up with my brain. I don't know what I said down the phone. I remember a French woman with two young children and a husband holding me as I fell apart. I rang my parents, my twin brother and my younger sister before I was shepherded onto a plane and into the sky for 13 hours.

I don't think I've ever felt such raw emotion and I hope I never feel it again. The loneliness, the pain, the loss and the shock hit me in incessant waves. My best friend, my wife, the future mother of my family - all that was gone now. All my shared dreams shattered and a landscape of uncertainty and fear lay ahead of me. I didn't know what else to do, so I wrote.

Writing

All the way to Abu Dhabi and then on to Dublin, I wrote about Liane. I wrote about what we had together, about what she meant to me and about who she was. It later became the tribute I read from the front of the church at the humanist celebration of her death. I was scared I'd forget and I needed something to focus my mind away from the intense pain I was feeling. I wrote and I wrote, getting solace of sorts from memories of our holidays and the family plans we had laid out.

Writing has always been something I have enjoyed, but never spent enough time doing. Since Liane's death I have written a blog called There Are Words (www.therearewords.com)that I post on weekly as a coping mechanism for me and as a tool for others.

If my public diary of my personal experience can help someone somewhere to overcome their grief, then it will be worth pouring myself out to the world. I'm not the first person to lose a loved one.

People deal with death and loss in different ways. Some people close up, others get angry. I was raised by parents who instilled in me a deep love for others and an emotional intelligence that has served me well for my whole life.

I think that if Liane is able to see who I am now, who I have become since her passing, she would be immensely proud, and that means a huge deal to me.

Coping

'How is a 36-year-old meant to deal with the fact that his wife has died just 18 months after they were married?' I asked myself this question so often in the days and weeks after Liane died. And the answer slowly became clear to me - you learn to live with pain and you build coping mechanisms to survive. As well as writing, I started swimming in the sea. I started talking openly about my emotions. And I fundraised.

Swimming is probably the most important thing to me now. I go every morning before work in the Forty Foot, not far from where I live. Two friends come with me and we talk, we check in with each other and we brave the cold.

The routine helps. The clarity and the cold bring me comfort. The ability to think of nothing else in the water helps. I feel like we've uncovered some sort of secret - one we'd been blissfully unaware of until now. Liane swam - she loved it. She taught me to stop embarrassing her with my wetsuit and to embrace the cold. Few things remind me of her more than the matching hooded towels we had or the beautifully alive colour of her skin after a cool dip.

Before I met Liane I was a pretty open person. I like socialising and getting to know people. I want to be involved, to share experiences and to live around others. Liane was more private. She cherished intimate groups and no small talk. She gave me the gift of sharing my emotions with others in a more intimate way by teaching me to love myself. Sometimes I wonder was she all the while preparing me for the seemingly inevitable.

Epilepsy Ireland

After Liane died, a number of things became clear to me. I had an energy that made me want to make something positive out of her death. I was also aware of a huge groundswell of support around me. I wanted to honour her memory by giving to others. All of these things led me to start fundraising for Epilepsy Ireland. With friends and family I entered races, organised events, competed in swims and have helped raise over €30,000 in just six months. That figure startles me and makes me smile. That kind of money can help so many people.

Moving Forward

Sudden Unexpected Death in Epilepsy (SUDEP) is something we had spoken about. We were aware of it. It is the unexpected death of someone with epilepsy, who was otherwise healthy. The statistics regarding SUDEP are frightening, with 80 to 130 epilepsy-related deaths in Ireland each year. I didn't know those odds.

I don't know what the future will hold. I know I'll always love Liane in a way I don't think I'll find again. I know there will be difficult times with more obstacles and harsh memories. What I don't know is how I'll rebuild or where I'll end up. There's a certain amount of freedom to that thought and also a lot of fear.

The facts on Sudep

* SUDEP is when a person with epilepsy dies suddenly and prematurely and no other cause of death is found.

* It is most common in young adults, particularly men.

* The causes of SUDEP are still not fully understood but may be due to a failure of cardiac, respiratory and autonomic systems.

* SUDEP occurs in approximately one per 1,000 people with epilepsy (one in 4,500 children).

* Becoming seizure-free is the best way of reducing the risk of SUDEP.

* Epilepsy Ireland estimates that there are up to 130 epilepsy-related deaths in Ireland each year and that about half are due to SUDEP.

* Other epilepsy-related deaths are caused by prolonged seizures, accidents, injuries & drowning.

* Data from the Epilepsy Deaths Register for Ireland (EDRI) in 2016 found that almost 60pc of bereaved families in Ireland were not aware that their loved one could die as a result of epilepsy.

* For more information on SUDEP log onto www.epilepsy.ie or call 01 4557500

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