Open Letter to Birth-workers for Epilepsy Awareness Week

Dear Birth workers, (Doctors, midwives, doulas etc)

This week is Epilepsy Awareness Week so I am writing an open letter to you all reflecting on my experience of being labelled ‘High-Risk’ in pregnancy due to having Epilepsy. I became pregnant in February 2015. This was my first baby, I was 30 years old. Around 2,500 women with epilepsy will have a baby each year in the UK. One in every 103 people has epilepsy. So the chances of you working with a woman and/or a family that has a member with Epilepsy is incredibly high. It is not an uncommon condition and I hope that this note might be a useful resource for those times.

First, I would like to say what utterly incredible work I think you all do. I am simply in awe of how hard you all work and I cannot begin to say how grateful I am for you. However, my experience of care during pregnancy and  postnatal period was very challenging and has left me saddened, which is the reason for this letter.

Early on in my pregnancy I was given a list of things I, ‘A Pregnant-Epileptic-Mum’ could not do. First on this list it said “Do Not Carry your baby on stairs”. I live in a garden flat accessed by a steep flight of metal steps. I had nightmares after that appointment for the rest of my pregnancy and still get twinges of fear when I am on the stairs with my baby – am I being irresponsible to go out and buy food?! My interactions with the medical staff left me feeling trapped and like my very existence was endangering my unborn child. Even that I was incredibly selfish to want to have a child.  I was made to feel toxic, and that no one wanted to ‘be responsible’ for me. Basically people where frightened of me, or more accurately of Epilepsy. At 38 weeks I went into labour naturally and after 14 hours had a straightforward, hospital vaginal delivery, supported by my amazing Doula and family. And despite all the concerns and disabling lists it was extraordinarily ordinary.

However, I believe my care could’ve been easily transformed by birthworkers keeping a few simple things in mind; First and foremost by remembering that I am a Woman. Just like all the others you work with. Just as nervous and excited and unsure as everyone else who is about to have a baby. Everyone has unique challenges. My challenge happens to have a name which labels me as ‘high risk’ on your forms. But please remember before I am ‘An Epileptic’ I am ‘A Mother’ like all the rest, and I need/ed to be treated as such.

Secondly it would’ve been transformative if  you had recognised that anyone with a ‘life-long’ condition, such as my Epilepsy is for me will know far more about their own (dis)ability than any degree could have taught you. Plus they will likely have much more anxiety around the way it will affect their baby it than you can begin to imagine.

With these two things in mind it follows that what I really needed, what I craved, was encouragement, patience and kindness. Just like all women, instead of pointing out obvious problems, which only caused extra anxiety, heartbreak and downright terror. Solution focused, positive, hope-based and realistic discussion is what was needed. Instead of telling me I couldn’t walk down stairs, you could help me work out how to manage accessing my home. Enabling not Disabling me.

I know that many of you know this. I know also that this is a complicated issue, that you face huge barriers of resources and bureaucracy, that you are all trying your very best. And you cannot be experts on everything. I know that. But still, from my heart to yours I want to ask you. Next time you meet a pregnant woman who happens to have Epilepsy, whatever you do make sure she knows you believe that she can do this thing. That she can have a healthy happy baby. Just like everyone else. Epilepsy makes you feel like you can’t. She needs cheerleaders.  My Doula and my family were those people for me. Many women don’t have that luxury. You, in your role as a Birth worker can be that person. It could change her life.

I hope that by writing this to you, it might help other women labelled ‘High-Risk’ to be able to have more positive, supported pregnancies than I did. If you would like to know more specifics about my pregnancy and postnatal experience please do not hesitate to get in touch with me.
Thank you for all your wonderful work

With much love

Lucy Baena

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Mental Health, Epilepsy & Me!

Some un-edited, first draft thoughts for Mental Health Awareness week!

At 15 I was diagnosed with Juvenille Myoclonic Epilepsy following a big Tonic Clonic seizure when I was alone on a train. Subsequently it was realised my life-long history of ‘behavioural problems’ where infact Absence seizures. The physical effects of my epilepsy were dealt with relatively quickly, trying a truck load of drugs to ‘manage’ the symptoms, the actual seizures.

 However, the emotional impact of being diagnosed with Epilepsy was never even discussed. The sudden labelling as a ‘disabled’ person, the restrictions put on me, the overnight terror my family tried to hide from me but that I could feel radiating from their hearts was never mentioned. The casual mention that I might never have children and the cataclysmic realisation that at any moment I could have a seizure, hurt myself, die even, was life altering in a way that I don’t think words can fully describe. Not to mention that the drugs had side affects, made me not sure if the way I felt was ‘me’ or the drugs. All that mattered was that as far as Neurologists where concerned, I was OK. My Epilepsy was ‘relatively well controlled’….yes I had ‘breakthough random absences’ but generally it was OK.

When I was about 18, the panic attacks started. At first I thought they were a new type of seizure. My vision would go funny, I’d hyperventilate, sweat, feel sick, like I was going to pass out. My EEGs revealed that this wasn’t epilepsy. Simply ‘fear of it’ my Nerurologist said and recommended some CBT therapy. For him it was good news. For me it was another part of Epilepsy that I just had to ‘handle’. The CBT (Cognotive Behaviour Therapy) helped for a bit. I did yoga and learnt about meditation. That helped. A bit. I hid how I felt. Laughed it all of. Made light of epilepsy. Avoided talking about it at all. Left the room if anyone mentioned it. I couldn’t watch anything with people having seizures in it. I despised Epilepsy charities. Hated my Medic-Alert wristband.

Then I started to get Back Pain, small things at first, a twinge, my book would ‘go’. Then there would be a week every now and then that I couldn’t walk I’d be in so much pain. I thought maybe a seizure had hurt my back somehow. Then I went through a work discrimination case about Epilepsy. After that I couldn’t walk for six months. Was told I might never walk properly again. During that time I received a diagnosis of PTSD- post traumatic Stress Disorder linked to Epilepsy. I had flashback to the worst seizures I’d had, nightmares, panic attacks. Even when my Epilepsy was ‘good’ I lived in fear of not getting enough sleep, not having enough food to balance my sugar levels, anything that might trigger a seizure. After much research and countless doctors visits, I learnt that I have a stress-induced Chronic Pain Condition. I believe this was started when the emotional impact of my diagnosis was ignored. It flares up when I have a negative thought which triggers my body into flight or fight response, restricting oxygen blood flow to my muscles, normally my back which is agonising- much like when people blush or get errections – a thought = an actual physical symptom.

Slowly I began to change my life. And learnt to walk, then run again. I started to have regular Body Psycotherapy which I make a priority. I work constantly on trusting body, I prioritise my mental wellbeing and recognise that for me this has been the biggest impact of Epilepsy. Some days are harder than others. Connecting with other people with epilepsy is a big step for me. Epilepsy is so very much more than seizures.

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Some thoughts on Yoga

There’s been a long silence on this page, I know I haven’t written like this for ages. Lying down, tapping keys, diffuser on, quiet house. Stuck for time and space my words have been rushed into little Instagram squares typed with one thumb whilst the other stirs a soup/holds a babe/does the laundry. By evening I’m too tired to see a screen, let alone write, replying to messages is about all that’s been getting done. Organising the next day, is all I seem to have energy for. Planning writing days months in advance, losing the spontaneity of a story as it slips through my fingers. Watching the world shift in the last year blowing the family apart. The depths of the tragedy which has wrung out the hearts of my nearest and dearests. Sometimes I feel like I have nothing to say. Nothing to add. That I don’t know how to write anymore. That this blog has become a ramble with no fixed aim? Is it cathartic or business? I yearn to start a fresh one, concise and new, targeted, let this fade into history perhaps…perhaps but then this is my truth; a rambling round and round kind of life.

……………………………………………………………………………….

Throughout this blog there is one thing I have learnt, been practicing, a thing that has got stronger and stronger in my life, something which seems to constantly be there to fall into, that holds me up even on the very darkest of days, an almost tangible force which only now after almost a decade of regular practice am I starting to feel I finally have a glimpse of what it actually is and that is Yoga. From almost as far back as I can remember I have been drawn to the practice, to the quiet, sacred space it seems to create. I remember watching a woman alone on a Devon beach early one morning when I was a child. She moved and swayed, groaned and breathed in time with the waves, I was hypnotised. The adults I was with hurried me on with a quick ‘Don’t stare darling! Come on.’ I remember she used to appear in my dreams after that sometimes. It’s only with hindsight that I realise she was practicing Yoga.

I think I first started to take Yoga seriously at university, when I was about 18. I remember the flyer for my first class had a picture of a tree on it. I liked trees, I’d been partying a bit too much, I had some notion it would be a ‘good’ thing to do. I remembered that woman on the beach, and I went. I’d love to say that I was hooked from then on that I became a Yogini overnight and dedicated my life to studying the Yogic paths…but it wasn’t quite like that, I was too hedonistic too much of a slave to the rave! I enjoyed it in a somewhat superficial, oh-isn’t-that-nice sort of way. Trying classes, then stopping. It took almost another six years for me to begin practicing at home and even then, through it all I’d say it’s only in the last year or so that I’ve really started to connect to what Yoga is.

It’s become a thread that runs through my life, through Epilepsy and Chronic Pain, through marriage and parenthood, through birth and death, through each day. It’s there in the background constantly. Like a stake pulling me back to earth, grounding, centring, holding. It goes far beyond Asanas, beyond perfect instagram poses. It’s about community and connection, it’s a link to women who’ve become sisters and those who walked before me. It’s thinking about what we eat, watching the seasons spin, and noticing the moon, the ebb and flow of my cycle. It’s loving my family and recognising my place in that. It’s being present with each moment. It’s learning about generosity and ultimately about love.  But more than anything Yoga reminds me how our thoughts create our reality. So we might as well be positive.

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Dear People having-a-shit-time-this-Christmas

Dear People having-a-shit-time-this-Christmas, more specifically Parents, – this is for you!

(I’m tempted to call you Monarchs with a nod to my current blog heroine Constance Hall but it seems contrived. I am not her. But please feel free to don your crowns!)

At this time of year passing windows full of Christmas trees and glittery fairy lights, twinkling out from cosy-2.4-kids-healthy-happy-couples firesides, it’s easy to think you are alone. Trust me. You are not. Those twinkling lights are lying.

This is a note for you. For families like yours, like mine. For those who have lost. For those who are losing ones they love. For those who hadn’t realised how perfect their lives were until that diagnosis, that accident, that moment. For those who have had to say goodbye too soon. I want to say to you;

It is OK to not be OK. Especially now. When The Perfect Family are twinkling away next door.

It is OK to want to run away and never come back.

It is OK to not see your babies as continual-magical-joy-giving-creations

It is even OK to resent them their innocence. It might be taboo. But I swear it is OK.

It is OK because you are not alone in feeling this. Many, or even most parents I reckon feel this, if they don’t then life just hasn’t yet handed them the shit-chips that bring it on. Go them. But they will. We all will. It is normal.

What is abnormal, what is extraordinary is you! When facing this life-altering shit;

You, you glorious being, choosing not to walk out of that door.

You, finding just one reason to kiss your childs head.

You curling your lip to smile, however fleetingly at an innocent gurgle.

That is the real Christmas magic. YOU.

Doing all of that. You. Magic as fuck.

So from one Mama with a heavy heart and tear-stained face to another, I want to say to you. I see you. I hear you. I am here with you. And this Christmas all I hope is that whatever unfolds, you know, somewhere, deep down, that you are loved. Always and forever loved.

hope

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