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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The Best Conversation I’ve ever had

What’s the one thing you’d change about our life as parents?

I wish that I didn’t have Epilepsy.

I don’t.

Really?

Yes. Because your epilepsy has encouraged me to be a much more active Father than I might’ve been. It doesn’t make me very proud to admit, I mean, I’d always wanted to be a parent, but the way our society works I think that if you didn’t have epilepsy I might’ve just done less. I don’t think it would’ve even been conscious but, the truth is, it’s likely I would’ve done less. And I might’ve thought that was OK. And that would’ve been sad. I wouldn’t quite have known how intense being a parent is and I wouldn’t have felt so involved or bonded with our baby so early on. I wouldn’t have believed that going to work was a break or realised how Sexist society still is.

Without epilepsy I might’ve allowed myself to say things like “Well, I have to go to work, so I can’t get up at night” or (at 6pm) “I had such a full on day at work, I’m going to have a rest…” or “I’ve been at work all week so I’m going out with the guys this weekend”. Seemingly little things which add up to hours and hours of my daughter’s life. Of our life. Of experiences that I will never have again. Of seeing her crawl and wave and say ‘Papa!’ of dirty nappies and endless bottles, of  night after night after night, of 1,2,3,4,5am of laundry and cooking and trying to get a vegetable into her. Of what it’s all about, of what I chose when I chose you and we chose to have her.

It’s strange to admit but I guess we have epilepsy to thank for encouraging me to ignore Societies acceptable-male-behaviour to remind me that I am not the Babysitter I am a parent. Equal in all ways to you. We are in this together as partners and having Epilepsy in our lives reminds me of that. And that is an immeasurable gift.

24/7

24/7

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Everyone knows someone / Epilepsy Awareness week

“Stop staring” he said “Stop staring!” he jumped up and ran past me knocking me out the way as he passed.

He turned as I stumbled, confused. Looked at me again “why’s your mouth open Spaz?” he leered at me, copying my wobbly stance. “shut your mouth spaz! Shut yer mouth”.  I stood up straighter and tried to close my mouth. I didn’t think it was open. But then a second later “shut your mouth! What’s wrong with you?! Shut your fucking mouth.”

I tried to bite my lips together, my back was against the wall. A rabbit in the headlights.

………………………

Seventeen years later and tears still spring into my eyes when I remember that and my heart beats too quick as I type. The days before I was diagnosed when I was having absences continually, but hadn’t yet had a Tonic Clonic seizure. Days when I was so confused somedays I’d put my clothes on back to front. My mouth would hang open and teenagers keen to be in with whoever the people to be ‘in’ with where back then would do what teenagers often do best; seeking acceptance and recognition they return to their tribal roots, get low, get nasty and shout names. Just to look the big man. Never thinking that actually it could very well be their turn one day to suddenly not know their name. To find they’re the ones with their mouths hanging open. It could be them to wake up on the pavement with strangers staring at them and it could be them having ‘spaz’ shouted at them at the end of school.

I thought this was a good short story to share as it is Epilepsy Awareness week. The chances are you know someone with epilepsy. Even if you think you don’t, really, you do and/or you will very soon. Epilepsy is the most common neurological condition. To raise awareness and break the stigma of this fact Young Epilepsy and Epilepsy Society are running a campaign called Everyone Knows Someone . If you have a minute check it out and next time someone you meet seems ‘odd’ remember not every disability is visible. Be kind. The hardest battles are the ones people say nothing about.

ability

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Feel the Fear and do it anyway

I took my daughter to her first swim class today. I have been so looking forward to it, I’m a Pisces, ocean loving, mermaid seeking, selkie-believing, surf(-tri-)er, water lover and I’d always imagined the joy of being in the water with my babe. But as usual, epilepsy raised its ugly head and it didn’t start quite as I’d expected.

I woke up before she did, my stomach a knot of anxiety. Angrily I snapped at my husband and organised our swim stuff like it was a military operation. There seemed to be so much of it! I made a bottle to take as furious tears dripped down and splashed onto the teat. I slapped them away, willing myself to get it together. You see, last night a letter from the pool had arrived. One of those ‘health-check’ forms, you get at every new place you join. I dread those forms.

By writing ‘epilepsy’ on them, I feel like I am giving permission to others to tell me what I am and am not able to do. It’s as if I am awaiting their judgement on my ability to simply be a human being, like you. In the past I have been turned away from; gyms, massages, beauty treatments and swimming pools when I’ve told the truth on a form. Those experience sit heavy in my heart, bring tears to my eyes and stick in my throat. Being denied access to an activity due to people’s ignorance of epilepsy is deeply disturbing for me. The memories make me question myself, doubt my ability, wonder if I am unsafe, unfit and most disturbingly; a danger to others? I know I am not, but events like that make me question myself. Every question burns a little deeper. Because of this, often, I am somewhat ashamed to admit I have lied on forms like that.  I was tempted to lie on the form for these swim classes. I didn’t want the hassle. I just wanted to be like everyone else and enjoy the water with my bub.

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But then I thought what do I want Rue to learn from this? Do I want her to see her mother lying, ashamed and frightened? Or do I want her to see her mother being proud of who she is, telling the truth, feeling the fear and doing it anyway? I am a very experienced swimmer. My medication works. I knew, as much as anyone can ever know, that I would be safe. And then suddenly the choice was obvious. I wrote epilepsy on their form. Kissed my babe tight and off we went. And I thought, ‘I can do this, I am strong.’

I am strong because I tell the truth

I am strong because I have an invisible health condition

I am strong because I think I might accidently hurt my baby

I am strong because I face judgement daily.

I am strong because I face ignorance

I am strong because I have flashbacks of seizures

I am strong because I am Epileptic

I am strong because that doesn’t define me

I am strong because I think all of this and still look after my babe alone

I am strong because I feel the fear and do it all anyway.

And then the class was done. They didn’t read the form infront of me, so who knows what next week will bring but for now I feel better. I feel strong. I hope Rue sees the strength she inspired in me and hope that she learns to be strong too.

Thank you for sharing my journey and reading my words, you all give me strength too.

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