For many people the moment that they discover that they are pregnant is earth shattering. Joyous, scary and overwhelming, either way it is a life defining moment that I doubt many people ever forget. For the majority of women I imagine that moment involves all the glamour of two damp pink lines on a little plastic strip, knickers-round-your-ankles-hand-shaking-clock-watching-box-checking.
For me and approximately one in every 103 people in the UK, it was a little different, no more glamourous, just different. The first I knew of the life inside me, was my head pounding like one of Tolkien’s rock-giants was stuck inside it, trying to beat their way out. I squinted out of my skull. My whole body pulsed with an ache. A familiar feeling, that reminded me of muscles I didn’t know I had, an agony that stabbed into my toes, made my eyelashes seem heavy and hair like it was made of lead.
With an effort I lifted my burning eyes, to see a man on the bed next to me, I blinked and recognised my husband. “Hey” he said and in a second I saw the effort it took him to banish the worry from his eyes. I saw the love and pain and I was sorry. I knew his pain wasn’t my fault but it felt like my fault. It always does. And I knew. I knew. I knew, but I asked anyway. I asked, “Have I had a seizure?”
You see, as well as being an author, employee, wife, sister, daughter, friend, cook, I, along with one in every 103 people am also Epileptic. A label which I had hoped against hope had left me, but as soon as life took hold inside me it seemed to want to stick to me again. That seizure, bigger, bolder, scarier and crucially at a time my period should’ve come, was my two pink lines. My test. My terrifying and joyous moment. Just like yours. At least that’s what I naïvely thought everyone would think until I saw the first epilepsy nurse.
“So obviously”, said she, in her starchy blue uniform, (so tight I worried it might burst and a popper blind me at any minute) “obviously you can’t bath a baby on your own.” I stopped and stared at her, my mouth flapped open and closed. She mumbled on about scans and tests, antenatal clinics and lots of ‘normal-pregnant-person’ things and stamped my file ‘High-Risk’. I heard none of it. One word screamed inside me drowning out all others ‘obviously’. Epilepsy is an invisible condition, it affects everyone differently, and we do not yet understand everything about it. There is no cure. If there is one thing which epilepsy isn’t, then that is obvious.
What is obvious is the level of ignorance surrounding the condition even amongst supposed specialists. The first trimester of pregnancy is famously hard, morning sickness, acid reflux and bouncing hormone levels make a heady cocktail for anyone. Throw into that a high-risk epilepsy diagnosis and pregnancy can feel more like a ticking time bomb, not a joyous, natural state which women, epileptic or not are designed to survive.
Since becoming pregnant I have been overwhelmed by pregnancy media and underwhelmed by anything related to epilepsy and pregnancy. It is my hope that by writing about it more women with epilepsy will speak up about their experiences and who knows one day perhaps there will even be specialist epilepsy midwives who empower the woman they work with, work out ways to help them bath their babies and never tell anyone that ‘obviously, they can’t’.
The truth is my pregnancy is really no more remarkable than anyone’s. It is an incredible experience, a wonder of nature, just like yours. Perhaps I am more exhausted than others, perhaps epileptic mums-to-be should consider spa days as mandatory maternity care, rather than nice-to-haves. But then again all women creating life are to my mind incredible, and incredibleness deserves cherishing, nurturing and looking after.
So go ahead book yourself a pregnancy spa package. You have never deserved it more.
Read Lucy’s blog about life with epilepsy.
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