Today is SUDEP Action Day. Mark Earley (37) shares his story of the tragic loss of his wife Liane to Sudden Unexpected Death in Epilepsy (SUDEP) and how he trying to rebuild his life.

ON 20 APRIL 2017, I fell to the floor of an airport on the far side of the world, my laptop prone in one hand and tears flowing down my face.

A French woman realised what was happening and came to comfort me, leaving her husband and young family to watch on in shock.

I couldn’t breathe.

I couldn’t think clearly.

There was a pain in me I’d never felt before.

My mind was racing but I couldn’t hold on to a single thought. Nothing made any sense.  That day was the day that Sudden Unexpected Death from Epilepsy (SUDEP) became a horrible and tragic reality to me, to my family, to my wife Liane’s family and to all the people connected to us. 

According to an old friend of mine, I first met Liane Deasy as a teenager outside Dalkey Library. I don’t remember that day but I knew her name, had seen her around and knew she lived on the road perpendicular to mine in Glenageary.

It wasn’t until a fun night in Galway at the end of 2007 that we first met properly. Within about six months we were dating, slowly falling for each other, and within another few years we were living together. We got engaged on Killiney Hill on Stephen’s Day in 2014 and it was the happiest moment of my life up to that point.

Together we saw a long road laid out ahead of us full of love – building a home, trying for a family and sharing every part of ourselves with one another. Nothing could stop us and nobody was like us. We had a love that was as strong as it was unique, a love we celebrated in Clifden at our wedding in July 2015. 

As far as people go, I have met few like my wife throughout my 37 years on this planet. She had a gentle warmth and a caring nature that shone out through her eyes. Her touch was careful and her mind sharp and mischievous. She loved talking to people in private, sharing her opinions easily, an avid avoider of small talk. Around her she held close friends and family tightly, often putting them ahead of herself.

Liane had a natural beauty that quietly lit up wherever she went and not a notion of it doing so. She was my best friend and my soulmate, the first person in my life to understand me and accept me.

Liane’s epilepsy was nocturnal, she had seizures in her sleep, about 45 minutes into her sleep cycle. We couldn’t control it , her taking many different medicines and living a largely healthy life.

She was the strongest and most determined woman I have ever met and yet she couldn’t stop the seizures coming.

Some were bad, some were worse, some came and went without remark.

They were part of our life, an unwelcome part but together we managed it.

I remember how worried Liane was when she first told me about her epilepsy. I remember the pure fear I felt the first time I woke up to her having a seizure beside me. Every time Liane had a seizure, I worried a little bit more; was there change in what I was witnessing or was I getting used to them occurring? It’s a thought I come back to often.

 
Rebuilding my life

Since Liane’s death I have slowly pieced my life back together. As of 23 October, she is dead 18 months, an unfathomable length of time.

Whenever I see a number like that I think of how much she has missed, how much we haven’t done together and how much I’ve ploughed on and done without her. It’s a strange feeling.

Being here without her has been – and still is – hard work.

I’ve been saved by friends and family and assisted by professional help. I’ve dug deep and searched for positives, trying to live a life that celebrates everything she stood for.

I think I’ve achieved a lot in terms of personal growth, who I have become and what I have shared with others.

Each one of us will experience death or personal loss at some point so for me it seems logical to share my path to try to offer reassurance and hope to others.

Through fundraising for Epilepsy Ireland, swimming in the sea on a daily basis and supported by the love of those around me, I have made it this far. I intend to keep going with Liane in my heart and my heart on my sleeve.

Mark Earley is a teacher, a sea swimmer, a photographer and an Ultimate Frisbee player. He is based in Dublin and writes a blog about his grief called There ARE Words. Mark was recently awarded a National Volunteer Award by Epilepsy Ireland having raised over €55,000 in the year after his wife’s death. The annual Liane Deasy Memorial Swim will take place for the second time in the middle of July 2019. For more information on SUDEP log onto www.epilepsy.ie or call 01 4557500.