SUDEP: "Know about it. Understand it. Be aware of it."

Sunday 29th May 2011 was the day that broke my heart; the day my husband died suddenly and unexpectedly in his sleep. Adrian went to bed that night and never woke up. His last words were to me - “I love you”. The coroner identified cause of death as SUDEP, it was something I was aware of but, of course, Adrian and I tried not to focus on it. We both lived with the general feeling that there are risks in life for everyone.

Adrian Webley was 34 years young when he died and had lived with epilepsy for as long as he could remember, from two years old I believe. Doctors had found the right medication and dosage that controlled his seizures well and Adrian led his life as he wanted to lead it. He refused to see epilepsy as a disability or something that should hold him back from pretty much anything.

I met Adrian when he had been seizure-free for ten years.  He was so pleased as it was the longest period in his lifetime, a grand achievement for him and had meant he’d finally got that all important driver’s licence he’d been dreaming of. Throughout our time together I knew Adrian to have five seizures, all at night during his sleep. I could cope with them, I was prepared and having had a seizure myself when I was younger I felt I could understand how Adrian felt when he ‘came round’. After a seizure Adrian would sleep, the deepest sleep for the longest time – sometimes days, sometimes just a few hours, but always afterwards didn’t realise what had happened.

Epilepsy didn’t scare me as such, but I always worried about the unexpected and unpredictable nature of it. Adrian always insisted I had nothing to worry about, he was always ok - well, he had been. Before his death, Adrian’s last seizure had been in January 2010 before we were married, swine flu had been rife in the UK then and Adrian had been quite poorly.

When I think of all I could write about Adrian, a wonderful son, grandson, brother, uncle, nephew and of course my perfect husband – you'd all be reading for days.

Adrian was unassuming, quiet and the most thoughtful person I've ever known. Everyone who had the pleasure of knowing him even for a short time will agree he was definitely one of the good guys – let me rephrase that – he was the best guy. He was one of the rare people that every loved, admired and genuinely respected, his soul was pure and good, when they say nobody is perfect I can argue – some people just are.

Adrian’s Family & Friends

Photo: Adrian with niece Evony

When I became Adrian's girlfriend he couldn't wait for me to meet his family – his mum and dad, his brother and especially his Grandma. His love and devotion to them was so clear and to me, very endearing. Adrian loved his Mum and Dad so very much, always thinking of them no matter where in the world we travelled or however long it had been since he saw them. His absolute adoration for his Grandma, Mary, was wonderful; visiting her as often as he could, taking her wherever she wished to go – nothing was too much trouble for Adrian. He would do anything for anyone but especially for his mum, dad and Grandma. I am honoured that he asked me to be part of the Webley family.

Adrian loved his brother Matt in true ‘brother’ style – rough, teasing and often quite silly, and although they had varying differences in opinion he always remained very proud of his younger (and as Adrian would insist less attractive) brother. Becoming an uncle to the beautiful Evony, made him especially proud and he couldn’t wait to teach Evony so many ‘Uncle’ type things – probably to annoy Matt and be seen as the ‘cool Uncle’.

Adrian had nothing bad to say about anybody - he genuinely didn't. He was patient and kind, he'd listen without making judgements and he'd offer advice but be supportive no matter what. If you were a friend of Adrian’s, you were a friend forever. He spoke of people, friends and colleagues so fondly, telling me stories from years gone by, I feel like I knew him forever. Adrian really did cherish his time spent with everyone.

The best way for me to try and describe Adrian and I, well… the day I met him, the day I fell in love with him…that was the day my life started. I had found perfection when I found him.

Adrian Changed My Life

Words will never do justice to how Adrian changed my life and made me the person I am today. I am truly the luckiest girl in the world; for having known him but especially at becoming his wife. Adrian will always be the love of my life; not just my husband he's my best friend and my soul mate; he's my forever and my eternity. I may have only had him for a short time, but it was the best time, and I am so grateful for every second we had together.

Adrian taught me to live each day for what it is, not to take anything for granted, to cherish each moment and each person, and always do the things I really want to do. Adrian didn’t believe in wasting time getting angry, irate or stressed about the ‘nonsense’ things in life… now I realise why. Even after his death, Adrian is still teaching me things - life is short, for some bitterly so; memories are warm and comforting so make as many as you can and life is what you make it.

Losing my husband feels like I've lost the biggest part of myself. I feel lost, like I’m on pause and I am just watching the world carry on around me at top speed. In a room full of people or out in a crowd, I feel like I’m the only one there. I can see people but they can’t see me, I can hear them but I don’t want them to hear me. I’m in a bubble, my own little world, trying to make sense of it all; figuring out how my life will pan out now. The life I thought I was going to have has been torn apart but I have a life and I will use it as Adrian would advise, not to waste it and make the most of every day.

For him I will do the things we planned – I'll see the things he wanted us to see and Adrian will be with me every step I take. He was the right to my left, the up to my down and the in to my out. Now, he is the stars in the night and the sun in the sky, he's the breeze that surrounds me and the birdsong that wakes me. He promised me, no matter what he'd never leave me and I know that even now, his promise will remain unbroken. I have my own angel, one I’d trust implicitly to guide me right, and for now it comforts me to imagine him only a step away.

Memories and the Future

Photo: Adrian in Vegas

We all have great memories of this special man. I knew him inside out (he’d say better than he knew himself) and he would want us all to make and cherish perfect memories, share our stories, laugh and cry and love. We are heartbroken that he has been taken from us, but we'll celebrate the wonderful life that he led and it was, it truly was.

I don’t want Adrian’s death to be for nothing, I want to make it an example of what can happen and raise awareness, but not to worry or frighten anyone. I want SUDEP to be looked at by all involved: professionals, those with Epilepsy and their loved ones. It should be something that is discussed, investigated and researched so in the future other wives, brothers, mothers don’t have to feel what I’ve felt. I’ve gone through the most painful thing I could imagine, and it’s tough. It’s scary and even now I still take things one day at a time because that’s the only way I can cope with the loss.

I urge you all to talk things over, don’t let SUDEP take over your thoughts or let it worry you unnecessarily, just know about it, understand it, be aware of it.

And to Adrian, my darling, wonderful Adrian, Thank You.

Thank you for being you, for loving, for caring, for laughing and for teaching us all that each day is precious, each relationship should be cherished and we all should do all that our heart desires.

Wait for me, until we meet again my perfect husband, I love you more each day, I always have and I always will.

Jenn Webley
June 2012

Photo: Adrian & Jenn