by Kate Cory-Wright
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.
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.
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!
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.
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!
Seven Tips for Educators
- 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.
- Colleagues will appreciate one question: If you have a seizure, what can I do to support you?
- 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”.
- 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.
- Understand that students may also miss your lessons due to medical appointments.
- 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).
- 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:
- https://www.epilepsy.org.uk/ Epilepsy Action, an excellent charitable foundation provides resources for teachers and students, training videos, materials for teaching children about epilepsy, and facts for educators.
- https://www.everydayhealth.com/epilepsy/guide/ Useful factual information and some myths debunked.
- https://www.webmd.com/epilepsy/guide/children-school#1 Practical information for dealing with your child’s school.
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.
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.