A Murmuring Mind: motherhood and epilepsy

Lucy Davies was diagnosed with epilepsy aged 15, after a childhood of seizures. Now mother to a six-week-old girl, she tells us about pregnancy, motherhood and early mornings…

Lucy, 30, lives with her husband and their six-week-old daughter Rue in Brighton. She’s a writer, blogger and author. 

Where did you spend your childhood and what was it like?
Born in southern England to an ordinary, happy family. My childhood was full of love, laughter, siblings and ordinariness. Except it wasn’t. Every day, several times a day, I would disappear. The world fell away and I would fall into nothing. My body would remain with my family but I’d be gone. I slipped away and no one noticed. Not at first, not for a long time. I’d come back to angry faces, strange stares and sheer terror.

At what stage were you diagnosed with epilepsy?
Eventually, at fifteen I was diagnosed with epilepsy. After that life became extraordinary and my mind hasn’t stopped murmuring since!

What symptoms were you experiencing?
My first grand mal or tonic clonic seizure was on a train when I was 15 years old. I have had lifelong absence seizures and myoclonic jerks. Seizures are followed by confusion and fear. Typically after a tonic clonic seizure I don’t know my name. With absence seizures I might walk out of the house to a shop and forget how I got there. Myoclonic jerks make me drop things. When I get a cluster or group of myoclonic seizures and absence seizures close together that can be a warning that a tonic clonic seizure is coming.

How did it affect your early years?
It took a long time to be diagnosed – but people knew ‘something’ was happening. I was sent to see lots of behavior shrinks and education specialists. I couldn’t remember the alphabet or things in strings like times tables. I would get confused and lost in school all the time. I went to several different schools and found it hard to make friends.

You write a blog: A Murmuring Mind – about living with epilepsy. When did you start this blog, and why?
I started to blog in March 2013 after I experienced an epilepsy related workplace discrimination case, the stress of which almost left me unable to walk and my epilepsy much worse. It led me to changing my life, becoming self-employed and starting a serious career as an author. Initially I started the blog as a cathartic tool for myself, but gradually I built up an online community around it and connected with others on similar paths. I now consider it an essential part of my health and wellbeing; to write and share my journey. There is still massive stigma surrounding epilepsy and I hope that by talking about it more I will play a small part in lessening this.

How regularly do you suffer the effects of epilepsy now?
For me the effects of epilepsy go far beyond the Hollywood image of shaking on the floor that people might recognise. Although my seizures are relatively well controlled by daily medication it is a daily battle not to let epilepsy define my life. These are a few examples of my daily thoughts:

What if I have a seizure and:

– drop the baby

– lose the baby

– forget the baby

– am seen having a seizure by a stranger/ health professional and they deem me an unfit mother…

‘I must not be frightened because I don’t want Rue to be frightened’.

Did your condition impact on how you felt about having your own children?
Yes. Everyday I wondered: What if my baby has epilepsy? What if I hurt her?

How was pregnancy for you?
Not great. In fact for me it was the hardest part. I’d do labour again, I’d do this bit (postpartum) again… but pregnancy… not sure. My epilepsy got worse and I had hypermesis fravardium which as well as being hideous in itself meant I couldn’t keep my epilepsy drugs down which was scary.

You wrote a powerful, moving blog post about your birth story, were there limitations on how you could give birth? (eg. Hospital rather than home birth)
Yes the NHS wouldn’t send me a midwife for a homebirth and a birth centre wouldn’t accept me so I had to go to hospital which I eventually made peace with. There were MANY things they said I initially couldn’t do but then I was able to have the option of all of them. With a supportive family, a bit of research and determination! Basically I just wanted to be treated like any other woman and eventually I was.

Did you find any change in your symptoms from all the pregnancy/post birth hormones?
Yes they all got worse.

How are you adjusting to new motherhood?
As a teenager after my diagnosis I was told having children might not be possible for me. So being a mother is a wonderful unexpected JOY! It is also as any parent knows life-changing hard work. I think it’s like an extreme sport – serious highs and serious lows! Never for a moment would I change it though, I just wish epilepsy wasn’t an extra worry to add to my mix.

What precautions do you need to take (if any) when looking after Rue – can you spend long periods alone together, or is there a risk of a seizure?
There are always risks. I have to spend the whole day alone with her, that’s how our lives work. I am on maternity leave and my husband goes out to work. Family are a few hours away. But anyone could have a seizure, anyone could drop their baby, I guess my risk is just a little higher. I try to be as ‘normal’ as possible. So far I haven’t bathed Rue on my own, but partly because bathtime is lovely to share and one day I will. I refuse to let epilepsy put boundaries on my life or hers. Epilepsy is just a label. I am as careful as any parent, I want to protect my baby.

How are early mornings for you?
Due to epilepsy I have to be careful about early mornings, my husband looks after the babe till 6am when I have a cuddle with her in bed and wake up slowly and take my medication with a strong cup of tea!

What vision do you have for the next few years; how do you see your life with Rue and your partner, her dad, panning out…?
We will continue to live healthily and happily as ordinary and extraordinary as anyone. We would like to live abroad for a while, expose Rue to other cultures and languages, her dad is Colombian so we speak Spanish at home. We will be together and whatever happens we will be grateful for all we have.

Any other comments on motherhood/pregnancy/epilepsy/anything else…?
I hope that by sharing my truth about motherhood it will encourage more people to share their stories and empower women, particularly those labelled ‘high-risk’ to know that they can do it too.

www.amurmuringmind.com