Coping with Epilepsy in the World of Education

by Kate Cory-Wright
Kate Cory-Wright (4)

This is the first ever guest post on my blog and comes out of a private conversation with a fellow #Nightshift group member, Kate Cory-Wright, which began on 16 May. She was inspired by an interview I recently gave about my own mental health.  Like me, she has also suffered from panic attacks. She also has epilepsy, which I have no personal experience of.  Up until now she has mostly kept her epilepsy experience a secret. Only a handful of people know about her condition. She feels as if she has been hiding a huge part of herself for such a long time and would be judged harshly by the English Language Teaching community if she spoke up.  I’m honoured that she has chosen to share her story here. It is a powerful testimony from someone who prides herself on a fostering a professional image. In the run-up to its publication, she admitted that if this ever saw the light of day, you would be invited to celebrate with her. That time has come.  Phil.

Short Bio

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Kate Receiving ESU award

Kate is an award-winning ELT author. She has (co-) written over 25 ELT books and an e-learning course for teachers. She has published materials with National Geographic Learning, Cambridge University Press, Macmillan, as well as website materials for National Geographic Learning, Macmillan and Cengage / Epals.  The photo here shows Kate winning the English speaking Union award.

As an international Teacher Trainer, Kate has over 25 years experience. She has given over 500 academic seminars, workshops and short courses in regions as diverse as Latin America, Africa, The Middle East, and Asia.

Kate was born in London and began her professional life as an EFL/ESL teacher. She currently lives in the mountains of Ecuador and in her free time, gives classes to disadvantaged children.

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Kate Positive Quote

Introduction

This year is my 40th anniversary of living with epilepsy. To celebrate, I’ve decided to ‘come out of the closet’. It’s not easy. I rarely talk about it or tell people I have it. For years I’ve tried to write this blog, but each time it ends up in the trash. Each attempt evokes painful memories and fears. Fear that others will treat me differently. Fear of the stigma of epilepsy. At the same time, I know that not speaking up is doing others a disservice. Keeping quiet doesn’t help other people who suffer nor educators who want to know more. So, following the fine example of Phil Longwell, who is helping to bring mental health issues out into the open, I’m going to try once more to share my experiences. If this blog ever sees the light of day, please celebrate with me!

Kate’s Story

My story is just one of many. Around 1 in 26 people suffer from epilepsy and owing to the fact that there are more than 20 kinds of epilepsy, I don’t claim to speak for everyone. The only thing we all have in common are seizures, caused by a sudden electrical surge in the brain. This can affect our whole body (‘generalised seizures’), causing us to fall on the floor, or it can affect just one arm/leg (‘focal seizures’). We might suffer 2-3 minutes of severe convulsions, small quick movements, split-second blanks (‘absences’) or other symptoms. If the seizures aren’t controlled by medication, they can be severe. If they’re controlled, they’re barely noticeable. Like migraines and other neurological conditions, no two people have the same experience. Mine is just an example from tens of millions.

Rewind 40 years to the late 1970s.

My long affair with the illness began with traumatic brain injury, which is the most common cause of epilepsy. I was 15 years old and cycling – without a helmet – at top speed. It was intended to be a fun afternoon of racing my cousin through the hilly English town of Lewes. It was thrilling. Until we came to a sharp corner, that is. I fell off the bike, hit my head, and lay unconscious on the road.

Shortly after that I began to experience strange ‘absences’, a kind of regular blanking out. I could hear someone or look at something familiar, without recognising it. My vision would go blurry. More than once I lost consciousness, while walking along the pavement, and stepped straight into the oncoming traffic.

Much of that school year is a blur for me, to be frank. The absences developed into a more severe kind of focal epilepsy called temporal lobe epilepsy or ‘TLE’, the same kind that the musician Prince had. I vaguely remember feelings of fear and confusion, panic attacks, scary hallucinatory experiences, and a strong sense of déjà vu. My friends tell me it was barely noticeable to them apart from the occasional jerk of my arm or leg and some incoherent mumbles. The main problem was the constant electrical thunderstorm in my head, which severely disrupted my learning throughout the 5th form – the last obligatory year at secondary school in England ending with the all-important ‘O’ level exams, as they were known.

TLE is the most common form of epilepsy in adults, yet there’s no cure, and it’s notoriously difficult to diagnose and treat. Doctors struggled to find the right medication for me. In the meantime, I drifted in and out of consciousness every few minutes due to seizures. Detached from the classroom. Adrift.

When the time came for the ‘O’ level exams, all I remember is turning over a paper and staring blankly.  You couldn’t request extra time in the exams for a medical condition in those days, which might have helped, but who knows? Anyway, I failed all eight ‘O’ levels, despite being a very high achiever at school and a regular prize-winner. It was a huge blow to my self-esteem.

The difference between having uncontrolled and controlled epilepsy is enormous. Life returns to almost normal again! So once doctors had found the right medication and my seizures were controlled, my dream was to return to school, retake my exams, and continue. Yet there was resistance at every turn: “Don’t retake the exams. They will make you ill again”; “Leave school. It’s too much for you”.  But I loved learning too much to give in. Despite the external attempts to limit my life, I retook my ‘O’ levels in the summer holidays, finished secondary school and then studied at university.

It may come as a surprise, but I didn’t experience much teasing from classmates. I suffered as a result of my teachers. It wasn’t intentional. It was a result of a lack of knowledge and awareness. One well-meaning teacher gave us a lesson in which we were invited to judge who we would employ from a selection of people, one of whom had epilepsy. She planned to challenge our choices after the activity, I assume. But it didn’t work for me. When my classmates said they wouldn’t employ the “eppy”, I ran out of the classroom in floods of tears. Another example was when I was prevented from taking part in school events “in case I caused a problem”. This meant sitting with the nurse and a boy with generalised epilepsy while our peers went to assembly, church and on school outings. While we waited indoors, we could hear our classmates laughing and screaming outside. We’d hear the engines of the school buses roar, as everyone set off for a day-trip to London.

There’s no denying that the feeling of exclusion hurt. Like every teenager, we just wanted to be ‘normal’!

The past is the past, however, and that was the late 70s.

Kate Cory-Wright (7)
Kate in her late teens at university.

To be honest, my story is nowhere near as traumatic as some peoples’ stories.  Many people have lost a loved one to epilepsy. Deaths occur when people fall during a generalised seizure. They also happen as a result of SUDEP (‘sudden unexpected death in epilepsy’).  Other people have been seriously injured from burns and bruises, because of how or where they fell. Some are housebound, while others have to wear helmets to protect themselves. Finally, only about one third of people with epilepsy ever find medication to control their seizures; many others only find a partial solution, according to ‘Epilepsy Action’.

In contrast, I’ve been able to lead a healthy, happy and successful life with epilepsy for the last 40 years. Has the epilepsy gone? No, I still have a mild seizure every four to six months. These would be more severe and frequent if it weren’t for my medications. They cost a whopping 20% of my salary, but they’re worth every penny.

Life’s not perfect. An unfortunate side effect of my strong medication means I experience extreme tiredness. I suffer from panic attacks, particularly when going onstage, because I dread having a seizure while in public. Lastly, it’s a strain to ‘hide’ my epilepsy. I have to take care to avoid the six triggers (i.e. missing medication, lack of sleep, extreme stress, alcohol, drugs, and flashing lights) but avoiding trigger situations frequently means inventing excuses for why I can’t join colleagues for a drink, take part in a conference social event, or go for an evening meal. Finding the balance is the key. I try to participate as much as possible, but also have to miss out. Obviously that’s a huge shame but a small price to pay for staying healthy.

Being simultaneously careful and bold is what has enabled me to achieve so much in my life. Epilepsy hasn’t stopped me from backpacking across Latin America, volunteering in Africa, or learning to scuba dive and paraglide. Nor has it prevented me from teaching, training teachers across the world, and authoring over 25 EFL books. OK, so I can’t drive or stay up late. But I can live, love, laugh – and importantly for me, I can have a fulfilling career in ELT/education.

I hope the suggestions and tips below help a little. For now, thank you to all, especially Phil, Katherine (Bilsborough), Cheryl (Palin), Lise (Minovitz) and others for your huge support. And now please raise your glass, because I’ve done it! And it only took me 40 years! Raise it high to the millions of people with epilepsy, especially to those who don’t have the luxury of leading a full life, those who can’t find or afford medicines, and those ‘in hiding’ who may want to share!

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Patternak Quote

Seven Tips for Educators

  1. Find out the details, rather than treat everyone with epilepsy the same way. Should you have a student or trainee with epilepsy, it’s important to ask them which kind of epilepsy they have, what their symptoms are, how frequently they have seizures, and most importantly, if they are on medication.
  2. Colleagues will appreciate one question: If you have a seizure, what can I do to support you?
  3. Be aware of who doesn’t need help. People whose seizures are controlled are unlikely to need help. According to Epilepsy Action: “many children, once their epilepsy is controlled by medicine, are unlikely to need any extra support, although a side effect of the medication is to feel tired”.
  4. In terms of classroom management, consider: where we should sit (next to a friend or the door), how much we can do, and learning needs. We may need more time when taking tests or exams. What we can and can’t do depends on the type of epilepsy we have as well as whether we’re taking the right dose of medication.
  5. Understand that students may also miss your lessons due to medical appointments.
  6. Should an attack occur in the classroom, bear in mind that you won’t have any warning, and you can’t stop seizures once they start, though, you need to have a back-up plan for what to do with the rest of the class on those occasions. The person having a seizure needs plenty of air. Remove sharp objects away from the person. Stay calm, let it run its course, and give us time to come round afterwards, which might mean sitting with us for a while. You can learn ‘seizure response’ (see the video on Epilepsy Action).
  7. Be sensitive about preferred terminology. Personally I don’t feel at all offended by words like ‘turn’, ‘attack’ or ‘fit’. However, I prefer the phrase ‘people with epilepsy’ to ‘epileptics’. Epilepsy doesn’t define who we are!

Some Useful links:

Postscript: Kate is currently receiving treatment. She is exploring Cognitive Behavioural Therapy and practising mindfulness. She is beginning to see a pattern in her thinking. It is helping her enormously to talk to others in epilepsy groups, starting to share her story and raise awareness in the wider community of what it is, what it is not and what to do.

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Credits: Epilepsy Awareness Ribbon Vector Image c/o Pixabay using a CCO licence.  All other photos and images used by kind permission of Kate Cory-Wright.

Reference: Bowers, E. (2013) Overcoming the Stigma of Epilepsy. Available at https://www.everydayhealth.com/epilepsy/overcoming-the-stigma-of-epilepsy.aspx. Accessed 2 June.

94 comments

  1. Thank you, Phil, for leading the way. Your tremendous courage and honesty when talking about mental health issues was what finally helped me share my story.

    Liked by 1 person

  2. Kate – I am celebrating loudly all the way up in Canada! It takes courage to share pain from the past but I hope you feel that you will be supported as an incredible member of the global ELT family. I know that there are teachers reading your story someone who will feel empowered and stronger.

    Liked by 1 person

    • Thanks, Phil! I’ve tried to get in but it won’t accept my email!

      I’m blown away but the beautiful comments I’ve received privately: people who want advice for a loved one with epilepsy, people who’ve said they’re suffering from a different illness but feel r less scared as a result of my story, former colleagues who’ve said how much they wish they could have supported me better (not their fault, obviously), and others who say they understand me so much better knowing this. Then there are the real learners who’ve checked out more info or are dancing with joy at how much they learned. Sweet! It’s sad to see the responses of a select few (I’m sure you know who I mean) who probably haven’t even read it, but know it all anyway, insist it’s no big deal, or that their “issue” is worse! It’s not a competition! Must tell you something funny – I don’t usually gossip about others but I cracked up laughing when Varinder said she has it and it doesn’t hold you back (again, she clearly didn’t read it, because those who are housebound, can’t work, or are burned might not agree). Anyway, she told me ages ago that she had a generalised seizure once after she gave birth. So I invited her to share her experience in my (someday future, lol) blog. She said she didn’t feel comfortable about that, so I let it be… Now I’ve come out, she had to be one better! Anyway, I’m focusing on the positive! A big hug x

      Kate Cory-Wright Freelance Consultant, International Teacher Trainer, and ELT author. http://www.elt-consultants.com

      >

      Like

    • It’s been a pleasure and an enormous relief, to be honest. Glad you enjoyed it and look forward to any ideas you have on where to go from here!

      Liked by 2 people

    • Thanks, Matt. I’ll never forget your perfect response when I told you I have epilepsy. “So, if I’m around when something happens, what can I do to support you?”
      So non-judgemental, non-pitying – in true Matt style, it was supportive and practical 🙂

      Liked by 1 person

  3. Thank you for sharing, Kate. As someone who also suffers from a chronic health condition that sometimes limits what I can do (and esp. my energy levels), I can totally relate to what you said about making excuses for not doing things. I don’t keep my condition secret, but sometimes when you’ve just met someone in a professional context and they’re trying to invite you out for a social event that you know you’re not up to, it’s easier to make an excuse than to try and explain the reality.

    Liked by 1 person

    • Hi, I’m sorry to hear you experience a similar situation with tiredness. It tends to be hard to manage at times, especially in work circumstances. You can’t really tell a brand new contact – possibly a potential employer – that you can’t go out with them as you need sleep.
      Wishing you the best of luck with your health condition.

      Liked by 2 people

    • Likewise, Barbara. You’re one of the few people who know just how many years I’ve been meaning to write about this! Hopefully the next one will be more focused on education itself and specifically aimed at teachers, materials writers, and even conference organisers (there are so many possibilities, judging by the enormous amounts of feedback!)

      Liked by 1 person

    • Thanks so much for your kind and honest message. I’m incredibly sorry that your education was also held back by epilepsy – and that in turn it’s affected your ability to get a good job.
      Do you think we could talk about it more in private? I’d like to know what you think teachers can do to improve this awful situation and make education more accessible for people like us.
      If you’re interested, please email me on kcorywright1@gmail.com.
      Wishing you all the best, kate

      Liked by 1 person

      • Wow. That’s shocking. I imagine your story is more recent than mine too 😦
        Thanks for agreeing to talk privately. I’d really like to do something to raise awareness among teachers, but I need to better insight into what’s going on today, plus other people’s opinions on what needs to be done. Look forward to talking!

        Liked by 1 person

      • The fact that you’re young is great!
        Teachers can’t learn much from a middle-aged woman who had bad experiences back in the late 1970s! They’d probably prefer to hear from young people like you.
        Let’s talk more in private and see what we can do. Your story is really important and could be very helpful to teachers (and future students). I’m still worried that many teachers don’t get it and aren’t sure how to help… Your story should get out there ideally, but only if you want to and when you feel ready. Hugs, Kate

        Liked by 1 person

      • i suppose it’s good im ypung in some ways lol
        true they prob would want hear more from someone my age more as there’s no excuse really as everyone knows about epilepsy or at least something about it.

        yeah some teachers really don’t get it at all

        Like

  4. i suppose it’s good im ypung in some ways lol
    true they prob would want hear more from someone my age more as there’s no excuse really as everyone knows about epilepsy or at least something about it.

    yeah some teachers really don’t get it at all

    Like

    • Hi Lauren, if you haven’t joined Women with Epilepsy on Facebook, I highly recommend it. Being with thousands of women with similar problems who support you is ideal!

      Like

    • Many thanks. There are so many millions of people with inspiring stories and luckily, Phil (who has an extremely inspiring story himself) has acted as a conduit to share these types of stories- through webinars, this site, and talks at conferences.

      Like

    • Thanks for your kind words. After years of hiding, I’ve come to the conclusion that so many of us have something to share, and we’ll make life easier for others if we do!

      Liked by 1 person

    • Thanks for the encouragment! As others on here will attest, it’s not always a perfect ending and of course we all find that our past illnesses aren’t past at all – they still return to bother us, but we do what we have to do…

      Liked by 1 person

  5. Hello! This is my first visit to your blog! This is my first comment here, so I just wanted to give a quick shout out and say I genuinely enjoy reading your articles. Your blog provided us useful information. You have done an outstanding job.

    Liked by 1 person

    • I have allowed this comment, but note that I have binned many comments for this article as they were not related. I can see that this one originated from India and don’t believe it adds anything to the discussion. But I have left it on so I can make this comment about ‘spammy’ ones.

      Like

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